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Do you have a great Autism story or tip you would like to share? We’d love to hear from you!

Your tips and stories will be printed out in either a future newsletter or it may be published in one of our future books with your abbreviated name city and state.

Remember, your story could help someone else!

Click here to tell your story today!

Kindest Regards,

Ernest
Autism-pdd.net
Please leave this up a while. I'd like to think about what to say. There is so much we've lived through. So many things have worked out for our good. If simply to make me a stronger more confident parent for my precious jewel, my gift. Janet

I have a soon to be 16 year old boy with PDD/Autism. When he was 6, they originally diagnosed him with ADHD, Speach and Language delayments. We have had IEPS and school since he was about a year old.

We've been to all kinds of doctors and finally they changed his diagnosis to PDD which makes so much more sense than all the other stuff. He's very high functioning. In kindegarten, he used to repeat words, drove the teacher nuts...in one day he repeated "Cheetah" 164 times during class. She actually had someone come in and count.

He did not miss a spelling word until 5th grade. As we would drive down the streets, he read every street sign. We had to go to the school and beg them to teach the 'Y' rule because I was so tired of him correcting the Commercial on TV for Arby's. He kept getting upset because he insisted that it was "Arbuys".

We have been very fortunate at the school, I did have to fight in the beginning to obtain the services but once they figured out that I was not going to back down, I have not had a problem since. They have even provided a laptop for him to take notes on at school because of his writing.

His grades at school usually averaged around a B or C, until we hit High School. When he hit his Freshman year, he actually made Honor Roll for the first time and school has really clicked for him.

We seem to be having mainly 3 problems with him now. 1) Socially - how do you explain boy-girl relationships, feelings and how things work to him. Everytime we try and I think I have it. We have another broken heart. Homecoming is this weekend and he just wanted a date, but couldn't get the courage up to ask a girl and then he thought he did but after I asked some questions found out he didn't.

2) Anger out bursts - Like everyone with Autism - if things do not stay within their routine and the noise levels gets to high he can not take it and we have an axiety attack. We're on Zoloft but we still have some spells.

3) He idolizes John Walsh, America's Most Wanted. Every Saturday Night, that's on my TV. He also reads books about Serial Killers. Mainly he checks them out and just skims through them to see how they got arrested and such. The librarian felt compelled to report it to the Police. Luckily the Police Chief knows us and my son and knows that he's harmless.

How do I deal with my three problems with him? Any advice would be greatly appreciated.

[QUOTE=MsSteelersFan]

[QUOTE=tabitha] In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it. [/QUOTE]

Here is Ernest's starting post about this thread and the link for the tips and stories

[QUOTE=ernestpr] Do you have a great Autism story or tip you would like to share? We’d love to hear from you!

Your tips and stories will be printed out in either a future newsletter or it may be published in one of our future books with your abbreviated name city and state.

Remember, your story could help someone else!

Click here to tell your story today!

Kindest Regards,

Ernest
Autism-pdd.net
[/QUOTE]

[/QUOTE]

hey mommy,

good to have you. the board is great. things will be okay. just have faith, and things will look brighter. i have a son matthew that is adhd, motor skills problem. and possible aspberger disorder. got appointmet oct 4th. if you need a shoulder you can e mail me littlesis001@yahoo.com

lots of hugs,,,,,,,,,,,,

sherri

I am new here and have an autistic seven year old, he was diagnosed at three and it has been a rollar coaster for all of us. [QUOTE=MsSteelersFan][QUOTE=MsSteelersFan]

[QUOTE=tabitha] In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it. [/QUOTE]

Here is Ernest's starting post about this thread and the link for the tips and stories

[/QUOTE] [/QUOTE]

My story involves two of my four beautiful children, Junior and Fabian, both with Autism. It is a hard life to handle two children with ASD and two other children who still need the attention of both parents.

On a daily basis I worry and wonder, how is their day going to be, are they going to have good days and smile and play or are they going to have bad days and cry and get hurt.

Junior who has improved in his speech skills has not been able to control his emotions and behaviors. Whenever he is frustrated, he throws himself against the wall and sometimes does damage. One instance was a day I will never forget. This day showed me how resilient children are, even when they are as special as our autistic angels. He was so upset he threw himself backwards and his head hit the window sill and cracked his head open (no bone break thankfully). He was crying from the initial shock whereas I was crying because he was bleeding so much. Needless to say we were transported to the hospital via ambulance and forced to wait in the waiting room. Meanwhile, he was still bleeding and all I had was gauze to hold the bleeding down. Once he was seen by triage, he was bandaged and again we were told to wait in the waiting room. Throughout this ordeal, I was a nervous wreck, crying and upset, I was by myself with him and receiving no attention. Somehow he noticed my emotion and started singing a song he learned in therapy that day and began to dance a little bit with it, I'll never forget it, the song was Row, row, row your boat. Even though he can't speak clearly, I understood him and he placed the biggest smile on my face and he immediately smiled too. We kept singing together the entire time we were there. After about three or more hours of not seeing a doctor, my husband finally arrived and we went to another ER and received the help we needed but Junior, a two year old, was the one who took care of me when it should have been the other way around.

My other son Fabian is completely nonverbal. The only sounds we hear do not contain any meaning or significance and are mostly to satisfy sensory needs of his mouth. His physical therapist had begun teaching him some of the basic sign language words so he can express himself, mind you he is only twenty months old. I had no idea of it until I sat in on a session with her. She had told me to work with him on a sensory diet that involved tickling because he really enjoyed it. I asked her, but how would I know that he wants to continue? She told me she had begun teaching him the sign for "more" and she taught me and to reinforce it when I was giving him input. About a few days after, I was tickling him on his bed and all of a sudden he looked at me, grasped my hands and signed "more". I immediately looked at him and he smiled. I was able to understand him! - and he knew it too!! Now I know when he wants more of anything. His little hands grab a hold of mine and we sign more together.

On these occasions, I have fallen in love with my children all over again. They are not any better or worse than my other two children without ASD, they are just as special and unique and fill my heart with just as much love or joy as the others do. All four of them are my miracles of Heaven!

Thank you for allowing you to express my life with my boys, thank you.

Krystal, Florida

My son, Paul, is now 16-years-old. His original diagnosis at the age of 5 was ADHD. From there we moved to Childhood Schizophrenia. After living with that devastating diagnosis for a few years, I said to my son's Psychiatrist, I think he may be autistic not schizophrenic. Guess what this Doctor said to me, "That's just wishful thinking." Has anyone on this board every wished their children were autistic? As you can imagine, we did not go back to see this quack. We got a second opinion from a renowned child psychiatrist who insisted he had PDD. We have been through it all.

Hi. I'm new to the forum and going thru a lot of grief these days. My son Dylan was born in April of 2000. He was such a perfect little boy. He was beautiful. He could hold his head up very early, was eager to try new foods (as soon as he learned to crawl, he would get to your unattended plate before you could!), I have a picture of him in my arms smiling at 4 days old...

My husband came home from Iraq to spend three weeks here with us. I had moved since the last time he'd been home, and he was helping me unpack the photo albums on his last day here. One of the albums was Dylan's first album. We looked at the pictures together and realized that Dylan was fine until after his first birthday. The boy who spoke and asked for cake, said please and mama by 9 months lost all that. At 13 months he sat slack jawed and drooling, with puffiness under both his eyes. The awareness present in his earlier pictures was gone. My husband and I tried not to cry; we realized that something (probably something we'd done since we were responsible for all of his needs) caused our lovely boy to disappear into the darkness of his own mind.

John left last Wednesday to go back to Iraq for another year. I keep looking at Dylan and sadly wondering and hoping that I can do something for him. He is on Ritalin for ADD and he has been diagnosed as "significant developmental delay". He needs Melatonin to help him sleep at night. His school isn't doing what he needs done, and I'm debating leaving nursing school (I have 3 quarters left) to just be with him 24 hours a day. This is killing me. The thought of my boy maybe never being able to drive, have a job, live on his own... it's eating me alive. Personally if I were in that situation I'd rather be dead, so to see him so young and not to have a better prognosis is killing me.

He gets ABA. I have to fire one of his therapists tomorrow, because he isn't doing any good for Dylan. It makes my throat hurt to think of the little boy that could have been. I'm so angry at myself. I have to stay strong for my husband and my daughter but damn I just don't understand. The school doesn't want to help me, and all anyone can do when they work with Dylan is look at me with sadness and pity in their eyes because he is so sweet but he just doesn't understand the world around him. I'm tired of seeing sadness in other peoples eyes. Damn it, I can hardly control how I feel about it. What good is pity? Maybe if his teachers tried to help him. Instead he's being discriminated against. I can't handle the thought of how difficult his next 12 years of schooling will be...

Thanks for listening and reading.

I've read all these posts with tears of encouragement, sadness and empathy... my son Ian-16 was just diagnosed with High Functioning Autism three weeks ago. Dx'd PDD/NOS as a preschooler, we were told that when they got his speech "working' after two years of special ed and he wasn't drooling or crying everytime they went outside that he was now 'fine' and ready to mainstream. As this occured right as we moved to a new city and switched to homeschooling, we never realized what PDD/NOS meant... until now. It breaks my heart to realize what we could have, would have or should have been doing had we known. A few years ago I ran across an article about a new field of research known as "Aspergers"...my heart lept, it sounded like our special little "geek" of a cherub ...except for the delayed speech. This led to further research and a personal dx of HFA agreed upon by our pediatrician. She didn't think it was necessary to pursue an offical dx since Ian was then doing fine in school (since we were instinctively adapting to his strengths and weaknesses) - and then came the day when our math genius announced that he hated math and was bad at it. What was he talking about? In third grade he passed a test at eigth grade level because I answered a seemingly harmless question about how to do a math problem he'd seen at the end (eighth grade section) of the test... he extrapolated that info to help him pass all the other sections! But now he was "bad" at it... first he appeared to struggle, then stall and he has regressed for the last year back down to fourth grade level. The diagnosing psychologist explained that Ian has a lot of trouble holding multiple pieces of data (IE: numbers) in his head, manipulating them and then outputting... AHA! That explained so much...

So that devastating day when we drove the six hours home from the UW Autism Center trying to sound as happy and positive as Ian was (he was THRILLED to have an explaination for others) and crying inside about the finality of the dx we had "known" for two years... Ian announced, "Hey, there's another pattern on my watch!" "What kind of pattern?", I asked. "It says, '616' and that's a pattern" he replied matter of factly. Skeptically I asked, "so it's a pattern because of the sixes on either side?", "Yes", "Well, what if it was a 2 or 3 in the middle?" "Then those would be patterns too." "Why?" "Because they all go into 6." My husband's face lit up as he drove through the rain... "Ian! Those are all common denominators!" "What would the numbers in the middle be if they were 8's on either side?" I countered... "Um, 1,2 and 4" "Ian!" I cried, "Those are common denominators too!" "Wow!" Ian exclaimed... "so that's how that works..." My tears lifted for the moment just knowing that we might finally get beyond being "bad at math."

Hello everyone,
I'm new to this forum and have read some of your
stories. I work in Early Intervention and several of my
clients are on the spectrum. I admire and value the
resiliancy of you all, and even though I am not a
mother or have a child with special needs, I see first
hand the hardships and sacrifices of your journey.
With all my clients I not only work with the child on
speech (both receptive and expressive), gross
motor, fine motor, and cognition, I also spend some
time with the parents. I feel that many parents need
to grieve for their loss and have an emotional outlet.
For example, parents may feel angry and guilty about
their child having autism, but may not have the social
support they need. In our EI program, we also have a
parental support group where parents come
together and discuss, reflect, as well as get to know
other people who are dealing with some of the same
things they may be going through. For those of you
whom have recently found out your child is on the
spectrum, I am interested in hearing how you felt
and what you did to seek the emotional support you
needed? Or perhaps you don't feel supported but
would like to know more resources and strategies
to help your child. Whether I get any responses or
not, I just wanted to write something to the parents to
say that you are the experts to your child. We as staff
are also students who need to learn from your
family. Know that when you have a gut feeling that a
diagnosis doesn't make sense or feels incorrect,
you should definitely not be hesitant to get other
opinions. Most evaluations and assessments occur
between 2-2.5 hours, a very short period of time
compared to how you've been there for your child
since they were born. And lastly, if you feel like hope
is not within reach, know that people such as
yourself give me the hope and inspiration to help
children and families.     Ethan started preschool when he was three. His teacher was new and seemed really in over her head. She started reporting that he was hiding under tables and kicking out at the other children. He ran away a lot and she had to put up a baby gate to keep him in the room. Also, on the day of his orientation he immediately went to the dinosaurs and lined them up in one nice long row. Which wasn't troubling to me since he had been lining stuff up since he was one. He didn't play with the other children and when I got blank coloring sheets I asked her if he colored. She said no, he just lines the markers up. It was very hard to understand him and he didn't always respond to his name really well. Still I didn't think anything about it. I thought he was just a little quirky.
    I realized something was wrong in January of last year. He started gymnastics at our local rec dept. He refused to get anywhere near any of the other children. He stayed in the corner and wanted me in there with him. He screamed and threw himself down onto the floor when I tried to get him to join the other children. He threw his shoes across the room. But when I would try to take him out of the room he would cling to the door post and scream some more. Finally after 30 minutes (the class is only 45 minutes) he calmed down enough to jump on the trampoline. I just stood outside the door and cried because I knew something just was not right.
    So...I go to the pediatrician who listens and brings up Asperger's and tells us to wait until he is four and go to the Marcus Institute for an evaulation. Well while we were waiting, since this was in February and the appointment I made was for November, the speech therapist recommends we have his hearing checked since he was failing some of the low noises. We did that--his hearing was fine. He started chewing on things. He would chew his shirt, he would chew sores onto his hands. He also started scratching. He would scratch himself until he bled. One morning I changed his shirt and his underarms were bleeding. So I decided not to wait on the Marcus Institute. I made an appointment at Emory who could see us 5 months earlier. In the meantime we see a psychiatrist who says that he can evaluate and diagnose for autism (oh, and by the way, our insurance doesn't cover mental health and no one takes it). So we spend $300 dollars to hear that he doesn't feel he is profficient enough in his research to diagnose Asperger's...
    So to sum things up we took him to Emory and they diagnosed him and he is going to pre-k this year and doing wonderful. When I first started to think there was something wrong I was told by family and friends that I was overreacting, that I was making it into something it wasn't. For every little thing, I would say the scratching is really bothering me and someone would respond well I scratch too sometimes. Yeah, do you scratch until it bleeds? Now, that i'm worried about my one year old I talk about it less. I keep it to myself more which is why i'm telling ya'll all about it. Thanks for letting me vent!

Hi everyone,

My name is Ed Saldana and I am a single father of a beautiful 11 year old girl named Marella with Autism/PDD-NOS. When my daughter was 4 she started to develop delays, her pediatrician at the time suggested we wait. He was sure that she will start to progress. That was one of the worst desicions I ever made. She still did not speak so at 5 she was diagnosed with PDD-NOS. That was when my wife, and her mother left us. I was all alone, and felt like the whole world was coming down, but when I looked into my daughter's eyes I knew I had to do everything I could for her. She changed my life and my world, she changed me. She started out in an autistic program through the local school system and she loved it. She met kids who accepted her differences and she developed strong freindships at her elementary school. I worked nights so I can be there for her during the daytime and I swore that I would make her as happy as I can. She began speaking little by little and her behavior problems have all but dissapeared. She is now 11 years old and she is a very happy young lady. I remarried and my wife loves my daughter like she was her own. Marella calls my wife her barbie doll because my wife has blonde hair and blue eyes. They play dress up, share stories, swim and all the girly rituals you can think of. Just this year we have reached another stumbling block. She is moving onto middle school and all of the close freindships she has formed in elementary, she will not have anymore. The middle school that has the autistic program is out of the area, so all of her old freinds will not be going there. Marella has started to express her feelings a little bit more and I know she is sad inside. She would start tearing and I woudl ask her what was wrong. She would say "I am very sad, I am not happy at all". I would ask her why are you sad? She would reply "Because I am not happy!" I would ask her "Why are you not happy?" She would reply "Because I am very sad! A few minutes after going through that she would ask what middle school each of her old freinds were going too. I know she was waiting to here me say the name of her middle school but I did not. It is heartbreaking to me. Autism is a very powerful disability but I know every child can overcome it. I would not have had it any other way. Marella has brought sunshine to many people's lives and she is in every thought that I have, every second of every day.

Since early intervention is not an option for me, I am still looking for a program that focuses on late intervention or intervention with older autistic children. Everywhere I go I keep hearing about "early intervention". I agree with this however there are many children who were diagnosed when Autism was not as widely accepted or realized. Autism is nowhere near a new epidemic. There are alot of children who are in the 9-15 age range who need help.

Thanks for letting me vent a little and for letting me tell Marella's story. If anyone has any comments or would like to share their story, just post back. You can also email me at: TheLastPicasso@yahoo.com

My daughter was kind of slow learning how to roll over, crawl, walk, talk, etc. She seemed to study us and then whenever she decided to she would just do it like she had been doing it her whole life. She just had to want to do it. My spouse when Lovebug was about 1 and a half to two years old started suspecting there was more wrong than just Lovebug being lazy or stubborn. We started getting her checked out and discovered she falls under broad spectrum autism and she is also developmentally delayed. She is very high fuctioning and super intelligent. There are however times when she is having a meltdown that it is very obvious she is different than other kids. She has Sensory Integration Disorder as well. I would take her to the park and due to SID she was scared to climb and do things the other kids were having so much fun at. I however started throwing her to the wolves so to speak. She would sit at the top of the slide but not slide down. I went up behind her and just pushed her so she would slide down and she loved it. She has been getting help. First with in home visits now at a school for three hours a day. At the park now she is unstoppable; there isn't anything she won't do. Going to school and getting socialized with other kids has helped tremendously.

p.s. Sorry the post was so long. It's my first time and I sometimes get carried away. My best moment so far in this rollercoaster is that after 2 9weeks of kindergarten JOrdan has finally learned how to spell his name. He came home and said I tell you. J O R D A M no N. Now kisses! I tell you this much he got more then kisses that night.[QUOTE=Emerald Lady]

Thanks for listening and reading.

[/QUOTE]

Today is my first time on this website. I am concerned about my 3 year old son (he will be 4 the day after Christmas). For about a year I have been taking him to his doctor complaining about his delayed speech and the tantrums that he has. His doctor told me that he's only a baby and I should wait until he starts school before getting him tested. I wasn't satisfied with that so I found a developmental speciaist. He's now is speech therapy. The closer it gets to his birthday the worst things seem to get. He's now throwing himself against the wall, he broke a kitchen chair and I can't go shopping with him unless i'm buying things for him (that's the only way to keep him quiet). I want some answers.... Is there something that I can do now!! My mother keeps telling me that something is not right with him.... There's no reasoning with him. He doesn't fear punishment and EVERYDAY is a chore. Should I wait? If so, what am I waiting to find out?

I am just extatic. I met Nikko a year ago, he is 8 and an angel. He is considered highly functional Autistic. I never knew somebody could work their way into my heart the way that he has, he understands me and I know it. He is very smart and fascinates me. I accomplished something last night, never has anyone been able to comprimise with him, but last night with me onlooking he willingly took his medication for his lung infection. It is so amazing the feeling you get from an accomplishment such as this. Then as i was leaving I turned to him and said "good bye angel" and he turned to me looked me right in the eye and said "good bye angel" and gave me a hug.

Hi, I am a single mother of 2 teenage sons and my little girl Leila. leila
was
doing fine, at 9 months she said her first word, "book". Shortly she began
saying other words, kitty, daddy, bye-bye, pretty, ball,and a couple others
I
cant think of right now. Then about a month in a half later, she learned to
walk, and stopped speaking. i thought maybe she was distracted by the
novelty of walking but it is now December, she is 16 months old and has
not
regained speech. She no longer responds to her name, eye contact is
minimal, no more kisses

, changing her diaper is like rwrestling a
greased pisig... I have to pin her down on the ground with my feet on her
shoulders because it is the only possible way of changing her! She does
not play with toys properly, she has also started mouthing/ licking things
and also seems to want to nurse like a newborn again, she hates her
fingers or toes being touched and the child runs with abandon any chance
she gets... practically all day long... running running running! Also likes
to twirl socks.

So all these combined with the loss of speech... ECI came yesterday for an
initail screening and she has an eval scheduled with them next week. I
was told my daughter has some definate sensory issues and
coomunication problems ( DUH!) However I was told if I want an actual
"diagnoses" i have to take her to developmental peditrician... ( not having
much luck finding one... the ones I found have a 10-11 month WAIT!!!!)

Meanwhile...I am saddned,as she was fine ... but then its like watching a
light bulb go dimmer and dimmer... very slowly... I have so many
questions... and I am emotionally tired... I dont know how I am going to
get us through this....
Hi, I am 28 years old and have PDD-NOS. I had a very hard time growing up. My social and motor skills were terribly affected by my disorder. I was very smart and always advanced for my age but I had very poor social skills and few close friends. I also had some health problems like kidney infections and had to have my uretha enlargened. I have no idea if these problems had anything to do with my autism. I was also very sensitive to certain sounds.

Cole was a normal baby, up until age 5 months. Then the severe asthma set in and he practically spent 6 months in the hospital. By the time he was 11 months old he had been in the hospital 27 times including 3 proceedures and surgeries. He got on a new medication for toddlers and his asthma and reflux seemed to stop. By the time he was 2, we all noticed his behavioral problems. He would bang his head on the floor and walls. He tantrumed constantly and he had no idea who we all were. His sister didn't even exist to him and he had absolutely no auditory processing. We all thought he was deaf and so I took him to a specialist. The ENT said the asthma caused a lot of fluid to build up in his ears and he needed tubes. This was supposed to increase his vocabulary, which currently was about 5 words (mostly relating to Blue's Clues). The tubes were put in 5 days after his 2nd birthday. The doctor said we would see amazing changes in his ability to speak and understand spoken word. UM, no that didn't happen at all. We were supposed to wait 3-6 months to witness a change, but I didn't buy that so I made an appointment with the local Children's Therapy Unit. The SLP that we saw was amazing and didn't beat around the bush at all. We were told that he had major developmental problems and needed to have a PT eval done next to determine his balance and equilibrium problems as well. Cole could walk but he fell every three steps and couldn't negotiate between hard surfaces and carpet. He never caught himself when he fell and couldn't go up and down stairs. He was a very late walker (16months to maneuver without furniture totally) but the doctor's said it was from the hospitalization and all the weight he had gained from the steroid treatments for his asthma. (he was like 20lbs at 2 months and 34lbs at 8months) His weight is normal now, he weighs 34 lbs at age 3. So with our weekly Preschool Language Group info in hand we went to the PT for an eval. She diagnosed him with developmental physical delay, scheduled him for weekly appointments and sent us to an OT for Sensory Integration testing. Guess you know that he had that too! And another weekly appointment was scheduled. We were referred to the local Birth to Three service and they evaluated Cole and determined he qualified to have all of the above paid for by them as well as sending another therapist to our home to teach Cole how to play. At this point he couldn't even ride in a car without screaming around the corners, and he had no friends at all. That Christmas the 'elves' built my children a playroom which happend to include a platform swing, ball pit, slide, climbing toys and 3 other swings that could be changed out one for another. A girlfriend of mine made me sensory paddles that hung from the wall and all but the platform swing and pit were purchased from IKEA (awesome place!) By age 34 months he had learned to speak and finally said Mom and Love you! he stopped screaming in the car and could tolerate swinging!!! But, at age 35 months he was diagnosed with ASD and hypotonia. His to date diagnosises are: Asthma, ASD, Sensory Integration Disorder, Developmental Language Disorder, Hypotonia, Auditory Processing Disorder, Sleep Disorder, Reflux, and they will be ruling out Muscular Dystrophy soon as he is too young for the testing. He currently attends a developmental preschool four days a week where they provide PT, OT and SLP services. He also still sees his OT and SLP at the CTU where we got started. The good news is that they have recently ruled out seizure disorder. He is doing very, very well in his school and the neurologist says that he has made more progress than any ASD child he has seen. Cole has the ability to speak and be understood 100%. His articulation has issues but he speaks in full sentences. Before he was diagnosed he wouldn't respond to ANY verbal cues, now he can understand anything a normal 2-3 year old can. He has excellent cognitive skills including the ability to recognize shapes and colors, as well as numbers and letters in and out of sequence. He LOVES Spider-man. He can access the internet and find his Nickjr.com website by himself, and is currently playing VSmile game aged 6-8, he is three and a half. He has finally made friends. He comes off the bus and gets excited to tell me about his teachers and kids in his class. He recognizes people and remembers them from other places. In October my mother in law flew in from Florida to help us out while my dh and I had surgery. Today he wanted to see her told me to fly her on the 'hariplane' to see Cole-man. He still isn't potty trained and I would love some insight on how to do that one. We have Spider-man underoos and pull ups. But he just stands in front of the toilet and yells GO PEE PEE c'mon.... dooooo it! He has is idiocasyncracies but he is my "amazing Cole-man" and I can't believe what he has overcome so far.

That awesome! He has really overcome a LOT bless his little heart!
[QUOTE=BethAnn76]

<FONT face="Arial, Helvetica, sans-serif"
size=2>... His to date diagnosises are: Asthma, ASD, Sensory Integration
Disorder, Developmental Language Disorder, Hypotonia, Auditory
Processing Disorder, Sleep Disorder, Reflux, and they will be ruling out
Muscular Dystrophy soon as he is too young for the testing. He currently
attends a developmental preschool four days a week where they provide
PT, OT and SLP services. He also still sees his OT and SLP at the CTU
where we got started. The good news is that they have recently ruled out
seizure disorder. He is doing very, very well in his school and the
neurologist says that he has made more progress than any ASD child he
has seen. Cole has the ability to speak and be understood 100%. His
articulation has issues but he speaks in full sentences. Before he was
diagnosed he wouldn't respond to ANY verbal cues, now he can
understand anything a normal 2-3 year old can. He has excellent
cognitive skills including the ability to recognize shapes and colors, as
well as numbers and letters in and out of sequence. He LOVES Spider-
man. He can access the internet and find his Nickjr.com website by
himself, and is currently playing VSmile game aged 6-8, he is three
and a half. He has finally made friends. He comes off the bus and gets
excited to tell me about his teachers and kids in his class. He recognizes
people and remembers them from other places. In October my mother in
law flew in from Florida to help us out while my dh and I had surgery.
Today he wanted to see her told me to fly her on the 'hariplane' to see
Cole-man. He still isn't potty trained and I would love some insight on
how to do that one. We have Spider-man underoos and pull ups. But he
just stands in front of the toilet and yells GO PEE PEE c'mon.... dooooo it!
He has is idiocasyncracies but he is my "amazing Cole-man" and I
can't believe what he has overcome so far.

[/QUOTE]

Ernst,

I am still going through the system to get my 4 yr old help. Right now we are going through a neuropsychological evaluation for global nos. I wouls like to tell the story of a single mother with a child who was lost and hopefully now is found. Keep up what your doing.

Hello to all, My name is Melissa and we are parents of 3 sons, Andrew 13, Austin 10, and Skylar 3. Our story of autisim starts on August 28, 2001. That is the day one of our loving sons, Austin, came into our home. We are foster parents and the social called and said they had a sibling group of 4. One was severely MR and she didn't know if we would take him. She was not very trained at all, she believed that he should be in an instute or something like that. After going though all the parental stuff rights being terminated, his brothers and sisters moving to there maternal aunts home. The state finally picked us to Austin forever family. We have struggled with the school system sence he came into our home. I am a firm believer that a child will only do what you allow them to do, and that is how it is with Austin. If you want to do it for him he will let you. The school would use a wheel chair to get him from the special education building to the primary school. After much complaining and telling them that he didn't need it, they stopped it. Austin is non verbal but that don't mean he don't understand you, and they often mistake that. After much of my own research, I have a different diagnois then the doctor. I know because I spend more time with him then any one. I believe that he is more Autistic the MR. It frustates me that people see that label and think that he should be treated with special hands and not as equal as other children, as he is treated in our home. There was a lady that once worked with him for a couple of months, she didn't know he could laugh, OMG when I found that out, I didn't think she needed to work with him. I have tried to have different tests done on him, but the only thing they will do is an elevations. I want chemical tests done, they said that they did genenic testin on him, but I have never seen it. I am going to be starting him on an enzyme threpy, he has problems with constipation. He does alot of self steming like, banging his head, hand flapping, slapping his ears, chewing, he loves to play with string. He will sit and rip up socks just for the string, he also loves hair, anything with stringy material. He loves also to rip up paper. He like little containers like cups play dough. He don't like his hair being brushed or cut, he also hates hats. He loves baths though. He don't like alot of textured stuff like. He don't like cheese or anything with cheese in it. He loves musical toys, anything with noise, except loud ones. He loves music to any kind, usually calms him down. He loves to go places, hates being home all the time. He also loves to play with pool balls, when we go to the coffee shop he will run to the pool table and try to roll the balls down the table. We have not found an effective way to get Austin to communicate. He does use a couple of signs for eat and drink. He shows gestures by getting his coat if he wants to go somewhere, or giving us a cup if he wants a drink. We have tried the PEC cards and he just don't get them. He recieves ST and OT but they have not found any way that gets him to connect the dots either. With autisim that is part of the puzzle is getting all the pieces to fit so they understand it, there way of getting the information is completly different then ours. They are currently trying to use a Big Mac, it is a big button they push when they want something. It has a prerecorded message that says something as a reward working on task. He likes that but there is only one bad thing and that is we don't have one. I am going to get him something like that for his birthday. He knows how to sort colors, do puzzles, he hates to hold anything in his hand but can draw a circle. He strings beads, sorts shapes, matches real objects, only when matched with another real object not with pictures or words. He can dress himself, but isn't potty trained. He is very loving, he don't hate anyone, to bad more people wasn't like that. All the kids in our home or that have come in contact with him in our home, protect him. They look out for him treat him as an equal. He was said to be at about a four year old level. I don't know if any of this makes sense because i'm jumping so much. I have read also on the celelation, but most recently have heard about enzyme therepy. I believe a little of both could benefit him. I would like to have a hair test done. I have tried the espom salt baths and didn't really see and change. At the same time I tried cod liver oil and probotics, I believe they had some change on his digestive tract and will continue to use the probotics with the enzymes. I am also going to try some Maginasim with zinc. We will do this for a month to see if we have any change in anything. I will let you know how things go. I have problaby left some things out. If you have any questions please let me know. Thanks MJ hello my name is angie. i have just been hired as an instructional asst for an 8yr old girl in a public school. the biggest goal is to keep her in the classroom and on task. i start tomorrow. would love any advise i can get. she likes to run from you. she hates loud noise. she can also manipulate you. i have come very attached to her. i really want to help her do the best she can do. her parents insist she stay in public school.

Hey All I am glad to finally find a site for parents of autistic children.. Here is our story.

My son Toby is always busy. He has bright eyes, blonde hair and cute as a button. He looks at books and color on walls. He enjoys cartoons. He loves the toy of the hour. He prefers to be left alone to play. My son would live in the water 24 hours a day. He could swim before he could crawl. He, like other children is age has a blanket he carries every where. He can be shy at times, once he gets to know a adult he may play with you or may not. He is a strong judge of character and picks and chooses his “safe” friends. Toby loves to be held and tickled. He likes kisses and to snuggle. He is really as close to perfect as one child may get.

My son Toby does not enjoy playing with other children. He has a temper. He often will hurt others if he is angry or frustrated. His sibling have learned to defend themselves from birth. Toby does not talk, nor does he immediately communicate his needs. Toby does not eat what the rest of the family eats . He is on a rigid schedule and if broken will be angry the remainder of the day. Toby is actually a full time job for a PCA, my husband and myself.

My son Toby is Autistic. He is three years old. He attends therapy three times a week. He has made many improvements but nothing major. Do you know how people never forget their wedding day or the day there children where born? I will never ever forget the day I brought Toby to the doctor. I thought my questions where the normal nuts parent questions . When the doctor started to ask me questions my heart started to sink for ever question. In the back of my head I was thinking, Do other 2 year olds play with other kids, talk, listen, follow direction. Then the word came up like a swear word, Autistic. I drove home with a number for a agency that specializes in special needs kids and diagnosis. I laid in bed that night and cried myself to sleep.

Someone told me early on that this new found family issue would make or break my husband and my 8year relationship and man they were right. Telling him was the easy part. Making the man listen was the hard part. He denied every thing the specialists and doctors said, and still does. I on the other hand do believe everything they say. This made it extremely hard. Then came the blame game. Human nature to have to blame something, or someone. I blamed myself. I had another child immediately after him and one before. He must have not gotten enough attention. I read books from 15 years ago that confirmed my thoughts, and then the make or break part came in. My husband the biggest support of my life blamed me. I really thought I did this horrible thing to my son. I finally called my doctor after two weeks of this horrible head game I played with my self , and got the information that I needed to realize this isn’t any ones fault . Furthermore, My husband did admit that he was just frustrated. It isn’t something a person can do to a child it is just a thing that no smart as hell specialist from Harvard can figure out.

In the beginning of our life change( this is what I call the early days of Toby’s diagnosis), life was so hard. We both worked full time and raising two other children was hell, add therapy three times a week and then school once a week even in the summer busy busy busy. I was so tired. My husband worked out of town and it was only me to do everything. Then came the bills for therapy and doctors we ended up in financial ruin. Finally I was discussing these issues with a therapist and she asked why we had not applied for a PCA or Ma. I was shocked to learn that he may get help.

I was so nervous at the place to get a PCA, I spilt my coffee. I should not have been. Three days later and a lot of running around Toby has a PCA come to take him to his appointments and medical assistnce to play the bills and even a SSI check to pay for his needs. I wish someone would have told us before.

My relationship with my son became closer and closer and it is wonderful. I still took him to every appointment for a year, and loved every min. Toby and my relationship is like no other. A relationship of no words. One that does not include the quick smile to say I love you. Our relationship isn’t strengthened by the usual child things like a new toy or a special outing. It is sully made by touch, tons of love and the tons of time we spend together. In the beginning I would pray for the day my son could say I love you mom, now I am happy with his long hugs, and quick eye contact to say I love you.

I believe that I have finally come to terms with Toby’s diagnosis and so has my husband. He still questions everything the Therapists recommend and I still do what ever they say. We still are constantly coming up with new ideas for Toby . Trial and error is the key to any life and there is no difference in ours. Our lives really revolve around Toby in its entirety. At times I wonder if my other children get enough attention, but between my PCA(my brother) and myself I think they do. Toby has finally started to play with my oldest son Tommy once in a great while and every time he does my I get butterflies in my stomach. Toby says a word every now and again and when ever he does we all jump. My 5 year old son will even come running from another room, “mom Toby said a word mom listen mom come on .”

Don’t get me wrong our life is no breeze. We had to make a million sacrifices to better accommodate for Toby. We usually rarely leave Toby with a babysitter unless he is asleep. So normally we just take turns going out. Toby will get up and wonder around in the middle of the night if he sleeps alone, so he sleeps with my husband , and I sleep in the other room. Toby does not like to spend a lot of time at crowded places so I go with the other kids and my husband will take Toby. Toby isn’t ready for the toilet and may not be for awhile so I will wait another 6 months and then attempt to potty train my 4 year old. Toby does not eat like us so I have to make him his own meals. Toby does not just go to bed we usually have to lay with him for a long time and then sneak out of the room. The hardest part of all Toby can be very aggressive. He pinches, bites, punches, pulls hair to others and himself.

Although, we have new lives I would not change one minute for anything in the world. I have grown along side Toby. Being a young mother of 24 to start out with I have had to grow up and put my life on the back burner. I am grateful that I have such wonderful supportive family and friends. I will never forget the early days and I will never forget my friends and family that listen for hours to me. I know now that our lives are just beginning to change and will forever and today I am ok with that. Tomorrow it may piss me off but today I am grateful. I pray to god every morning to help me be patient and keep me sane and thus far I am just barely making it. My dad is my biggest mentor and he always uses the line, God will only give us what we can handle, and although I have questioned that a million times I have made it through every time.

I hope and pray that other parents like me don’t feel as alone as I did in the beginning. I hope that some day there will be a support center for parents to know the options out there. I hope that someday there will be a support group for every family, but until then I can only share my story and hope that someone out there can learn something from it. Good Luck to all the new families of autistic children and remember that you are not alone.

Hi all

We are beginning to transition my son Skyler to the middle school this semester. He will be visting the school 1x a month January, February and March. After spring break he will visit 2x a month and in may it will be once a week. I sat down with the school counselor Friday and helped point out places to take him too. They will focus on the lunch room, hall ways, stair and bathrooms the first visit. Skyler takes awhile to adjust to diffrent smells and noises.

Thier first visit is next Wednesday, I will post how it went!! yikes!! I am so lucky at his elementarty school the staff is wonderful... I don't want to send him to the middle school...

Hi Everyone! My stepdaughter has been Diagnosed educationally autistic in the school setting, but however, there were no doctors in on the diagnosing of her. It was done by the school district. My husband and I are very confused. We live in Missouri (I am not from MO) and I am a CNA and I have always understood that a DR has to diagnose a child or anyone for that matter as being disabled. If anyone has any advice or can help us to understand more please by all means contact us....Thank you

HI everyone, I was wondering if anyone could help with any advice on how to talk to my stepdaughters mother about taking Ashlee to the doctors to get a medical diagnosis? I got my question answered last night from the superintendent of special services of her school district, on how they came up with "Educationally autistic in the school setting." It was explained to me that Ashlee meet the state criteria to be in special education classes, bascially she has the education level of that of an autistic child, and the diagnosis is ONLY for educationall purposes. The superintendent also explained to me that they have had parents come to the school with a doctors diagnosis and want to put their child in special ed. but when they are tested they do not meet the state criteria to be in the special ed programs. And that tells me that just because a child may have a diagnosis of Autsim etc doesn't always mean they need special ed. programs. So for the mother to say that Ashlee is "Autistic" is incorrect due to the fact that she has not seen the correct doctors. Also we had her IEP on Monday, and they repeatly discussed how Ashlee can't stay on task, focus, and keep her attention to things. My husband (who is ADD) and I strongly feel that she would benefit from a proper medical diagnosis and possible medication...So my question is....How do we try to explain this to the mother without turning this into a lifetime movie ..LOL...The mother has since 2002 told everyone that Ashlee is autistic like "Rain Man", and that she needs "routines "ect...however, when Ashlee is at my house, she does not get upset if we don't eat at a certain time etc. Or when we may or may not go to my inlaws on Saturdays! So you can see our delima, we want to help Ashlee but we don't want to have to "fight" with her mother. Please any advice or suggestions are very welcomed. Thank you all

My name is Linda. My son is Kyler. He is 7 years old, ADHD and PDD-NOS.

He was a very high needs baby. He always had to be held, in fact we couldn't even go out to dinner when he was newborn, because he would wake up and scream. When Kyler was about 11 months old he was saying all kinds of words. Book, Bird, Hi, etc. A few months later he quit saying the words. He didn't take his first step until he was 14 or 15 months old.

I knew something was up the day that I went out to meet some other moms from my group. We sat down for lunch, and Kyler kept getting up, wouldn't stay in his sleep, would scream, etc. I had to get up and leave, crying the whole time, thinking I was a bad mother because I couldn't control my own child.

When Kyler was 3 we took him to a pschologist, and he told us that he was ODD and would probably be ADHD. A year later, we got the official ADHD DX. He was almost kicked out of preschool he was so bad. He even called another parent a "fat Ass". I was mortified.

When he was 4, he started writing his name, Kyler Fox. Had to be 1st and last name otherwise, it was not his name. Heaven forbid if you would call him Kyle. His name was Kyler! When he entered kindergarten he was reading, by the end of kindergarten he was reading at a 2nd grade level.

In kindergarten it was suggested that he has PDD-NOS by the IEP team. I was already looking into BiPolarism. I mentioned this to his psychiatrist and she agreed with their suggestion. He has a lot of socialization issues, and still has problems behaving correctly (without rude noises) in public.

He takes Ritilan LA, Risperdal, Trileptal, and Metylphenidate. His is doing well except when him and his brother are together, or when around me or his father. If his brother isn't around, he is an angel. His brother and him feed off of each other.

It's hard, but I am dealing with it. My husband doesn't deal with his issues very well and disappears alot leaving me to handle it all, while working a full-time job.

Any advice is well taken!

Linda

Hi, I am a single mother of 2 autistic boys, Jordan and Caleb. Jordan is moderate to severe autistic and Caleb has PDD. Jordan is very routine based and hates to be touched so it is hard for me to hug him or touch him

He has been in speech therapy and occupational therapy, which has helped him immensely. He does really well with the picture exchange and with signs. But the happiest day for me was when he said "MOM" for the first time

He is now receiving I.B.I and he is getting more words everyday!

Caleb seems to have a very bad aggression problem, sometimes it gets so bad that he is hitting the daycare teachers

I try to tell him that hitting is bad but it doesn't seem to work. Can someone please help me with this? His aggression is getting me frustrated, and i don't like that.

I am Lynn, mom to 5 wonderful children. John 13, Jacob 9 possible ASD/PDD, Haley 7, Hannah 4 possible very mild ASD/PDD, Hunter 3 months. We live in Eastern Iowa. Jacob lives with his dad in central Iowa. That was the hardest decision I ever made but it works so much better for him. He functions much better one on one. Let me tell you about our story.

As a baby Jacob didn’t want to be with anyone but me (mom). He was breastfed and I attributed it to that. He also would not take a bottle. When we would leave him with his grandma he would scream the whole time. When we would ride in the car all he did was scream. He was very attached to his pacifier. We tried to take it away when he was 2 but when his sister was born he would snatch hers away so we gave in and let him have his own. Jacob met his developmental milestones up until he was 18 months old. He would only say a few words and did not talk in short sentences till he was 3 years old. Jacob started having chronic ear infections when he was around 1 year old. He was on long term antibiotics at one point. Jacob had no interest in potty training. He was almost 4 years old by the time he was potty trained during the day. He has a quirky thing he has done since a baby and still does it to this day. He rubs your elbow. Jacob never played with toys as and infant or toddler. When he was in preschool he could not write his name. The teachers were concerned about his fine motor skills. We thought they were crazy because he could use a screwdriver to take all the screws out of the door hinges! It took him a lot longer to learn to write his name than other kids. He was in first grade when you could figure out it said “Jacob”. Jacob was very hyperactive and had no fears. We took him in to be evaluated and he was Dx ADHD and ODD. In the psychiatrists office he had a meltdown. She showed me how to restrain him and it made him even worse. He has been on numerous medications. Many of which made him 100 times worse. (Ritalin, Adderall, Concerta, Clonidine, Risperdal (worked for awhile) and now he’s on Tenex and Strattera) We don’t believe any of these medications are helping him. I was tired of all the different meds so I didn’t give him anymore till he started having problems in preschool. He then was put on Risperdal. He was on this up till he was almost 9. He continued to have problems but the school system never would do anything to help even though we called the AEA. In kindergarten he finally got an IEP because he wasn’t on the same level as the rest of the class. Since then school has been a struggle for Jacob.
In June 2004 Jacob killed the family guinea pig with no remorse. I called his psychiatrist and made an appointment. In the mean time my therapist had stated that it sounded like Asperger's. I researched that among other Dx and printed it all out and took it with to the appointment. His Dr. blew me off saying that it was just ADHD and ODD. He suggested play therapy. So we went back to play therapy and I didn't even mention what I thought till she brought it up. She informed us we had to go through the AEA to get anywhere. That didn't work either. The AEA wouldn't do anything. So we hit the brick wall!
With each year that goes by he gets further behind and he acts out more. He is now in 3rd grade. He has been in 5 fights this year and the principal is about to suspend him. This is what got the ball rolling! Being so tired of the brick wall we kept running into I gave it one more try! His dad was finally admitting that something was wrong and we needed to get something done. Jacob was no longer making progress on his IEP goals and the school didn't know what to do for him. I called his psychiatrist and couldn't get a referal from them so I tried his pediatrician again. He called back and said sending him somewhere where they knew about autism would be the best choice. I finally got a referral to the University of Iowa Hospital’s Children’s Autism Clinic on April 3rd. It will be such a relief to finally have someone listen to us. Hopefully we can find an answer and some advice on how to help Jacob succeed!

This is only a little bit of what we have been through with Jacob. He lives with his dad because he can’t function with his siblings. We are fearful of his violent outbursts and what will happen when he gets older. Everyday is a struggle for him and it is so sad to watch him try so hard but not make any progress!Every parent wants their child to succeed. He is the most lovable child when the situation is perfect for him.

our son erik will turn three on march 21, 2006 and he has just been dianosed as being on the autism spectrum. as a family we are sad, naturally, that our family will be different than we had envisioned it being. i am still mourning the thoughts of :normalcy:

my husband and my older son are great with erik who is loved more than he knows. he is hypo sensitive to sensory and he has almost no pain threshold. i worry, of course, as he cannot verbally communicate his wants and needs, nor speak with any consistency. erik has the alphabet memorized and knows his numbers to 9. we are lucky to have early intervention in our small town

i hope this gets a bit easier to accept and manage.

i applaud everyone's story here and thank you all for sharing.

Here is a poem that i want to share with all of you. I read this poem when I am down..

I hope it helps others the way it has me..

Skyler is 12 years old.. His birthday was Tuesday and we are celebrating this weekend. Hopefully it will go well. He has a few friends from school that we are going to have over, and just let them hang out, watch movies and play video games..

WELCOME TO HOLLAND

BY EMILY PERL KINGSLEY

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that "unique" experience to understand it, to imagine how it would feel. It's like this....

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The COLISEUM, THE MICHELANGELO-DAVID. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "WELCOME TO HOLLAND"! HOLLAND?? you say. "What do you mean Holland"? I signed up for Italy!!

But there's been a change in flight plans. They 've landed in Holland and there you must stay".

"The important thing is that they haven't taken you to a horrible, filthy, disgusting place, full of pestilence, famine and disease. It's just a different place"!

So you must go out and buy new guide books. And you must learn a whole NEW LANGUAGE. And you will meet a whole NEW GROUP OF PEOPLE, you would never have met!

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has REMBRANDTS!!

But everyone you know is busy coming and going from Italy and they're bragging about what a wonderful time they had there and for the rest of your life, you will say, YES, that's where I was supposed to go. That's what I planned! And the PAIN of that will NEVER, EVER, EVER go away, because the loss of the DREAM is a very significant loss. But if you spend your life MOURNING the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND"

Hi everyone ,

You help me before . Now I have a probelm .My elder son (9years) is an autistc child . He used to do his own work .He helps me in household work also .But hedoes not want to read or write . He can count numbers but can not count meaningfuly throughobjects by understanding correct value & identification of the particulars flash card .He has no special educator . What to do next ? Please advice me .

My son is 3 and he will be teasted in april I hope he dont have autism but if he does i hope yall will be helpful to me to.

thanks

Bubbas mom

I have an entire website devoted to my son's autism story. Check out www.autismfries.com. Find out what horrible ingredient in fast food and junk food is the cause of the autism epidemic. This epidemic has a name --- McAutism.

I am writing my story because to say it out loud is still too painful for me. My son Ashton is 30 mos old and was just recently diagnosed with pdd-nos. I am so sad. For a long time, I knew in my heart that something was very wrong, but everyone in my family kept telling me that my son was ok, and that he was just a late talker. There was also a part of me that could not believe that a child so beautiful could have some type of disability. It is still so hard for me to believe. The emotions that I feel each morning are so overwhelming. Sometimes I am filled with excitement when he says a new word(this morning was barney), Other times I am so sad. . .It seems I can't stop mourning the future I had imagined for him. I read all the stories out there of the triumphs and I still sad. I cannot tell you how many stories I have read about a child that learns to talk and read and attend a mainstreamed class, that just make me want to cry. Instead of feeling joy, i just feel sorrow for the student I imagine being picked on and never being asked on a date or having any friends. I guess you can tell that I am in a bad place right now. I am sure as time goes on I will feel better and more inspired. Thanks for listening and please pray for us!

Hi Anita,

I had written a different response, but then I read your second posting. Thanks for following up and clarifying that for all of us. While I've had many issues dealing with schools, I've haven't had to deal with a problem like that. Anyway, I wouldn't be so quick to start your stepdaughter on meds. Recent studies are revealing the truth about the long term affects of ADD meds, which include suicide or death by other health problems. There are alternatives if she really is autistic (as diagnosed by a pediatrician or child psychiatrist), like Positive Behavior Support. It takes longer to see results, but they are long-lasting and don't harm her in any way. And don't let the school push you into anything that you don't feel totally sure about! The law (IDEA) says that she has the right to a Free Appropriate (for HER) Public Education.

~Heather

[QUOTE=AnitaKing]Hi Everyone! My stepdaughter has been Diagnosed educationally autistic in the school setting, but however, there were no doctors in on the diagnosing of her. It was done by the school district. My husband and I are very confused. We live in Missouri (I am not from MO) and I am a CNA and I have always understood that a DR has to diagnose a child or anyone for that matter as being disabled. If anyone has any advice or can help us to understand more please by all means contact us....Thank you [/QUOTE]

HeatherS38792.9472916667

Honestly, I'm still in the middle of the nightmare that started many years ago. I guess I'll start at the beginning, tho. I'm a single mom of two boys. My 10yo has HFA, and my 8yo is gifted. My 10yo actually developed normally until about the age of 2 1/2, then it was like he stopped developing. The only exception to that was his extreme sensitivity to sound from very early on, which I didn't realize until much later was the result of the autism. He was a light sleeper as a baby and couldn't stand being in the church nursery with a dozen other 18-36 month old children.

Anyway, as time went on I believed that he was simply a kinesthetic learner -- always wanting to touch and handle things. So for kindergarten I enrolled him in a charter school that catered to different learning styles. Then the education nightmare began. He wasn't learning well, had speech difficulties and a lack of age-appropriate social skills, and behavior problems. The school's special ed person was supposed to evaluate him for a few things but never got around to it. After a second child study meeting (2 1/2 mos. later), she said she would get to it. It never happened. Then, in January my son got expelled for a certain behavior under their no tolerance policy. What's worse... the school's director had a doctorate in psychology!

At this point I was wondering if there really was something "wrong" with my son, so I searched more thoroughly for a good school setting for him. I got him into a class that a friend of mine taught, and she got the ball rolling. I authorized the school to evaluate him, but it took some tooth-pulling to find out what their suspicions were -- asperger's. Amazingly, at the same time my son's therapist (he was seeing someone for the loss of his dad and other mis-diagnoses) thought the same thing. Now we're making progress, I thought, two people are on the same wave-length!

So I secured an appointment with a child psychiatrist -- miraculously one week before the scheduled child study meeting. I never thought I'd say this, but what a blessing! I was able to get a diagnosis before the meeting and it turned into an IEP. Phew, I thought, there's finally a reason for my son's behaviors and lack of learned skills other than the presumed poor parenting.

So my son was put into a self-contained classroom, where I thought he'd do well. Wrong! He was getting over his separation anxiety, but the school insisted that he go on meds (I didn't know of other options then), and his teacher wouldn't listen to me regarding his toileting issues. He wasn't even progressing in the general curriculum, which is required by IDEA. And when I asked his teacher about teaching him to read (he wanted to SOOOO badly), she said that she wanted him to write better before she'd pursue that. If I only knew then what I know now! Finally the end of his second grade year approached, and I was greatful that he'd be changing schools (per the program design). I found out that they planned to keep him at the same school because of a lack of restroom facilities at the other school. No you don't, I thought.

I'm soooo glad I fought for him to move on. It came in a round about way because of the toileting, but he enjoys school, is doing better with toileting (since starting Positive Behavior Support), is READING, has better handwriting, is spelling, and is progressing in general. His speech therapist works on changing the number "free" to "three" and social skills. And he's doing better with coordination with his OT.

And the best part is that with the PBS I have the hope of turning his behavior around and getting him off the meds that are causing Who-knows-what long term health problems! Of course, there's still a long row to hoe. But I was honestly relieved that his problems have a solution, and that his potential has greater chance of being realized as a result, with the right support and programs.

HeatherS38792.9848148148

This is just one of many stories out there. All children with autism are so unique.

Our sweet little boy was born on Halloween night 2000. I was so excited to be a new mommy and experience all the joys of having a child. The excitement soon turned to worry around the time he turned 5 months old. I first thought that he may be deaf because he wasn't responding to my voice. I would sneak up behind him and clap and he would turn so I knew he could hear. As he got older (6-8 months) I noticed other odd behaviors such as twirling his hands and feet when excited. He also would sit in front of the TV for long periods of time. This is the only thing I could do to keep him calm. He would just sit and flap the day away watching "Do the Alphabet". He could sit there and flap his hands and watch TV for hours if I let him. When I turned the TV off he would scream, cry and tantrum.

When his first birthday rolled around he cried the entire time at the party. I would constantly make excuses to family and friends for his behavior - he needs a nap, he is not feeling well etc. At this point I knew something was really wrong and I was fresh out of excuses. I never thought raising a child would be so challenging?! The other moms didn't seem to be having so much trouble - I felt like a failure. I then decided that maybe I need to get him out of the house and have him socialize more with other children. He was now around 13-14 months at the time. I decided to sign him up for a mommy and me at the local library. Big mistake! The kids all played with the toys and each other, my son would run aimlessly around and crash into the other kids. He was completely uninterested in the other children. The other moms gave me dirty looks and ignored us. I left feeling very sad. Cry

At 14 months of age my son didn't point, didn't respond to his name, didn't have any words, had little to no eye contact, didn't imitate, didn't play with his toys, would stare at sand running through his hands for long periods of time, would lick doors and other objects and would do other odd things such as flap his hands and hang over the stroller and stare at the wheels turning while I pushed him around the mall. When I decided to stop to look at something all hell broke loose. He also would have horrible tantrums. Something was definitely wrong! On the other hand at 14 months he also amazingly knew the entire alphabet and could point to each letter, he knew every color, many numbers, every shape etc. I thought that maybe he was some sort of genius. Little did I know that a lot of autistic children have these scattered skills.

At this point, I decided to bring up my concerns once again to our pediatrician which kept assuring me all was well. She would talk a mile a minute, puncture him with a bunch of shots and tell me at each visit that it was all perfectly normal. "Each child develops at his/her own rate." I left feeling like she never heard a single word that came out of my mouth.

Later on in the week, I shared these same concerns with my sister and she said that he sounded very similar to a child of a friend at work. The little girl was autistic. I looked up in a medical book "infantile autism". My son had every sign. I knew at that point he was autistic. I had horrible visions of me taking care of a child that would never love me, never speak and just scream and flap. I couldn't believe this was happening to us. I cried like never before. Cry

During this very sad time I started researching autism on the internet. I found out that the best chance of him ever being any where close to normal would be help very early on. The next morning I immediately called early intervention. The evaluators came in and put him through a battery of tests. They gave me speech and special education services a few times per week. The psychologist said "possible PDD". He said the best thing I could do for him was to play, talk and interact with him all the time. Even when he ignored me, just keep at it. At that point I tuned off the TV and I became Elmo. I made silly faces, silly sounds what ever it took to get him to look at me. This was not an easy task. It is very difficult to spend time with a child that wants nothing to do with you. I did this all day every day for weeks on end. Eventually it actually started to work. He started to respond to me and his name 80% of the time.

A lot has happened since those dark days. I have faced family and doctors all saying and looking at me like I was nuts because I voiced my concerns. Even my own husband had a hard time accepting that our son had a disability. I have even heard relatives say (not directly to me) horrible things such as we didn't love our son because they never see us playing with him. Can you imagine? If they only knew what I had to go through to finally get my son to say "mommy" for the first time or to hug me or for him to say that he loves me. The first time I heard the word “mommy” he was 3 years old. It was one of the most exciting days of my life.

It was a long road to finally getting a diagnosis for him. He didn’t receive one until he was 4. The first developmental pediatrician said that he was “too social” to be autistic. I kept bringing him to different doctors until finally one was over an hour late for our appointment. He was acting so autistic at this point there was no way this one would be fooled. I finally got the diagnoses that I was looking for – PDD-NOS. Today my son, talks, hugs me, plays with other children, reads and is one of the brightest 5 year olds I know. He attends Kindergarten in a special education classroom (12-1-2). He gets pulled out for speech and OT a few times per week and has an autism consultant that comes into the classroom a 2 x per week. He has been doing so well. We are so proud of him. Don't get me wrong he still shows some signs of autism, but most people would probably never be able to pick him out in a crowd of his typical peers. He is learning how to hide some of the tell tale signs (flapping, looking at his fingers). He will now say to himself "no stimy stuff at the party only at home".

Today, I have taken the time out to write to all of you because I wanted to give every one hope. I felt so hopeless 4 years ago. The hardest part is accepting that your child has a disability. If you can make some sort of peace with this you can finally move on. We moved on and accept him for who he is – our smart silly, & "stimy" Christopher.

Hellina38798.2824884259My autism story....

I was late in walking and talking in complete sentences..........I read an early report recently..........the attending doctor had listed me as being echolalic.......on that report..........I might have been three at the time..........

I was more interested in exploring the vast world around me, than talking to people. I wanted to watch the ants crawl in the grass, instead of walking to school! My parent (usually my father, he brought me to school most often) had to escort me to school at times!

I attended a special education school for 8 years..........I didn't really get into the swing of school until the 5th grade, though by the middle of 4th grade, I was starting to "get with it" more. When I first started, I won free trips to the principal's office quite a lot, because I could not sit still in my seat! sometimes a teacher, thinking I was completely unaware of what was going on in class, would ask me a question, and more often than not I could answer it correctly. (This is what my parents told me)

Towards the end of 8th grade I got tired of that school......the silly conference system.........being at the highest level in my class, didn't afford me any special chance to go first.......my only problem with that was, we were not allowed to move on to any other subject during a specific time.........for example one could not work on reading during math time. This caused me much frustration because it meant that I would have to sit twiddling my thumbs waiting for my name to be called for a teacher conference.

I tried to move into a private school for highschool, all of my interviews were disastrous. I didn't know how to behave........while visiting a school. I wasn't really unruly but I couldn't keep my hands away from things.........like the spigot for the bunsen burner!!!! Fortunately no one got hurt.........so I repeated the 8th grade at a public middle school.............that's the year I really really got into academia and loved it.

I'll have to finish this story sometime later on......for the moment my attention has wandered elsewhere.

Hi! I just joined this group and I wanted to tell you about my william. he is 5 yrs ols and a wonderful little boy! he didn't start talking till he was 3 yrs old but now he talks pretty good sometimes he has trouble but he is doing better everyday! We was told that he has PDD about year and half ago. the news really did bother but I'm coping with it a lot better. I still think that he doesn't have PDD but alot of the doctors tell me that I'm just in denial. We have alot of trouble with the school system, like when he was in Head Start he could on stay about 2 hours. head Start is only there for 4 hours anyway! Now he is in K he is doing alot better but he still doesn't get to stay the full time. The School system he is in they really don't know all lot about autism but he has a wonderful speical Ed teacher and she is doing everything she can for him. My william is very smart and he high functioning so we hope and pray he'll do fine later on in life but we thank GOD every day for our william. welcome to the forum. I hope you find information on here that's helpful. I just joined this forum last monday..........march 26th. so I'm very new myself.......I've been posting away because finally I found an outlet to type about my experiences and read posts that really relate to some of the things I went through and experience.......the difference is, I am myself autistic, and most of the people posting are parents of autistic children like yourself...........I hope the very best for you, William, and the rest of your family.

have a look at my topic "autie dictionary" and if there are any words that William has made up that you can contribute, feel free to do so. I have a few of my own words on there too........that's how I started it in the first place.
Best of luck, keep posting.........

Athena Ivan
thank you! I really can' tmake out some of his words but I say at least he is trying to talk he is talking actually. I thought he would never talk. I'm so excited that you left this message for thank you. you said that you was autistic? Wow! I have heard alot of different stories from different places about people that is autisic being able to doing really GREAT later on in life. That is wonderful! See when the doctors tell you that your child has autism all of people including me think it is a death sentece

. But if you work with them at the earliest age possible(We started at age 2 when we THOUGHT something wrong)then they can really grow up to do just about anything they want to do! William is high functioning so we're hoping that with all extra work and a lot of praying he'll be just fine.

Can I ask you a question? How was you when you found out that you was? if you don't want to answer you don't have to but thank you for the message it really does make me feel alot better!!

What a relief to find this site. I think it is very theraputic to tell your story. I have a 4yo son who was labled PDD NOS about 2 years ago. I had endured so much before the dx that even though it is very hard knowing what is wrong has helped. Before I had people always telling me things like oh boys are just late bloomers and he will talk soon. Like many children my son developed normally until about 2 then he started to lose the language that he had although he is still verbal most of his language is echolaic. He is very hyper and also very loving to his family he will shy away from strangers. But all that about autustic kids not being affectionate is bull. That is why it is Autism Spectrum Disorder there is an umbrella of syndroms and all children in the spectrum are different . I still mourn the fact that my child is autistic and I know that is totally normal. I usally have a good breakdown cry about once every six months. It is hard also because I live in a rural area and I have no support but am trying to work on starting a support group. My son started school this year and it has really been wonderful for him. We are in a small school with an individual aide I love it even though we do not have all the advantages of a big school there is something to be said about knowing that your child is safe. I have learned that you always have dreams and goals for your child and when you find out about asd they become different. I love my son very much and as strange as it sounds I would not change him because even as hard as autism is I know that with the Lord all things are possible. My son is making progress and I pray that continues. No matter what happens I just praise the Lord for the chance to be the mother of this wonderful child. That is how I deal with autism one day at a time one step at a time one goal at a time AND PRAYERS ALL THE TIME God Bless you all!!! I hope to make many friends here and get and share advice on asd.

estep............

I just now came back to this thread to have a look at it again........so I just now saw your questions to me. I found out shortly before my 22nd birthday (I know that seems really odd.......and I was diagnosed as Asperger's, not HFA, because of my age.) Sorry it took me a while to answer your question.......

I have a tendency to post something somewhere and then forget to follow up on it for a while.

Lakesidejenn- you have come to the right place to share hope stories and vent when you need to and find advice..........I was thrilled when I found this forum, I find that I have several things in common with a lot of the children that parents talk about on here.......I was dx as AS, but I'm sure I'm HFA........it's just because of my age that I was dx as AS. I was VERY challenged for a while when I was really young...........I'm 22 years 4 months and 13 days old now. My lil sissy will be 18 in 13 days hooray!

THANKS FOR YOUR REPLY! yOU SEEM LIKE YOUR DOING WELL AND I HOPE MY WILLIAM WILL BE THE SAME WAY!

Hello I just joined this site tonight because I need support and guidance from ppl who understand. My youngest son Jordan is scheduled to go to the psyc May 2. However, I already have an idea that they will tell me he is autistic. I would like to share some of the reasons with you. My story is: I never really thought there was a problem, my family and friends just always said "oh he's just a late starter" b/c i compared his development to my 6 yr olds. Until one day at a birthday party a lady suggested to me, just from observing him, that I needed to get him checked for autism. He will be 3 in June and went from learning to say some words to talkin jibberish. What once was "mommy" now sounds like some other word. I kno what he is saying sometimes but others I just get frustrated and wish i knew. He has these OCD routines, instead of coloring he takes the crayons and lines them up in long lines...puts them back in the box and continues this for sometimes an hour. And if he is lining up objects....crayons, hotwheels, legos etc., if anyone touches it or moves it a fit is thrown. At daycare, he refuses to play with others or participate in storytime. He doesn't like to be touched, wipes kisses off and a change in routine is a horrible thing. If he doesn't do things a certain way or if I move a picture frame from one table to the other...he notices and moves it back. Some days he's good at potty training, others he refuses to go in the toilet. The most occuring thing is the constant need of something in his hand. Especially lil balls. He will insist on having a toy, ball or lego in his hand at all times. When i pick him up from daycare the same thing is still in his hand. So really I don't think I need a doctor to diagnose him because all the red flags are there...so when we do go my main goal is to start him in therapy so my baby can live a normal life. My oldest son has a different father so he doesn't have it. However, Jordan's 1/2 brother from his daddy who is just a few months younger has been diagnosed wit PDD so I guess daddy is carrying the gene. Jordan's grandfather is I believe Schizophrenic and bi-polar and suffers from manic depression I don't kno if that has anything to do with Jordan tho. Any information anyone wants to share with me I would appreciate it considering I am doin this alone, his deadbeat pardon my expression "sperm donor" doesn't participate in his life...and as u all probably kno some days are good days and others are a super challenge!! Some nights like tonight I don't sleep because I am up worrying or crying about it, will he ever have a normal life? How autistic is he? I kno when we go to the doctor they will be able to tell me more but thank you for listening!!!

Hi Eveyone !!! I am a first time poster and newbie to this forum. I was browsing for autism forums and came across this one. How could I resist anything with the Steelers logo ? LOL ! Yep in addition to being Mom to my 10 year-old HFA autistic son I am a huge Steelers fan, born and raised back in the day :) !!!!

THe biggest challenge I have had with my son (besides the temper tantrums) is dealing with his school. He goes to a public elementary school, mainstreamed in to 2nd grade. On the one hand they complained he couldn't keep up. I peeked in his class one day and saw him off to corner while the teacher worked with other students. During the IEP I suggested an aide to keep him him on task. The school gave me a hard time about geting one for him. Finally I told them "O.K I will quit my job and be his aide. You can't stop me and I am billing $15 an hour. " Wow ! I had an aide for him in 2 weeks. He uses the aide as needed, we are working on keeping him independent.

Ellen

Hooray for you!! My 10yo is also HFA. Not mainstreamed yet. I've been looking for a way to get them to mainstream him altho he's not up to speed with his same age peers. Now I have some evidence of it being done. Keep it up!

[QUOTE=emmy63]

Ellen

[/QUOTE] In response to t. williams. Your child sounds so much like my son who will be 4 next month. He loves to line up objects and once in a while will either give a kiss or let me kiss him but it has to immediatley be wiped off and of you ask him for a kiss and he is willing he will kiss you on the arm or stomach. He also hates to be read to, but this has gotten better. He used to scream if you tried to read to him, now he will just go to another room and he actually has brought a book to me twice now to read to him. When we would go on road trips he would drive us all crazy unless we listened to the same song over and over and over and ..... you get the idea. He tries tell me where to drive to and when I don't go in that direction he will ask if he can drive and when I prompty say of course not, he throws a tantrum. But, I have noticed just in 2 years there are improvements. He also has picked up the word what now and will use it instead of repeating everything we say. Although, now he makes me repeat myself a hundred times intead of him repeating what I say. Which I always try to make him understand, because I see he is trying very hard. Recently he has even point blankly asked me what are you trying to tell me. So these are strides.

T. Williams~ Since your son is having an eval... yesterday, he should be eligible for wrap around services as well as pre-school services through early intervention. I believe both are nationwide. Please if any one knows different let me know ! Unfortunately, that eval is what everyone needs to start anything. But you have that step out of the way. My oldest son had the speech issues and some OCD but you son sounds like a combination of both my oldest and youngest. They both have a PDD-NOS dx. Just remember, you've started the process! That's soooo important at this age. Autism is not worthy of the stigma, and helping you son early is the key! Please let us know how it goes!~Allysen

Thank you Searchingmom and Ally...Well at his appt he was diagnosed with PDD. I have begun researching that since before I had focused on learning soley about Autism....but really they kinda seem to be the same thing. There are only 2 doctors in my city that specialize in autism so its hard to get in. His Speech and OT evals aren't until June. I hate that. I went today and talked to our public school system to learn about their programs so that helped alot also. I know we have a long road ahead of us but we are strong and I will keep u posted. And I know all about the repetitive songs and movies too. I have so many movies and cartoons memorized from listening to them over and over and over. Whatever movie sparks his interest, he watches daily a million times in a row. But thank you both for responding, I don't want to feel all alone in this.Over and over and over and over and over again for certain things, huh? I do that too. a song that I fixate on, has to be played over and over again. I'm not sure if I lined pencils up but I certainly remember a time in like 2nd or 3rd grade when I was in art class, and I was putting all the pencils in color groups, instead of doing whatever art activity the rest of the class was doing. Then Lewis, one of my classmates, said in a LOUD voice..........."WHAT ARE YOU DOING???" That scared me, and I picked up all the pencils and put them in the box quickly and just sat down and............I can't remember any more of that story but I must have felt pretty upset. This was at a special school for learning challenged children..........I was there for a total of 8 years. Welcome to the newbies that have just joined and posted here.

I'm 22 years 4 months and 22 days old.............HFA and ADHD................I take Concerta 27 mg daily and when anxiety gets very severe I take Klonopin 25mg.............as needed. adorable children I see here..............

AI
Hi all....As the parent of an older autistic son I can relate to many of the posts I've been reading from parents of younger children...when I first became concerned that my son was having developmental problems he was diagnosed as everything from being retarded-to defiant and of course I was told it was my fault and just needed to relax...after 2 1/2yrs I finally found a doctor who wasn't scared to say autism...seems like I been fighting for him ever since. I'd like to give some advice to the new parents out there if I may and that is to stay strong and fight for your child...educate yourself as much as possible-there is alot more information out there now a days-I used to have to actually explain to my son's teachers what autism was and may times they underestimated his abilities and talents-learn what your child's educational rights are and use your knowledge to make sure your child receives the education and therapy he/she is entitled to...don't let anyone ever discourage you or deny your child the right to an appropriate education that meets their educational needs...I've watch my son grow into a young man with many endearing and unique qualities and though he has come a long way every day is a new challenge.... Stay Strong !!!Hi, I have been reading the posts here, and thought I might add my two cents about my daughter and her struggles.

When she was a baby, I used to wonder what was going on, because she didn't act like other babies. Her milestones were different. I had repeatedly asked her pediatrician about it, but his answer was always "she's fine, she's just a big baby, and big babies are always slower than most". (She was a rather large baby and toddler). This used to frustrate me to no end. She seemed to be a rather serious baby and toddler, always studying things. She hardly ever smiled, or laughed. Or seemed to care whether or not she had physical contact with me. She was physically slow, didn't crawl when babies usually start crawling, didn't walk when they usually start walking. When she did start crawling, she just up and did it, on two hands and two feet (not knees). When she started walking, she just up and did that too. The only thing that she was not delayed in, was speech. In fact, she started talking earlier than most babies. She never coo'd, or made baby noises. Just one day started talking. Her first word was 'book'. By the time she was 2 she had the vocabulary of a 4 year old. By the time she was 4 she was reading, by the time she entered kindergarden she was writing, using the computer, reading well above her age/grade level, etc. When she entered 1st grade was the first time I'd heard the word 'gifted' come from her teacher. Yet, she couldn't ride a bike, could barely run, was emotionally...flat. Didn't make friends very well. In fact, she was a very lonely child, but it didn't seem to bother her. By the time she had started school, we had moved from one coast to the other. So she no longer had the pediatrician she had when she was a baby. I had stopped thinking about why she was so developmentally behind in some areas, because I had been enchanted with the idea that my daughter was so incredibly bright. At this point, I figured she was just an 'odd' child myself.

In second grade she started showing signs of what I thought appeared to be OCD. This started a line of mis-diagnosis. I started taking her to a child therapist that specialized on OCD. But the more they worked at it, the more I saw my daughters behavior, the more convinced I was that it was not OCD. This caused the first disagreement with a therapist. Her therapist was convinced that it was only OCD, with some oppositional defiant disorder thrown in. So I started doing some research. I wrote down all of the things that were odd that my daughter did, or said, or didn't say, or didn't do since birth. For example, she couldn't dress herself until she was 5 years old, and even then she still needed help.

Oh, before I go much further, I should also say that I am PDD NOS myself. A point that will become much more clearer later in the story. (For some reason, this didn't cross my mind at all when dealing with my daughter).

Anyway, I gathered all the 'evidence' I had collected, and took it to my daughters therapist, and ended up taking my daughter out of her office because I was told that 'no way is your daughter anything but OCD'. (First off, I don't believe my daughter *is* anything. She *has* something, but it doesn't define who she is.)

I ended up taking my daughter to another psychiatrist for evaluation, with my 'evidence' in hand. Sure enough, PDD NOS came up to the top of the list. At this point, it clicked in my head that my daughter had inherited my disorder. With some differences between us, of course.

Well, now that we are on the right path, I was able to really start finding help for my daughter. Plugged her into several therapies. She's 10 now. She can now ride a bike (very well actually), run, play with friends (some of the time). We still have trouble with concepts like 'empathy' and 'sympathy' etc. Her emotional spectrum is still very limited, but is expanding slowly. She is finally learning sarcasm (which brings some hilarious results).

My two biggest problems currently are these. At school she doesn't get much support, because she is mainstreamed, and academically gifted, I have to fight for every ounce of support she receives there. She gets into trouble a lot for doing things she's always done (yet the teachers don't seem to read her IEP, or take the extra time to work with her when needed). And also this, she is currently fighting her therapies, because as far as she is concerned, she no longer wants to do them. She has a ways to go yet before we can 'mainstream her into society'.

This is just a condensed version of her story. I've left out a great many details, because I don't want to take up too much of your time.

Thank you.
Pattie

Hi1 I just thought i would share some of our happy news with everyone that would like to listen! We took out william t his doctor today and he was very thrilled with the way things are going with him. He told me that william is do high functioning that he should do just find out in the world! We are so happy! We knew he was doing better but this really made our day! When we first were told that he had PDD we thought it was the end of the world but if you work with them alot of the time thing really do work out on there own! Thanks for listening to my happy news! GOD Bless!

Thanks

Patti:

Like your daughter, my daughter too has decided that she no longer wants to see a therapist. To be honest with you I can't blame her. For years, since she was 4, she is now 12, I have bounced her from therapist to therapist without much results. They all wanted to treat the symptoms without determining what was causing them. Because I could not get a diagnosis all she and I were getting out of these visits was frustration. I kept taking her there hoping to learn something new and because all the doctors said she needed it but nobody would confirm a diagnosis. Since she was 4 she has seen as many as 8 therapist and has been put on at least 5 medications. None of them worked.

At this age they begin to realize that they are different but in my daughters case she refuses to believe it. I have finally found a doctor willing to take the time to listen to me give me a diagnosis I can work with and put her on a medication that is allowing her to interact with her peers on a more age appropiate level. She is involved in dance, sports and most important beginning to socialize with kids her own age. The anger and uncontrolable temper tantrums she had became less frequent and much less in intensity with the medication.

The first time she insisted that she was not going to therapy I forced her to go. All this did is make her angry with me and the therapist. All she did is yell at her that she didn't want to be there and that she wasn't helping her any. Just to let you know, this was the only therapist that acknowledge that she may have aspergers and pointed me in the right direction in getting her help. After listening to her and acknowledging her reasons for not going any more I decided to let her stop. She still sees the Pychiatrist once a month for evaluation and medication. Every so often He will ask her about seeing a therapist again. She shocked me about 6 months ago when she agreed. After about 4 months she agian voiced her reasons for not going and I decided to go along with her again. Please understand that I do not allow my daughter to walk all over me. During this time I have tried to explain the differences between her and other children her own age. I have tried to put it to her that having aspergers is like having diabetes. You have a medical condition that needs to be treated. With the proper medication and education her life can be the same as any other child. I encourage her to learn about it on her own. Not that she has but I believe in time and life experience she will.

I believe that with maturity comes wisdom. Even though she is only 12, I never expected to have the daughter that I now have. When she was 10 I was at my breaking point with her. I had tried to have her hospitilized twice and thought about having myself committed too. I was really loosing control.

If your daughter is stable and you are comfortable with the idea it just may be good to let her start participating in her treatment and helping to make some of the decisions. This is just an idea. I know with my daughter she needed to know that she was allowed to make some of her own decisions. By being an active participant she is more willing to listen to what I and the doctors have to say. We still disagree on many issues and I still win most of the battles, I am still the mom, but now she knows that I will listen to what she has to say and we discuss it.

Hope this helps.

Tricia

[QUOTE=EI1109]Hello everyone,
I'm new to this forum and have read some of your
stories. I work in Early Intervention and several of my
clients are on the spectrum. I admire and value the
resiliancy of you all, and even though I am not a
mother or have a child with special needs, I see first
hand the hardships and sacrifices of your journey.
With all my clients I not only work with the child on
speech (both receptive and expressive), gross
motor, fine motor, and cognition, I also spend some
time with the parents. I feel that many parents need
to grieve for their loss and have an emotional outlet.
For example, parents may feel angry and guilty about
their child having autism, but may not have the social
support they need. In our EI program, we also have a
parental support group where parents come
together and discuss, reflect, as well as get to know
other people who are dealing with some of the same
things they may be going through. For those of you
whom have recently found out your child is on the
spectrum, I am interested in hearing how you felt
and what you did to seek the emotional support you
needed? Or perhaps you don't feel supported but
would like to know more resources and strategies
to help your child. Whether I get any responses or
not, I just wanted to write something to the parents to
say that you are the experts to your child. We as staff
are also students who need to learn from your
family. Know that when you have a gut feeling that a
diagnosis doesn't make sense or feels incorrect,
you should definitely not be hesitant to get other
opinions. Most evaluations and assessments occur
between 2-2.5 hours, a very short period of time
compared to how you've been there for your child
since they were born. And lastly, if you feel like hope
is not within reach, know that people such as
yourself give me the hope and inspiration to help
children and families. [/QUOTE]

My name is Jessica, My husband and I have 3 beautiful children. Abigail is 5, she is a very active little girl who keeps us on our toes, Andrew who is 2 1/2 years old, he was just diagnosed with autism, and Amelia who is 1 1/2, she is a tom boy! Our son is a very loving little boy, but he keeps to him self, I think he and his sisters have an understanding...(you don't mess with me, I won't mess with you). We are having trouble figuring out what to do about school. Andrew is not verbal, YET! So my husband is scared...worried...concerned, or any other term that can be used to describe the feeling you get when you are hanging over a pit that is full of crocadiles. lol We want to send him somewhere where there are tipicaly developing children also. All we have for resources around here is special ed. Andrew not only has autism but brain damage, and mabye some sort of syndrome that no one can figure out what it's name is. In our area we have a thearpy program called First Steps. This is for children with special needs from ages 0-3. Andrew will be three in october, and it would be nice to work with some special programs for kids who have autism, dose any one know of anything even online would help,

We have overcome alot and I know that there are still boulders to climb, but what will make things easier for my son when his world is crashing down on top of him, and nothing seems to go his way?

What works for you?

LIKE YOU WE ONLY HAVE SPECIAL ED AND EARLY INTROVENTION THAT WORKS WITH CHILDERN 0-3. i WISH YOU LUCK AND MAY GOD BLESS YOU AND YOUR FAMILY!

Thank you estep! And good luck to you and your famiily as well!

this is to mommy of 3, I live in boston massachusetts. the law here states that the public schools are required (by law) to take over therapies when early intervention ends. what state do you live?? i had to do a lot of research to get my son's doctors', therapists and everyone else who calls themselves a "specialist" the information that was needed to help my son out. we've been through all kinds of drama trying to get these so called specialists to diagonse and get some kind of feed back on treatments and what not. but whatever you do DON'T BACK DOWN!!!!! and if you are not comfortable with what anyone is saying to you, let them know. take notes at every appointment, with whoever you speak too. DOCUMENT everything that everyone says, time, date, even the color of the socks they were wearing. We live in TENNESSEE. It is law for the school system to take over after early intervention but sometimes you'll have a BIG problem because they don't want to pay! We really don't have the problem with therapist as much as tring to get an aid for the class room. I have been given the run around about this every since we started school this yr. but I'm not going to give up! JUST Hang In there! GOOD LUCK!

Thanks for all of the feed back! I love it. I live in Indiana, I am not too sure what the "laws" are but i do know that the school will take over thearpies when my son turns 3. But it's like they put all of the special needs kids in one class room for pre-school, I think that Andrew would probably benifit from being around other kids ( besides his sisters of course) who are "normal" ( I use that term loosely ). But who am I to decide my sons future, I am only a parent who has limmited funds for my childs education.

I guess the fusterating part is that they( the school system ) come into our home and talk with us about all of the really good things that they can do for these kids, but then we hear about things that are some much better, but in other areas that are out of our reach. Then I start to feel like I could be the one who teaches him... I could be the one who shows him the world and how to be a part of it... but for a mother who is working and trying to go to school and get my degree so that I can afford to give him the things he needs( and the girls) it's almost out of my reach. SORRY FOR WHINING!

As far as doctors, we have been through all of the peds docs in our county we drive an hour to see a regular peds doc. our specialists are 3 hours away. I can relate to what you are saying about that. It's so hard to find a good one. now I guess what we have to is talk to the developmental peds doc to see what to do as far as programs for him, right?

let me know what you think as far as too what I do next, if you can understand what I am saying. I have a head ach fromstaring at the computer. I want to again to thank you again for helping I need so much of it. lol

Hello, my name is Tyna and I have a 11 yr old low functioning Autistic son named Jory, and a 6 yr old ADHD son Ewan. I guess i'm here, in hopes of finding another child like my Jory. I have searched the net for years, and have yet to find one. Jory was born severely premature (barely 23 weeks gestation). Because of that, he is blind in left eye, and very low vision in right eye. He wears diaper still. He eats only speghetti, ravioli- pasta in red sauce, and Gerber oatmeal with applesauce (sometimes strawberry jelly if he's having a wild hair, LOL) He LOVES music. He cannot hold a conversation, he repeats alot. Although he has been known to say a few "choice" words when angry, LOL. He loves to laugh, and cuddle and tickle. He loves school. He has been riding the school bus since he was in kindergarden, and likes it very much. He does love his brother, but has a hard time showing it sometimes. He likes to pinch, or hit his brother when Ewan is annoying (which does happen alot, having ADHD) or when he laughs out loud (not always, but it does happen). I have a wonderful support system (I live next door to my inlaws who ADORE the kids and give me time off, thank God!) I just wonder if there are any other low functioning Autistic kids like him. I hate feeling so alone. Anyway, i'm happy to be here :) I was on another autistic message board, and I felt I had nothing in common with them. Like when Jory was between the ages of 2-5 he used to get poop everywhere (he would feel something I guess, then smear it on the walls. He doesn't do that anymore, but to this day when I say "Jory! Did you go yuck' um Poo? He shows me his hands everytime, as if to say "Nope I didn't" Or "Yes I did, but I swear I didn't touch it!" LOL) he can tell me he's hungry, or wants to go bye bye in the car (he LOVES trucks, vans etc...especially old VW bugs the sound they make and feel of the motor) He can tell me if he needs a diaper change, but won't stay on the potty. Anyway thats us, and Jory :)

Tyna

I guess i should start with my story, since i'm trying to give advice (lol). anyway, my son was bilingual before age 2 (spanish & english), by the time he turned 2, he lost both languages, didn't want to be held by me or his dad, only his big brother (9 years age difference between the two). He didn't recognized his father or me, just his brother. my sis in law worked with adults with emotional & psychological issues and said i should have my son see a specialist, he may need early intervention. (un)fortunately, the area i lived at the time, there were many kids with similar "symptoms". i was told that my son would never speak again, he would have to be institutionalized when he gets older, he was having seizures, and these staring spells that would last up to 30 minutes at a time. the diagnosis of autism/pdd didn't come until 6 months later, but the doctor never told me, i had to find out from another source that he even had a diagnosis. anyway, he had early intervention at home, twice a week until he turned three. whenever they came to the house, i took off from work so i can take notes and watched what they did, and i repeated everything they've done when i was home from work. he started school when he turned 3 in a "non verbal" class, by the end of the school year, he shocked everyone out of the blue when i came home from work one day and he said hi mom, how was your day? he still had social issues to deal with, but at least he was speaking. the following school year he was put into a "verbal" class and some what overcame his social issues. Now he's in an integrated class and he still has a long way to go, he overcame ALOT that we were told he would never be able to do. i've done a lot of research as soon as i heard the word autism, and because of my research, i have more imput into what kind of treatment my son gets, especially with the school. i have many people involved with him. in massachusetts, once there is a diagnosis, it was recommended to me that i get the Department of Mental Retardation involved, not because he's retarded, but they can point me in the right direction as far as speech and occupational therapy, his DMR worker acts as an advocate with and for me and comes to every school meeting, he also provides a shoulder i need when i get frustrated. He and i as well as his primary doctor, and his special needs doctor and speech therapist work together with his teachers & therapists in school to create an acceptable IEP. of course i was having all kinds of problem with this integrated school because we moved to a different city and they do not have the special education resources that the other town had. Well, they do NOW!!!! the one thing i've learned from all this, is no one is gonna fight for your child/ren as well as you can. I was hearing from all kinds of quacks all this negative stuff about my son's condition, but the more i researched and spoke up, the more help i was able to get & give to my son.

thanks for listening (reading)!

this is to estep, and anyone else who is having a problem with the school system paying for the special needs education...

GO BACK TO THE SCHOOL AND TELL THEM IT IS A FEDERAL LAW ( INDIVIDUALS WITH DISABILITIES EDUCATION ACT OR IDEA), THE SCHOOL DISTRICT IS SUPPOSED TO PAY FOR THE RESOURCES EITHER AT THE SCHOOL YOUR CHILD IS AT, OR PAY FOR A PRIVATE SCHOOL OF YOUR CHOICE, WHICH INCLUDES TRANSPORTATION, MEALS, TOOLS NECESSARY FOR EDUCATION & SERVICES NEEDED, ETC.

Been there and done that recently. Administrators at my son's school wasn't trying to help me when i first signed my son up, but once i let them know that i knew the law and what their legal obligation was, they have no choice. I let them know that they would either provide what i need for my son there, or they can spend next year's school budget on this extravagant expensive ass private school 35 miles from where we live, and it would cost me nothing.

i hope this helps a little.

thank you! I'm bad about not taking things by the horns as some people tell me. i know the laws but it is just trouble trying to get an aide for my high fuctioning son. but i know what to do now thank you!

Hi, I am new to the board, but here is my story-it's rather long.

I knew at age 2 that SL was autistic in some way because he did not like to be held as my other children did, and he would spend hours lining up matchbox cars under the dining room table. He stopped using the few words he had, and he would either point, or yell, or bang his head. He would have a tantrum if anyone disrupted his toys. Fortunately, we live in an awesome school district! This district, while dealing with other disabilities, specializes in autism because of the increase in the identified population.

He was tested at 3 at the preschool screening, and while not identified as autistic, he was identified as being delayed in fine motor skills, gross motor skills, speech and language, and social skills. He was placed in an ECE class for the next two years in which he was with 10 other children of varying disabilities, a teacher and 2 aides. He had all the services: speech/language, OT, PT, social services. At this age though, we found out SL had lead poisoning for which he was treated and cured. With everything else, it was difficult to tell how that experience contributed to his disabilities.

SL continued on in regular K-4th (450 students) with all the services and an aide in K-2. By grades 3-4 he was in a regular classroom with some pull out and a resource teacher who would come into the classroom for certain subjects. AT this time we were fed up with the school social worker, and we sought an outside social worker for which insurance partially paid. We stayed with this social worker for the next 10 years, and SL made progress emotionally.

Around age 9, SL still had not been officially dx as autistic; we were finally able to get SL into the University of Illinois's study on Autism because he has two cousins with autism as well. They officially dx him as high functioning autistic.

In 5-8th grade, SL moved on to the middle school (450 students) were he was again in regular classes with a resource teacher and all his pull-outs, except he no longer had PT.

Meanwhile, the tantrums were still stressing us out; holidays and family functions were ruined; going out was almost disastrous. We investigated medication. We did much research and opted for Zoloft which has worked well except for the time the doctor tried to increase it. Then SL still felt like his brain was moving 100mph, so the doctor added Topamax. SL also had OCD and anxiety and depression. However, holidays are still stressful, and we arrange it so he and my husband only come to the dinner part of the family gathering as I have a very large family that can get extremely rowdy and loud. If SL seems to be handling it well, they will stay longer.

SL was always very well liked by adults, and peers, but he never had friends to play with. However, things had been going very well with occasional tantrums around holidays or stressful periods. He entered high school and he was back in the special education program again as regular classes in such a large school (1200 students) were too stressful. He still had speech/language and social work assistance with a period for resource to help with his homework. He no longer had OT, but modified gym. SL became a manager for one sport each season: football, basketball or wrestling, and volleyball. Again the students and the coaches loved him, and he now had one friend, another in special ed.

However, in his junior year, things fell apart. Some of the older special ed kids who were also football managers, began to pick on him, and he did not know how to deal with it. So he created some inappropriate ways of handling it that landed him in psych care for a weekend which lead to outpatient psych care for 2 months. SL was never able to return to his high school because of the deep guilt he felt. As part of the placement program, SL had to see a different psychiatrist who dx him as aspergers.

Happily, SL is now in a day school for autistic children. He is in a class of 6 other boys who are at a similar place on the spectrum, and he is doing very well. He missed the sports activities, but he manages to get us to take him to away games where he does not have to worry about going back to his high school. The students on the teams are always glad to see him, and often will dedicate a game to him. The tough part will be when the kids who know him graduate.

SL has been an alter server in the Catholic Church for 7 years, and he is giving it up now to become a Eucharistic Minister. The Church, sports and weather are the areas of interest for SL.

SL's story has been a journey, and it sounds as though we have done well, which we have in the long run, but we have had our struggles, and issues. My other two children have suffered, but we have remained close as a family. Now we are beginning our struggle with guardianship and SSI. So the journey continues on.

I don't yet have many accomplishments to post. We are just getting started with Autism. So, here is our story...

I am married, this year will make 9 years. My husband and I have 5 children. Tyler-8, Brianna-7, Shiloh-5, Shianne-3, and Baby Jack-2. I noticed things with Jack when he was a baby. He didn't like toys much...in fact for his birthdays and Christmas we would tell our family to buy him wipes, diapers, or clothes. He didn't laugh like a normal baby, he would grunt and get this "look" on his face of almost pain. I just assumed that he was "being the baby" I mean he has 4 older brothers and sisters...he IS VERY BABIED. He started cooing on time, he learned to say "mama" and then "dada" he would even repeat "I love my mama" when he was 1& 1/2 of course it was more noise than actual words. Then he stopped saying "dada" and called him "baabaa". Soon he rarely said anything at all. I still had no clue that anything was going on...HE WAS JUST TAKING HIS TIME- HIS SIBLINGS COULD TALK FOR HIM. Well, my mother came to visit from out of town...it was the 2nd time she had seen Jack. She stayed for a week. Before she got ready to leave she asked me if maybe Jack was deaf...along with my sister. I knew he had "selective hearing" but, surely not deaf. I made the appt. had his hearing tested...IT WAS NORMAL- LIKE MOST PARENTS OF AUTISTIC CHILDREN WELL KNOW. So, I still had no idea about Autism. Time went by (well wasted) months. Then Jack got a stomach virus and was put in the hospital for less than 24 hours...every time a nurse would touch him he would SCREAM LIKE HE WAS DYING. They documented it in his chart that he was very upset and seemed in pain to touch. By the time the Dr. came to do rounds at 10pm- I told him I HAD TO TAKE JACK HOME...I COULDN'T CONTROLL HIM AT ALL. Well, I don't know what happend after that...but I am assuming it was THROWING HIM OFF HIS NORMAL SCHEDULE because for literally months after this...he screamed from morning to night. It would literally take him hours to fall asleep at nap and bed time. He is now in Early Intervention and getting 5 days a week of therapy. NO BEHAVIOR THERAPY...which is what he really needs. He hits, kicks, falls out in the floor, headbutts us and the kids, headbutts the floors and walls. I am hanging in there, and have high hopes for him and his future. Maybe next time I will have an accomplishment to post. Jack is screaming again...I must go. Talk to you all later. Good luck in your missions!

mommy_of_five38867.5617939815Hi! Things will get easier I promise. My son was 3 when we were told he has high fucntioning autism and I though 0things couldn't get any worse but things started getting easier as he got older he is now 5 1/2 and he is talking a lot better and he is in school a full day now he was just going 1/2 a day but he has really come a long way.

So give you son a little time and I things will get a littler easier for you all also! if you ever need to vent about thing this forum is a great place to do it! good luck with everything you all do! GOD BLESS!i'm now told that my son doesn't and never was autistic/pdd, he has adhd.

he fit all the signs of autism according to three different specialists, one who is now the head neurologist at children's hospital. the reason i'm told is because of the amount of progress he's made. on top of that, they're recommending medication!!!!!!!! has this happened to anyone else!!!!! i'm still researching, and what i found out so far is that certain characteristics of an autistic dx is similar to adhd!!!! this is so aggravating. i was just starting to feel good that he's improved so much, for this doctor to switch up!!!!

Hello,

I am new to this forum. Just wanted to share what I was reading recently on the web.

http://www.patsullivan.com/blog/autism/index.html

It has a lot of information re: mercury and autism. Also some neat stories.

Just thought I would share.

Thanks,

Elizabeth

Greetings. This is my first visit and posting to this site. I can't tell you how validated I feel reading about your journies through autism and PDD. Your stories make me feel as though someone may actually understand about what I have endured and continue to deal with on a daily basis. Here is our story, told in the hopes of helping another on their journey.

At 14 weeks pregnant, low AFP readings indicated that something was "WRONG" with our baby. Extensive testing revealed nothing.

His full-term cesarean birth showed him to be a 7 lb. 10 oz. "preemie". His jaw was slack; he could not breast feed. He was jaundiced. He spent 11 days in the NICU while docs tested him for many things. Aside from those two issues, docs found nothing.

He developed very slowly. We heard no babbling. He ate little. He sat up for the first time at 9 months old. We had his hearing tested. (Normal) Finally at 10 months we had him evaluated. The doc issued the diagnosis of cerebral palsy, and suggested early intervention therapy and constant play to stimulate growth in his brain pathways.

I called the local service organization, and the home therapy sessions began. Occupational therapy, physical therapy twice a week for a whole year. He began to walk at 16 months, but still could not (or would not) talk. I thought that the idea of therapy was to help my son "catch up" to the skill levels where he "should be". As time moved forward, he seemed to go backward. I felt so defeated at this point. The more I did for him, the less he thrived. This went on for three more years.

When Jaden was four, his father (then my husband) decided he could not cope with these issues any more. The last straw was when I watched him kiss our daughter good bye, but not our son. Our marriage ended, and I moved myself and the kids to a new place. I found Jaden a new early intervention school where he showed improvement almost immediately. The teachers and therapists there inspired him to participate and interact. Two weeks at that school and he called me "Mama" for the very first time!

He's been showing steady development since, and the school and I concur that he meets several criteria for ASD. I implemented the GFCF diet with the help of my new husband (who loves BOTH my children as his own). The diet has improved Jaden's language skills, as well as our moods. His arbitrary tantrums, puffy and watery eyes, and runny nose disappeared when we removed dairy. When we removed wheat, his vocabulary increased exponentially. He still has trouble pronouncing words, but he is more willing to attempt speech now.

Our journey is far from over, as he is only 9, but this, in a nutshell, is where we are today. I hope this story has helped you, as much as it helped me to get it off my chest.

Swansong38875.6098842593Hi, my name is Michelle. I have three birth children, two grown, 24 and 21, one birth son 16, and two adopted special needs children.

I was in nursing for 10 years, a treatment level foster parent for our state over 12 years. And have adopted two special needs children from our state. A girl we got at age 4 with many issues, she is now 13 and doing pretty good. A premature baby at 4 months with many medical issues and challenges since birth. He is now 3 and legally ours, but still has reflux, asthma, behavioral issues, adhd, ?mild autism, etc...

Anyways besides all the medications he takes we have found that weighted blankets work well for him, and especially weighted vests! He has a weighted pillow for the car and a weighted stuffed animal to carry around with him. The really do work great with the sensory issues and behavioral issues as well.

I actually started making them for friends and his school, now have an ebay store where I sell them "Natural Remedies for Autism Adhd" I sell them on my own as well, but the store will give you an idea what my products are like.

My main goal is to help children with adhd, autism, and their families get the much needed items at an affordable price. Catalogs are rediculously priced!

Thanks and God bless you all
Michelle
Daniel's mom started bleeding in second trimester. Placenta with a hole. At birth cord around neck with blueness and oxyagen deprivation 2 times. She noticed at 4 months something was up. Now he is 10yrs old. He has always been difficult/different. He stress's her at times. Her own struggle with Petimal epilepsy/Sid in child hood helped her help Daniel. Her pushyness is what is helping our son out.

My daughter Marley has come along way .We took More than words program.. Now i can use the hand over hand techniques with out tantrum! and also she will put a puzzle together,which she would never do before. Plays with her toys more effectively. Overall she is more happy,she will now look at you once in awhile, in the eyes. It just goes to show with intervention children with Autism can learn new things. early intervention is very important Iam just so proud of her. watching her actually play with toys properly, it brings a tear to my eye Well done Marley, all of our hard work paid off. I would like to thank Everyone involved at the Thames valley childrens center in London, ontario. you know who you are! You have made a big difference in my childs life of learning!

Marley has learned that she can read through a book with mom or dad from the first page to the very last!. Tantrums are few and far apart and she is know ready to learn. Marley is 3 years old and almost non verbal, we recieved help with the pecs program, its really great for her since she only has very few words.

I think everyone that has a child with asd should read the book more than words it is fantastic.. Teresa

hello everyone its mattewsmom,

the summer has been hard for mattew. he needs set days, like school.

he is doing fairly well.we have been going to see doctor. hopefully maybe our road is getting shorter to finding out what is going on. next mounth is more testing. so i will keep you all posted

later mattewsmom

Hey everyone! My 5 yr old son has been diagnosed with Asperger's Syndrome and we are dealing with major behavior problems. He has had medical problems all his life including but not limited to: 8 week preemie, Prune Belly Syndrome, Chronic Renal Failure, many surgeries and hospitalizations, pneumonia, urinary tract infections....the list goes on and on. He had a kidney transplant in 2003 and he used to be a very happy, laid back child...even during dialysis. Shortly after he turned 3 he started changing. He has gotten OT, PT, & ST since he was 8 mths old and we are so lucky to have a special needs daycare program here in town! They have been a blessing and they formed the diagnoses of AS or he would have been always thought of as a rude, misbehaved, spoiled brat. As his mother, I have doubted my parenting skills over and over b/c of this. I work full time and his father and I are divorced, I'm remarried and we are all very involved in Jacob's life, he is very loved and has taught us so much! I'm so happy to have found this site and I can't wait to hear others experiences.

"The 1,000 School Inititative"

We want 1,000 Autism-Friendly schools USA by next April, 2007. I have dedicated this year to spreading the word: we are moving into an Autism-Friendly world. People will find out it's easy and fun to become Autism-Friendly. Schools can find out what to do, and can register on The Autism-Friendly Directory at Autism-Friendly.com.

I am writing my third book about autism with co-author Pia Hamalainen, MF-savant. But, I was inspired to do this by Ramonita Scott who read my second book and the discussion about making organizations Autism-Friendly. She invited me to attend the celebration of her daughter's school Copenhagen Central School on April 27-28. They are the first school in the USA to officially declare themselves to be Autism-Friendly. While there I announced "The 1,000 School Initiative".

By the way, my books represent a positive view (not typical 'academic').
"Autism and the Crisis of Meaning" - Our society is experiencing a crisis of meaning - and that is why we do not understand autism.
"How To Understand Autism - The Easy Way" - Plain language, simple way to begin explaining autism - tips on communication and becoming Autism-Friendly.
"The Shape of Autism" - next book with Pia Hamalainen -MF-savant - promises to be most detailed explication of autistic perception, most positive, total paradigm shift inevitable - preview at Autism-Friendly.com.

...and that's my life with autism in a nutshell - so spread the word!
We want to see

1,000 Autism-Friendly schools USA by next April, 2007.
AlexDurig38889.3695138889

DEAR NEALMICHELLE,

HEY ITS NICE TO MEET YOU. WAS GLAD TO HEAR FROM YOU. WELL TO TELL YOU A LITTLE BIT ABOUT MYSELF. I AM 33 YEARS OLD MARRIED HAVE 2 CHILDREN A 9 YEAR OLD SON SPECIAL NEEDS CHILD MATTHEW AND A MEAN 7 YEAR OLD GIRL ASHLIE. WELL THE REASON I SAY MEAN THERE IS NOTHING WRONG WITH HER JUST MEANOUS HAHAHAHA

ANYWAYS I HAVE NOT HEARD OF A WEIGHT PILLOW OR ANIMAL TO CARY AROUND CAN YOU PLEASESEND ME INFO TO MY E MAIL

littlesis001 @yahoo.com

thank you sherri

HI I am new to this board. I have four children, my youngest will be 4 in November and was just diagnosed with PDD-NOS and with an anxiety disorder. She has had many physical difficulties since birth. She has a mitochondrial myopathy which causes a multi systems problems. Very delayed motor skills, she has a feeding tube etc. We put her in a special needs preschool when she turned three and then it became more obvious that more was just than just physical problems. She has problems socially, perfers to play alone or not play at all. More of a spectator. She has sensory intergration disfunction so she gets over stimulated easily and melts down at home in the afternoons. We always thought her expressive speech was at an age apprioate level but have begun to discover that most of what she is saying is just repeating things she has head from others (including me) and from movies or t.v. She recently told our relator that "her breath stunk" from Shrek. She does seem to use the repeated language approiatly most of the time but it is obvious from the intonation in her voice that she is mimicing what she heard others say. She will begin pragmatic speech therapy in the fall when preschool begins. Sher perservates on certain topics, movies, fears etc. She'll watch the same movie 10+ times in a row. Wants certain foods (always three pieces of bacon at a time). She also has severe anxiety that we are working on with a bahavioral psychologiest. Well sorry for the long winded introduction.

hi everyone....my son erik has autism and is three years old. we realized that he was not giving eye contact at an early age and got him into ei services now he is in preschool with specialist all day long

we are happy to report that he is responding to tx and we work with him often

he can say a few words and the other week we got excited because he put a two-word sentence together..

i am glad this board is here for support.. i look forward to talking to you all often

Therapies have been a god send for Daniel. This pregnancey was a disater and so was the delivary. I see him as miracle baby that should be dead. God always sends a miracle baby.

Hi,

Trevor is 27 years old. His diagnosis was when autism was a rare event. The diagnosis wasn't a lot different from other autistic kids other than he is severely autistic and still non-verbal at 27 years old.

You have to keep your sense of humor. No doubt you have all seen the film Rainman with Dustin Hoffman. That movie helped a lot. Prior to that movie many people were offended by Trevor's public behaviors. Now, they realize that he is disabled and are much more accepting or, at least, tolerant.

I have many many funny stories, if you have an autistically adjusted sense of humor.

Trevor loves to ride in a car. Most days he insists on a ride in the car and persists by leading you gently to the garage door until you take him for a ride. If you don't, you may find him sitting in the car waiting for you. Often he will grab a set of keys and you will find the house keys in the ignition when you go out to the garage.

Well, a couple of weeks ago, not long after my wife came home from work she was back in the master bedroom and I was working in the den, near the door to the garage. I heard the door open to the garage and dismissed it as Trev going out to sit in the car or get something out of the garage refrigerator. Suddenly, I heard the car start up. My wife ran from the back bedroom and beat me to the garage door, where we found the car with the engine running, but Trev had gone around the other side to get in the rear door to his seat. Luckily, the car was still in Park.

Now, we hide the keys to the cars.

Guess there is a bit of Rainman in him, but it scared the heck out of me and my wife. And, perhaps a word of caution to other parents whose autistic kids may be of like mind.

Ray --

That is the single most inspiring story I have read
Your sense of humor should be a revelation to everyone
God bless you
My mom is Aspergers and I thought today about writing a book of all the funny things she says -- I would have to wait though because I would never want to offend her
She calls Captain Picard on Star Trek "Dr. Pecan"!
But your story hit a nerve -- thanks!

Alex
www.Autism-Friendly.com

Hi Alex,

Thanks for your kind words.

Glad to see that you can appreciate the humorous part of your Mom's illness.

It isn't all fun & games -- but what else are you going to do? You may as well enjoy the fun part of it.

Autistic kids definitely do have a thinking process. I think every parent could write a book of anecdotes.

[QUOTE=Emerald Lady]

Thanks for listening and reading.

[/QUOTE]

HI. New mom hear,

It's 2:51am 7/18/06 and still cant sleep. My son Diego was born on 9/22/2002. The joy of my life. First born after 3 misscariges. I Had a "perfect pregny" great delivery and my son would seep through the night from the age of 4 months. I seen somthing wrong with my son when he was about 6 months of age. Just was not the same. He started walking at the ago of 9 months gave kisses and laught for no reason. His motor skill were always advanced, but my angel just was not speaking. Since he stated walking he was on his tip E toes. His father was the same way they said. At the age of two he was still not speaking very well one or two words would come out but that was it. I worked from home since he was born so he never had any interaction with other children. This is what i told myself....

I took my son to a pre-school on 7/12/06 and was told my son had symptoms of a child with Autism. !! IT WAS LIKE SOMEONE RIPPED MY HEART OUT!! NOT MY BABY...WHY?? WHY MY ANGEL HE HAS DONE NOTHING TO DESERVE THIS!!

As i sit here another sleeples night i'm trying to understand why and what can i do to help him live a normal life. I have come to the conclusion that it me. I have not stopped crying for days. Havent cooked a good meal, cant leave the room and wont pick up the phone. It hit me today 7/17/06 (my birthday) that i will be re-born. No one can speak for my son then me... I am his back bone and it's up to me to show him that he is no diffirent then anyone else. Everyone is diffirent and that is how GOD wanted us to be.

He has not been diegnosed yet, but i've none and just have denied it.

Odd things he does:

Repeats words and songs from dvd's all the time.

Can not have a give and take conversation.

Picky about his hands being dirty.

Lines up his crayons and toys.

Great things he does:

Can figure out remote controls befor we do.

Great moter skills.

Very loving, hughs, kisses and always wants to learn.

Is quick to learn anything new with in a few minutes and wont ever forget.

Loves to play and has no problem with eye contact.

As mothers with autism childrent does he fit the profile???

Please help

Hi Emerald Lady

Sorry to hear that you're dealing with so much. Unfortunately all I can say is hang in there and fight for your son. He has rights under the law. Here in AZ we have an agency called the Center for Disability Law. I'd look for a similar agency wherever you live. They can help you understand your son's rights--at school and elsewhere--and even provide an advocate for meetings & hearings (if it comes to that). And, if at all possible, find a support group or something for yourself. Between your husband being gone and your son's needs being paramount, you've got to rejuvenate yourself. As tempting as it is to quit nursing school, you might actually need to continue for your own benefit. (Just a thought). Anyway, thanks for sharing and keep up the good work!

Hi, lama,

I feel for you! What you are experiencing is what I experienced when my son, Steven was diagnosed at age 9. Even though I knew when he was 2 that he possibly was autistic. Your son sounds like my son, and my son is high functioning. The most important thing you need to do is get him diagnosed and into an early childhood program ASAP. Next, you need to get yourself into a support group or some kind of counseling where you can sort this out-I did both and it did help me. Then make sure you work with your school district as a partner in your son's edcuation.

My son has had a wonderful experience in Special education (Illinois), and he has grown by leaps and bounds. He is now 17, a senior in HS (he's currently in a school for autistic kids). He is a eucharistic minister in our church after being an alter server for several years. He has a volunteer job at the American Cancer Society. He has done things the doctor told us he would never do.

I think you are on the right road now. Keep that fighting attitude, and get your son diagnosed and into the right classes.

Good luck to you and May God Bless You,

Kathy

Hi,

There is cool Tool for kids. It has Animated stories, Text stories, and Images stories. I think it is pretty good and fun Interface.

Try it here > http://www.jambav.com/jambav/playit.php?uniqid=UGCTIYCKYHMQB IFMLGJPVEDRK1153470268079&game=7&id=58&extra=A

You can also contribute your story if you want.

And you know it's FREE!

Plash
plashmaddy38919.0640625

Hi... How happy I am to have happened upon this place and am looking forward to peruse and share with you all.

Tish

Daniel's story: Mom had placenta whole at 18 months and bleeding. Daniel had cord around neck and blue at birth. Lost oxyagen 2 times after. At 0-3 months doing fine. At 4 months thru self against a wall. 6 months trowing self at floor.Eacraches/antibiotics came. Never babeled! Tubes/adnoids out at 9 months. Craweled 1 legged. Eci came at 15 months. Was always a screamer. He is still loud as so is his mom. Loves family.Clingy to Mom.He was getting some speech until shots at 12 months. Since then down hill from here.

My son was born November 4th, 2002, and we couldn't have been happier. He was the first child for my husband and my 3rd. All of which were boys. He crawled at about 5 months and was pretty on scheduled with everything else. In our state, their 1st and 5th yr shots must be on or after their birthday. This would not be the case for us. We had a well baby check up in Oct 03, before his first bday, they went ahead and gave him his first year shots. They called us in Dec 03 and said they would have to redo his shots so his record was right. I should have went with my gut on this one and said no. But we figured better safe than sorry.

About a month later we were really sorry for our choice. Our perfectly normal developing child was slipping away. This doctor we used was so crazy. My son had 7 ear infections before one yr old and I had to beg to get a referral to a specialist. Two days before Thanksgiving of 03 he had tubes put in. Anyway after that and the numerous rounds of antibiotics, and the double doses of shots at a yr old. We finally had had enough and found a different doctor.

Within 4-6 weeks of the second round of MMR and Varicella(chickenpox) we were losing our son. He stopped making eye contact, we couldn't get within 2 feet of him. He lost all of the speech he had. We didn't worry to much. He also started having a lot of upper respitory problems. More antibiotics and steriods like they were free. At his 2 yr checkup we voiced concern to his new ped about the speech. He referred us to Birth to 3 for an evaluation. There was a meeting at our home with all of us and four or five therapists. Each of which did their own assessment. We started picking our brains as what was causing this, one of them asked about his shots, what he had and any reaction. My hubby and I both looked at each other and you could see the panic. We mentioned the double doses, they freaked out as bad as us. We were later scheduled to go to Chicago for offical diagnosis. That is when we first heard the words Autism. They still ring in my head everyday. This was 4 days before Xmas 04, Merry Christmas.

We both from the beginning never thought of this as a disability for our son, but as a challenge for us. This was not gonna stop our son from being perfect and doing anything that he desired. We started school, half days, Nov 05. First couple of weeks were rough, by the time school let out for the summer, he was making great eye contact, would sit for circle time up to 25 minutes, working on potty training. He has made huge strides. We also started biomedical in Feb 05. We started on GFCF diet, it's awesome, and some supplements. He's done very well with this. Nothing will ever stop us from finding a cure or recovering every child. I have learned the hard way not to trust any doctor with your child. My child will recover from this and my life mission is to make sure other parents know about this to help them in anyway I can.

If anyone has any questions or comments please feel free to post or drop me an email

Keep fighting the good fight

i am a mother of 3 girls mackenzie(5) savannah(3) and taylor (1). my oldest was very on point ,she crawled early walked early and talked early,But savannah crawled walked and babled normallyand i always said i couldnt wait until she talked to me!And then her fist birthday came and went and still noyhing ,no words,then her 2nd birthday came and went and she seemed to make progress but not very much.Then i took her to the docs for a check up and they acted as if nothing was wrong so i got her in to speech therapy ,well we have been doing this for about 1 year and there is really no progress so i got a referal after i begged and went throu another doctor to see a devlopmental specialist. the doctor sat with us for about 10min while she kicked and screamed and pinched and told ma she was not autisic....Well what do i do?i still take her to speech and still no real progress.She tries to hit and pinch the therapist and me i dont no what to do her sisters are on the defence all the time and so are her father and i its so hard. Ineed some people tp talk to to compare and see how to make progress with her.

I am a proud mother of three daughters Hannah (8), Emily (6), and Kathryn (3). My story starts in September 2000; my daughter Emily was developing normally. She was sitting up and showing intrest in me, and my husband, but she was also very independent. She hardly ever cried, and was content to sit in her bouncy chair for most of the day. Then she stopped sleeping through the night, or at all for sometimes three days straight; then when she did sleep it was during the day. I thought that this was just a faze that she would outgrow. Then I noticed that she became more and more withdrawn. Going from different types of floor would cause her to get down on all fours, and swing her feet around to the new floor. This made me think that she had a problem with her vision; so I took her to her doctor. Little did I know that the cabinet banging, ignoring, not wanting to drink from a cup, unsteadiness on floors, jumping, hand flapping, and of course lack of sleep was caused by Autism. I was devastated. It took my daughters wonderful neurologist to get me to understand what I was going through was normal for parents of kids with Autism. Then I decided I would have another baby, and when she was born it felt like a repeat of my oldest daughter, who is not on the spectrum, She gave me none of the warning signs that Emily did. She even started to repeat words and phrases that she heard. I thought that she was just copying the odd movements of Emily. (jumping, rocking, locking jaw, hand puppets, and flapping) Then like a brick wall it hit me that Kathryn also looks at books for extremly long periods of time, chooses not to play with others, and spins in circles. So in June of last year I turned to the same wonderful neurologist who, of course, said within 5 min.of meeting her said that she also had Autism. Emily was diagnosed in Feb. of 2002, and Kathryn was diagnosed in Nov. 2005.

It has been a very eventfull, and remarkable journey. I love my daughters so much and learn so much from them everyday. They are both non-verbal. Since she was diagnosed Emily has also began to have seizures. I am glad I was able to share my story, and thank you for taking the time to read it.

Hi I am fairly new to this board. My six year old son has ASD (autism spectrum disorder). I have been fighting an on going battle all this summer with our neighborhood HOA. My husband and I built our home in our neighborhood 5 years ago. At the time my son was barely walking and really had no signs to any disability except speech delay. At the time that we moved into our neighborhood they told us that only our street could not have a fence in our back yard. We did not really think this would be a problem at the time we did not know how things were going to change. As my son has gotten older and is now showing all signs and been diagnosed with autism. It is hard for us to go places with him. He is always running off and we have to keep a hold of him at all times. He does not understand danger at all. Going to the park is very hard. It takes me and my husband to do this because he will run away if you are not next to him. It makes the time spent outside so stressful. Here is my problem. My son loves it outside and needs to be outside. But because of the fence rule in my neighborhood he can’t even play in his back yard. He is a prisoner in our home. He is getting faster now and I have a hard time catching him. We live close to the street on the corner so it scares me to death. If I had a fence I could go outside with him and play freely and it would be so wonderful. My parents live an hour away and have put up a fence for my son. He does so well there with the fence and just has such a great time. But with all of his therapy and the cost of gas it is hard for me to go there once a week. We have asked our HOA if we could have a fence due to our circumstances. They denied our request and told us that we would have to basically jump through hopes to get the by law changed. We have already spent 1,000.00 dollars in lawyer fees. I am so upset now that I cry daily because of this. My son has the right to be outside in the sun. We have a yard that we can’t even use!! I have to watch my son stand by the window and stare outside daily. He cries to go outside. We have even considered getting a service dog for Jacob just so we can go for family walks that our less stressful for him and us. We have considered moving but the market is so bad right now we couldn’t even give our home away. Not to mention uprooting him out of the home that he knows and understands. As parents of children with autism you can understand the stability there. My son should have the rights just has the neighborhood kids down the street to play out in his yard. It is not his fault that he does not understand to not run off. If he had to be in a wheel chair would they not let me build a ramp on my home!!! If anyone knows more about the rights of children with autism please let me know.

My son was never 'normal' from birth. I told doctors over and over that something wasn't 'right', but he always passed all the screening tests ok, or so they said. At 2 I had him tested thru the public school district. Checked out fine. Then 3, checked out fine. They hardly had him speak for God's sake!

I specifically said he doesn't communicate. Then one lady said when he was 3 that he was a bit 'delayed' in his communication areas. YA! ya think!?

So Finally I convinced my pediatrician he needed to go to a very good expensive specialist. So that was 2 days ago. He is now 5 and finally got his autism and ADHD diagnosis. NOT that that is a good thing, but at least now we can move forward. Such red tape

Makes me sick most days! I have been at the end of my rope most days with my son. He is high functioning so everyone thinks he is ok and just 'playing me'. ya right! i have 4 kids, he is the 3rd, and discipline ALWAYS worked with them. What is up with HIM!? the 5 y.o. lol. Most days I feel like a zombie

. He's a very sweet kid, just hard on me most days. He asks the same question like 100 times a day, literally. I mean, when a kid wants to ask the same thing over and over how do you discipline for that!? I put him in his room. Fine. 2 minutes later he's out asking the same question!

Well that's about me and my son. lol.

help! i dont know were to go now or you turn to.my 2 autisic little men are my grandson,s my husband adopted they are now 6,7 we have no family no frnds no help from our community nothing and our marriage is suffering we neve have enough money we have never got to on vaction everyone says we need more alone time but no one offers to help my husband and barely speak to each other let alone anything eles.i just dont know were to go hopeful someone seeing this has some info that can help www.unicorn101@verizon.netTo autisticmom2,

Where do you live? If you live in South Florida I will try to help out a little bit.

Kind Regards
Alex
www.Autism-Friendly.com

I HAVE A AUTISM CHILD (NEVEAH) SHE IS 3 YEARS OLD SHE GET SEIZURES BUT I WILL LIKE TO KNOW ONE THING MY APARTMENT WAS TEST FOR LEAD AND IT CAME BACK POSITIVE, NEVEAH TOO COME OUT WITH LEAD IN HER BLOOD I AM SOOO MAD WITH ALL OF THIS .I AM GOING TO COURT WITH ALL OF THIS AND DOCTORS APPT WITH MY DAUGHTER I CAN NOT TAKE ONE MORE THING, BUT AS A MOTHER I HAVE TO DO IT. THE DOCTOR TOLD ME THE SAME THING ABOUT MY DAUGTHER I WAS READING SOMETHING ABOUT DOCTOR AND IT SAID THAT THEY TESTED 100 DOCTOR TO SEE IF THEY CAN SEE ANY DELAY ON CHILDERN BUT THEY DID NOT LET THEM KNOW THAT THEY WERE AUTISM AND 80% OF THEM DID NOT SEE NO DELAY SO YOU SEE THAT DOCTOR SOME TIME CAN NOT SEE ANY DELAY US AS MOTHER OR GRANDMOTHER WE DO NOW THAM IT IS HARD FOR US TO BE MOTHERS AND PLAY DOCTOR AT THE SAME TIME.I ASK WHY BUT THAT THE GOV DOING

neveah mom38940.419837963

Hi, Neveah Mom,

When my son was 2, he had lead poisoning. Our house was tested, and they found lead. We had to repaint to seal the areas where lead was found. Steven's lead level was 19 when it is supposed to be under 10. We had to make changes in our whole family. It was a difficult time, but we got his lead level down under 10, and he has not had any repeat. No one else was affected; just him proably because he put everything into his mouth. Our son is high functioning, but he has learning disabilities in reading comprehension which could be a result of the high lead levels.

Lead is caused by old paint that was used before the 1980's and copper piping. There are probably other causes as well, but these are the ones we had.

Doctors are not perfect, even though some think they are. They see many children, and unfortunately, because each child is different and they develop differently, we parents have to let doctors know when our children are developing poorly, and we have to push hard for the services our children need.

Choose your battles carefully; not everything can be solved through costly leagal battles.

Good luck.

Neveah Mom, lead poisoning can lead to a variety of health problems, including seizures and symptoms attributed to autism.

It would be a wise choice to have Neveah retested for autism by a certified psychologist/psychiatrist ( psychiatrist recommended ) and inform that person of the lead poisoning.

Especially seizures are not normal for autism, so there is a good chance that either your daughter does not have autism ( just a lot of the symptoms ) or might have Rhett's Syndrome, Rhett's Syndrome can often be testen genetically.

Hi,

My name is Brenda. My son Aren is now 14 years old. It was not easy getting to those 14 years, but with God's help we're still here. Aren was born with a hole in his lung in 1992, whether or not that had anything to do with the autism I don't know. When he was an infant I thought he was the smartest child in the world. At 4 months he would hold his little fist up for me to kiss it, pull it back and put it back to my mouth again. Every thing was developing normally until about 3 1/2 when he stopped talking gradually. Up till then he knew and could identify the letters of the alphabet and could count to 100. Now at 14 he has to be monitored constantly. I have to confess that I am not a good housekeeper, but Aren can put a team of cleaners to shame. He has also escaped from home in the middle of the night five times over the years with police and children's services involved. Now imagine a non-verbal handicapped child escaping when everyone's asleep after taking off ALL of his clothes? and the house is a total wreck? My husband has actually had to move out of the house and keep Aren in a separate dwelling because of our other two children a boy 10 Odero and a girl 7 Camara, both bright, healthy children with no developmental issues at all. He fights, bites and pinches. We had real trouble with the school district getting into a school that could really help him, but finally it was the teachers getting tired of abuse that swayed the district in our favor. Aren is over every day though and some of his interests include running in the park, riding in cars, and McDonald's. Why is it that some children can read the symbol of the arches and nothing else?

Brenda4JC38946.4559143518

Hi I just joined this forum tonight and I am glad I did as it seems that there are many of us parents around the world who need someone to talk to..

I am a mother of a 2 1/2 year old daughter named madison and we found out that she had mild-moderate Autism when she just turned 2. Madison was fine at birth with no complications at all apart from a bruised lip. Eventually that bruised lip started to change colour to a red near her nose and then started to grow. We found out that she had a facial hemangioma (a strawberry birthmark) when she was 3 weeks old, and was then given oral steroids everyday untill she was 7 months. After that her mark stopped growing, and is now in the phase of dissapearance..

Madison is a very clever little girl, but she has trouble with communication, and telling us what she wants as she is non-verbal. She says mum a lot and all these other words that I do not understand. She is in early intervention at the moment (home visits) by a speech pathologist and a psychologist. We have only just started using PECS (Today actually) and she is doing so well already. Madison tends to get a little upset when she does not get what she wants, and especially at the time she wants it. I have had to apply a very strict rule with her that she is not allowed to dominate me or her daddy. She seems to get the hang of it ok...

She also has bad eating habits, and is very scared of public place. I can not take her out with me in public places as she throws a tantrum and wants to run away...

I am hoping that things will get better, and I hope that I can get to speak to some of you on this forum..

THANKS FOR READING OUR STORY!

A formal hello to everyone. I'm a fourteen year old individual with high-functioning autism with a story to tell.

When I look back about two years ago I had medium-functioning autism. I exhibited behaviors that others found undesirable. I yelled in the middle of class, wouldn't look people in the eye, and didn't do well in social situations at all.

During the summer two years back, when I was about to be enrolled in eighth grade, I started to have moments when my head felt very dense, but with no pain involved. These became more frequent as time went by. During one of these strange headaches something, it is elaborate to explain, clicked. I started to understand why people did they things they did, and I understood that I needed to observe to understand it.

I told my mother one day, after I felt I gathered enough information, that I was ready to try regular courses instead of special placement. I was a little worried at first, becuase it took some adjustments to get used to regular courses, but I did well. I graduated with a 4.0 GPA. The teachers called me "The Miracle Child".

I'm searching for someone else that has a similar story to mine. I'm looking for relation. Do you have a child, or are you a child, that had these strange headaches accompanied with autism?

Thank you for listening to my story everyone, and I hope I can someone to relate to here.

Hi,

We have a 27-year-old autistic son who is totally non-verbal, so he can't tell us what is going on in his head. He appears to have serious headaches at times, but there are other times when he just stands there as though there is some unusual thing passing through his head, then he resumes whatever he was doing. It sounds similar to what you describe. Unfortunately, he has no way to tell us what is happening.

[QUOTE=ragmor]

Hi,

[/QUOTE]

How long have these headaches been happening for? (I can say that autism sometimes corrects itself with age.)

The best way to communicate with autisic people is by understanding their personality. How does he act? If he likes using gestures to communicate then sign language might be a good alternative from verbal language

He is 27 and I would say he has had them for as long as I can remember. We would be shocked but very grateful if his autism suddenly corrected itself.

We tried sign language many years back. He never really responded to it and we lost what we had learned about sign language ourselves. We do pay close attention to him when he is up and about and he often shows us what he wants.

I am new at this...I have a 2 yr. old son that is recieving early intervention since he was 18 m. old he will turn 3 in Dec. He started speech and OT in March when he was about 27 m. He has progressed sooo nicely but is still having difficutly understanding me. He doesn't have that much of a vocabulary but when he does speack it is nice and clear. His speech therapist says that he has a language delay rather than a speech delay. He really looks like a "normal" boy except there are little things he does that makes me think he might fall into one of the spectrums. When he was 25m. old I took him to a ped. neuro-developemental dr. she did not "diagnose" him but she did mention PDD. I am on the fence whether to take him to another dr. Part of me says to take him just to get the "answers" to all my questions about him and part of me says "what for if they are just going to "label" him" and he is getting all the therapies he needs right now. I wanted to know if anyone else went through this or is going through this and any advise or ideas they can give me.

Thank you

momwithhope!

To: ericiacomeon

You can check with your local Autism Society and they normally have activities, that helps when they are around other kids with the same problems. Also, my son (10 years old) responds well to social stories and to 'modeling' when other kids without autism act out how to do something (he too has had problems with making new friends, but is making great strides now-thankfully). He seems to mirror what he sees other kids doing. Of course, this can be a trial and error process since every child learns differently, as you probably already know for a fact. I hope this helps you some, please feel free to ask anymore questions, I would love to help.......

To Mom with Hope,

I took my son to see 3 different specialists because I wanted the label of PDD/autism. The first 2 wouldn't give me a diagnoses of autism (they said he was too social etc.) I knew since he was 12 months old that he was autistic. He was 4 when he was finally diagnosed. The Dr. came in hour late for his appt. and she could clearly see that he was autistic. In my case I feel the label has helped him. He is now able to receive a tremendous amount of services because of it (through our district). Those services have completely changed his life. He has an amazing autistic consultant that comes in and has trained all the people that are involved with him. He is also entitled to 5 days a week of speech,OT etc.. (he no longer needs that much). He will soon be turning 6. If you were to see him in a room full of his peers he blends in so well. He will be starting 1st grade on Wed. I couldn't even begin to tell you how proud I am of him. He even has a friend that he made in class from Kindergarten.He plays and interacts and has learned to control his stims. All very appropiate. Every child is different, but in my case I feel that it has helped him. I attend a support group and I have never heard a parent say "I wish he wasn't labeled"

P.S. I am glad to hear he is making steady progress. Are you doing any ABA?

Hellina38961.206087963

Hi Hellina,

I am sooo glad somebody finally wrote me back. I want to hear anyone's story especially if it helps me figure mine out. I have so many questions I don't know where to start. Ok so u knew at 12 months that he was autistic...why? Did you do early intervention or did you not have that available to you? Your child was too social? What kind of things would he do that the dr. sd that? What are stims? What is ABA?

I will tell you that my son is very caring he doesn't mind being touched like the typical austistic child. The eye contact is getting better but still not so great. Like I sd his speech is very clear, it's just a lot of repeating what I am saying. The only way I can describe it, is that he just doesn't get what some things are. He just started learning to "give" me something when I say to "give" it to me. I guess I am hoping that with all the therapies he is recieving something in his head at one point or another will "click". In Dec. he will turn 3 and he will be put in a preschool program that they offer here in my district for a half a day and at first I was very scared for him but now I am very excited because I know he will benefit a whole lot from that and hopefully improve a whole lot.

Thanks so much for writing me back.. I hope to hear from you soon.

momwithhope

Hey momwithhope;

My suggestion, (having twins with PDD, who weren't diagnosed until 3 1/2...we took our daughter to two different neurologists who both diagnosed her with "P&V", and prescribed sedatives.).is to listen to your heart! If you think your son needs more diagnostice, get in touch with your local Autism society or ChildFind. The PT from Childfind is the one person who knew and recognized my daughters' sensory integration issues. Most physicians don't know much about autism spectrum disorders and many don't want to admit it, either. Don't listen to so called "experts" if it doesn't jive with what you feel is going on. You know your child better than anyone else in the world!

awarp...mother to three preemies and twins with ASD's

This is to momwithhope

When my son was first diagnosed with PDD, I had a girlfriend who told me that since i knew what was "wrong" with my son, I should just leave it at that. It wouldnt be right to "label" my son. She has a set of twins, one boy and one girl and her boy was born with all kinds of difficulties. He just graduated high school, but he was graduated so the teachers wouldn't have to deal with him any more. He can't read well nor can he write. She never went to have her son thoroughly examined to find out exactly what is wrong and what can help. Needless to say, because of that fact, I didn't listen to her. I'm glad i didn't. With the "title" of PDD or Austim or whatever the diagnosis is, you can get all kinds of services for your child as i have for my son. My son would NEVER just get promoted to the next grade level unless he deserves it. The teachers seem more likely to sit with a parent of a special needs student, even though I was having problems at my son's last school, i can have one of my son's advocates sit on school meetings with me or for me if the schedule is in conflict. My son is involved with the Department of Public Health, the Department of Mental Health, and we are also involved with the Federation for Children with Special Needs. Sometimes the so call "label" is also beneficial to the parents, because at any time i can call one of his advocates and just cry and /or scream if I need to. My son has made TREMENDOUS progress over the last two years, he's in kindergarden again this year, has a wife and a girlfriend. He fits in with the rest of the classroom as a "normal" child with differences. I love the students in his class because they do accept him and look out for him during his little "difficult times" in class. They don't make fun of him or anything. Anyway, I wouldn't really call it a label, its just what you would call the difficult times that we have with our kids. I'm sure someone might disagree with me, but this is what works for me.

Good luck to ya.

Evy

[QUOTE=celebrating] <FONT face="Verdana, Arial, Helvetica, sans-serif" size=2>Benjamin is dx PDD-NOS, very high-functioning except when stressed. A few years ago, I decided that Ben needed swimming lessons. I talked to the staff at the pool to make sure that they understood that Benjamin is not a typical 4-year-old. They stsill put him in a group of 6 kids, in water that was too deep, and dunked him. As you can imagine, trauma set in. The next summer, the city recreatioin department offered Adaptive Aquatics with OTs. PTs, and graduate students studying Adaptive P.E. I signed Benjamin up, and the miracles began. Like many kids on the Spectrum, Benjamin didn't like water dribbling down his face, or getting his hair washed, etc. He now, in his 2nd year, throws himself into the water, is learning a real stroke, plays splash with the instructors, and goes under water for quarters. The little dophin is almost ready to give up his swim mask for goggles. Benjamin is almost 7 now, and those that are knowledgeable about the finer points of competitive swimming say that Benjamin has a natural body for the water. Can you imagine? The same kid that couldn't stand any splashing water, growing into a competitive swimmer. movie rights.......?????? [/QUOTE]
Proud mom- victories like that one are worth celebrating my son wwould not go swimming in the pool for a long time for the craziest idea that it was deeper one area than another because he saw small tiles in the pool. I would show him that they were not different. He now swims like a dolphin as well and we swam the length of the pool together. Yes make a movie out of it if you can.He can show othersa the meaning of perserverence. Jeff

I wanted to reply to momwithhope. I also have a son with a speech and language delay who went into our early childhood program with our district on his 3rd birthday. I have taken him to several doctors & some of them have mentioned PDD, but I don't think he has ever really been officially diagnosed with it. He has so many things going on behaviorally with his language delay that I think the Dr.s just lump the kids into the PDD category.

When I research PDD there are some things that sound right on with my son, and then some things don't apply. I used to be so scared of the term autism but now I'm realizing that because the Dr.s did mention PDD, my son is receiving a lot of services he needs-Speech, OT, Special Ed services, & a paraprofessional that is with him his half day in kindergarten. The only qualification in our school district to diagnose a child with autism is a delay in communication & delays in social skills. Well, I know for a fact he has both problems just with the speech/language delay!!

I suppose my point is that maybe you shouldn't worry yourself so much yet with getting the diagnosis. If he's going into a language based preschool program with the school district at 3 years old, he will probably blossom. If he doesn't, then take the steps to get him evaluated further.

Best of luck.

Sure would like to talk to someone about BEHAVIOR. This house has been turned upside down for the past month. AHHH!

HEllo,

I have an 8 year old son, who was diagnosed with Aspergers Syndrome (mild functioning form) at age 2 1/2. It took me 2 years to get a Dr. to take my concerens seriously about my son. All the physicians I had seen had told me *Your just a new mom, all childeren develop at different rates, He's a boy, boys develop more slowly than girls*. But I knew something was wrong.. He had pretty severe Jaundice until 4 months and was VERY collic. He did not communicate until age 5 without it being only grunts and pointig and shouting! He was not able to walk until age 3, nor was he able to crawl, until 10 months, and when he did start crawling it was backwards. I have had a hard time trying to understand my son, it is not any easier to do with a 6 year old girl who is healthy. Trying to explain to her why it is that her brother is always hitting mommy and yelling and throwing things, and why his face does funny things. My son also has Tourette's Syndrome.

My son's current diagnosis : Asperger's, Torrettes syndrome, ADHD, Aggression , Anxiety, Sleep apnea, and Depression.

It's hard some days to understand *WHY*, but I just remeber how much I love My son!!

Thanks for hearing my story, sometimes you just need to tell it to make it not seem so hard to bear.

Hello

I stumbled on to this forum whilst looking for one in the U.K. I'm a single Mom of 18yr twin boys.

My youngest son has a diagnosis of Asperger's Syndrome with ADHD, ODD, Sleep Apnea, agression, anxiety, panic attacks & depression. Originally he was diagnosed aged 4 with ADHD but, I fought for a second opinion.

My oldest son has a diagnosis of Classic Autism/Asperger's Syndrome he was diagnosed aged 10.

I have a diagnosis of Asperger's Syndrome.

Life at times can be difficult & also funny as we're so alike. As time passes you become your own little expert on your child and the Autistic Spectrum. I try not to take them both shopping with me in case an incident like packing the bags in the shopping trolley at the check out escalates into a punch up! This only happened last year!

They're not on medication only me - anti depressants. This helps with anxiety & panic attacks.

Aspet

Hi Christy!

I got your reply a couple of days ago...I have been sooo busy with the kids in school and stuff...I have 2 other children. My youngest who is almost 3 is the one with the delays. I am sooo glad you wrote to me and told me you think that doctors lump kids in that category because I feart the same thing. I would like to know what kind of things your son does or did that made you take him to the dr? How old is your son now? And since he started the preschool program have you noticed a huge difference in him? What kind of language delay did he have...was it that he did not "get" what something means or he did not understand you? My son is just starting to learn that when you give someone something you can say "Here, mommy" instead he says "thankyou, thankyou" until you take it. So was it the same with your son? I know I have a lot of questions. I have been very lucky because I have gotten a lot of responses from what I wrote and a lot of answers to some of my questions BUT I always like to hear and learn from other people's experiences.

I hope to hear from you soon...thanks again for writing back

momwithhope

Best of luck.

Sure would like to talk to someone about BEHAVIOR. This house has been turned upside down for the past month. AHHH!

[/QUOTE] Will is 5 years old now so I had to to back in my journal & really see what was going on when we decided to start taking him to the neurologist, psychologist, going to behavior conferences, reading books, etc., etc.! Will was very hyperactive, couldn't/wouldn't listen, couldn't focus, we were always yelling at him and then he became angry & was yelling at us & all of a sudden my home was so filled with screaming & Yelling & crying that we had to go to Dr.s for help. This was right before his 4th birthday. I knew a lot of behaviors had to do with the language delay... but he is hypersensitive to loud noises, crowded places, he gets overstimulated very easily. Sometimes when he tantrums over usually something very silly to the average child he goes into a rage-but he gets to the point that he doesn't know how to calm himself. He has come a long way since he started the preschool & therapy through the school district. He went into the program with probably 20 words... now he speaks clearly unless he gets excited or pretends he's in movie or something then he reverts to jargon. When he went into preschool he was also very aggressive because he was frustrated all the time. He's also onthe Gluten/Casein free diet which has cured the hyperactivity I swear. Now he rarely gets aggressive-he's just really loud & everyone knows when he's upset!! or excited!! His language delay & all the rest of his behaviors have to do with a processing problem, maybe its PDD, but I have to hope that as he continues to mature he will grow out of some of the behaviors. He gets really upset anymore because he just doesn't understand--that's the language delay. He's such a mystery to me. But every day is a new day.[QUOTE=momwithhope]

Hi Christy!

I hope to hear from you soon...thanks again for writing back

momwithhope

Best of luck.

Sure would like to talk to someone about BEHAVIOR. This house has been turned upside down for the past month. AHHH!

[/QUOTE] [/QUOTE]

hello,

I would like to reply to momwithhope, about the behavoir.. my son is 8 and has been in an IBI (intensive behavoiral intervention) for about 2 1/2 years now. It has worked well for most of his behaviors, ie... bitting, self injury, and he is mildly learning how to self recognize when he needs "calm" a soothing activity to re-center himself. We also do joint compressions and use a sensory brush to stimulate his nerves and capillaries, it seems to work...sometimes I just have to clear a room and let him get it out . Hope this helps a little anyway.

sissysa2938978.628287037hi my name is jeannie and i have a son who is 6 and has autism i am writing because i live in louisiana and there is no place near where i live that has any actual knwoledge on how to care for children with autism.i am now teaching my son at home because the school system failed not once but twice.does anyone here know any resources online for homeschooling there autistic child.so far he has acceled and is doing better every day.hi bgbidmom, as you have probable read about my son, I too home school my son we are enrolled in the K12 curriculum , it is run here in Idaho as a virtual acadamy. You might want to check and see if something like this is available in your state. You can check online at K12SpecialNeeds@yahoogroups.com, they also have other helpful info. Hope it helps!

I am new to this forum and wanted to share my story about my three year old son Chase. I am hoping someone else can make since of this confusion and maybe offer insight from their own travels down this same road.

I knew from day one that something just wasn't right. Chase was born on time wieghing 9lbs 3oz. Tan skin, blonde hair, the cutest thing we had ever seen! The doctors said he was "floppy" and said it appeared that since he was a large baby that he was having trouble with his muscles. Not ten min. latter they were asking us to sign papers to allow them to do a lumbar puncture (spinal tap). We agreed and test came back normal. He spent a week in NICU for being hypotonic (low muscle tone) self resolved.

At six months of age the pediatrician sugested an MRI because his head had been measuring large since birth. I asked everyone I knew, "does Chase's head look big to you"? After multiple MRI's they determined no known cause.

At Chase's nine month check up I broke down in the ped. office. I said somethings wrong, the only way I could explain it was he's blank. Family and friends said he was just a calm and content baby. Our ped. took me seriously and said we should document everything since at this age he should be meeting a lot of dev. milestones. At twelve months he still wasn't babbling, sitting up, or attempting to crawl. Chase walked at 16 months just meeting the guideline cut off. It took a couple of months to get Early Intervention set up but we started when he was 24 months. At two years old Chase was non verbal and had no interest in making his needs known. They were so helpful and gave me and Chase the support we needed as well as other resources.

Right before his three year old birthday I knew he would be transitioning out of EI so I set up an app. with a nuerologist this happens to be the same one my step son uses for his siezure disorder, I figured he knew the family history so... On Chase's third birthday after a thirty min. observation he was diagnosed with Autism Spectrum Diorder. Though I knew something was wrong, and this was the diagnosis we needed to get services through the public school system, I just wasn't happy with the short amount of time it took to tell me what was going on with my son. And just a label? I wanted more....

Before school started we took Chase to a ENT after multiple ear infections and being resistant to every antibiotic. Chase had tubes placed and his adenoids removed. We haven't had one ear infection since May when his surgery was done. We are pleased to say the least. My baby couldn't hear no wonder he couldn't talk!

At the same time Chase was starting k-3 through a therapy preschool I took him to a two day observation for their diagnosis. This was to be extensive and well rounded to give us a more clear pic as to what was going on. We took him to the University Of Alabama Civitan International Research Center Sparks Clinic. The best of the best. While we have waited for the results Chase has made extensive progress in his preschool. He is so animated and is now trying to put words together. He is in love with hotwheels , numbers, counting everything, and Thomas the train.

Now at the present I am sitting here reading the results of his testing.

UAB's diagnosis - PDD-NOS as well as severe expressive/receptive communication delay. I am thankful in knowing that they took their time and got to know my son so I am more comfortable with this diagnosis. We will continue with our routine of therapy and preschool. I know Chase will come through this with his personality intact, now we see the beautiful smiles that have broken through the blank stares.

I am looking for info. on genetic testing and hereditary links to autism and other neurological disorders as well because my eight year old step son has a siezure disorder, my five year old has ADHD, Chase has PDD NOS. So far our 16 month old twin girls have met all their dev. milestones early or on time. Just looking for answers...

Hi everyone.. My name is Linda and I am a stay at home mom to Tobi who is 3 1/2.. Tobi was diagnosed with being on the spectrum at the age of 2.. He also has sensory intergration disorder.. We have come along way in the past almost 2 years.. he is now in preschool and we are working with behavior, speech and occupational therapist.. We also have limited his dairy and gluten intake and also pulled him off all foods with fructose in it.. We are slowly seeing some improvements.. Tobi is a remarkable little boy, who is obsessed with trains, airplanes and numbers. he is also very very smart..

Well, I am kind of new to this forum...I found it googling for Autism Education information. I have posted my mini drama in the education section and have been reading through some of this community information. I thought I might share our plight too since everyone else has been kind enough to....

Let's see, I had Mason in 2000. All I had ever wanted in the whole world was to be a mom.....I lived and breathed for this little boy of mine. I worked several jobs while I was pregnant (single mom) so that I could be home with him for a while. I was frugal and determined, so I was able to be home for the better part of his first 2 years. We had a brief period of colic, but other than that, he was a happy little guy. Somewhere around two, everyone started giving me grief about him not talking. I scoffed that anything was wrong as I anticipated his every need and since it was fairly common in my family for kids to speak late, starting with whole sentences, I really didn't think anything was amiss.
I had his hearing tested to appease my mother, and his ped jsut said I needed to read to him more, speach would come in time. I actually don't remember any more how I ended up at the Speech Path, but she said I needed to see this child psych to see about a DD. Well, I of course made the appointment, in fact I was eager for someone to validate my feeling that he was fine, I just needed to back off a bit and let him gain some independance.
THIS was horrible. HORRIBLE. It was a dinky little office, with broken toys and since Mason was cranky, I had him stay with my friend for most of the appointment in the waitng room. The woman (Dr) gave me the CARS for him and though I didn't feel that any of the answers really applied, she would just pick one from the middle for me. When we were done, she announces he was ABSOLUTELY Autistic but gave me no direction or information as our time was up and told me I would have to schedule another $250 appointment to see her before she would tell me anything more. When I pushed, she flipped me "Finding Tony" and hurried me out the door.
I was flabbergasted. I read the book, but felt that it was written so long ago and really didn't have anything to do with my son. I researched for weeks everything I could find about Autism, but I really didn't believe that my son displayed the tell tale behaviors. I was CERTAIN Autism was not the answer.
I saw a different psych and did a vineland.....but since the school system in FL was so backed up for Early Intervention evaluations, I packed us up and moved to Colorado where his paternal gma lived. Colorado Springs . The school system there was ASTOUNDING! His evaluation consisted of about 15 people from nurses to teachers all the way up the admins. Some people interacted with Mason, some questioned me, some spoke with his gma. I told them about his innappropriate socail behaviors and my belief that the way I get down on the floor with with was probably the cause of his overly aggresive behavior with other kids. They sat me down at the end of it all and confirmed that Mason was utistic and they showed me why they could say it was Autism. I couldn't deny it, it finally made sense.
We ended up having to come back to Oregon shortly after that, and Mason started in Early Intervention there. The school was great, the teachers were great, and he was making visable progress. Slow progress, but little improvements none the less.
Them I found out that FL had FULL TIME Autism classses. He was doing so well in Oregon with part time, I felt I needed to go where he could get an all day session to make the best progress possble. Of course I was still living in a rather dark place coming to terms with what having Autism meant for both of us. I mourned the dreams I had for my little boy and tried very hard not to be angry that this was how things were. I also tried to stay postive that if I got enough ABA and therapy that he could still have a very full, functional life. When we got to FL we saw a neuro that wanted to test him for Fragile X. I had a cousin with 2 little boys with FX and didn't think Mason could have it, as he was so very different from them. He didn't speak, wouldn't potty train, etc. But alas about a year after Autism, it was confirmed that he was also FX, and me a carrier of the gene.
This began a whole new depression. Not only did I feel liek the new DX took away my hope and part of my determination that he could still have an independant life, now I know that it came from me, and that my dream of more children could never be a reality.
The FL school system was a travesty so after a year of trying to make that work, I decided to come back to Oregon where the teachers at least knew and implemented ABA.
Here we are, in OR, trying to get somewhere. I love my son, so much it hurts. But his behaviors are still very difficult. Child care is impossible, no one will keep him. I have worked as a bartender for the last 3 years so that I can be home with him by day and support us with a job that I can do while he is asleep. I am exhausted. The limited amount of support or resources hurts my heart. I feel like everything I attempt to do to make a better life for us is like running into a brick wall at 150mph.
I can deal with Mason, I love him for all that he is. Quiet, loving, inquisitive...he just marches to a different drum than most. The problem is beginning to be that my ability to support us is so limited. I feel crippled by his disability. The DX's arent' the problem for us, it is the lack of support. As a single parent of a challenging little guy I just can't believe how hard it is to find a viable answer to eleviate the child care issues.
I have been pretty good at finding the silver lining through this process, but as he gets older, and bigger physically, it gets harder all the time. In the beggining I thought I could be his champion, help to make changes in perceptions and really be a great advocate. The reality is, doing this all alone, I am kind of ddefeated. The battle is more than I imagined, funny how Autisma ndFragile X are actually the easiest things to accept about our situation. Almost laughable really.....
I am a sp.ed. teacher(18 years) and my husband is a high school science teacher. We have three children; Trev 16 with autism, Leah 13 PDD NOS, and Darby ADD and general anxiety. We were unable to get Trev correctly diagnosed until he was six. Since then we are in two genetic studies and have been under the microscope for those trying to find the genetic link. We've been video taped, interviewed, and blood drawn numerous times. I have many questions, but no one can help with answers especially as Trev gets older. In many ways, it was physically exhausting when they were younger, but now I find it more emotionally exhausting as they get older. I have many stories, but I don't want to bore any one. I can say this, when Trev was four he contracted chicken pox and I had him in a tub to help with the itching, Leah was two and fell in just so her nose was underwater. I happened to walk by and saw what was going on and I was so upset because Trev was just sitting in the tub. He didn't even try to help his sister, as if he was completely unaware. That's when I knew for sure there was something very seriously wrong with our son. We have no idea what to do to help Trev as he gets older and the school system is no help either. Any advice?hello i am new to the forum and would like to tell you about my little boy braeden. when braeden was born everything seemed easy to him he was in the highest percentile for everything until he was two. i first noticed that he would line his hotwheels up on his table. then came gummie savers lined up all by color the clear with the clear the purple with the purple and the like. all of sudden he stopped talking just pointed and grunted at what he wanted or needed. so we took him to his doctor and he sent us to a neurologist. he confirmed what i had been saying all along it was autism. so i researched like crazy on the internet, had him in speech therapy for the first year 3 times a week then down to two now. also ot has helped a lot and his preschool thats right next door to our house. i guess you cansay we were lucky having it next door and the fact he loves school. so fast forward a year to now he says words he counts loves his abc's but i am seeing a regression slightly. it started a few months ago when mama was diagnosed with hodgskins lymphoma. she spent a week and a half in the hospital so we spent a lot of time over at mewho and papa's. everytime we came home he screamed at me wheres mama and cried until he went to sleep or i would have to call her so he could talk to her. i never once told him she was sick because ididn't want him to worry or get upsett. i have a good friend who called me every morning and on this day braeden wanted to say hi. i gave him the phone and he went through his normal hi's a hundred times then he said matter of fact jeremy mama sick mama have boo boos. i could hear jeremy alking back to him saying mama is ok mama just need to rest she'll be home soon. that was the first time i broke down in front of him because mama was sick. he is so smart that he figured out since mama was in the hospital that mama was sick. so i want to tell evey parent on here is don't let the symptoms full you, your child is very aware of what is going on in his/her life. they know when things aren't right at the moment. autism has made my life hell but at thesame time it has made my life wonderful. i would never change my son i want him to get better improve and grow to be a full functional adult but at the same time braeden is one smart cool little boy in his own right.

take care and remember no matter what somewho somewhere there is someone like you and me going through the same thing at the same time.

yours truely
tim
Hello, everyone

I am new to this form and would like to say that I am really glad I found this form. I am a stay at home mom with a 3 year old with Autism I think. I have a lot of trouble with my son sometimes. Let me start from the beginning I have a 3 year old son. I know this sounds crazy but when he was born I new something was wrong with him a couple of months after he was born. I could feel it in my heart like something telling me something wasn't right. I cried and was upset most of the time after that. When he turned 6 month old he got really sick. From then on he stayed sick, he had acid refulx. He also had ear infections every time we turned around. We thought he was deaf because he wasn't talking or responding to us at all. We finally started things with him trying to figure out what was wrong. We had his ears tested and he can hear. Ok, know what I said why doesn't he talk? They couldn't tell me. I am the only one that understands him. Right know he goes 2 days a week at preschool and 2 days with a comucation and speech theripist. I'm really scared to send him to school next year. The way he is I now that I will never be able to go to work. So I'm doing legal Transcription courses at home so I can stay at home and have extra money. We live in oklahoma and i am trying to start a group here but it is hard since we live in a small town. I did decide to him tested asap to make sure its Autism. Oh and I have a little girl that is 6 months old. I hope they will be good for each other. I'm trying to get msn messenger so maybe some one that lives in Ardmore, Durant, Madill Oklahoma I can talk too.
sunshine2539026.712337963

To all you newbies with kids on the spectrum, especially the PDD-NOS preschoolers. I haven't been posting much on this forum lately, as I have been recovering from some health problems of my own and recovering emotionally from a rather nasty battle (which we won) with the school district last Spring. A bit of bkgd...I have twins, B/G, 9 yr old with PDD-NOS...very different manifestations, both in 3rd grade and I can say are doing very well both academically and socially. You are well ahead of the curve by getting your kids a diagnosis as early as possible and starting any interventions you can NOW. Early intervention has been the key to both my kids being where they are. Our son was also a chronic sickie and had many ear infections, etc, had RSV and was on O2 at home, had tonsills and adenoids our at 3, didnt' talk til after that. We got him diagnosed at 3 1/2, after we could be sure what wasn't medically driven delays vs. developmental delays. We got him speech therapy first, which was a huge trial, as the social piece was awful for him. Both kids were able to attend a local preschool that was fully integrated and specially gifted for children with disabilities of all kinds. They were the first step in helping our children to succeed. Both kids had speech, OT, and preschool for 3 years, and I had to quit my profession to make sure that they got what they needed, but it is worth every sacrifice. I am now able to work part time, they attend mainstream school, I have had to advocate and sometimes get down and dirty in the trenches to fight for what they need, but I hope that I finally have the school and teachers trained and on our side. I can tell anyone who will listen that you as a parent are the truest and best AND MOST KNOWLEDGEABLE advocate your child will ever have, and never to let anyone tell you otherwise. Seek out professionals who truly have your child and your family's best interests in the forefront of everything they do. If something doesn't seem to fit, CHANGE it. Don' t second guess your gut feelings. Find other parents with similar situations and let yourself vent to them and let them cry on your shoulder, too. These folks are your best source of support and information. To the person in OK, check out the Union School District, they have some innovative training ideas for teachers...I got that from a friend of mine out there.

I won't say that I don't still worry about my kids, they still have a long struggle ahead of them.. they also have a 14 yr old sibling, and puberty for a typical teen is hard enough...I dread when my little guys hit that phase. But, we will deal with whatever needs to be dealt with, you can do nothing else. I don't know if my twins will be able to live independently, but I hope so. I don't know what kind of jobs they will be able to hold, or if they can go to college, but I hope they will. I don't know if they will find a mate and live a life with the love of a spouse and maybe kids, but I hope so. Hope is all we have, but we can make the odds in our favor by making sure our kids have any supports they need as they need them. Information is power.

Hello, my name is Julia. I have 5 year old b/g twins that are in kindergarten. Ryan has PDDNOS. We believe he was developing normally up until a year old. He was even saying words like "train" and "light" at 10 months. Then he quit talking after about a year old. About that time he also received his 1 year vaccines. Then got sick with a really high fever and was very lethargic. We took him too the hospital but they couldn't determine what was wrong. "Virus going around" the usual response. They gave him fluids and sent us home after his fever broke the next morning.

After awhile we noticed he stopped talking. But his sister, Megan, started talking around this time so we associated it with a "twin thing" since one can be more dominate than the other and she is definately more dominate. But then we started noticing other things like spinning objects (wheels on his big truck) over and over again, resistant to change, echolalia. We mentioned it to his pediatrician at age 2 and she said he was just immature. We also had a teacher coming to the house once a month. It's a program called Parents As Teachers. I mentioned my concerns to her and she said she had worked with autistic children and didn't think Ryan had it because he is verbal, social and makes good eye contact. So again I'm thinking I'm just worried for nothing and that he's just stubborn. Letting Megan talk for him, etc.

Not until we got them into daycare at age 4 did we really notice the delay and the ladies there told us about the Early Childhood Center. We had both Megan and Ryan screened. Both met the requirements to attend and started going last October 2005. We were unaware that they could have been going there at age 3. I still can't believe the teacher from P.A.T didn't inform me of that since they do the screenings. All that lost time. :( The teachers at the ECC noticed Ryan's symptoms immediately. We switched pediatricians right after that and the new one referred us to the Regional Center to have Ryan evaluated. There is was determined that Ryan has PDDNOS.

The ECC and teachers are amazing. Ryan started receiving PT, OT and ST. He started making alot of progress. We had his eyes checked and he needed glasses. That helped with some of his behavior once he got used to wearing them. Then we found out that he had fluid in his ears even though he never got ear infections. The fluid was effecting his hearing. Megan also had fluid (she had re-occuring ear infections). They both got tubes in February and that has helped also.

Megan and Ryan are now in kindergarten. Ryan's IEP has him in regular class 50% of the time with a Para and therapy the other 50%. He is in a different class than his sister's. We're having issues now with him paying attention. He looses focus easily and it's hard to bring him back. So we're concerned with ADD and are going to have him checked. He has also become somewhat defiant at home and at school. Everyday is a struggle to get him to brush his teeth and get dressed. Even though his routine is the same every day he is still resistant. His temper tantrums are getting worse. We've been having a behavior therapist come to the house to help him learn self-calming methods and to teach us ways to better communicate with him. He also has anxiety issues. Irrational fears of bugs, dogs, birds.

He doesn't seem to be making as much progess in Kindergarten as he was in ECC. Even though he goes to Kindergarten all day and the ECC was only 3 hours a day, 4 days a week. Or maybe his is making progress but the behavior issues are making it seem like he isn't. Or if he has ADD.

Isn't it funny how the small things make you happy. Like when they alternate feet when taking steps instead of taking one at a time. Every morning I watch him (and his sister) get on the bus and think "YAY!" when he climbs the stairs by alternating his feet.

I hope to find lots of information here and most of all support.

I notied that Bri. very behind for her age she was going on two and she didn"t talk she would point and babbled so i went to her ped.and they told me that the reason she doesn't talk is because we talk for her because she has two older sisters.and i told them that we don't talk for her.IT turned out she needed tubes in her ears .Well even after she got the tubes we had more problems come up. I was working in a day care and i brought my children with me bri. was in the toddler room and she loved it.But the moment she turned three they but her in the threes room she had a very hard time in that room she was still eating with her fingurs and she had a binky at nap.Well the teacher yelled at her for eating with her fingurs and she was so upset it broke my heart they also wanted to take her binky away i said no it is to much to fast. So i heard about this program search to serve and she was evaluated and qualifed she went to lookout mountain school for two hours a day 4 days a week.At first she cryed and so did i but we got used to it.That summer we went to Disneyland and univer.studios.and seaworld.at seaworld we so the daliophs and we got a little bit wet Bri started crying so hard i was shocked she acted like that i told her it ok its only water and i take her some were else.And she also shocked me at univer.studios we went to go see superman her sisters were having fun but she seemed uneasy i was holding her but as soon as it started she was covering her ears crying my mom and i thought it was from the tubes that was making her hearing senitive was i wrong.Then a month later we were at the pool and bri was trying to jump on the other children in the pool not realizing she could hurt them i told her no more two seconds later she tries it again that is when a friend asked me if i every had her checked for autism i said no.But it was always in back of my mind so i called the melmed center and made an appt.so as soon as school started i told her teachers i am getting her checked for autism they said she had no sighs of autism but i thought she did.SO at the appt she asked me lots of questions and it turned out that she did have autism.But here is were the fun begins I told her teachers she does have autism but they said i don;t see it in her at all but she did have a diagnoise.So i did get qulifed for D.D.D.but not for long term care they told me she will have a better change at 6 she wasnt even 5 yet i think it was a month before her b-day. In that time i was so confusd i didnt know what to believe I had everybody tell me that she dosn't have autism she is fine i started to belive them i mean i wasnt getting any help or support from anyone around me so what was i suppose to due than i meet a friend here in my apartments and we started talking she asked me if my child had autism i said yes she noticed it right away and she also has a son with autism.So we started going to support groups and i learned so much.I was so happy that i had people that understood what i was going throwSO than my childs case worker called me and came over for a follow up appt.And he asked me how Bri is doing i told him she is having lots of proplems in school her social skills are very delayed for her age wish is going to be 6 soon.I also told him she has poor eye contact. and also she mostly plays byherself alot her speech is also still very delayed and she has sensory issuses.and she rocks alot he called it masturbation i was very upset he could say that about my child.also he asked me what her diag.was i told him autism just then my child came over to the table and smiled at me he said that children with autism dont do that and he sayed she gives me good eye contact i was thinking to my self for a second she does. so he told me that if i dont get the code299.00 then she doesn't qulifiy for help witch we havent seen any yetSO i had an appt. with the melmed center and i told Bris D.m/ped what was going on and she told me that Bri has all the signs of autism so she is going to make a new report for me with the code299.00 And Bris case worker wanted her to see a child.psybut when i called and told them about melmed center they said they would give her the same diag.I AM SO HAPPY ALL MY HARD WORK PAYED OFF

danielle39039.5812615741

Hello. I am new to this forum also. I am so GRATEFUL I found a message board for Autism.

My Daughter had problems from day one. I had a rough labor with her, almost lost her when I was pregneat with her so many times, I had to quit work... She couldn't hold her own body temp in the hsptl, I couldn't keep her in my room beside me, she had to stay in the incubator in the nursery. I brought her home, and she kept spittin up formula thru her nose, and she did this in the hsptl too. She went for her 2 week check up, the doc. said she has a hole in her mouth, and a double ear infection. I was horrified!!! He said to bring her back in 2 weeks. Well, I called my Son's ped. and I told her what was going on...this lady told me to bring in my baby ASAP...(even though she wasnt accepting new patients at the time) come to find out she was born with a cleft palatte. I was fourtante it wasnt the lip or nose. As she got bigger, her head circurmfrance (sp???) was WAY larger than what it was sopposed to be...her soft spot, went from the middle of her head all the way between her eye brows. As she grew, she didn't do the things a 3 month old did, or a 5 month old did, she was just 'quite' and very solem. She was attached to ME AND ME ALONE. I started working when she was 6 months, and I put her in day care...when she was 10 months old. She NEVER CRAWLED she scooted. The day care lady seen there was something wrong with her, and asked me to call this number to have a lady come and eval. her and see if she's on the right track. She wasn't. They didn't seem really concerned with her, just it was very mild, nothing to worry about and she will 'catch up' is what I was told. I forgot to add she had HUNDREDS of ear infections, cause of her cleft palatte, and she was on every kind of antibotic you could think of. She never turned over on her own until she was 9 months old...THATS because I laid in the floor with her for hrs upon a time, and FINALLY one day I pushed her over, and kept doing it until she finally did it on her own......I had a gut feeling something was wrong, I told her ped. about it, she said I was comparing her with her brother and 2 kids will never be identical, and do the same things at the same time. He was always on time with everything, she seemed to be behind a lot of things.

She didn't start pulling up on things until she was 16 months old....she never walked until it was exactly 2 weeks before her 2nd birthday...I was at day care one day, and I just kept making her stand up, and take a step or two, and finally I got her to walk...noone else could deal with her, hold her, feed her, lay her down for a nap, change her clothes, BUT ME....So I had to either quit my job, or take the lady's advice at the day care and just work there with my kids....and I didn't have to pay for my kids being there....HOW GREAT IS THAT?! I had to take it!

Her cleft palatte was repaired a month before she turned 3.

She had physical therapy done at home. 3 times a week a lady would come in and 'play' with her and her brother (he had to be included in everything also heehe) She had speech therapy at home too, until she started pre school.

Her teacher at pre school, noticed she didn't 'walk exactly right'and she was scared if someone got too close to her 'personal space'...so they called in a meeting with me, and set her up physical therapy at school. Then the IEPS started......I didn't know the exact goals I wanted for my daughter, is just the fact I wanted her to be like all the other kids.

It's heart wrenching to know something is wrong with your child, and there is simply nothing you can really do...but lean on a hope and prayer.

She did great in school...she was smart as a whip...but just didn't have the same abilities as the other children.

I went and got her feet checked, we and the therapist thought she should have corrective shoes, she was flat footed was a little pigeon toed, so my X hubby and I went and got her checked....and the school offered to pay for her a pair of corrective shoes. I was SO GREATFUL....BUT EMBRASSED....The school was wonderful for her. I loved it.....She then started kindergarten, and the teachers loved her, the kids loved her, she was so sweet, and smart, still had troubles with her legs, and feet, writing, so they started the occupational therapy and physical therapy in kindergarten.

She can't do the 3 step process, I WORK WITH HER constantly at home with this

1. Go get me a bottle

2. Grab the wipes too please

3. Throw away the paper on the table

She will get 2 of them, but anything after 2 her little mind is just frazzled!

When she was 8 me and her Dad seperated, and divorced 2 yrs later. (her step dad is the one who told me something more was wrong with her, than her balance cordination and feet she needs to be seen) and this is what brought me to know that she has Aspebergers oh I cant spell hehehe..

DD still holds a grudge to her Father, she cant accept change, she's accepted her step dad, but she cant accept the fact her daddy left all of us (she seen and found the reason why that didnt help the grudge against him) she's still sideways about him, she dont

Her new ped told me that she's still got a lot of trouble with balance cordination...(she runs like a horse running upright, flapping hands also) she wil lpobably never be able to ride a bicycle, or roller skate. Yes I've tried both several times, she's DEATHLY scared!

And she went in for speech therapy aslo.

Now she's in the 5th grade....Last year was omg horrible, a nightmare for her and me, she cannot accept change to something new, even though she's happy and excited to go into a different school, it mentally throws her off....she is so shy at first, and has a mental block it seems....her teacher was so mean to her last year, I almost got kicked out of the school for going off on the teacher, I battled this teacher all year, she was flunking my daughter, giving her detentions one after another and she was not understanding 'why' she was in trouble...when the teacher called my child 'stupid' I cleared the whole hallway, and office...still to this day when I walk in that school, the principle is gone! She wont speak to me, or come out from where she is until I leave. This year, I called my daughters teacher ON THE FIRST DAY of school, adn explained to her how she is, etc...this teacher IS WONDERFUL...my DD is pulling A's and B's.....she loves her school, has a few friends, and participates in class.

I had her checked out by a new ped. this year, she sent us to a team of docs. and come to find out she has Asperburgers very mild fom of autism....I KNOW I just didn't spell that right. She's going back into Physical therapy with the school really soon. THIS yr she's gotten out of the care bears, and Dora, Ive been pushing 'older kid' movies and stuff at her and she's takin a real liking to them, and rather watch big kid stuff than 'baby stuff hehe.....she still fumbles her hands and rocks, and PICKS at her head, and skin....oh it drives me nuts! But she's my little angel...and Im glad I can keep her 'safe' at home for a while longer than any of our other kids....

Sorry my story is so long...Im sure there is more I should have added...my mind is going quicker than my fingers lol

Michelle

Hi Michelle, I couldn't help but think of my son when I read your post - scooting, no crawling, late walker, flat feet, runs awkward, doesn't ride a bike or skate, balance and coordination issues, picks at his head, difficult with change - yep, that's my son. He was diagnosed with developmental delays and only recently had dx of aspergers added. He is 12. Welcome to the board !

I'm so glad I got someone here that can relate to my story!! Now I don't feel 'singled out' Abbie has been diagnosed with developmental delays also.....

I'm so glad I have you women to talk to. We just had a IEP meeting this week as of 12-4-06 and we were not happy at all. First of all his speech theripist said that it was up to us to do these flash cards with him and to teach him how to talk. They said it was too early to get him tested because they didn't want to lable him. Well

they have he is developmental delayed they said he might grow out of that. I said to my mom I now my son and from the time he was born to know he has changed some but not a whole lot. I feel like we got nothing done. They said they were not going to do anything different once they finally test him. What Ever, Hello, there getting money for him! they need to help him. So I simply asked well "Are you going to get him a aid when he starts school"? Well we hate to do that because they rely on the aid!!!!! I said then ok then I know that ya'll are train perfestionals and all but I don't feel safe leaving him here with ya'll I'll just put my daughter in daycare and come be with him. So there you go sorry I was so upset but I'm sick and tired of this crap. We have just started I'm sorry but they want him to do all this stuff but you can't make him do something he doesn't want to do and if you do you have to clean up throw up. I for one don't want to do that I just want him to be happy.
sunshine2539053.6115277778

My little guy Mikey just got diagnosed with PDD three weeks ago.. He likes to run jump, and is obsessed with trains.. He is a very affectionate guy, he gives hugs, kisses, licks my eye lashes & pictures of my blond cousin ally..Occasionally he smells my breasts gives them a pat to make sure they are still there and runs along (I nursed him for a year) For the most part he is not stringing two words together, or giving much eye contact..Therapy has really helped so far with his issues.. I admit he hates his teachers, but I carry on the rest of the day with activities based on what the theripists do.. ( hey I never said I could spell) I dont take everything they say is gospel.. I do let him stim as a reward.. Go with your guts.. Nobody knows your munchkin better.. As for our family I push my son all day, but he wouldn't know it.. I make things fun so that we can enjoy eachother.. My husband is taking this really hard.. He is busy worring about the future, he loses his temper because he can not yet get ahold of his fears and sorrows.. He wants to go by the book.. Hoiw drab can you get.. He doesn't understand this doesn't have to be torture.. I tell you it is not playing theripist that is killing me, seing the progress my 2 1/2 year old has made inspires me.. It's my husband thinking he knows best, glaring at me, ugh he is so condesending and down right nasty at times.. If I wasn't doing right by our son he'd be exactly where he was when we statred.. This is slowly tunring into a rant isn't it..oh well $#"!..I'd like to know where my dh gets off some days.. He sees my son maybe 3 or 4 hours a day he eats dinner and watches scif. ok maybe he will help play for 30 mins.. But it is me who works with him day in and out.. umm except for tuesdays when he goes to my mother in laws. So guys how long is it going to take for him to stop treating me like poo?

My son 5 has been DX'd with several diagnosis since he was 3 . The most recent being PDD-NOS just several weeks ago. He has been in speech for about 2 yrs and OT for about 1 ( 1 session of each per week and he gets 2 days of speech at school- not 1 on 1 in school ). He has come a long way. I was not really able to communicate with him at an early age, but man have things gotten better..wow .. I am soo amazed at the progress from school and the therapies; For the first time since his birth ( he is going to be 5 in dec ) Me and him are actually communicating and enjoying our time together as a family.. I owe alot to my loving wife who at first was in denial, but when she realized it was what it was...she put her head down and has given 150% devotion to my son. He still has problems understaing most things and kinda has a difficult time with social play ( not that he doesnt make the effort ) it is more that he just isnt doing it correctly..but hey he is plays in a soccer team and al lthe kids love him. I am worried about his future only on the being bullied aspesct and perhaps not being able to fit in.. I have no idea what the future holds, but on the flip side he is one big kid...so maybe they wont bully him

...but like i told my wife...just being able to communicate with him is the best xmas present i could have ever received...

My oldest son Corbin was just diagnosed with PDD-NOS on Tuesday. I have known for a number of years that Corbin was a bit different than other children, but his differences are mild enough that others did not believe me or see the same problems when I voiced my concerns. This began changing last year when Corbin began pre-k. He was having a number of problems at school including issues with sensitivity to loud noises, transition problems, social problems, and fine motor problems. He also had a lot of difficulty with wh questions and pronoun usage and past tense verbs. The school finally sent him to the principle's office one day for refusing to participate in music. He would sit in music class with his hands over his ears. I was livid that they would send a 4 year old to the office in the first place for a non serious offense such as this so I started doing research on over sensitive hearing. One of the first websites I stumbled upon was one on Autism and as I looked through that website things started to click. It almost looked like a book about my son. The emotional outbursts, self injurious behavior, anxiety, spinning objects, fine motor problems, language delays, SI issues, social issues. I finally thought that I had some sort of answer as to why my son just never quite fit with the other kids.

Unfortunately my husband just wouldn't hear of it. There was nothing wrong with his son he was a perfectly normal little boy, maybe just a bit immature and spoiled. I was able to convince him to allow Corbin to attend early child hood special education since he had an obvious language delay and was having problems with things like writing and stuff.

Corbin grew a lot in pre k special ed. He made a few friends, and grew by leaps and bounds with his language skills. He attended summer school this summer and was also doing quite well there so we decided to send him on into kindergarten this year.

When kindergarten started things went backwards quite a bit and we lost a lot of ground with Corbin. He was acting out in class constantly making noises, wouldn't play with any of the other children, lining up toys, fixating on only certain toys in the room etc, same problems in music and now in PE. He throws tantrums, strikes out at other students, his teachers, harms himself. It is an ongoing battle. I finally convinced my husband that there was a serious problem and got him to agree to a consult with the pediatrician.

The pediatrician first and foremost asked us if we had ever thought about putting him on ADHD meds. We both refused and said we prefered he be thoroughly tested before pushing meds on him. So he referred us to a developmental pediatrician and also to an Institute that does Autism screening. It was impossible to get into the pediatrician until January so we opted for the Munroe Meyer Institute and they were wonderful. We took Corbin in on Tuesday and had him seen by a psychologist, a genetisist and a speech and language pathologist. They all agreed that my son suffers from PDD-NOS.

Corbin is an extremely intelligent little boy. He was diagnosed because he had significant concerns in the social and behavioral areas. Language while he does have a few problems it is not nearly as severe. His prognosis is very good they say but he will need work on his transition issues, sensory integration problems, social skills, fine motor skills etc. He will give kisses and hugs to mom and dad when he wants to and to his youngest brother when he wants to. He is not much interested in the baby and wasn't interested in our middle child either when he was a baby. He does interact moderately well with his brother. They do pretend play quite often. However he does become very aggressive towards him at times too.

At school corbin is once again spending about half of his day in a special ed classroom. He is still working with the speech therapist there and I believe he will soon be working with the occupational therapist also. I think they are currently looking at using a weighted vest with him.

Our journey is just starting out and I can honestly say I have never been so overwhelmed in my life. I did contanct the department of human services and social security. I am hoping to get some sort of assistance in the home and possibly with his medical bills. I think the help at home and the help at school will help Corbin excell that much faster. I really don't know what else to say I guess. I am glad I found this forum and am hoping to find some tips on how to help my son and how to cope myself.

Hi. I'm Kerry. My 5 year old, Nick, is ASD. He was officially diagnosed in April of this year but he was in Early Intervention since he was 16 months old. Nick hit all of his milestones on time. He walked, talked, crawled, ate well, slept, etc. Then one day he woke up and my happy baby was gone. He didn't sleep, didn't eat, didn't speak. Numerous conversations with pediatricians and I was told "My wife didn't speak until 5 and she graduated from Harvard Medical." or "He's a boy, they develop slower than girls." Nick's come a very long way since he was 18 months old. No self-injurious behaviors. He can speak in sentences although his thought process is disjointed and his language is predominately echolaic. His eye contact is getting better, he plays with other kids, and is getting better daily. The pediatric neurologist told us that he would be high functioning. Our first experience with the public school system was an absolute nightmare. I went in to check on him one day and found him sitting alone in the corner eating his snack. When I questioned the teacher I was told "He's clumsy, he could knock over someone else's milk." Needless to say, that day my husband and I removed him from school. Since he was only 3 it was my choice whether or not to send him to school. After a couple of months of a stand-off, the school system gave in. We sent him back and the results were really no better. Thankfully summer was here. We quickly moved into the next town over because of their school systems reputation. We saw wonderful progress. He's been going downhill a little bit this year though. He did not like the change from A.M. preschool to P.M. Session. We are currently waiting for a meeting after Christmas with our IEP team. Nick can do most things that other kids can do. It's his behavior that sucks. We live on the North Shore in Massachusetts. We're self employed and my husband and I are both home 24/7 with our kids. We have a "normal" 3 year old daughter, Gabrielle. My husband sometimes lives in a state of denial about Nick and his disabilities. I think he believes that Nick is going to just wake up normal one day. Just like he woke up abnormal one day. I feel like I am the bad guy. I'm the one that is constantly pushing for tests and therapists and the like. We've been fortunate along our journey to have people that were kind and helpful. I'm still new to this though and feel like I'm not doing enough to help him. I hope to learn some things in this forum...like maybe where else to go for services...and be able to share some of the things that have worked for us. Nick obsesses over dinosaurs. I choose my battles with him and work on one thing at a time. It's nice to meet all of you. I already don't feel so alone. I have added this link to the new song by Mark Leland. It never fails to make me cry and it explains everything I ever felt in under 3 minutes.

FRINKFEST.COM

Hi, I'm new and was looking for the homepage, but it looks like it is broken down into forums. Anway, I thought I would repost my introduction in what I hope is the correct area.

We adopted our daughter 6 years ago from Romania when she was 5 1/2. We were told she was deaf; however, she is hearing impaired and then we found out 4 years ago she is austistic.

Right now the big issue for us is behavior. She initially hurt herself when she was frustrated, but in the past year or so, she has been agressive toward us mostly, and at times strikes out at others. We had great success with Strattera (for attention) and then in the spring we had good results with adding Resperidal for aggression. However, after 5 months the aggression returned, and she developed an uncontrollable appetite. Withdrawal from the meds was a nightmare. She tends to react opposite to some medicines, so we are currently experimenting.

Our peditrician sent us to a pediatric psychiatrist for med management. We tried Trileptal for 2 days and her body became very jerky and tense physically and she was not sleeping. We just began Abilify, and the first 2 days she was well behaved, but sleeping. We moved it to the evening and so far so good.

She is 11 1/2. Another issue is her safety. She has tried to shave her arm, resulting in a one inch cut. She sorted through many keys (we have 4 children and 4 cars), put the right key into the ignition and turned on the radio (she was going to the store). All of this from someone who is on 1st grade level.

Sorry for the lengthy info. things are very difficult for us right now We live in lock down. She is also going through puberty. This may be part of her problems. She also has melt downs. Hopefully we are on the right track. I cry a lot. It becomes too much to handle. I have a small support group at church. Most people think we're saints (we definitely are not). The responsibility falls mostly on me. My husband just can't handle her. Depression takes hold. Our marriage has suffered. Life is hard.

I look forward to learning and leaning on you. Thanks.

This is my first Autism forum and my first post! I have a 12 yr old autistic son who was diagnosed at 2.5 yrs. It took me awhile.

I have soooo many great stories to share and some totally unsolicited advise. The burden for parents of children with autism can be great. But so can the joys. I am fortunate in my autistic child and I thank God for that every day. My son is high funtioning. He forces me to see things differently and to slow down when my hyper active self wants to keep going 100mph. He also has allowed me to see things through his eyes which has been a wonderful gift. He is my joy(my daughters call him the golden child), and I would not trade him for a so called "normal" child. I do realize there will be challenges. I face new ones every day. But I also get to see little miracles too. I am truely blessed to be given the opportunity to care for one of God's special children. I am a former teacher of students with autism and I loved my work. It was challenging, but very worth it to make a positive inpact on a child's life.

[QUOTE=sunshine25]So I simply asked well "Are you going to get him a aid when he starts school"? Well we hate to do that because they rely on the aid!!!!! I said then ok then I know that ya'll are train perfestionals and all but I don't feel safe leaving him here with ya'll I'll just put my daughter in daycare and come be with him. So there you go sorry I was so upset but I'm sick and tired of this crap. We have just started I'm sorry but they want him to do all this stuff but you can't make him do something he doesn't want to do and if you do you have to clean up throw up. I for one don't want to do that I just want him to be happy.
[/QUOTE]

I just wanted to let you know that our first school department told me the same thing about having an aide. My response was "I'm willing to try it and if it doesn't work out then we'll cross that bridge. However, we want to try." Nick has a one on one aide and she's useless really. His regular classroom teacher and his speech therapist are much better with him. Don't give up and don't give in. Our special kids need us. I tell everyone how blessed I am to have a "Nick" in my life. He wasn't sent here for me to teach, he was sent here to teach me. Of course I worry about his future but we take it one day at a time. He tries so hard to please us so that makes it easier when we're trying to "correct" behaviors. My husband and I are both very strong willed and we want what is best for Nick. My best piece of advice to you is to not trust all of the advice the so called professionals offer you.

Hello, my son is 2 and a half years old and I have been told that he has ASD-PDD-NOS. To be honest I still don't know exactly what each thing means. I'm a little overwhelmed by all this. I knew something was wrong when @ 18 months he stopped talking completely. Everyone kept telling me not to worry that he would come around when he was ready. I'm hoping that now that we know exactly what he has we will be given tips & hints on how to move him forward.[QUOTE=Jorday][QUOTE=Emerald Lady]

Thanks for listening and reading.

[/QUOTE]

[/QUOTE] I don't know where you live, but I am a veteran with an Asperger's Syndrome child that started out similar and is very smart "high functioning autism". The County usually has services through mental health department where you can obtain free services for diagnosis, and help at home. This is something you're going to have learn mostly for yourself by reading all you can about autism disorders. My son reacted the same way when he was young and the sooner you can get him therapy, Applied Behavioral services the better off you'll all be. Some people recommend psychiatrist for meds, personally I don't advocate the use of drugs on children. A lot can be accomplished just by having someone help you on dealing with your child's particular needs. Best of luck.[QUOTE=lama091503]

HI. New mom hear,

He has not been diegnosed yet, but i've none and just have denied it.

Odd things he does:

Repeats words and songs from dvd's all the time.

Can not have a give and take conversation.

Picky about his hands being dirty.

Lines up his crayons and toys.

Great things he does:

Can figure out remote controls befor we do.

Great moter skills.

Very loving, hughs, kisses and always wants to learn.

Is quick to learn anything new with in a few minutes and wont ever forget.

Loves to play and has no problem with eye contact.

As mothers with autism childrent does he fit the profile???

Please help

[/QUOTE] YesYes! My son is a lot like yours and he is very high functioning so just keep you head and do everything yo can to help him get the thing he needs.

Hi Mary and new mum here,

I am a mother of two boys diagnosed as being on the autism spectrum. My eldest 13, has aspergers syndrome and tourettes, My youngest 9, displays much of the characteristics of aspergers but is diagnosed PDD-NOS. They both have sensory integration dysfunction, attention problems, executive functioning disorder, and Auditory and central processing disorders. I homeschool both of my boys while I have my own disability after an accident left me with chronic back pain and migraines. Both by boys are wonderful and are doing great since being homeschooled at home.

Like you it was very hard at first, before we knew all about autism spectrum disorders and what our sons differences were. There is a period of grief you go through in knowing that your child is different, and what the future holds. But after many years of my husband and I educating ourselves and understanding exactly what was going on with our guys unique ways, things have become a lot better. Of course we still have our bad days, but we can predict our children a lot of the time and know how to handle situations better before a situation goes too far. You just have to understand that every child is different with autism and has their own unique way of doing things. As a parent you learn to know what their needs are and what sets your child off and why. A lot of children with autism spectrum disorders have sensory problems. This is where their senses are either heightened or reduced compared to the normal person. Think of it like a contrast dial on a old TV, with our kids they are either turned on too full and bright or not hardly on at all, and there is no inbetween. My eldest doesn't like being touched at all. It creeps his skin. My youngest can't stand the feel of certain material he wears, tags on his shirts, seams in his socks, touching anything sticky with his hands, he can't stand certain lighting and cannot concentrate on things when there is certain background noises (like peoples chatter, dishwasher, dogs barking etc) which he over reacts to so he needs to where headphones to concentrate.

There is so much to learn about your own individual child, as well as those amazing things they possess. Our eldest has a photographic type memory, spelling words with 20 letters or more after only seeing them once. He can then proceed to spell it forwards and backwards. He can do large math calculations in his head. He has fantastic long term memory, remembering in detail as far back as 3. (yet his short term he struggles with). He has fantastic visual spacial abilities. And he has a visual learning style, being quite right brained. Yet he finds crossing a road hard and forgets to come out of the shower.

So even though we have to learn about the difficulties our kids face we also have to find our childrens strengths and make them aware of them. Many of the great important people in history who made the world with inventions etc were usually found to have some autism.(such as Albert Einstein) So don't look at it in a bad light, think of it as a unique personality type.

So just keep this in mind that things will get better in time, even though you find it hard now. The best thing to do is get a correct diagnosis by someone who is very specialised in autism spectrum disorders, so you can find out the exact things your dealing with, and you can try to help them. the earlier you help the better.

Don't give up Vette212

My first thought when I heard that my son was leaning towards autism was
OH NOOOO.

Then I paid more attention to what the criterion are, and thought "That's me. That's everyone I studied with in graduate school. That's most of the engineers I now work with." So now I figure that my sons (both are on the spectrum) ought to be able to do as well as I did.

My story starts out like most all of yours. Met my daughter's father, was pregnate and we had beautiful girl we named Trinity. She was my first and OMG them big ice blue eyes. She was perfact from day one and still is to me. We always thought she was hyperactive, ok no big deal. She never regressed, she hit all of her milestones. But when she started 4yr kindergarden was when we got super concerned. I knew she would need extra attention but thought it was adhd or something not pdd-nos. She was speaking spanish well at age 2 ( i was that age when i learned it), she would tell you her colors, shapes and stuff too. No she didnt talk well but i understood her and that was what mattered. She was always very loving, never had issues with strangers except at 9 months or so but thats normal.

So anyway she is in an early learners class in Wis, we live in a small town of maybe 1200 ppl. The school here is awesome, they are so helpful her ped is so great too always answering my questions and trying new things. The problem with Trinity is she does NOT sleep at nite. She does not take naps. Well we tried Clonidine and Guanfacine but her father and I didnt like the way it made her into a zombie all day. Sure she would sleep about 4 hrs a nite instead of none but she was always just a blob and that was not good. I would rather have her running around like a crazed person then just sitting there doing nothing. That is our major issue right now is getting her to sleep all nite. It does not matter what time of nite she goes to bed, she is up at 2am EVERY nite. Swaddling does not work to calm her either when she gets upset. But im wondering if anyone has any ideas that they have tried or if they are in the situation that i am in? I would like to just avoid meds if at all possible but we are trying Melitonin right now, it has only been a few days and as of yet she is still up at 2am every nite. She is only 4yrs old is only 36pds too so i dont want to even think about other sleeping meds. Any ideas here?

Waiting for sleep to come

Justina

I don't know if you explored any of the other sites here but, there are a lot of our kids with these sleep issues. There motor keeps running after the engine is turned off. Over the counter natural melatonin works. I would suggest that you try 1, 3mcg an hour before bedtime, considering the age. You don't have to be concerned about side effects here. My son took 3mg when he entered the 5th grade and they said he could take up to 6 but, 3 worked. So, try 1 for a couple days and add another if you don't see improvement.

Yes like Mary said, I have heard that melotonin is good also. And I understand it is natural and you can get it from a health food shop. But you only need a little bit.

Vette212

We are actually doing the Melitonin right now and it seems to be working ok. She still gets up at 2am but it has only been a few nights. I will have to keep you guys posted on how it works. My one question would be if she does wake at 2am and we cant get her to go back to sleep can we give her more if she has had 3 mil grams already?

Thank you,
Justina

many people have tried melatonin with good results.. never used it but hear it does the trick:) Good luck,

Shelley

I had to change my id because I forgot what it was. Guess I should really write it down. The Melitonin is not really working except for 50% of the time. She was up last nite at about midnite, getting ready to eat from the tub of margerine . I have no clue why she does this and it is a nightly thing with her. I have to basically duct tape everything she could possiblely get into at nite and then sleep on the couch till her father gets home at 2am. Then he stays up till 6am when i would get up to take over the watch. This behavior just drives me NUTS. It does not matter what we try she is always into the things she KNOWS she is not suppose to get into at nite. I have to say im just so tired of it every nite for the last 2 yrs she has done this, im beginning to wonder if it is always goin to be this way.

Have you tried cutting the bedroom door in half horizonally, leaving only the bottom portion of the door closed at night? If you do this remember to turn the door handle around so the lock is on the outside of the door. We used this idea so my 3 year old couldn't roam the house in the middle of the night.

Only one tip for now...read Temple Grandin's books. Temple is in her late 50's now, and was diagnosed with autism as a child. Her mom went to work on helping Temple, and she is a Ph.D proffessor in Texas, and has designed most of the cattle shutes used in the united states, due to her understanding of animal behavior. She has many books out under her name, and online you can type in "Temple Grandin's teaching tips" and you should pull up a paper she wrote labeled such.

Her knowledge of autism from a personal viewpoint, is the reason i think i have a very mature, responsible, verbal, loving, kind, and funny daughter, that is the light of my life. Someday i hope to thank miss Temple in person!

tigerlili

This post is to hotred.

I woke up at three in the morning when my daughter was three, to find her in the kitchen holding a large knife. She didnt sleep through any nights back then, so i decided to break the law and turn the doorknob to where i could lock it from the outside. She already didnt have a dresser or tall furniture, because she was a climber, so i took out all electrics, except for a monitor, so i could hear her in the room. I marked her window for the fire department, and told all my neighbors that i trusted, so everyone would know she was locked in. We had a fire in our kitchen the year before and i walked around the corner to see my daughter just staring at the fire...a friend of mine had a son who kept going out at five in the morning to get in the road...safety just became more important than people who make laws that blanket everyone...some people are not safe walking around the house at night. The melatonin....what dose and what age and weight is your child? I have extensive experience with it, and my daughter did eventually start sleeping through the night, once i figured it all out. i'd be glad to try and help you figure it out.

tigerlili

Her ped told me to try 3mgs an hour before bed. She was born Aug 12,02 and is about 34 pds. If she does not take any meds she is up all nite, and even when she does take the 3mgs she i still up at 2am every nite. I think we are just goin to keep trying this one day at a time till we get to Durand, Mi then we will try to take her to another doc that specializes in special needs kids. Her ped does try to give good advise but i dont think she really has a darn clue as to what she is doing.

Sorry, we know what you're going through. My husband and I were both in the Military and had to go to work and that meant dropping my poor little guy off at a day care early in the AM. We would get so tired that we would put a Sesame Street tape on where Earnie has trouble winding down to go to sleep and is bugging Bert and when he finally goes to sleep he dreams about Balloons falling in all the colors and believe it or not after that tape ended it was like a prompt and he would go to sleep. We used to try to wear him out when we got home for work my husband would take him and and play ball while I was getting dinner and after dinner we'd go out again for a walk. Some warm milk with the melatonin might help. Also, make sure you have a strict night time regime. This is the time we do this, kind of thing. Almost forgot, son has sensory issues as well, we massaged him everynight, arms, hands, fingers, legs and toes. By the time we'd get to the toes he'd be ready. Always had a night light for him and when we bought our own home we got a very loving labrador that would lick him all over every night before he went to bed. Best wishes. MB

That is waaaay too much!!OMG! no wonder she isnt sleeping...

most pills come in three mg. try to find one that is in one mg. start with 1/2 of the tablet, .50 mg. If in three days, with a good bedtime schedule, this is not working, let me know....also, give it within 30 minutes of the time you want her to go to sleep, and realize that she may wake up early. i would give mine hers during her bath, when she was almost done, so that by the time we were ready for bed, it was working. If 50 doesnt work over three days time, then increase to 1mg for three days. Once she is into a regular routine, within a week, then start decreasing the doseage over days until you are using 1/4 of the pill, 25mg. Then stop until the next interruption in sleep cycles. ( Full moons, and equinoxes, especially the winter one, are notorious sleep disturbances for us.) You shouldnt have to use 1 mg anymore, unless it has been a very long time.

Melatonin is the brain chemical we already have that makes us sleep. You are trying to help correct the bodies natural production and reaction to melatonin, that is why you want to stop unless there is a problem. Behavioral strategies for the bedtime will help the melatonin be able to work. Good luck, honey, and know, someday, you too will sleep!:0)

tigerlili

First of all, I should introduce myself as I am new to this group and this is my first post. This is going to be a long read...so be forewarned. My name is Valerie and I am the mother of an autistic son, Luke. When Luke was very young I always felt blessed because my baby was so well behaved...he almost never cried, he played quietly, and was never any problem at all. The terrible two's came and I, once again, felt blessed because there really wasn't anything terrible about them. It was at this time, though, that I began to notice differences in Luke. He was not progressing as he should.

There had to have been some sort of denial prior to me noticing these differences...because I know that he was banging his head and rocking violently from at least 11 months or so. Anyway, Luke’s grandfather approached me one day very cautiously...I think he knew how defensive parents can be about their children. It took him a while, but eventually he got to the point...'we think that something is wrong with Luke.' He explained that he had been researching some of Luke's symptoms and that he believed Luke may be autistic. So, at this time I was both relieved and terrified. I wasn't the only one who saw it...but I didn't even know what autism was at that point...it sounded awful.

We contacted the school system who brought a team directly to the house...they were there three days in a row doing many different tests and exercises with Luke. I remember wanting to just run in and snatch him away during one particular exercise...they had sprayed shaving cream on a tray and then placed Luke's hands in it...oh my goodness....he freaked.

Well, after the three days a woman came to visit me at work. We sat down and she was very careful in explaining the results...in much the same way as grandpa explained that he thought something was wrong. By the time all was said by her I was very angry. Basically this is what I took from the conversation: 1. Luke will probably never speak coherently. 2. Luke will never go to a public school. 3. Luke will never function normally as an adult and will always require supervision.

I remember this conversation as if it happened yesterday. Anger flooded me...who was she to tell me what my son could or could not do? I stood up and said, "The hell he won’t!!" I'm sure she dismissed my response as denial...and at that point I'm sure it probably was denial.

So, I spent the next several weeks learning all I could about autism. I made the mistake of watching all of the different movies with an autistic character...you know the ones - rain man, house of cards, etc. This only made it worse. Eventually I realized that feeling sorry for myself was not going to help at all. It was then that the journey began.

With a multitude of sensory disorders, this is the area that I felt needed to be addressed first. Little bits at a time Luke overcame one sensory disorder at a time. I'd like to say it was me...but it was Luke. Luke did all of the hard work. Soon eye contact was addressed...I can't tell you how much it meant for me for my son to look into my eyes. This has all been so long ago I have problems remembering the order of his triumphs, I wish I would have kept a journal. Speech came eventually. Most of his speech was 'parroting.' He would store away bits and pieces of conversations and then use them in situations that he felt were appropriate. At that time I was just happy that he was speaking at all...it was a form of communication at least.

Well, after 2 years of non-stop work Luke was ready for kindergarten....omg...kindergarten! I wanted to go find that lady and just scream at her....if I would have listened to her and just accepted what she said who knows what state Luke would have been in at that time. My son was going to kindergarten….now the possibilities seemed endless.

Actually, this is when the real work began. It seemed that Luke had adapted in some ways that really tricked many of us. Yes, he could speak…yes he had started to make connections, yes he could make it through a day without strict routines. Or so I thought. This is when I learned that his speaking was purely circumstantial…only triggered by a familiar situation or word. For example, if I asked Luke if he wanted something to eat he would say, ‘I’m starving.’ It was always the same reply…whether or not he had just eaten. The reply of ‘I’m starving’ was something he’d heard someone say in response to that question so it was a ready made reply. Now came the time to work on asking for what he wanted instead of a learned response. I had to learn to be specific with him. I would still ask the same vague question, “Are you hungry?” Then when he would say, “I’m starving” I would ask him what he wanted to eat. At first there was no reply. I began giving him choices. I would set an apple, orange, and banana on the counter and then ask which one he wanted. He would point to one…maybe an apple. He didn’t say apple…only pointed. Sometimes he just walked away, at which point I would say, “Oh, you are not hungry.” It took about a month of this, but eventually he was able to respond to my question based on his needs instead of with a learned response…Another triumph.

Skip forward to first grade; Time for reading. Wow, this was a tough one…but one of the most significant triumphs this little boy has ever made. The alphabet was tedious, but came in time. Putting the letters together to form a word seemed just short of impossible. In the back of my mind I was convinced that it would never happen….but I had to keep trying…I just had to. We had to keep each session short, say 5 minutes or so at first, otherwise he would become aggravated and the whole process became worthless. Flash cards with age appropriate words were used. We started with only three cards. We would sit and sound each letter out together and eventually say the word. Once we got through all three then I would show him the first word. There was NOTHING…he had no recognition at all. It was as if it just went in one ear and slipped out of the other. I didn’t force the issue when he didn’t recognize the word…we just started over the next day. Eventually he started retaining small words. I’m certain that it wasn’t because he actually read the words, but rather he memorized them. This was so tedious…I mean it wasn’t just reading a word that was involved here…it was putting letters together to form a word, then comprehending the word, then it was using the word in a sentence and using it in context. It was just so much for even me to comprehend. In time Luke had a good sized word base to work with and we began attempting putting these words together in written sentences. In a written sentence the words that he was already familiar with once again became Greek.

This process was incredibly slow. I tried everything I could think of. I would read the sentence to him first, and then we would try reading it together. I would have him sound out each word individually and then try to put them together in a sentence. Nothing worked; nothing at all. I wouldn’t give up, though. I don’t remember how long we had been trying to read when the ‘eureka’ moment came; it had to have been at least a year. I was on yahoo instant messenger talking with my sister in Washington State. Luke came in and stood beside me…after a moment he began reading the words out loud as I typed them…ALL of the words!! This didn’t sink in at first…I just kept chatting with my sister. Then, it hit me….Luke was READING!!! I looked at him and said, “Luke, what are you doing?” He says in a matter-of-fact voice, “I’m reading, mom.” Kind of like…”Duh, mom…what does it look like I’m doing?” Well, I quickly dismissed myself from the conversation and gave Luke a big fat hug…I love you, I love you so much!! I ran upstairs and got the book that we had been working on and asked him to come sit with me. I opened the book and asked him to read it to me. Once again; there was nothing. Okay, I’m confused now. I mean; what the hell? After all; these were simple words in this book…he was reading much more advanced words on the yahoo messenger….words that we had not even practiced! I knew that sometimes a situation will spark something to come out…but I just didn’t get this one. I mean, he obviously had to have been retaining everything we had worked on, but just couldn’t get it out, right? Then I had another ‘Eureka’ moment. I ran into the den and opened up a word document. I asked Luke to come and stand behind me while I opened up the book and began to type from it. Sure enough, as I typed from the book he began to read it out loud! YAY….my son could read!

Taking this giant step to the next level was not easy…but the knowledge that he was actually retaining everything was enough to keep me going. I knew that he couldn’t live his whole life only reading as someone typed the words out for him…I also knew that he had problems with a written page simply because there was so much on that page at one time to deal with. What worked for Luke was simply two sheets of paper placed over the page in a way that only exposed one word at a time. Soon we graduated to two words at a time, then three, then four…you get the idea. Introducing him to the written page gradually instead of all at once was the key. I wonder how long he knew how to read prior to that…probably for a long time.

So, now Luke could read. It soon became apparent that just because he could read did not necessarily mean that he comprehended what he read. A review of even a short paragraph usually yielded absolutely no comprehension at all. The process of reading comprehension has been ongoing for Luke…I cannot say that there have been any ‘Eureka’ moments here. I can say that he is reading and able to write a paragraph in his own words describing what he has just read. This process has taken up probably the last 5 years.

I want to point out that I have never once hinted to Luke that he is different. I have given him no special treatment because I feel sorry for him. I have made him work through every trial, and as many of you know there are literally hundreds of obstacles for the autistic child.

I am filled with pride at the progress my son has made. He has had to work harder than any child I know to get to where he is. He is 10 years old now and is in the 5^th grade. His progress has been phenomenal in my opinion. Honestly, if you were to meet him today you would never guess that anything was ever wrong with him.

A few days ago I was tucking Luke in to bed when he said something that blew me away. “Mom, something is seriously wrong with me.” I asked him what was bothering him, to which he replied, “I can’t stop my rocking at night time. It keeps waking me up.” Up until this point I had always thought that Luke was awake when he rocked. He had always rocked despite all the progress we had made. When Luke was 5 I remember asking why he rocked, his reply was simple: “Because I like it.” He even asked me if he could show me how to rock because I might like it too! Picture mother and son in the middle of the living room with heads cradled in arms rocking back and forth…it must have been a sight! I certainly did not encourage him to rock, but I did try to understand it. I suspect it was a release for him, a way to get out all of the stresses of the day. I would allow him to rock for only a certain amount of time during the day; he had to find different ways to cope. At about age 7 Luke stopped rocking during the day. I did not really notice, actually. Rather, I looked back and realized that he hadn’t done it for some time. He did continue do rock himself to sleep at night, though. I would let him do this for a short while and then walk in quietly and settle him down into sleeping position. Over the last few years I have not treated the rocking in bed as much of an issue…after a while he actually stopped rocking himself to sleep. The problem that I had failed to notice was that during sleep he would get into rocking position and rock so violently that he would wake himself up. I feel terrible right now because I failed to see this. Luke has always had a separate bedroom and I guess I just sleep like a rock.

Luke continued explaining his concerns. He feels embarrassed about his rocking now because he knows that none of his friends do it. He has had sleepovers and he will usually end up waking someone up with his rocking. He feels a need to make it stop now…I think this is HUGE! For an autistic child to recognize that a certain behavior is not appropriate all by himself is phenomenal in my eyes. So, for the last few nights we have tried to come up with ways to correct this annoying habit. He genuinely wants to stop rocking. So far we have had no luck, but it’s only been 3 days of a joint effort to stop a habit that has been going on since birth. Today I read about the benefits of Melatonin with autistic children – we will try this tonight.

If you made it this far into my post...then thanks for reading

What a remarkable mom you are ...I understand all the hard work you put into him and not giving up. Our doctor told us Sarah has autism and may never talk or have emotional connections to people. I was devasted. She was such an easy baby too, an angel:) It has been a long journey but she is very verbal, very loving to everyone..hugs, kisses and I love you's daily. I would love to send her a report on Sarah..she is mainstreamed in kindergarten with and years ahead of peers on academics. Congratulations on your son it is a true tale of what a mom's love and determination can do:)

Blessings,

Shelley

Thanks Shelley

Well, we tried the melatonin and it worked...my son was so excited about it that he came and told me first thing in the morning. He did not wake himself up rocking even one time through the night. LOL...I asked him if he rocked at all last night...and he said, "I don't know mom...I was too busy sleeping." I sure hope this stands the test of time for his sake.

Thank you for posting your experiences. They really give me hope.

Robin

Thanks so much for your story it really give me hope for my son....If you ever get a chance please email me..maybe we can discuss...I am dying to help my son with something. My email address is cheermamnpb@aol.com

I would love to hear more about your journey with your son.

diana

Diana,

I tried to email but it was returned. I'd be glad to share thoughts with you. I found it best to address one issue at a time...it is much too overwhelming to do too much more than that. Please keep in mind that what works for one may not work for another. It is much like a crap shoot...just keep trying different things and hopefully one works. If you read Luke's story it may look like the progression was fast, it wasn't...and the work really never ends. It will change your life, though. I am the person that I am today because of my experiences with my precious little boy.

Valerie (robinvr68@yahoo.com)

Thanks for that....my email addresss is cheermamanpb.aol.com

I forgot the A in MAMA.....

AUTISM

Any body who believe there is treatment for autism its wrong….any therapists or doctors who claim this in my view they talking “bull sh*t”.the severity is different in patients that’s what it is. Its irreversible damage to the brain cells and the circuitry . 1 out of 98 new borns in new York and new jersey affected with this serious disorder, the answer is simple , environmental pollution and preservatives in food also the government don’t want you to understand everything, the ELF(extreme low frequency) they using to communicate with the submarine and the radar signals from airport during the time of pregnency is harmful. I had a patient who’s parents immigrated from Africa, in Africa autism is very rare, and in my research first of all they lived in new jersey , the food , water, child immunization and environmental conditions only suspicious.

Dr…………

Naval hospital, Bethesda, MD.

I have a question, I may not be in the right category. I have a five year old son just diagnosed with mild PDD-NOS and a 3 year old daughter no autism symptoms. If I were to have a third child what are the chances of having another child that has autism? Thank you.

Sam's mom

ok i dont have a kid with autism but i have been wacthing this little boy since he was a baby and he does have it and i have to right a paper for my sinor english class so im doing it on autism but i need to have pros and cons and i need good pages to go to to get information to do this paper so if any one can help PLEASE email me and let me know where to go. Thanks

Pros and Cons of ....?? SPARKS NEVADA TO WASHINGTON D.C. The Long Walk for “Autism Insurance Reform.”
STEP-BY-STEP… June 9th 2007

CAN YOU HELP ME ESCAPE AUTISM?

MY SON JOSHUA AGE 5

MY WALK,
FOR MY SON AND ALL THE CHILDREN LIKE HIM.

Stride4autism.com

NOTHING LIKE THIS HAS HAPPENED BEFORE NOT LIKE THIS!!!

I am a father of 6 children one of which has Autism and I plan to do whatever I can to help him and others like him!!

On June 9th 2007 I am beginning my walk alone from Sparks, Nevada to Washington DC APPROXIMETLY 2,800 MILES to raise awareness of Autism and point out the injustices being perpetuated on our defenseless disabled children. I want new National legislation written that will require insurance companies to cover care and treatment of Autistic children up to the age of 18. I have had a customized three-wheeled push jogger with carrier donated by www.bergdesign.net to carry all my materials for the trip (valued at over $500.00), Foot Solutions of Reno Nevada is donating my footwear for the trip (a value of $400.00.) My sons therapists have offered help at Sierra Speech and Language. Fast Signs has offered to help with posters, How wonderful I thank them all!!
Please won't you donate? These children deserve our empathy, our love, and most of all they deserve their chance to reach for the brass ring. Please take time to donate to this walk and the cause.
THE CDC HAS JUST ANNOUNCED THAT 1 IN 150 CHILDREN HAS AUTISM!! ASTONISHING!!
AND MOST INSURANCE COMPANIES WILL NOT COVER ANY MEDICAL CARE FOR THEM!!!

The challenges the parents of an AUTISTIC child face is a daily struggle. Not to mention the cost of Therapy after a diagnosis is given. There is very little Therapy available in Nevada for the Autistic child. Of what is available the Medical Insurance Companies will not cover it, any of it. Once a diagnosis is given to your child the insurance companies send a letter to their policy holders telling them to “read their policy exclusions” which excludes Autism, Down Syndrome, and Mental Retardation from receiving any type of treatment or therapy. I hope to change that!! My wife and I are hoping that aside from the insurance changes, we want to get a charter school specifically for children with autism here to provide the therapies and education needed in the Reno/Sparks area. And eventually to open schools throughout the country. So that our children may receive the proper education promised them. Plus with all the donations and sponsorships we will be setting up a scholarship fund for those children with autism whose families have no means to pay for any type of therapy. It will be called “Joshua’s fund for autistic children.”

Once we found out Joshua was autistic I quit my job while my wife works to support a family of 6 (2 of our children have moved out already) and I stay at home with him and his brother
Jacob (2 yrs old) to ensure they are well taken care of, so my dilemma is we will need to pay for a professional to come in and take care of my children while I am gone, so the beginning of the donations will be used to pay for that caregiver. Please help me do this in anyway you can even if it is a prayer, because prayer is very powerful!

All donations received and the use of how those donations are being used will be posted on our website, www.stride4autism.com (officially opening first week of April)

I have found a filmmaker and a production company that say they are onboard and will do a documentary of the walk. But as I stated above I am still trying to raise money for an Autism care professional to come into my home for the 4 months this walk will take me to complete. I will leave on June 9th and hope to reach my destination in October. My wife will be working and I don't really want someone that does not understand Autism to care for my 2 sons. Joshua has been on about 8 different medications in the last year trying to control his anxiety. (No medications worked), well I shouldn't say that, there was one medication that worked well but the side effects are so dangerous even deadly, and it may have given him a permanent twitch in his eye. He still twitches now, and he has been off the medication for 2 months. It breaks my heart to see him struggle the way he does. We do however have him on a wonderful vitamin regimen now and have noticed great improvements! I am very grateful that my Autistic son can talk he is at about a 2 ½ year old level but is coming along and he does go to a Developmental kindergarten, he lacks socially appropriate interaction , but there so many children much worse off than my son. That's why this walk is not just for my son, not just for Autism, but for the millions of children with disabilities that are not getting the care that they so desperately need.

I found out that the state of Wisconsin has a very active Autistic insurance reform and requires that the Katie Beckett (Medicaid program for children with autism) must pay for ABA (Applied Behavior Analysis) therapy for autistic children. There are other methods of behavior therapies also (AIT auditory intervention therapy, Floor time, TEEACH, and Tomatis all of which have done well for these children) It should be our choice of what therapy we want for our children. ABA has been proven time and time again to help more autistic children cope and relate better than any medications, not that these do not help because they can but should be monitored closely. It is safer with good results for many to try and do a GF/CF diet and natural vitamins and probiotics to help heal these children from the inside out. ABA should be required to be paid for by insurance companies or Medicaid nation wide (maybe they could share the cost). ABA therapy costs approx $25,000 to $75,000 per yr for each child (depending on the area you live). So you see why the insurance companies do not want to pay, but typically the ABA therapy is only for 2 years and early intervention is the key!!

Our story began over five years ago when Joshua was born. My wife had a feeling right away that something was wrong. He did not progress "normally" he would not talk he screamed and cried all day long. By the time he was 3 he still was not talking and had been diagnosed as ADHD and developmentally delayed. We began Speech and Occupational therapy for him that our insurance paid for 2 times per week for 7 weeks. In January of 2006 he was re-diagnosed formally by a professional as Autistic. In March when the insurance company found out the “new diagnosis” they sent us a letter saying the would no longer cover Speech or Occupational therapies for him or anything else to do with his autism, and sent us a bill for all the speech and occupational therapy he had received since Jan of 2006. The bill was over $10,000 Thank GOD we were able to get Katie Beckett Medicaid for him. The letter they sent me will be available to read on our website as soon as it is up and running which will be within the first week of April 2007. This startled me in to action, and what I found out is that 80-90% of insurance companies do not cover things like, Autism, Down Syndrome, and Mental Retardation. I think it is deplorable that an insurance company will pay to send someone to rehab that is CHOOSING to abuse drugs, but will not pay for speech therapy for my autistic child that did not CHOOSE to be this way. So in short this is some of the fire that is driving me to do what I am doing (walking to DC to start a reform of insurance companies, starting my own non-profit organization Stride4Autism for autistic children, setting up a scholarship funds through the organization and eventually opening a charter school.)

My wife and I are in the middle of our process of getting our non-profit status off the ground first through Nevada then our Federal application can be submitted after our first step with Nevada is finished, your Donation of any kind will be tax deductible as of April 2007.

Mayor Bob Cashell of Reno NV. And Mayor Geno Martini of Sparks NV. will both separately be presenting us with proclamations for: “NevadaStride4Autism week.”

Each Year during June 9th to the 16th “NevadaStride4Autism week.” we will have a marathon walk and many functions to raise awareness and raise money to provide our scholarships. Also throughout the year we will be holding many fundraisers to keep our scholarships available.

At the time I am in need of: HELP

A caregiver for my 2 boys during my walk for 3 to 4 days a week paid position of course.
Any help with fundraisers.
Any ideas for fundraisers!!!
Places to hold fundraisers.
Workers to help with the fundraising.
Persons to organize events

Donations for silent auctions.
Getting the word out through television and radio commercials and newspaper.
T-shirts to sell.
Flyers.
Posters.
Camping gear for my trip.
Clothing for my trip.
Gift cards for food and water during my walk.
We can do carwashes at our church and would like to have a huge garage sale in April at my church also.
Someone to donate and help setup for a wine and cheese festival with the silent action (perfect place for wine vendors to promote their wine.)
Possibly a concert.??
A bowling night for stride4autism.?
And of course monetary donation as that is the key to promote this and provide what we need to set up functions and most of all for our children’s scholarships.

We need help we have never raised money and really do not know where to begin so please HELP!!!
I am scheduled for an interview the first week of April 2007 on DISSABILITY NEWS RADIO out of NY but will broadcast NATIONALLY.

WITHOUT YOUR HELP THIS PROJECT WILL NOT SUCCEED SO PLEASE IN ANY WAY HELP THIS CAUSE, WE CAN CHANGE THINGS FOR OUR CHILDREN OF CURRENT AND THOSE TO COME!! IF WE DO NOT STAND UP FOR THESE CHILDREN WHO WILL?

THANK YOU FOR YOUR TIME AND PATIENCE TO READ MY STORY,

GARY KUHRE
775-626-6895
stride4autism@yahoo.com PLEASE EMAIL ME WITH ALL YOUR COMMENTS AND QUESTIONS.
www,stride4autism.com website will be up by the first week of April.

Please see the attachment of our RENO GAZETTE JOURNAL INTERVIEW BELOW

RGJ article:

Disconnected
ZAMNA AVILA
RENO GAZETTE-JOURNAL
Posted: 2/20/2007

Shannon Springer talks with her daughter Joy, 7, who is autistic. Springer, who is certified in different treatment methods, was inspired to start up a lending library.
Joy Springer, 7, who has autism, plays with a stuffed animal while her mother Shannon tends to her sister Avery, 5, in Joy’s therapy room in their Sparks home.
Seven years ago today, Sparks resident Shannon Springer gave birth to a beautiful child with red hair and bright blue eyes, who she named Joy.
As time went on and her daughter neared her second birthday Shannon Springer became concerned about her child's inability to speak and behavior that seemed odd.
"She was addicted to a particular cartoon, 'Rolly Polly Olly,' and it was like she was looking right through you," said Springer, 32. "She was my first daughter, and I didn't know what to expect."
Eventually, Springer learned from a neurologist that Joy had severe autism.
"Once I found out I tried to learn as much as possible so I can help my child," said Springer, who became certified in different methodologies and was inspired to start up a lending library of information on autism.
Autism is a series of developmental disabilities, known as autism spectrum disorders, including Asperger's disorder, pervasive developmental disorder -- not otherwise specified, autistic disorder, childhood disintegrative disorder and Rett's disorder. These disabilities cause substantial impairments in social interactions, communication and behaviors.
A recent study by the Centers of Disease Control and prevention published Feb. 8, found that one in 150 8-year-old children in several areas of the country were in the spectrum and that those disorders occur four times more readily in boys than in girls.
For a child to be labeled autistic he or she must display three characteristics, said Dr. Erika Ryst, a child and adolescent psychiatrist at the University of Nevada, Reno:
Social interaction impairments
Communication impairments
Restrictive, repetitive, stereotypical interests of behavior or pattern of activities
"The social (component) is the most important," Ryst said. "Kids with autism have a hard time with that because there is a part of their brain that controls their social interaction that is damaged."
While researchers have learned much about the symptoms and treatments for autism spectrum disorders, the causes are still unclear. Some researchers believe there are genetic factors involved, and some believe there also are environmental factors. Some parents maintain that mercury from vaccines also plays a role in the development of autism spectrum disorders.
"We think there is a genetic link, but we are not at the level where (autism spectrum disorders are) completely understood. There are a lot of theories and ideas."
Physical ailments
Toni Richard, who helped create the Reno Autism Information Network, a support group for parents of children on the autism spectrum, said there also are physical ailments associated with the disorders.
"Autism is not just a neurological problem, it is also biological," said Richard, whose son Tyler, 6, is autistic.
"Many children have weak immune systems, gastrointestinal problems, digestive problems and allergies. Most of our kids don't detoxify; a lot of them don't even sweat and many have hypersensitivities. So, how you cook or clean your house is totally different."
Different degrees
of autism
However, those physical ailments do not seem to have affected 7-year-old Sparks resident Gunnar Altenburg.
"He doesn't have any allergies that we have discovered," said his father, Rich Altenburg, an English teacher at Hug High School in Reno. "We have focused our attention more on his interaction with the world, not so much on his diet or behavior. I would say get your child out in the world every day, go to the libraries, zoos, museums and expose your autistic child to as many things in the world over and over and over again."
When Gunnar was 2 years old, his first words were Korean, the native language of his mother, but then they noticed his speech skills flatlined. The Altenburgs also noticed their child would take a deck of cards, ties and feathers to form patterns on the floor.
On one occasion, Rick Altenburg tried to play catch with his son, and he noticed his son would place one of his hands palm up and the other palm down. When he tried to have Gunnar use the other hand facing upward, Gunnar would face his other hand downward. In February 2002, Gunnar was tested and evaluated as high-functioning autistic.
"Sue (my wife) and I recognize that it's a lifetime commitment to doing the best for our child so that he can someday be somewhat independent," Rick Altenburg said. "The dreamer in me would like to be able to catch lightning in a bottle and have enough money so I could set Gunnar up for life."
Sparks resident Tracey Mills can empathize. She knows there is a probability that her 8-year-old son, Ryan, who has Asperger's, will be living with her and her husband for the rest of his life.
Ryan experienced problems with acid reflux since he was born. He was developmentally delayed in crawling and walking. By the time he was 3 years old, a relative noticed his voice was monotone, he didn't make eye contact when shaking hands with someone, he often would wear goggles, and if you asked him a question his favorite phrase was, "Sharks are in the water."
"It was just like he was in his own little world," Mills said.
Nevertheless, with the help of his teachers, Ryan, who is now in the second grade, recently completed a book report on Thomas Edison.
"Whatever God has given me, I just go with the flow," Mills said. "I sit here and I say to my husband that we are so blessed. At least he can tie shoes and make himself a peanut butter sandwich."
Early treatment vs. affordable treatment
Ryst, the psychiatrist at UNR, said that the one thing that can help children with autism reach some level of independence is early treatment. However, the costs associated with such treatments can soar to the thousands of dollars and many insurance companies do not cover children with autism.
Lori and Gary Kuhre, a Sparks couple, said their healthcare options for their child Joshua, 5, are limited because their health insurance doesn't cover treatments for autistic children.
"There is no easy road," said Lori Kuhre, a certified respiratory therapist. "If we make too much money Joshua wouldn't be able to get Medicaid."
Gary Kuhre, who became a stay-at-home dad to care for Joshua, is planning to walk to Washington, D.C., in hopes of creating awareness about autism and the struggles so many parents face with insurance companies that don't want to recognize the disorder and to raise money for other families who can't afford treatments.
"I feel like I have to live forever so that my son doesn't end up in an institution," Gary Kuhre said. "There are people that are even worse off than us, and they can't afford anything."
Springer said she also would like to find a way to help people who can't afford services and perhaps someday open a school that has adequate aid for children in the autism spectrum that is fully inclusive. She also shares the Kuhres' concerns about how their mortality will impact the care of her child.
"People say, 'It must be really hard to have a child with autism,'" Springer said. "It's not hard, the system is what makes it hard. You need to put them in a space where they are going to be amongst their peers because eventually that's where they are going to be."

INFORMATION ABOUT AUSTISM
For details about Shannon Springer's lending library call 354-2060, 830-8063 or send an e-mail to Danspurple@hotmail.com.
To learn more about the signs of autism visit www.cdc.gov/actearly, and for more details about the CDC's work on autism visit www.cdc.gov/autism.
Support group: R.A.I.N. meets every first Friday of each month. Details: call Toni Richard at 324-5085 or e-mail isign3550@sbcglobal.net.
For details on sponsoring Gary Kuhre's walk to Washington, D.C. send an e-mail to jeezus_n_us@yahoo.com. Or stride4autism@yahoo.com.

Together we can do this, we can do anything!!
I do have a story......please check out my website at www.judyannministries.com thanks....Judy

I plan on posting more about my story later today. I am very glad I found the site, and I am excited to be a new member. Just some quick info about my son, Braydon is 3 years and six months old. He has always be social, a very sweet child. Loves hugs and kisses.

He is my fourth child born out of five. I knew he was speech delayed but, I was not sure it was autisum. Because his older brothers both had speech delays and are now in school, they are only pulled for short periods for speech. I though at first he had maybe the same thing as them, only worse.

But, after evaluations thru the school system, and research online I feel he is autistic. He has been placed in a class with 5 other children with autisum. He has a wonderful teacher. I am working on getting him to a doctor to verify that it is autisum. I also have an appoinment set up with A ped. Doctor that works with Autistic kids on diet and such. I am sure I will learn more after my first appoinment.

I am very hopefull, and willing to do whatever is needed to take care of my little angel. I have been looking into diet and such online the last few days & feel overwhelmed. Couldn't sleep so I came online... & found your site!

I am looking forward to meeting and talking to other parents, and sharing ideas.

I am new to this site, and I am really looking foward to getting ideas from others and sharing my experiences as well. I am a mother of 2 boys with Autism/PDD, ages 9 and 4.

ssgypsy39169.573275463

I am the mother of a high functioning autistic 5 year old and I found out when she had here kindergarden assesement. Life for us is a new journey and full of joy and life everyday. We just went bowling this past weekend and it was her first time she threw the ball then went chasing down the alley after it. I ran down the alley and fell slam on my butt from all the oil they use and had to slide with her in my lap backwards to the end. All you could see is my handprints up and down the alley. It was so funny!

She was transferred to a strictly autistic class this year and now they are trying to mainstream her in regular classes. I'm so proud of her, she is so brillant in every way possible. She is what makes me wake up and be happy to be alive. I want her to always know that she can do anything and I will help her to achevie it. The school said that her vocabulary and reading skills are amazing, she picks up on things so quickly. Academically she is way above but socially we have challenges but it very interesting at times.

livewriter200039169.5646527778

i hav a lil bro who has autism!! he is 10 yrs old an he was better but now he gettin worse, so i got a ? wats goin on???

Hello, I am a grandmother to a wonderful 6 year old boy. His parents, and younger brother, plus my dad live in the same house, so am more involved then most. Wyatt is high functioning, and doing just great in school. He has his moments.

Every evening his does what I call his laps, back and forth from the living room to the kitchen, he also ever since he was just a baby, has kept the beat of music. He never just pound to hear the sound, he would hear a song and just keep the beat of the music.

We live in Northeast Kansas, outside of Atchison. The grade school that Wyatt goes to has some wonderful teachers and paras, and have done wonders with him. But, I question some of the lack of understanding or not have the right trained personal with him.

But it seems that in our family with children, grandchildren, and great grandchildren that we have alot of learning disablities, but this is the first of the children to have autism.

I found the website by accident and am so glad I did. Thank you

Hi all,
My wonderful ds was just diagnosed with delays, sid and pdd-nos last week. His is 22 months and non-verbal but trying. He is the light of my life and this is breaking my heart. I was just told about this board from a friend and so glad that I found it. I have learned a lot already and you have given me some hope. Thanks for being here.
Paula

Hi Paula, it is hard to take that initial dx, but do not let it break your heart! I am dealing with a recent dx myself but in a 6 year old ... who had speech delays and early interventon, like YOU are going to get!

Take heart, you are finding out early and beginning to HELP him. And as you siad, he is nonverbal and TRYING!

I hope you post more here ...

Sera H39249.2488657407Hi, I am new here. My son just turned 3 years old and was diagnosed PDD in November 2006. When he was 18 months old a routine well-baby check confirmed that he had no words. His pediatrician suggested Autism and to have him evaluated. We immediately called our local ECI Pride program and were told that he was not Autistic. I wanted so hard to believe it, but my sweetie is so quirky. The OT and ST both agreed that has fantastic eye contact and is on target with fine and gross motor skills. I was relieved at first, but still didn't believe it...something just nagged at me. When he was 2 1/2 I took him to a neurologist, who met with us for an hour. He didn't want to label him, but on my insistance, he said PDD. A year ago my son had no words. None! Now, he has at least 1,000. The problem is the social and his quirky behavior. He loves to quote his DVDs, rattle off numbers and can read and spell at barely 3, and always has to be holding something (playdoh, a coin, beads, Legos, etc.). He enjoys the company of other children, loves to be touched, stopped having food texture issues, no longer has problems with loud noises, so I don't know what is going on. I am hopeful, as is the neurologist that he will outgrow the quirky stuff. He had an MRI done in November and it showed nothing out of the ordinary. My hope is that Max can go to regular schol, have friends and enjoy life to the fullest. I love him so much it hurts and want the best for him. I cry every day for what may or may not happen to him. My only hope is that he can adjust to society. It's a cruel world and my son is so sweet and innocent. Right now I am so torn up inside with my emotions I just want to scream.

Anyway, that's my story. I look forward to chatting with you all.

I just found this site as a was trying to get an answer from the internet about my newly diagnosed 20 month old. This site has been so informative reading and hearing what everyone has to say. As a Mom I'm glad to talk to those of you who can understand the heartache and love that I feel.

My son has been officilaly diagnosed with "PDD". I haven't had the follow up meeting to determing early intervention services so I'm hoping you experienced Mom's can give me any tips to ensure my son gets what he needs. He is getting speical instruction 3x a week (1 hour) and speech 2x a week (45 minutes). What other services should I seek that have benefited your children? Can anyone fully explain PDD to me without the textbook talk? I know there are different forms but would like to hear another parents thought. Thank you in advance for all your support!

Yasmine, your son sounds so much like my little Quincy. Quincy has been seen yet but he is "quirky" as well. He is very social and speaks on level and all of that. His quirkiness involves repeating commercials/DVD/whatever, he too holds cloth diaper most of the day when he is at home...he doesn't want it at daycare which is strange. He loves to be hugged and kissed and all of that. He plays well with all kids and likes to wrestle and jump on the trampoline like most little boys. He arranges his hot wheel cars on the dining room table and doesn't like them to be moved. He doesn't do it everyday or all day when he does it but he definitely likes/has to do it. My sister seems to think that he is OCD which he may be...I believe I had a bit of it as well but who knows.

I'm hoping to push my ped at his 4 year checkup to recommend us to a good doctor.

Hang in there everyone.

Karman

This is my first posting, but have been reading on this site for some time,
and am very impressed. I just wanted to see if this was the site for me
before I actually posted something, and it appears it is. I am looking
forward to some insight and, really, more, understanding, from parents
who understand what life can be like with these kids.

My youngest child, a son, reached all his milestones normally, except he
didn't babble or speak. At 15 months, at my insistence, he was referred
for speech services (the dr felt that probably it was nothing-just his older
sisters doing all the talking for him. I just didn't buy it.) Still nonverbal at
18 months, but could sign 3-4 word sentences. By two, with therapy, the
words started coming. Now, at 4, he has surpassed most of his peers in
language ability. Hard to believe this motormouth was ever non-verbal!

However, by 2 1/2, he was also doing other things that were concerning.
He lined his toys up, when the line "broke" he would fall apart, he walked
on his toes, he flapped his arms when happy or upset, and he was
extremely routine oriented. He finally got diagnosed with PDD after
trying a regular preschool program and he just couldn't fit in. It took so
much of the teacher's time to keep him from getting upset all the time.

He's now in a special ed preschool program, and is doing so well that we
are anticipating a regular K class (he just turned 4 so we still have another
year of preschool). I am thrilled about his progress and his prognosis.
But this leads me to why I'm here...

He is often so high functioning that people do not believe he has
anything wrong with him. He does extremely well within the structure of,
say, a classroom, but at home, he falls apart. The slightest change in
what he expects throws him all off. Trouble is, we can't always anticipate
what HIS expectations are. Today, he wants the "middle bowl" for
breakfast, tomorrow it might be different, so it's hard to know what the
rules are for the day with him. This is just one small example of MANY,
as you are all aware, I'm sure. And he has trouble regulating himself, so
he appears to have ADHD, when in fact we don't know that he really has
that or not.

Thanks for listening anyway. It's reassuring to parents like me to read all
of your stories so that we can see we're not alone. Many of your stories
made me think -that sounds like my son! Thanks for sharing them.

Hi, 3 -- your son sounds SO much like my daughter! It is not that she is rigid about schedule, but about her own, ever-shifting expectations!

Welcome a-board ...

Sera H39250.2733449074

This is my first post here. Both my twins are on the spectrum. Elizabeth has classical autism, (moderate-severe) and my son Benjamin has mild PDD-NOS. They will be four in August.

I'm really tired at the moment, but this tells the story

http://whatkindofworlddoyouwant.com/videos/view/id/242970

Karyn39202.8623958333My middle daughter is 4 and in Jan of this year was diagnosed PDD-NOS. I live in DE and her fatehr and I have been trying to get ehr into the DAP Delaware Autism Program. We are having a terrible tiem getting help for her. Someoen todl me it may be becasue of the diagnosis of PDD. I was wondering if there is anyone local on these boards who either went through similiar problems or someoen that can help me out.

Read an inspiring story writen by a mother of an autistic child, on the citizen journalism website, Orato.com:

http://www.orato.com/node/2278

Quote:

"Before Adam was born, I knew he was going to be a boy. I had one of those lucid dreams in my first trimester where I actually “saw” Adam. My dreams were typical ones: picturing early mornings at hockey practice, cars, trucks, superheroes, and later a girlfriend hidden away behind a closed bedroom door. My only fear was in not having a child – in never having the joys and the headaches at all. So maybe that’s what made me a happy mother of an autistic child..."

I am new to this forum. I have three boys, 12 year old twins and an 11 year old. My one twin has been dx with PDD_NOS.

Hello, everyone

I've been off-line for sometime. So here's the update. My son started college in the Fall 2006. I haven't gone back as I had hoped--my other son needed me too much. Just couldn't get it together. However, I will say that Cody is doing tremendously well. He is taking regular courses--College Algebra, Ear-Training, Theory of Music. He currently has a 4.0 and won a $400.00 music scholarship for the 2007 Fall Semester. Cody has placed 2nd for PS-12 Division in the State of Texas for Original Composition (piano solo) and will be performing at the DFW Hyatt in June 2007. Sounds so glorious--but, it takes my 100 percent dedication to seeing that he is successful. It is not easy and very time consuming--but the outcome has been rewarding. I encourage everyone to not give up on their children. I think that there is hidden treasure to be found in each and every one of them. It doesn't have to be hopeless....by rutired

my boys:My oldest is Seth he is 5 and this Sept he starts pre-k wow

Seth was diagnoised when he was 3 i first thought he couldn't hear i can still hear my fathering saying that to me get his ears checked.But seth would always carry around playing cards with him always i mean he would even sleep with them in in hands.and a total naked i mean when he came in the house cloths came off. it was a hard process and still is but i wouldn't trade him in for the world.aba has worked great for seth..But the day he got diagnoised i remember thinking there something wrong, just thinking i have a answer. put me at a lil peace crazy ha. to say that.but true almost 3 years and it has been a ride.Now with r youngest son John he got dianoised in Sept of last year a total big SHOCK in mean i put him in early intervention quick see with Seth i had no idea about it until he was 3 and they said he was to old,so i didn't wait with John i did every thing by the books and the speech theapist said that he had some delays ok i accepted then the OT said she say delays i couldn't believe it so off to the neuologist.and the wait alone in Mass is like a good 6 month to a 1 year.so we waited.the day john appt came the night befor i had emergency surgery so my husband went with my mother.i remember laying in the hospital bed thinking not JOHN things will be fine. having morphine in you and thing of your childern can mess you up.so any my husband came in to the hospital and said that they gave him a diagnosis of autism.BUT my husband ssaid that the dr. said he seem very smart and in time he could have a reverse diagnois. Has anyone heard such a think?not me but he is doing well they both are he's been in speech theapy,ot and aba services and he's dong good it just a PROCESS. i wish all the family the best and god gives us these angels for a reason. thank you for this site i just found it and both my boys have high functioning.seth has compulsive disorder and being tested for fragile x syndrom. thank you again. there so much fun wouldn't change them for the world.good night eveyone from Mass

We just found out in April that our 2 1/2 year old son, Cody has autism. He is our first child. We also have a 6 month old daughter. The news has been a huge blow to us. We noticed that he was losing his speech around 18months and our pediatrician suggested we have him evaluated for autism. The lady who first evaluated him said that she highly doubted that he was autistic because he showed interest in her and in us and was very social (which he continues to do). However, because of his speech delay, she suggested that we treat it as autism, just in case. Thank God, we started the speech and play therapy and it has done wonders. I only wish we had done more! He is now nearing three, and his speech is still coming along. He doesn't seem to have too many sensory issues. He is very loveable and cuddly and loves being with us and with other kids. But he still has the official diagnosis, and we're confused and don't know where to go from here.
I feel like I need to blame someone or something for what has happened to my baby. I have all these questions. I have this rage inside of me. I'm so angry. And it's not that I feel sorry for myself. I just love my baby SO much and I have so much fear because I don't know what the future holds for him. Will he ever be teased or treated differently? Will he catch up and be like the other kids his age? Was it the vaccines that did this to him? Or the pitocin I was on when he was born? What about my daughter? Will she end up the same way?
I cry every day. I yell at God. Why would he do this to an innocent little boy? My husband and I are good parents. We never did drugs, we never drink. It isn't fair. I love my little boy so much. Nothing could ever change that.
I get up every day and plug away with the therapy because I don't want to lose him. I want to give him every chance to beat this. He deserves the best.

codysmom39218.0042361111

Hello Cody's mom,

I felt exactly like you when I realized that my child was autistic. I would scream, cry - I was so angry! I also did everything right during my pregnancy. Why did our little boy have to have this horrible disorder. There are moms who smoked, did drugs and drank during their pregnancy's and they have kids that are fine - it's not fair!!!! I know how you feel trust me.

Our Christopher didn't receive a diagnosis of PDD-NOS until he was 4 years old. The first developmental dr said that he had some sensory issues and a speech delay, but was not autistic. I knew in my heart he was wrong so I changed drs's. This new dr was over an hour late for his appt. and our son was starting to get upset being confined in the room - that's when the autism really came out. Finally someone saw......at that point she said PDD-NOS.

I personally was happy to have a diagnosis at that point. I was so sick of my husband arguing with me that he was fine and I was making a big deal about some of the odd things he did etc. I think one of the hardest things is to make some sort of peace with this. I know how hard it is to hear that your baby had a disability. That he would need special ed. services, but you have to do it. It is terrible to feel so angry all the time. Today I am fine with it. I love him and accept him for who he is. Who is really 100% "normal" anyway? Tongue

Today Chris is 6 1/2 yrs old and he is an absolute joy! He speaks well, has friends, takes karate, we even signed up for basketball over the winter. He is also a very lovable little guy. All things that I never would of imagined that he would ever do. He surprises me every day. I have high hopes for him! They have even started the process of main streaming him in regular ed. classes.

Yes, Of course I worry ...will he be teased, will the other kids know he is different. The answer's are probably yes and yes. Most kids are teased- even the typical ones. My husband is an instructor of Krav Maga. We have decided to start training him now to prepare him for junior high. That is when the teasing will be at the all time worst in his life. Kids are mean, but they like to bully the weak and the ones who won't defend them selves. I say enroll him in martial arts around 4. The benefits are great on many levels.

Anyway, I don't write often on here, but your story sounded so similiar to mine and touched me. 2 1/2 is a hard age. It will get significantly better by age 4-5. Keep plugging along with the therapy. Your daughter will be a wonderful friend to him. Christopher has a 3 1/2 year old typical brother. He is always in his face talking to him, wanting him to play. (as I write this they are in the room playing rescue hero's) Brandon pulls him out of his autistic world. Christopher's stims less and less each day.

The best of luck to you and all the moms out there. We are all walking on this road together and there are many of us!

Hi Cody's Mom,

I, too, have a son who is 4 and sounds very similiar to your son. I wanted
you to know that I felt many of the same feelings you are feeling now
when this all started at 2 1/2. I still look back and wonder, what could it
have been? How did I not see it sooner? Etc. So you are not alone. What
you write about, I'm sure, we all have felt to one degree or another at
some time. But I also want you to know what it can be like 1-2 years
later.

Today, my son, with lots of therapy, is doing great. In many ways most
people wouldnt 'be able to tell he was different. It is only the people who
spend time with him who notice the differences. He is also a very happy
child who does very well in his class and plays well with his older sisters.
In many ways, he is "above" his peers academically, just not socially. So
in terms of where your child is headed, who knows? But, a "PDD"
diagnosis does not mean the child can not have a bright future.

You are so lucky to have found out so soon with your son and to be able
to start interventions this soon. I am convinced that is what saved my
son. But, my son has taught me to be compassionate and so much less
judgemental of others, so I'm sure he was sent to me for a reason. I have
had to learn patience when I didn't think I had it, and not to be so rigid,
and lots of other life lessons that I think were good for me, not just for
him. Is life always easy, no. But to be honest, it's not that easy with my
other, older kids either, and they don't have PDD. And I absolutely agree
with the other moms who ask, who is really 100% normal, anyway! The
struggles I have with my son are just different.

And finally, I agree that siblings are so great for these kids. My girls have
taught my son things that he never could learn in school or from other
kids. These kids have trouble with basic social skills, but being in a
family with siblings sometimes, I think, forces them to learn. Sort of the
"sink or swim" approach. And while my girls get frustrated with my son
just like all siblings do, nobody is as patient with him as much as they
are.

Good luck-we're all just doing our best here.

Hi Tutti. I am also in Massachusetts. I have found some great pediatric neurologists and the wait was minimal, maybe 4 weeks or so.

I think every Mom feels the initial anger of "why my baby?" but you need to move past it. Holding onto that anger is so counterproductive to helping your baby be the best that he can be. Nick was diagnosed as ASD-high functioning but it was a nightmare for about a year. I have come to realize that it was the year that *I was angry, not that he was doing things worse than other kids.

Nick will never be "normal" in the true sense of the word but he is much much better now. Gone are the days of the banging of his own head, the pointing at objects to make me understand what he wants, the screaming for no reason, the sleepless nights (His and mine), the almost "dread" I would feel when it was time to start a new day. He is funny, smart, talks almost in sentences now, sleeps like a champ, and is so loving. He loves his little sister and they are inseperable. It took me 3 different preschools and selling my house to move to a different community for this to happen. I don't have any great words of wisdom except to hang in there and let go of the anger. It is what it is and you have the child you have for a reason. Don't miss out on the joys of their childhoods because you want a reason "why." We will probably never find out why in our lifetime.

Hello Cody's Mom,

Yes there is hope! When you are first diagnosed it seems the world has come to an end. Maybe your initail dreams have come to an end but life is not over. God didnt do this to your child. The world is a bad place and bad things happen to good people and to good kids. God personally chose you to be Cody's mom, and he did that for a reason. Yeah it is unfair, but life is unfair. These kids are special. I wrote a book about my son and our journey called "An Angel kissed by God" Because that is what he is...these kids are special....dont give up hope....he will improve over time.

Take care & God bless

Judy

Hello,
My name is Adrienne and I have a little boy who is in the last stages of being diagnosed With Autism.I'm just looking right now for other parents to talk to and stuff like that.Well just wanted to put that out there.

Thank you all for your time
Welcome Adreienne this board has been a lifesaver for me Thank you,that is what i hear hope to learn lots well i'm here and meet other people like my family Hello, Im not sure if my story will help or worry parents of autistic children. I am 25 years old, was diagnosed at the age of 4. Spent until 7th grade in special education before I was put in normal classes. I never mixed well with other children, but once I got older, high school aged, I changed. I began to socalize more, become involved in school events, make friends and go to wild partys. I must say that I think the partying is what changed me the most, I met people, they though i was a little odd but fun to be around, I enjoyed the outdoors and attended drinking and pot parties in the woods. I grew up some more, Got a job and went to collage.

My life changed again when I was arrested a few times for fights, DWI and possession charges. Obviously this is not the road you want your child to go down, But being mildly autistic it seemed to be the only road to a normal life with friends and popularity. I graduated collage, took responsibility for my life and managed thru a friend to get a job driving forklifts in a warehouse where I am now the manager of my own crew.

I own a small house amoung many other things, I drive a vehicle everyday I live alone, often am alone and enjoy hiking and fishing by myself, sometimes find myself repeating words I hear, never even to this day do I make much eye contact, but the point is, i beleive as do my parents that I would have it rough, and I did, but I knew early I was different, and wanted to be independent and have friends, and have a good time (sometimes too much of one but thats collage life high functioning autistic or not)

Yes, Looking back I could have made better choices, but if your child is only mildly autistic when they become of age leave them to make some of their own disicions, introduce them to the idea of independent life, the importance of a budget, and being a kid or early adult (it is normal dispite what parents belive for their child to go to partyes and do stupid things kids do)

I wish you all luck with your children and being a new comer to this site hope I can maby be of help, considering myself to be someone who succeeded in life at least up until this point, your child may never be mainstream, but that doesnt mean they cant grow up to fit in to some degree and be their own person.Woodsman, thank you so much for your encouraging words. You didn't do anything that half of the "normal" kids didn't do...everything we do in life is a stepping stone. You brought tears to my eyes because one of my biggest fears is that Nick, my 5 year old, would never lead a "normal" life. You offer hope for many of us who are uncertain of the future. I want Nick to be self-sufficient and go to college, drive, work, etc. and I always worried that wouldn't happen. Thank you so much.Ya, gald i could help. Ya when I was 5 my parents thought that their is no way 20 years down the line i would be able to do the things i do now, Nobody around me knows about my condition, and i keep it that way for fear that if people found out my friends would look at me differently, i could loose my job, or at least my forklift licence (driving a 5 ton vehicle around people and having a developmental disorder may make people unconfortable)

Hell, i think ive done better then the average kid my age who still lives at home, probably because i understand finances well and have always been concerned with the future. I have a fixation with money, i account for every penny, i keep track of every bill, i plan in advance for things like hospital bills, new car, and other things, probably the only reason i am where I am. And just 12 years ago i was getting out of special ed because i had improved so much and my parents were amazed, i screwed up much more after that, it was a rough ride, but i beleive that many of the children talked about on here, although they have it rough and it may even look hopeless now, as they get older im willing to bet quite a few of them will seem more normal and want to fit in. My parents called it juvinal autism, im not sure that is a medical definition but if you know if it is or not id love to know myself.

Dont give up, high funtioning autistic children are much different from the same in an adult. They will im sure understand they are different and realize they must take steps to conform to the definition of normal as much as possible if they want to succeed like a normal person, i hope that will drive them like it drives me then things will get easier.

Hi! I'm new, my name is Pia, I have a daughter with a developmental disorder, no one seems to know what she has, they believe is only a severe delay in speech and comprehension, the receptive lenguage is very poor, but she has some autistic characteristics, anyway, she goes to special ed, has 3 days a week speech therapy, 2 OT, and we are starting in two weeks Sound Therapy with Mozart music, we do floortime at home, and Isabella is improving every second. She just turned 3, she started speaking 4 weeks ago, Imagine my little girl, not only she has this problem, but also we are from Lima Peru so she has two learn two languages at the same time, is very hard for her. She started by counting in english, but then other words are in Spanish, Isabella is very social, she engages without any problem, she communicates, she has a good eye contact, she just started to point everywhere, but she seems to be in and out all the time. Sometimes I can't reach her, most of the time when she plays with little toys, before she was afraid of the swing, and she did a lot of hand flapping, but know we worked for the last 6 months in her fear to balance and now we can get her out of the swing, the hand flapping is almost gone.

Woodsman and everyone I just want you to know more about Isa! I believe your story is amazing, my only dream and hope in this life is to see Isabella growing independant,so she can a have a normal life, I want to be able to see her have fun with friends, to work, save money, buy stuff etc,

I'm very proud of you and excited, I'm going to work hard so maybe in the future my dream will come true.

Thanks for your email

Pia

Hi Pia!

I just read your posting and I am interested in finding out more about your daughter. If you dont mind can you tell me how your story started...how you realized that your daughter had something different with her....at what age you went for help and how in the world did you get her speech therapy 3x's a wk. I wish my son could get that. What is floor time and where do you go for music therapy and how does that work?

I hope you dont mind all the questions. Hope to hear from you soon.

Momwithhope

[QUOTE=momwithhope]

Hi Pia!

I hope you dont mind all the questions. Hope to hear from you soon.

Momwithhope

[/QUOTE]

Hi MomwithHope! I'm not Pia but my son was dx with speech delays at 18 months old and was put right into Early Intervention. He was given speech theraphy 3x per week and group socialization 1x a week and given a "play" therapist 1x per week. Contact every agency in your area for help!

Hi Mom with hope! That is a nice nickname.

Well as I told you before we have different opinions about Isabella. Isabella was born in 04 without any complications, she was a normal healthy baby, she had a very good eye contact since she was born and she learned things very fast. Until she turned one everything was pretty normal, she smiled, she was saying, mamama, papapapa, dancing, walking,engaging etc. Everything changed when she was between 13 months and 15 months, I started noticing that she was not looking at us, when we called her name there was no reaction, only if I repeated several times her name and very loud, she wasn't speaking, no pointing and no engaging. She was all the time watching Barney, she learned a lot from those videos though, her memory, rhythm, she was trying to imitate words etc. I started working with her, speaking very loud, trying to catch her attention all the time, with song, games etc.

I went back to my country to do some evaluations to Isa, after a month they told me she had a developmental delay that she was in the spectrum, she was 20 months, I was devastated so I heard about this method called Floortime and about Dr. Greenspan, I live in Virginia and they are located in DC, so we got in touch with them, we met Cecilia our physiologist, she came to my house to evaluate Isabella after 3 min she told she was not autistic, that she had a severe delay in speech and comprehension, she recommended speech therapy and Occupational therapy, also one of my friends told me about the county programs, so in order to get especial education for Isabella we had to go to child find, they evaluate Isabella and she qualified for especial ed, so she goes to school Monday thru Friday from 9 to 12, she was diagnose with developmental delays in speech and comprehension, since she started last December, she loves it, she goes in the school bus, she started speaking a little bit, she is learning a lot, she loves kids, her dog, she turns when you call her name, she looks at you, she is doing great.

But also Cecilia told me also that she needed to do the other therapies too, so I do it privately, with to great therapists, I prefer doing it with them cause they use floor time, and the county uses other methods..... also I hired a Flooretime specialist and she came home at tough us how to do it at home, I worked with my insurance to see if they can pay the therapies, so at the end I'm only paying 30% of each therapy. (the private ones)

Last week my speech therapist recommended Sound Therapy, Dynamic development based on Tomatis, is a Therapy based on Mozart music, it is very difficult for me to explain this in English, but it really works, I believe in it.

So what is my recommendation, get your son/daughter evaluated, don't stop after the first one, look for more opinions, do exams if you want to just to know what he really has, or what is going on, This year I did a head MRI, lead test, 113 panel testing, leaky gut, fragile x, chromosomes, timpanogram, and I have an appoiment with a neuro development pediatrician this week. If that works for you great! I really needed to know everything, is my baby you know, and is better for me cause I know what to do, and how to help her. Until now I have no idea if she is autistic or not, only the first evaluation said something like that, but now everybody is telling me that she has some characteristics but she is not in the spectrum, it is confusing but all this evaluations and tests are useful so we know what do. the key of everything is early intervention.

look in the internet for the different approaches to work with autism, OT, sound therapy etc. Go to the floortime web page, to awakeningshley.com and autismresearchinstitute.com, Also talk to your county and try to get special ed, speech therapy, OT etc, I only do special ed in my county cause I preferred floortime in speech Therapy and OT.

I hope this is the info you need, sorry about my grammar; I'm not from here!!!!

If you need more help, just let me know.

Good Luck;

Pia

HI!

I never introduced myself. I am Michelle, I have three kids. My middle boy has autism and he is now six. We found out when he was 15 months old, because of his progression and he had strambosis (crossed eyes). He never really regressed, like some kids do, there was always just something different about him. The main point is we have always loved him just the same as if he had devoloped typically.

I tried vitamins, diets, and a lot of prayers, but nothing seemed to have much of an effect. The hardest thing is my son is non-verbal, but I sooned learned it may not matter much if he could speak or not. Some kids can express themselves well, and some can't whether they have speech or not; it turns out my son can communicate pretty well anyway!

If I had any advice for new parents, get people on your side. The school, teachers, grandparents, and doctors all need to know that you are the person with your child's best interest, and they need to support you and your child to the fullest. I spent some wasted time trying to fight with school and I wish I had the guts to trust myself earlier. They had my son lying around doing not much of anything, and wearing an unneeded helmet. I started my own home ABA program, proved everything he could do, and demanded he get to a school that would respect him and his needs. Now, he is doing quite well, and the pressure is off me a little bit. As moms we never get a real break!!!!!

I respect a lot of opinions on this board, and am thankful for them, but I am not a person out to cure my son. He is really happy, and I would much rather spend my time playing and laughing with my child. That is not to say you shouldn't do everything in your power to help your kids succeed! I do, and it is the most rewarding thing I could ever do with my life.

I look forward to read and post!

-Michelle

My Son Chance had his BIG doctors appointment today January 9, 2007

Today was the day of Chance's long awaited appointment with Doctor Gufstason. He is the doctor we last went to when Chance was only 18 months old and still a year shy of learning to walk. He could give us a good diagnosis since he wasn't very developed yet, only he could speculate on some possibilites.

Back in September we met a family by pure chance, or maybe through the power of God intervening; if that is possible? I took Traci out to Osakas, a type of restaurant she would enjoy, and she knew I would rather have gone up the street to Lone Star or some place like that. The funny thing is she said later after we left, that she knew this wasn't my kinda place, and actually considered since I was set on taking her that was good enough of a sacrifice that she almost said lets just go to Lone Star, cause she knew that would make me happy. However we went to Osakas.

I don't know if you have ever been there, but she said it was similar to Shoguns, another place I had never been. Anyway, here is how it went. I expected a table for two, but what we found was all large round booths surround by large flat grills. They seated Traci and I at one end of the booth, and shortly after a family of for were seated at the same booth. We noticed they had two boys, one was 5 and one was a little older. Traci and I were talking and noticed that the 5 year old was wearing a harness with a leash on it. We both started to laugh and Traci said to the lady, we need one of those for our son Chance. We got to talking and realized that Chance had many of the same simptoms and actions that there son had. We found out he had went to Dr Gustufson back in March or April at 5 years old just like Chance had when he was 18 months old. There son was diagnosed with PDD (Pervasive Developmental Delay) He had never talked and was late learning to walk. It was now 6 months or so after he had been diagnosed and started medication and he had a vocabulary of about 20 words and could count to 10. What hope that had inspired in us that night. We talked all the way home about that chance encounter with this family, and that we almost went to a different restaurant. The next day Traci scheduled an appointment with doctor Gustufson and they were booked solid until today. Here is what we found out:

Today a prayer has been answered. Chance went to the doctor today, he saw a specialist who last saw him at 18 months. Chance is now 6 years and 7 months old. We have been praying for a simple and inexpensive fix. We now have a diagnosis that his brain is producing too much dopamine for his body size. Everyone's brain produces dopamine, but his is producing too much. So, it is like he is drunk or stoned all of the time. The more active he is, the more it produces. That is why he seems to be smart, but acts like he is really not interested in anything. Like an old drunk sitting on a barstool, totally oblivious to what is going on around him.
There is a drug that they are going to give him which should slow down the production of dopamine. And if the amount he is currently producing does not increase with time, he should just outgrow this as his body weight increases. In other words, he will grow to be a normal person.
So now, we have to keep him calm and not allow him to continue sitting in chairs and bouncing. The bouncing and ringing of hands etc. is stimulating the production of dopamine.
To Traci and I, this is great news. We now have a diagnosis, and it is absolutely cureable. In fact, even if he grew to my size and kept producing the same amount of dopomine, that would be fine. The problem is he is producing my amount or more in a 6 year olds body.

We are so happy to get this good news, thanks for all your prayers, it looks like they have been answered.

Let me tell you our story. My daughter was diagnosed with an Autism
Spectrum Disorder between the ages of eight and nine. We had no idea
what we were dealing with but I did something about it. With the help of
my parents, we started working with her so she would succeed. We
worked on language skills, social skills, stimulation, and life skills. Day in
and day out we have worked with my daughter to help her achieve
whatever she sets out to do. Not only has she accomplished alot in the
last six years, but I decided to go back to college and earn my bachelors
in Special Education. She sat in the audience and clapped the loudest
when I recieved my degree two years ago. She now has been playing
piano for five years. She has won many competitions and gotten superiors
for her piano performances. She also is now taking voice and singing. She
has sung numerous times with the chorus at school. She has blossomed
into a beautiful young lady and I could not be prouder than I am now. She
is mildly autistic and has some autistic tendencies but I would not change
her for anything. She is my blessing.

I have two boys, Daniel 8 yrs & Jordan 6 yrs. My eldest boy was diagnosed with ASD when he was 5. My youngest boy is normal. We had Jordan without prior knowledge of Daniel's condition.

I guess the early signs of autistic behaviour had always been there. It's just that in Malaysia where we come from, the medical doctors/specialists are never "educated" to spot this condition convincingly. The "old-and-proven" reassurance when our child is late in speech...Oh! Einstein spoke when he was ??!! yrs old.

Daniel exhibited some peculiar behaviour like gripping and gazing at fabric labels even when he was a baby. Then he started arranging his toy cars in a very orderly manner in his toddler years. Tantrums were also setting in.

By the time he started Nursery, the Kindy teacher spotted his inability to sit down and confided with us. Coupled with change of Peadiatrician who made similar observations, we then made the step to confirm his condition.

Grief, confusion, anger, frustration, tears..all feelings that I'm sure a lot of you parents go through. It was tough adjusting, making decisions, exploring the early intervention programmes available and cost involved...

AND it will still be an ONGOING PROCESS that WE WILL GO THROUGH...THROUGHOUT OUR LIVES as a family unit. And now with Daniel into his 2nd year in Primary School, it is amazing to see him interacting with his youngest brother Jordan as if it were two normal kids talking to each other. Sure there are fights and disagreements but on the whole it has been healthy sibling exchanges.

So at the moment, if any of you parents with a single autistic child, are thinking of closing shop, think again. The hardships on all areas will be there, physically, mentally and financially, to raise a second one. What more with the risk of another disabled child. But lay it forth before the Lord in prayer, we did...

And the journey continues...

Hello and Welcome!

Are there any other families that may have observed the positive interaction of their normal child/children with the autistic sibling ? Or even among disabled children within the same family ?

People on this board have talked about the positive interractions between their children. You might want to post this question as a New Topic under Parents of Autistic Children. You'll probably get many responses.

WIMomOf239241.7193171296Hello and may God bless all the families who have a member on the ASD. I am the sibling of a 24 year old individual on the autistic spectrum. I would appreciate any information on adults on the autistic spectrum who experience psychiatric comorbidities. Dan has always been special to us since he is the youngest .Unfortunately for the past few years experiencing mental illness, but several psychiatrists have not given us a concrete diagnosis. He has always lived with us, but has episodic aggresive states with no apparent triggering situation. Anyone with any helpful info will be truly appreciated.

Tuki,

When was your bro diagnosed with ASD? Was it when he was in his childhood, teens or now as a 24yr adult? Is it the same psychistrist who's seeing him now for his aggressive episodes?

boobear

He was diagnosed ASD as a child. He has been under the care of the same neurologist since a child who referred him to the first psychiatrist who treated his aggressive episodes. We did not perceive an interest from the psychiatrist and sought new help. Unfortunately we do not have a diagnosis.

Dan too was not diagnosed on the ASD although the early signs. His late speech was attributed to an unbringing in a bilingual environment (How bizarre does that sound?) The pediatricians reassured my mom he would be a late talker . His speech therapy began when finally a fourth pediatrician, heard my mothers plea, about Dan being "different" than her previous kids. We remember following him as kids around the house while he spinned and looked up at the ceiling to see what he stared at. It was a journey for my parents, but he is literate in Spanish and we once heard him speaking english to a stewardess on an airplane. Now we face a major setback, with these aggressive episodes and the lack of a definitive diagnosis to his condition. Anyone with info on adults with autism, it will be greatly appreciated.

Tuki,

You might want to start a NEW TOPIC with the header "Adults with ASD". Then readers can zoom in better on the subject and maybe give the response that you are looking for.

boobear

My son Wyatt, who lives a life of routine, seems to have been sent to us to cause the opposite. He has taught me that change, while chaotic and frightening, can bless your life more than you can possibly imagine. Dh and I had been trying to get preganant for 6 months, to no avail. When that didn't seem to be panning out, we decided to focus on getting out of our mobile home park. We had a small, un-fenced yard near a very busy road. The playground was not well maintianed and far from toddler-friendly. (when I think about the possibility of Wyatt living there, I shudder!) We had an 18 month old at the time, we had stopped trying to have another baby and I had just returned to work, since we were obviously not going to get preganant right now.

We moved to our new home, our little family of 3 (or so I thought), and two days later I found out I was pregnant. I was SHOCKED. Now? Why NOW, Lord? We weren't going to even try again for 6 more months! This is NOT a good time. This is NOT the plan. Well those thoughts lasted all of 45 minutes until I drove to my nearby free preg. testing clinic and confirmed the pregnantcy. I knew the baby would only have 1/2 a room (the other 1/2 was packed with storage stuff that wouldn't fit in the over-flowing shed), that I would have to stop working soon and there would be less money with a larger morgage. But somehow, I also knew things would be alright somehow. More than alright, they would be great.

Our ultrasound revealed that Wyatt was a boy. I knew DH did not want any more children and I was SURE he was a girl. I sobbed in the room, mourning the loss of having no daughters- until I looked at my older son. I was overwhelmed with love and thought to myself, "How can I NOT want another wonderful little boy?" It wasn't the plan, but it was perfect. We had lots of boy stuff, and Alan would have a little brother. They could even share a room eventually, fixing the space problem.

I was almost two weeks over-due, miserable and walking around dialated to a 5. I couldn't contract to save my life. I looked at my huge stomach and begged, "Wyatt honey, Mommy just CAN'T go unto June! Please come out now!" When was his induction scheduled? June first!

June first came a few days later, the water tank was leaking all over the laundry room and we were trying to clean up the mess while getting an unwilling toddler ready to go to Grandma's. We dropped big brother off, and headed to the hospital. I looked down at the floor as we parked the car, and saw my toddler's shoes. He had no shoes! Hairspray had leaked all over the bag I packed, my epidural wouldn't take and when I was ready to push, the doctor was across the hall delivering another baby. I told you, this child loves chaos! The doctor came at last, and so did my son. He was hairy, goopy and his face was all smushed from being so low for so long. He didn't look like a t.v. birth, or even his plder brother's birth. But he was out and he was mine. After his bath, he looked as beautiful to the rest of the world as he had to us the moment he came out.

I couldn't wait to get Wyatt home. He nursed like a champ and CONSTANTLY. He was very content. He was such an easy baby, only crying when he was hungry. He only cried loudly once- the second I put him in his carseat.

When I got him home, he was very content most of the time. He hated sleeping on flat on his back and the baby swing, but I thought he was just quirky. He didn't want to be held much unless he was eating. He didn't want to be rocked. He didn't want his dad to hold him. He just wanted his vibrating seat and something to look at when he was awake and his bed when he was tired. He did, however, love the baby sling.

As he grew, he remained a quiet, content little guy. People called him a "serious baby." He liked to eat, play with his toys and watch his big brother. His milestones were all delayed except speech. I thought he was just an early talker and a late walker, like his mom. He hated having his face washed. His first birthday came and went without him walking.

As a toddler, I began to see a few red flags. I only admitted to him possibly having trouble walking. At 15 months, after seeing him only take 1 step every 2 weeks, I had him evaluated at the urging of my sister. (She has a child with severe devalopmental and physical delay) I thought fine, whatever, they'll teach him to walk and then we'll be done with it. He was also not big on affection, and while he would play with his dad, he would not let him show much affection. He had very limited eye contact and lined up toys over and over. How did I not see this?

His therapist, bless her, I think knew what was wrong with Wyatt the day she evaluated him. But she gave me the news in pieces. She had a child with SI and knew how hard it was as a mom to hear such news about your child. She told me later that a coleague of hers acutally had to pull her asside and reccomend her son be evaluated and that her DH, a PEDIATRITION, was in denial about it for months. First, she told me he had low tone in his legs and core. She taught him to walk. When he was walking, she asked me to do a sensory profile. I thought fine, there's nothing wrong with my child. Just because he sucked his thumb constantly after weaning, hated having his hands and face washed, hated being laid back, hated swings, carseats, booster seats, gorcery carts, carseats, seams in his clothes, shoes, bonked into everything, stared directly into flashlights and avoided most people like the plague didn't mean anything, right? After the sensory profile had been scored, his OT told me he had SI. DH thought it was a con to get more money out of us, he was just a little behind and he'd "grow out of it." I went through the usual grieving, blaming myself, worrying about what shots I'd given him, what I'd eaten while pregnant, what I ate while he was nursing, had I played with him enough as a baby, etc. . . . and then began to read all I could about SI. He seemed to be doing so well, I decided to only do therapy sessions every other week to meet DH 1/2 way. When his next evaluation came around, he was farther behind then he had been before his SI diagnosis. All of a sudden, DH started to think maybe he wouldn't just "grow out of it." He began to blame himself and grieve, everything I had been through 6 months earlier. I now feel God allowed us to grieve at different times because I had my sister to support me but Dh needed me to support him. Wyatt began to repeat more words, but did not initiate speech, repeating the last word of egvery sentense. It was hard to find out what he wanted. A month or two later, his therapist reccomended a speech eval and an appt to see a neurologist.

DH and I went together, and the diagnosis of PDD-NOS was lowered upon us. I was expecting it, DH was shocked. The neuro gave us helpful direction and compassion. He told us this was the child Wyatt was meant to be, he was not broken and he would go on to do great things. I found out later that he is not only a father of 3, but one of his kids has special needs, as well.

Since the diagnosis, we have had the normal ups and downs of a family with a child who has special needs. Wyatt is showing more affection now, especially to his dad. He is beginning to have eye contact with close family and friends. He repeats questions he's heard us say to express his needs (He'll come up to me and say, "A'ya hungwy? Want some bweakfast? Okay, stop a'cwyin' and go sit down, I'll feed ya." That's his way of asking for food). He began to recognize letters and numbers around his 2nd birthday and LOVES them. He lines them up over and over all day long. He sleeps with letter and number puzzle pieces. He still has trouble in social situations and goes into his own world a lot. When he's nervous, the repeats himself over and over, sometimes for 1/2 an hour. He repeats dialogues from movies and music a lot, he loves musicals! He is very focused and task oriented. He does have a quirky little sense of humor, he loves slap stick comedly, especially Mr. Bean! He is developing some signs of empathy if someone's crying, but is very unaware of his own emotions. He is very bright, he has a photographic memory. He will look at books for over and hour. He still has some low tone issues, he wears orthodic inserts in his shoes to help with pronation and a "SPIO" suit to help with body awareness. He crashes a lot, into people, places and things. Sometimes on accident, often intentional. I really have no idea where we're headed in the future, whether he'll be able to live on his own, in a group home or with us, whether he'll get married and have children, whether he'll ever let us entirely into his world. But I know our family is richer because he is a part of it. It's so hard to describe Wyatt, I feel like I'm leaving so many of his qualities out because they're hard to explain. But since this is already a novel, I will close by saying thank you for letting me share.

My son Tyler 11, the oldest of my three children is autistic. I knew early on there was something wrong. I asked the pediatrician for help and she handed me a booklet on parenting. The first of many insults. I gave up for a year or so when a different ped referred us to RISP Rural Infant Services Program that in turn referred us at age 2 and a half to the the Regional School program for early intervention. We later visited a number of psychs and a nurologists who just said Tyler was ADHD and recommended 2 drugs at age 3. I was not willing to go the medication route. The doctor was rude and unsympathetic and left feeling again I was alone. After so may let downs I decided whatever Tyler had we would cope. I even felt alone at home, dad and many friends and relatives would say he just needs discipline. We went through many caregivers and still do. Everyday is a struggle. I read any material I could get my hands on and found a section on autism just last year and I felt I was not alone. I knew right away I had found the problem and decided I was only going the the doctor for confirmation. Of course I was right. We went through temper tantrums expected. Hurting himself by throwing his head on the floor. He never wants me to hold him. His dad and I were telling jokes and out of the blue Tyler responded you know I really dont get jokes. He is always alone and never invited to parties when my other 2 children seem to be the life of the party. I know he is hurting and I am so sad for him. On the positive note he is very intelligent. He is creative. Well I could go on for alot longer thanks for this message board. I havent had alot of support in the past and it is great to know again there is hope.

Yes there is hope...my son age 10 now was diagnosed at 3. His father and ped both told me I had a strong willed child and I was allowing him to run our home at the age of two...I knew it was more than that. After diagnosis I was devastated...dad abandoned us....but life goes on. I worked with him 6 to 8 hours a day...he started kindergarten with no services....every year I think he wont make it..he proves me wrong...we just finished 4th grade...he is a little quriky....wants others approval...but over all he appears to be close to normal. without a doubt there is hope... hang on to yours

Judy

I've dealt with many strange, troubling feelings and behaviors since I can remember. I was called everything from "spoiled" to "dramatic" to "picky" to "narcissistic" from a young age, which has taken a toll on my self esteem. I'm now 23 years old and have outgrown many of these strange symptoms, but new ones have come since then. Here's a shortened list of some of the oddities I've lived with since creation:

Memorized a 28-page book word-for-word and read it to grandparents at the age of 2. The book was only read to me one time prior to my memorizing it, which I still recall quite vividly.

An all-consuming phobia of vomit and sickness that has plagued me since age 1. I've spent nights barefoot in the snow to get away from ill family members and haven't thrown up myself in 13 years. My grandfather, brother, father, and aunt all suffer from varying degrees of this fear. My paternal grandpa hasn't vomited since 1973. Yes, he remembers the year.

Random obsessions with people, TV shows, and other things that consume my every thought and come on at random. This has been an issue since age 12. I cannot control what I become obsessed with and the obsessions often last up to 2 years at a time, although this has decreased a bit.

An uncanny ability to memorize TV show and movie dialogue, as well as complex music lyrics in a very short period of time.

A very limited diet. After becoming ill at around 2 years of age, I self-limited the foods I would eat to the point of malnutrition. I've never tasted a piece of fruit or a hamburger. Textures, smells, tastes, etc freak me out.

As a child, I didn't play with other kids and would walk around outside with a stick or other object in hand and pretend to broadcast TV shows and music videos and commercials to an audience I fully believed to be watching me.

I cannot tolerate certain loud noises, grocery stores, clothing stores, and parties...I get overwhelmed and tired very easily. In fact, I'm exhausted all the time.

As a young child, I would play the same music over and over until the tape broke and would not use paper towels to wipe my hands. I required a "kitchen towel" and would cry and scream if I didn't get it.

I feel very nervous in social situations and avoid them to the point of depression and loneliness. I've never started a conversation with anyone.

I feel physically ill a lot--exhaustion, fatigue, allergies, anxiety, sore and swollen knees, etc.

I've never misspelled a spelling word in any level of school and can spell backwards as quickly as I can forwards. I'm on a 5th grade level in mathematics and can't do long division or any subsequent math procedure. I was called "stupid" by my 10th grade algebra teacher.

I have a somewhat photographic memory going back to 6 months of age. I can tell you random things that occurred in my life, as well as the year and my age at the time when they happened. (I remember being bathed in the sink as a baby, etc.) These are vivid memories in which I see and experience everything as if it were happening in the present moment. However, I have a terrible time recognizing faces and remembering what people look like.

I've never been diagnosed as having Asperger's Syndrome or Autism, but the state in which I live (Oklahoma) is very, VERY ignorant to such things. I've been given every antidepressant and OCD medication in the book, none of which helped at all. I took psychiatric meds for 6 years--from age 16 to age 22--and went through the resulting hell of gaining 50 lbs in 3 months, sleeping all the time, and having withdrawal reactions like seizures and psychotic behavior. Doctors treat me like a malingerer and don't take me seriously. My brother, judging from what I've read in books and online, definitely has AS, but he hasn't been diagnosed either. My grandfather is also severly autistic based on the available diagnostic criteria, but no one seems to notice or care. I will never receive a diagnosis because I've quit trying. I communicate well through writing and work from home as a freelance writer and fare okay in my day-to-day life, but am still troubled by the inner problems that no one else sees or can understand. Thanks for listening.

Hi , my name is Gabi , and i am from Romania . I have a litle angel , a girl , Andreea . She is autistic . Scuze me for my bad writing , i don t speak werry well english!Andreea has been diagnosed on 3 yers . She has now 12 years , she speak very well and much but don t very good . She likes to learn poetrys ,and songs . In Romania we have a same forum for parents with autistic children like you. We lern together how to take care , how to treat our kids . Andreea was 8 years in a special school , where hi lern in TEACH metod , and PECS . At this time , she is in special school from children with difrent dizabilities . This school is a government school . This is my little story...

Mark’s Autism Story....

In May of 1988 God Blessed me with a very special little boy. At birth he was in all sense of the word normal, he grew normally, but had a problem learning to walk. We found out he had fluid behind his ears and needed tubes to drain it out, and was told that probably was why he had a hard time balancing himself. After the tubes were placed, he did start to gain better stability on his feet and started to walk. Then when he was not quite two years old he was given his MMR vaccine, and everything changed drastically, for the worst.

From that day on, my son lost his speech, started flailing his arms and legs about, was fixated on fans and other spinning things, and no longer liked the hugs and kisses that mommy liked to smother him with. His diagnoses, (after many visits to many different doctors), was AUTISM! What a blow that was.

Then he started having seizures, although at the time we were politely told, "he is throwing temper tantrums"! Some tantrum, he would hold his breath, (that is what the doc said he was doing), then his eyes would roll into his head, he then would start having convulsions, and then he would pass out and finally begin to breath again. I cannot begin to tell you how terrifying this was for him and me. This went on for a number of years before I finally found a doctor who agreed with me that he was having seizures, not temper tantrums, as all the other doctors said.

His new doctor did MRI’s and EEG’s and discovered that my son not only was not throwing fits, but he had epilepsy on top of his autism. I cannot begin to tell you how badly that ticked me off, because this had gone on for over 5 years, and every doctor he saw said he was having temper tantrums. Not one doctor ever tested him for epileptic seizures or anything else, they all took the easy way out and just labeled him a brat that threw fits. I cannot tell you how grateful I am to Dr. Spenos in Indiana for finding the cause of his "fits", and helping to get them under control.

What made matters worse was there was something going on at his school that was upsetting him so bad that he was vomiting almost every day. Dr Spenos said this was caused by his epilepsy. Anytime he got upset or hurt his epilepsy would kick in and throw him into some type of a seizure, and vomiting was one form of seizures for him.

The problems at school got worse to a point that the bus driver refused to take him to school, because she feared him resenting her for it. I never found out what was going on at his school, but I overheard a little girl who was paralyzed being treated like a piece of trash and being yelled at by the teachers helpers. That was it for me,. We made an appointment with his teacher and the special ed people and told them we were taking him out of the school system and would be homeschooling him from that point forward. He was getting no help at school at all, no speech therapy, no physical therapy, nothing. He sat on the computer playing games, or playing with the class guinea pig. So I figured I could do no worse than they were, after all I had a computer too, no guinea pig, but I didn’t feel a rodent was going to help him learn anything anyway. So we removed him from the school system and began the painful task of trying to teach him ourselves. I say painful because teaching a severely autistic child with epilepsy is not an easy task and at times is very difficult and painful.

We tried giving him preschool and kindergarten computer learning games, but getting him to do them was hard. We tried having him write his name and ABC’s by tracing what we wrote, but his hands are very unstable and shaky, and it just frustrated him more than helped him. Over the years we have tried many different programs for preschool and kindergarten learning, but nothing has really helped him. We did find a 4 CD set at Christmas time which he enjoys the vocabulary on and will work on it on a daily basis and knows most of the answers to. Now he is showing an interest in his 9 and 10 year old siblings school they do online and this year we are going to try him out on it. It is called Time4learning, and is really a good curriculum and online school program. Our 9 and 10 year old love it, because of the animated characters that interact with them and teach them. Our 9 year old has learned so much about astronomy and the planets on Time4learning, and is in 5th grade now, (he would only be in 3rd grade if he were in public school), so we are hoping that Mark will like Time4learning as much as the two younger kids do. We have looked over their special needs program and it looks like something Mark will enjoy and get into using on a daily basis. Once we have set him up with his program and he uses it for a while, we will post and let everyone know how it is working for him. Mark still have the mentality of a 4 or 5 year old, and in some regards, he is even younger still mentally, but he is a wiz with the computer, and strategic games, and our hope and Pray is that Time4learning’s Special Needs Learning and preschool program will be helpful in teaching him this year.

On top of his learning issues, his autism, and epilepsy, Mark has many other issues to. He has a problem with bladder control, and has to wear Depends. He has the typical autistic tendencies, moving his hands and arms fast, (flailing), watching spinning things, he hates being touched, I have to force him to let me hug him, or kiss him a lot of times. He freaks if water gets on him from someone else's hands or hair or anything, yet he loves taking a bath and running water over his hands, and he really likes swimming pools, Jacuzzi's and hot tubs. Mark is quite a character at times, but it is sad that he cannot communicate with us better. I think he would have us in stitches if he could talk to us and tell us a joke now and then, because like I said, he can be a real character at times.

That is about it for now. I am going to try to post a pic of Mark here, but if I cannot figure out how, you can read Mark’s web page and see pics of him on our homeschool site here; www.thedunkinacademy.com, just click the autism link in the left column.

This pic was taken July 2nd, on top of Hogback Ridge in Lathrop State Park, Walsenburg, Colorado. We all hiked up to the top.

Markysmom39276.5630208333

I'm new here. My son is 23, low functioning autism and I've been doing this alone 24/7 all these yrs. I'm tired.

Hi Joan! Welcome to the board.[QUOTE=Joan]

I'm new here. My son is 23, low functioning autism and I've been doing this alone 24/7 all these yrs. I'm tired.

[/QUOTE]

Hi Joan,

Welcome to the group, I am new here also. My son is 19, and I've not done it alone, and truly feel for you doing so, I know how hard it is, and really feel for you. Anytime you want to chat, just give me a yell, I am a good listern and always eager to lend a shoulder : )

I look forward to hearing your story, and learning what I have to look forward to in the years to come. You are the first person I have met with a child older than mine. There are big differences between an autistic child and an autistic adult.

So glad I now have someone I can relate with!

Hi Markysmom:

I just read a really good maybe u would like to read it....it is called "Unraveling the Mystery of Autism and Pervasive Developmental Disorder...a mother's story of research and recovery" by Karyn Seroussi.

It is an incredible book and you may relate to her and her son. I could not because that is not what happened with my son. It is worth reading and even experimenting. Good luck! Let me know if you do read and like it and even more try it.

momwithhope

[QUOTE=Markysmom]

Mark’s Autism Story....

This pic was taken July 2nd, on top of Hogback Ridge in Lathrop State Park, Walsenburg, Colorado. We all hiked up to the top.

[/QUOTE]

Hi Mommwithhope,

Thanks so much for suggesting this book, I am going to go to Amazon and see if they have it. It sounds like a good book. I'll let you know how I like the book after I'm done reading it.

Thanks again,

Carmella

[QUOTE=momwithhope]

Hi Markysmom:

momwithhope

Markysmom39276.7073611111

Hi. I am a mom of a 14 year old son who was diagnosed with PDD-NOS at the age of 3 1/2. And I have a fairly positive story to share, iwith the idea that it will give some of you hope. He walked early at 10 months and was a happy, social baby who would go to anyone and started saying his first words at 11 months, and could sign the ABC song at about 2 years old, but then started losing all of his language and the little he could produce was mostly "echoalia" which is when he repeats language back to you. "Are you hungry?" was answered with "You Hungry!" He started becoming completely fixated with bulldozers and trucks at around 2 1/2 and would become upset if we wouldn't stop to look at them if there was a construction site on the road. We took him for an evaluation to our pedicatrician who assured us everything was fine, and that he was just a little delayed in his speech. But his preschool teachers kept telling us he was extremely hyperactive and that his speech was difficult to understand and to please get him tested. We got him tested by the speech pathologist who thought he had autistic tendencies, but the school psychologist and other specialists in the district thought because he was so happy and social and interactive with them, that he couldn't possibly be on the autistic spectrum. They thought he just had severe ADHD and expressive/receptive language problems (aphasia). I took him to several more specialists and they were split between ADHD and severe language issues and PDD-NOS. The Regional Center in our area confirmed PDD_NOS, and so did a developmental pediatrician at the University of Wisconsin in Madison.

Here is the key to our son's hug success. 1) When we finally got done drying our tears, we threw ourselves into the process into getting educated on this disorder. I spent countless hours on the internet. 2) I also put him on a small amount (2.5 mg)of ritalin to control his hyperactivity and help him sit still long enough to benefit from speech therapy. 3) MOST IMPORTANTLY, when he was 4 1/2 my husband and I got him into an Applied Behavioral Analysis (ABA) program which ten years ago was offered to us at no cost if he had the PDD or autism label. Not sure if those resources are still available or not - budget cutbacks have occurred and every state is different. Anyways, this program was administered by a child psychogist who was trained in autism and behavioral therapy. Most good developmental pediatricians can refer you to one of these type of psychologists(yes, the good ones have a long wait - so call asap to get your appoitnment with one - particularly those affiliated with a University Medical school)

The intensive 30-hour a week ABA therapy program helped him IMMENSELY with improving his speech and getting caught up in the academic, self-help and social areas. We also had them work on his hyperactive behavior and his hitting other kids particuarly his sister (constant, consistent time outs finally broke him of this pattern, and positive reinforcement with lots of high fives whenever he was especially nice or good about sharing with her)

At 4, in his IEP for his Early Childhood Program, he was given the label of Significantly Developmentally Delayed - the schools cant diagnose kids with autism - you have to go to an outside medical provider for this .)If you can't find a low cost ABA provider, get the book "Let me hear your voice" by Catherine Maurice at any Barnes and Noble or Borders Bookstores, and she even wrote a Behavior Modification Manual which will allow you to set up your own program and hire your own therapists (often young college age kids who are willing to work for $10 an hour- although this varies hugely from area to area) This helped our son make huge strides. We had him repeat kindergarten, but after that, he did phenomenally and was eliminated from all special ed speech and LD services at the end of 2nd grade. When he entered the Early Childhood program, his IQ was only at 58 - partly because he had a hard time sitting still for the test. When he left 2nd grade, they did extensive testing on him and his IQ raised to 95 on the Wexler Test, and then he got a 124 on a IQ test that is used on non-english speaking kids to gauge their IQ potential (this test tends to skew higher than the Wexler) We immersed him in every type of activity - particularly social activities - as much as possible, and even though it was hard for him at first, he got much better as he got older. All the sensory problems like food that he had until he was 5 or 6 went away, because that was part of our ABA therapy - working on getting him to eat softer foods. His central nervous system matured around 8 and all of a sudden loud noises, school fire drills, blenders, and lawn mowers didn't bother him anymore.

Fast forward to age 14. He is a handsome, fairly confident young man who loves sports (plays on a travel baseball team, middle school basketball team and middle school football team). Since he is fairly athletic, this allows him to connect with other boys his age, and not have a huge amount of social talking involved. He is active in our church youth group and most of our friends just think he has a little ADD and that he he is socially shy but very sweet and quiet. He is still very socially shy - particularly in large groups - like at the lunchtable at school, he will hardly say a word, but enjoys laughing at all the class clown boys who are telling he and others what happened that day. He is still more comfortable with adults then he is with kids his own age, and has difficulty chatting up even the teammates on his own team.

But in small groups, he has learned to feel comfortable. has one best friend who lives in our neighborhood and they get along famously - almost like brothers. He also has 3 or 4 more casual friends in the neighborhood and he rides his bike to their house to play. He gets very good grades in school (we've sort of weaned him off ADHD meds - now its concerta, but he takes the same tiny amount he did when he was in preschool and we only give it to him on school days to help him focus in class. But we have to constantly help him stay on top of his homework, because he will postpone doing it at all costs. His only real obsession is video games, his PSII and his IPOD - he wants to always listen to music in the car, and then on long trips he gets anxious if he can't play with his PSII or even my cell phone to play games on it. Since these are socially appropriate obsessions for his age - he can get away with it, but we still have to keep an eye on him. Ever since he was in first grade, if he misbehaved, he got his videogames taken away for as long as 1-4 weeks, and this has been hugely successful in getting him to control bad behavior. Very consistent and fair discipline is key to controlling these behaviors.

He still gets socially anxious in new situations, and his speech gets very fast and fuzzy sometimes when he is excited and telling us or a friend about something. His speech, slight emotional immaturity and his social shyness are still major problems for him compared to a "normal" child, but I have to remember that in most situations, no one can tell he is much different than the average teenager. His teachers this year had no idea at all that he had any past issues or received any help from his previous elementary school. I have to remember how far he has come since his diagnosis at 3 and thank god for all the miraculous improvements he has made. We have never spoken to him about him having PDD. For awhile I wondered if he had Aspergers - not sure - i guess it doesn't matter...!

but this is the first time in 11 years i have ever shared my story with anyone besides immediate family. And i wanted to give all of you with younger kids just getting diagnosed - some hope. You will get through this and with your love and hard work - your child will improve to whatever his or her INDIVIDUAL potential is. You will be amazed and appreciative of all their progress. I promise you will! It has been a hard journey, but an incredible one all the same and my husband and I couldn't love our son anymore than we do. Keep your heads up and best wishes to everyone!

I just wanted to drop a note to encourage those of you who have autism in the family. My daughter was at home, missing school for a full year- totally withdrawn and non-communicative. She was diagnosed as autistic at 13 and it took a year for the wheels to turn to where we were able to force her into a hospital for invervention. She now is in a special education setting at school and for after school care and brings home stacks of 100% A+ papers (her weakness though is math). She's student of the month and her autism is barely perceptable. All of this is due to her perscription of Risperdal 4mg a day. It has made an unbelievable difference in her life and I can't recommend trying different medications more. I got my daughter back and when I first admitted her to the hospital the therapist who was with me said to me, "Maybe you'll get your little girl back"-- When she said that I thought she was being grossly irresponsibly optimistic as I couldn't believe she would ever recover so much. But she has. I just really want to help anyone who has an avoidance of medical intervention, especially in the form of medication, to be willing to give it a chance.

I said that her autism was barely detectable because she relates normally and shows concern for other people now (she didn't even seem to do this before her descent to the point of diagnosis). She plays with younger children that she can relate too as she's mildly mentally retarded. She converses and asks questions. She gives hugs and enjoys them very much, giving satisfied groans.:) She says I love you to my good friends and me. She asks if we would like some of what she's having and shares. She never used to do this even though she wasn't even diagnosed as autistic until age 13. She was considered "at risk" of autism because of characteristics and the presence of it in the family until age 13 (when she was diagnosed with it). She's more friendly now than she has ever been in her life.

I usually pay more than half of my earned income (and rely on subsidized housing and her disability payments and what's left over of my half time student loans each quarter) for her childcare after school. It's only three hours but they're charging me $12 an hour. This comes to $179 a week and around $800 a month. I do this because I haven't found anyone else that I can trust to watch her in place of the professionals (fortunately she has school year around - which she hates even though she likes school more than daycare). She's vulnerable because of her niavety and mild mental retardation. I took her to meet my boss and best friend at work and I almost had to drag her away because she enjoyed talking to them for so long. I thought it would never end. She told my boss that I had given her over a hundred penny's, which I had- and my boss wisely said, "do you know how much that is?" and Meghan thought for a long time and then said, "about a hundred dollars." :) No matter how many times we try to teach her she just does not get the concept of money and can't even count a dollar. Yet my friend and boss were very surprised at how intelligent she seemed and how clearly and well she speaks.

She tells people that her doctor and mother think she's autistic but she doesn't think so. She then says that she thinks she has aspergers syndrome or high functioning autism. She's very interested in learning to drive and getting a car although I've told her I don't know if she will be able to. She also looks forward to working and says she wants to work at a grocery store. She used to say that she wanted to work on computers but she hasn't said that recently. I think she'll find a niche in anything she wants to do and I plan to always support her and am getting my degree so we can make more money which we love to spend together. :) We're best buddies.

One recent funny incident that cracked me up yesterday was she was taking a shower and needed to pee so she tried to make it to the toilet but inadvertently peed on the bathroom rug and floor. I asked her why she didn't pee in the shower and she said "because it would kill the fish" (in the ocean... /runoff). I got a kick out of her concern. She's a real sweet heart!

There are strong side effects, especially weight gain. I'm writing a paper in my Research and Writing class on the Safe and Effective use of Risperdal in treating Autism and I'm coming to realize that it's very important to be continuosly monitored by a doctor. My daughter's case was very serious and disabling and she was completely socially cut off. As with all medications there is a cost benefit analysis involved. What I'm saying is that you may not be in desperate enough need to resort to Risperdal. :)

Ashton's Mom: Your post hit home with me... It was as if you read my mind the day my son was diagnosed (age 2 and a half). My son and I left the medical building that day, feeling as though a bus ran over my soul. The next days, weeks and months were even worse with all that went through my head regarding my boy's future. Not to mention, the lack of support from family members (who spent all of 3 hrs. on holidays with him and dismissed him as "spoiled" and "strong-willed"). Talk about throwing salt on the wound!!!!!

Please know... there will be hard days and easier days, but do what you can as far as resources (there are SO many). My son's disability has made me a stronger, tougher -yet more sensitive person. My boy is an incredible person with amazing qualities. You will find special qualities in your child and nurture them, because it is where your heart is.

You are in my thoughts and in my prayers.

We knew something was going on when she was born. She never cried that night, not once and she was constantly alert. As she developed it seemed as though every emotion was extreme, laughing hysterically, sobbing, sad, angry, frustrated. She wouldn't eat and we had a lot of trouble helping her gain weight. She wouldn't sleep also and we couldn't go anywhere because something would upset her and she would lose it. We eventually stopped getting invited to playgroups. When she was 18 months we were told by early intervention specialists that she was probably autistic and at 3 she was diagnosed as pdd-nos with a high risk for asperger's. She is now 4 and you could spend 5 minutes with her and know she has asperger's.

I was preganant with our second child when we learned she was probably autistic. Our son was born with microcephaly but the doctors didn't seemed concerned, he kept meeting his goal until 9 months. Then he began his series of evaluations and even though he was completely different than his sister, he slept, he drank without choking, he wasn't a ticking time bomb, he too is autistic.

Now that he is 2 we can see the emerging asperger qualities and now he has severe eating issues, sleep issues, temper, no speech BUT he is affectionate, takes turns well and maintains eye contact. He hasn't been around a lot of other children, I find it hard to see my children made fun of in playgrounds because of their speech or odd behaviors. It's very hard to watch how they interact with others.

I think the only way family members will believe they are really autistic is if we find a genetic cause. We have a 2 year old niece with severe developmental delays and they still thinks it's the mother's fault.

We don't think of them as not normal we just say they're not average.

I have a 6 yr old grandchild that the school is saying is emotionally disturbed but has been diagnoised with PDD and an attachment diorder. My son is being told that if he doesn't attend a meeting for next week then his child may not go to the school. Can anyone help us with information so that this wonderful child can stay main streamed with a one on one aid. He is having to repeat kindergarden yet they have him on no one list cause they are not sure what they are going to do with him.....

My BEST Autism story is from last summer. Tommy was 5 yrs old at the time. We had driven nearly an hour to visit a friend of ours, but upon arrival we found a note on the door that the friend had gotten called into work. (I didn't carry a cell phone at the time.) Tommy was VERY upset and through a fit right there on thier front lawn! After getting a lot of dirty looks from the nieghbors I finally got Tommy back into the car. (at 5 Tommy weighed 85 pounds... not so easy to just "pick him up.)

We were driving home when Tommy looked at the window and said, "Park". Sure enough to our left was a HUGE park. I didn't have anyplace I needed to be so Tommy & I stopped to play.

Tommy immediately ran to join another group of other children while I sat back and prepared myself for the inevitable, "no one wants to play". It never came. The group of children embraced Tommy and began immediatley including him in thier game. One boy in particular took Tommy under his wing and always waited for Tommy, who has a slow and awkward gait, to catch up.

After watching for almost an hour, the group ran to tell thier parents something, dragging Tommy along. I wanted to meet the parent of such amazingly accepting children so I made my over to them too. After the children made the introductions I told the parents how much I appriciated thier children's patience and tolerance. I told them it was the first time Tommy had ever been accepted into a group. I literally had tears in my eyes!

Thier mother looked at me with eyes filled with more understanding than I'd seen since Tommy's diagnosos and told me she wanted to meet her son Kelly. Kelly seemed to be sitting next to Mom absorbed in a book. When his mother spoke to him, he looked up and said, "Hello". It was VERY clear that Kelly had Downs Syndrome.

The group of children were Kelly's brothers, sisters and cousins. And Kelly was WHY they were so understanding and patient!!

We stayed at that park until well after dark. I sat on a tree stump with tears streaming down my face as I watched my little boy PLAY for the first time!!

The world NEEDS more people like Kelly's Family!!!

I love reading all yall stories:)

It is like "chicken soup for the soul~autism version":)

Keep them coming!

How about my story of acceptance?

Ya know how when your child is born, you think how some day they will be "Supreme Ruler of the World!" That of course was what I thought when my son was born. When he was about 2, reality sunk in. And I had all of these people (Early intervention) telling me that he "just wasn't right." As much as I just didn't want to hear what they had to say, I knew that they were right. Now I'm at home fighting with my husband who said there was nothing wrong with our son. Up to this point I had been doing it alone. All of the EI and all meetings. My husband felt it was just a "play group" and good for him.

At age 3 he was transition to the public school system. At the first team meeting all that was said was that he would be accepted into the program and they confirmed the delays that EI had reported. At the second team meeting after the school had been able to do their own testing, my husband happen to have the day off from work and decided to come with me to the meeting. This was the first time the word "autistic" had been said. I never heard another word from any of the team members after that. I walked out, drove to the pediatricians office, dropped off the phycologist report and went home. My ped, called me within half an hour and very carefully explained our next step. Which was contacting the hospital.

I've been on this roller coaster for about 6 years now and I have mourned for the future I had once dreamed of for my son for most of those years.

One day my husband was doing some remodeling on our house and my son was trailing after him being Daddy's helper. As my husband would ask for a tool my son knew exactly which one it was. My husband he matched up two pieces of wood wrong. I don't think anyone would have noticed because the differences were very small, but my son sure did. I spent the day watching the two of them work together and it was then that I realized, that even if my son doesn't become the worlds top brain surgeon, he will build the worlds best hospital.

He's 9 now and he is still very into working with his hands and has an eye for detail that amazing many people.

bpmom39304.3656712963

The first one was apocalypse to my parents ten years ago...

My Dad was raised in an uninformed family. His sister was actually a criminal: Posession of an uncontrolled substance. My uncle had many Robberies, DUIs, Open Containers, and Felonies. He's part of one of the worst Motorcycles gangs in the US "Hell's Angels."

One day I was acting strange, and very aggresive, so my grandparents saw it, and blamed my Mother for it as usual, they've always hated her for some reason. They've always told everyone how bad I was because of my outbursts and aggresivness in the past. After I was diagnosed with Autism I was Asperger's, but not so high-functioning. They've always loved three of my first cousins, just because my Aunt didn't get them back. When my grandparents saw my second from oldest first cousin beat me on the head with a bottle until I cried, they blamed it all on me. It was cavalcade trying to battle them to get my revenge, but ever since we moved things were majorly better. [Some of these things are too explicit for a forum, so I decided to stop it there.]

I can relate to you very well proudofmyself. My family had so many horror stories that when I grew up I moved to the opposite coast and left no forwarding address. I have my daughter and she is mildly mentally retarded and autistic. She's my whole family to me!A lot of the things I was getting to mention was pretty graphic...I am sure there's still more stories about what's been said. There's been some rumours about people talking about my Autism related issues compared to my masculinity. I've heard the one about my grandparents, some girls at school having a giggly old time talking about a smartass Construction Worker which I was brought up in saying I'd be an embarassment to the Department of Transportation blah, blah, blah. No one cannot have a conversation without bringing the name Emily or Eddy, whoever the hell I want to be called. All I know is, girly girls are annoying.That's my opinion. They don't know much, and take for granted...it's ridiculous.

Jen,

You hang in there. When my son was 2, we had him in speech therapy and at 3; I had him in the school system. At 6, I sent him through testing and he saw I don't know how many doctors. They gave me all kinds of diagnosis, delayed speech, cognitive delayments, ADHD and so on and so on. At 10 is when I was given the "A" word by a psychiatrist. I had an idea but when it was said, I cried and I cried. It took me a while before I could actually say the word.

As I explained to my neighbor who now has 2 new grandsons with Autism, my son was given to me as a gift from god for a reason. No one else could take care of him as well as I can. No one can understand him as well as I do and NO ONE can Love him as much as I do.

Each person has a specialty, my son's is dates and spelling. He will drive the History teacher’s nuts when they make a mistake during class with a date from history. He interrupts the class to correct them. He went 6 years before he missed a word in spelling!

I'm proud to say, my son is a High School Senior, he has 1 class he has to take to graduate. He has been able to be mainstream classes with an aid his years in school. He has problems, but it's all workable.

Just cherish every little moment and those special moments you had observing your husband and son working together are the best! Ours are watching horror movies and discussing wrestlers! What ever it takes.

Granny

i have a 9 y/o boy whom was dx as bipolar, auditory processing disorder 4 years ago...now his new psy doc thinks he has ppd-nos. I would like any book or web site refers to get a better understanding of this dx. much thanks!!www.autisminfo.com

Hi,

We found out a little over two months ago that my son has autism. I am a supervisor for a family therapy program, but this came as quite a blow to me. I am hoping that by both sharing my story and hearing from others who have been down this path, I might gain further insight to be able to help our son.

Our son, Chandler regressed in his speech following his 3rd birthday. Chandler has always had a fascination with Thomas the Tank Engine and other train related things. We went down to Southern Colorado for Father's Day weekend this year. We learned that Thomas would be in Durango CO, so made the additional drive to go down there and have a ride on Thomas, thinking he would be ecstatic to see Thomas and the crew. Upon arriving, he only wanted to play with the Thomas toys.

We enrolled him in a school district pre-school program due to his social delays and noticed his frequent temper tantrums that he did not seem to be outgrowing. Upon starting the pre-school program, he had a lot of tantrums and did not want to stay. I believed he had Separation Anxiety and we worked with his teachers on creating a transition plan that progressed over the course of about two months at which point he was able to be at the pre-school for their half day program. The teacher reassured us along the way that she had been doing this job for 9 years and had not found a child she could not figure out a plan for.

Months later she told us that she could not quite figure our son out. She called in a team of professionals from the school district who assessed our son. I wanted to believe he was intimidated by the group of professionals in the room and did not interact much because he was intimidated. The group reported they believed he was autistic. The Psychologist who did the testing on our son had us fill out some questionaires and sent the same type of questionaires to the teachers. I reasoned with my wife about the symptoms of Aspergers Disorder and we wondered if our son might have this. After the testing was completed the Psychologist confirmed that our son is indeed Autistic. I was both saddened and afraid at hearing this news as I had a rush of memories from my oldest brother's life wash over me.

My oldest brother was diagnosed with Autism and spent 6 months in a mental institution in the State of California in the early 1970's. This experience has colored how I view my son being diagnosed, yet I try to understand that we have more information and tools now than we did back then. Having said that, I guess God had a different plan for my family and would not give us something that we could not handle.

I am happy to see that this forum is available and hope to learn from this site.

Kevin

Hi my name is Judy,

I have a son diagnosed at age 3 yrs now age 10. At this stage I am sure it is overwhelmning for you. I have a website wit a lot of valuable info and link to other web sites. www.JudyAnnMinistries.com. God is faithful. There is so much information out there and treatmnet options. Even if you had a relative with the same diagnosis it is so much differnt now and have developed even more in the past 7 years. Now there is treatment options, education and help out there. Stay focused on recovery and it will get better.

Sincerely, Judy

Oh yeah, all that help out there. NOT. Autism is a money making machine. If it has to do with autism, it costs a pretty penny. All that 'help' has a dollar sign attached to it in some way even if it's not outright visible. Well, let me tell you newbies, it's all a fight, one after another. Until you are so worn out you just hope to hang on until your kid reaches 18 and hope you don't go broke -emotionally and financially- before then.

I've got 2 autistic teenagers and all I've been doing for the last 16 years is fighting for each and every thing that has to do with my sons. No joke. There has not been one instance that I can point to and remember hearing anyone volunteer asistance. Plenty of sympathy, but not a lot of action.

If you've got access to money, life with autism goes smoother. If you don't, then it's best to be flat broke so your child will receive services without interruption. If you're somewhere in the middle, you'll be on the slippery downslope constantly. Don't dare make an effort to improve your circumstances, it may cost your autistic child his 'help.' It gets so bad a married couple will actually contemplate divorce just to get their child services. Get on every waiting list you can as early as you can and hopefully by the time your child reaches adulthood their name will be called so that they can receive services.

I'm not telling you to scare you, but all this smoke and mirror feel good stuff is not going to prepare you for the fight. Being nice will make you some false friends and get you some fake smiles and promises. But it's the pushy, demanding parent that gets the services through schools. It's the broke parent that wades through the reams of government forms that receive and keep the government assistance.

In 1992, my husband and I found out we were expecting again. We had a sweet little girl and couldn't wait for another child to love. We found out we were having another girl and were so excited our first daughter would have a playmate so close in age.

After the birth , we noticed small things along the way that old us our second child was not progressing as she should. Her sister was talkative and very precocious at an early age. 2nd daughter said only a few words and then stopped saying those as well as walking late---after doing the "stiff leg and hands on the floor" walk for 4 months.

I kept asking the Pediatrician but was constantly given the "all children progress at their own pace talk". We were young parents and just didn't know to question authority yet---we would get there eventually.

At another appointment, the ped. takes me into the hall and tells me I have a "serious" problem on my hands. That our daughter was about a year behind on her language development. This was just 1 month after the last time I had questioned the pediatrician. I felt stunned. Did this doctor not even know us? It was like meeting her for the very first time when we had been patients there for 2 1/2 years!

After getting the run around trying to get a diagnosis, we were finally told it was severe developmental delay. I will never forget the Neurologist telling me that "we were in the box but just not in the corner we wanted to be in", whatever that means. I still don't understand that bit of logic. We felt like we were moving in slow motion for months. with no clear idea of what we were doing. The best description I have heard said is that you go into mourning, for the loss of the dream that you had for your child. Some parents are able to get that dream back, or maybe even hold onto it. But for others, we have to come up with a new dream. It takes time.

We have dealt with driving in the car for an hour every night for more than a year getting our second daughter to go to sleep. Climbing into the bathtub fully dressed, accidents in the tub, potty training issues, self hitting, stemming, echolalia, and on and on. She was finally diagnosed with severe Autism Spectrum Disorder at age 7.

Now, we jump forward, she just turned 15 on Friday. We are now dealing with puberty and female issues. After trying to deal with menstrual cycles, setting us back with bathroom accidents after finally getting it down around age 10, we started shots to stop that cycle. Being non-verbal with almost no communication, it is next to impossible to explain to her that a pad is for female discharge not urine or bowel movements.

I actually envy those of you who discuss backtalk, arguements over bathing, discussions of not having friends, etc... I will take the teen angst and embarassment at having your parent look in the shower or bathroom at you. We have had to perform all hygiene duties since day one. If left alone in the shower she just stands in the water and will not wash. I brush her teeth every day as she will only hold the toothbrush still in her mouth.

It doesn't matter.

We have had fantastic new milestones.

Going to school without a pacifier and Winnie the Pooh. Trying new foods. Learning to tie her shoes.

Her sister is now 16 and they have a younger brother that just turned 8.

We keep pushing forward, one foot in front of the other, trying to protect her as well as protect her sister and brother from the harsh world.

New to the board and so so happy I finally found an active board. I will tell you it is so hard to find a forum where postings happen daily. I know this is the place for me. I have twin boys age 9 1/2 and one being dx'd with HFA this summer. He was first dx'd with ADHD at 3, then at 5 he was hospitalized and a new dx was added early bipolar disorder (which just didn't fit him). After a move back to my home state two years ago, I had to go with all new docs and all the forms and all the test and all the -- u get my point. I had a feeling back when my ds was 5 that he was in the sprectrum but couldn't get anyone to tell me yes until we just made a new change of doctors this past year. My ds was very literal with everything. To be honest - in the beginning I thought he would do things on purpose - for example: Please don't color on the floor - get up on the table and color - and b4 I knew it he was UP ON THE TABLE coloring "just like mom said".

The most recent episode of him being 'literal' really makes me laugh though it was very embarrassing at the moment: I live in an apt building and we had a new tenant moving in. My other son opened the door for him as he was carrying packages up the steps. He stopped for a moment and I introduced each of us. He turned around and said "Hi I am Rich". (Go ahead laugh and say OMG -- you know what's coming -->). My ds Matt turned around said - "Oh you have LOTS of money - my mom likes men who are rich.!

Yea, I hid my head in shame as it was totally unexpected. My ds now knows his NAME is Rich and if he has lots of money or not mommy doesn't care. (That's what I told him anyway! We all white lie once in a while right!)

I am glad I found this forum and I am sure those days when I need a lift in my spirits this is the place to come. I will love to share also things that have worked with me in the past in raising the twins on my own since they were 2. The other twin by the way is currently being evaluated for ADHD.

dapperma39329.1840393519

SMITH-MAGENIS SYNDROME is a diagnosis that is vastly underdiagnosed. There are 500 of us in the US and 100 others scattered worldwide. I urge all of you to check this out. My son who is now 14,was diagnosed with PDD-NOS since the age of 7. The short of the long story is that we accidentally met a family in our local support group for Autism Spectrum Disorder and the like,we knew within 30min. of talking that my son had "SMS" I got a test ordered called FSH. Normally referred to as a fish test. This actually detects a deletion in the 17th chromosome,thus creating Autistic like behaviors. If you think this is yet another scary thing to deal with it is not. SMS kids are well adjusted as the years go by. If you want to see more details please go to www.prisms.org and comb over it. I am so passionate about this that I wont stop until we hear from one of you after you too have discovered your child has SMS and you can let go of all the confusion and guilt and focus on the families well being. It dosent change alot of things for you ,yet it changes everything for you. I know this for a fact.

I am the mother of Mateo, a very active 4 year old, who was recently diagnosed with Autism PPDNOS. He also has mild cerebral palsy and a mild hearing loss in the left ear which you would never know as active as he is. We live in the US Virgin Islands where the services are EXTREMELY limited for any disability. Initially, he was receiving speech, physical and developmental therapy through the Birth to 3 Program and was transferred to the Department of Education's Special Services Program for PreSchoolers where it was deemed tht he only needed speech therapy. But, his behavior caused me some concern, thus the evaluation and recent diagnosis of ASD just this past Friday. Needless to say, I am in a state of depression, confusion, dismay, and flux at what to do. I had started doing research on programs stateside when a tentative diagnosis was made 3 weeks ago by a pedi neurologist following concerns by the behavioral and developmental pedi. I too was looking into relocating to North Carolina for the TEACCH Program as I was impressed with it. I have also been looking into a program in the Miami-Dade area, and one in Atlanta with the Emory University's School of Medicine. I am at a major loss of where to find a good program and services. I found some website that stated that the best programs were in: CA, MO, OH, WI and NJ. Unfortunately, I really don't like the cold or snow, but I will do what I have to do for my son. I just don't know what to do or where to go. The Department of Education here is only now looking into supor programs for local kids with ASD. They evaluated the SCERTS, LEAP and TEACCH Programs this summer and chose the SCERTS Program. What I've read about it tells me that it is the weakest of the three programs. I am supposed to talk to the Commissier of Education this week to voice my concerns on thier choice of programs. Can I get some feedback, please?

During the fall and into the winter of 2002 our only child, then just a year old, had taken to spinning the top of a holiday popcorn tin. Round and round it went on the floor, making an awful wobbly swirling noise, over and over. Then he would move onto his Fisher-Price stacking rings and grasping a ring in each hand would spin two at once. My dopey in-laws stood there, marvelling at his dexterity. "He should join the circus!" They would exclaim. I stood there, too. Hmmmm... I was a child of the 70's, and vaguely remembered a made-for-TV movie about a little kid who spun things. I didn't recall him joining the circus.

When Drew was 18 months old we took him to the pediatrician for a check-up. "Do you have any concerns?" The doc asked. Well... "Uh, yeah," I began, in my best ha-ha-I'm-sure-I'm-being-silly voice, "It's probably nothing but, you don't think there's any chance he might be autistic, do you?" Just like that. Blurted it out. Because, of course, he was going to say "no". Right?

Right?

"Actually," the doc said, sitting back against the examining table, "I was kind of thinking along those lines myself."

From here the details get a little foggy. I do remember the doctor apologizing, leaving the room, and returning with some questionnaires for us to fill out.

"Stop after you've answered three "no's"," he explained. Does Drew point? Come to think of it... It took us just minutes to finish.

We'd left our house with one child, and it seemed as if we were returning with a completely different one. On the way in, we'd discussed what high school he might attend: the one my father and brother had gone to, or the one my husband had gone to. On the way home, we silently passed my father and brother's alma mater. This school--along with my husband's--were no longer options.

A few months later, a neurologist would give Drew the dx of global delay/static encephalopathy, thus allowing him admission into the state's First Steps program. By September of 2003, Drew was officially diagnosed ASD by a child psychiatrist. He was two months shy of his second third.

There was no denial--the moment he started spinning things I'd started making jokes. Bad ones. Ones I'd never repeat. But ones that stopped me from ever spending one second denying it. In my heart, I knew what was wrong. The moment I said the word "autism" aloud in the doctor's office it just sounded right. Not right-good. But right-correct. So now what? I was too dark for support groups. I'm still too dark for support groups. I'd croak if someone tried to hug me ("HI! I'm New! Ask Me About My Sensory Issues!") I'm blunt. I curse. I still make awful, dreadful bleak jokes. On-the-mind, out-the-mouth. I myself have ADHD. Probably a little autistic, too (it's all over my father's side of the family).

I've spent the time since the dx fighting with schools (they loved me ), trying to find the right help that works for Drew (ahem--the right affordable help that doesn't give off that distinctive odor of money-makin'-horsey 'doo), and trying to convince my in-laws that talking to him like it's the 1950's and the whole clean-your-plate-blah-blah-blah thing means nothing to him.

This year Drew started kindergarten at a new school. I don't much care for the place (they are way too persnickety for my taste), and Drew doesn't seem very happy about it (he's mostly non-verbal, so all I can go on is his attitude and demeanor). It probably didn't help that we lost both of our dogs the day before school started. New school, new teachers, new therapists, new hours...and no dogs. And no one--not even our town's much ballyhooed autism center had any idea on how to handle grief in an autistic child. I could find more out there on what to do with my oldest cat, who--upon realizing the dogs were really gone sat wailing in the living room--but nothing for my son.

I cannot imagine what it must be like in his head. For all of his life--5 years and 9 months--two rather large dogs were always there. Then, one day, they weren't. They just left. For two years he goes to one school--his pre-school--with the same teacher, same therapist, a shadow he adored--and now he's at a new school with all new people. So...where are the other ones? And the other school? Can you imagine not being able to ask the simplest of questions? What happened to Miss Allison? And where the are my dogs?

The tantrums wear me down. His need for routine is tiring. The weird, repetitive behaviors--depending on what they are--can get to me (right now he smells his fingers non-stop. Touches something, smells his fingers. So, you know, he's gonna be sick pretty much all year ). He likes to yell. That can get old. Likes to run up and grab or hit at myself or my husband. Not always the most pleasant thing. And this is on Risperdal (1 mg at bedtime, no weight gain--of course, he eats almost nothing, so that helps). But it's the communication issue--the idea that he lives a life full of unanswered questions--that truly gets to me. Just when I think he has all the power, that I am at his mercy, I realize he has no power at all. He has no idea what's going on in his world. It's no wonder he yells and clings to his routines.

allydelly39341.9759606481

Well,first of all I would like to say if it wasnt for the net and boards like this,I just dont know where I would be right now,so just thanks!

My daughter Kendra was born a little premature and I am not really sure if that has anything to do with it.

Anyways this is my story.

I didnt really notice anything until she was about 13 months old.She wouldnt make eye contact,which at the time I really didnt think much about.I do remember she had more of a connection to me her Dad,when I would come home from work she would hear me come through the door and she would run right to me and want me to pick her up,but she would only raise her arms,but never look up.I remember always having to chase her when out in public,she had a lot of energy and didnt really show any interest in other kids.I didnt really find any of this odd at all.

Then one day her Grandfather said that we should get her hearing checked because she wouldnt look back when he called her.Pfft there isnt anything wrong with my daughter,just keep your opinions to yourself I thought.So,the next few days I would bang pots and pans together in different rooms in the house and she would come in the room and check it out.Nothing wrong with her hearing I thought.

Then it all came together.I was watching tv one day and they were talking about how their child was saying their first words at 10 months.Well I thought to myself Kendra is 13 months and not saying anything,I went over to the computer and looked up when my child should start talking,well the information I started to find would change my life "non verbal" "appears def" " "doesnt make eye contact" all leads to Autism.I was crushed I tried to shaow this information to my wife and family,they would just say no,there is nothing wrong with her,stop saying there is.

So,I told my wife fine just let me make an appointment with her DR. she said fine if it will make you feel better.When I called the dr. to make the appointment I could barely get the words out(I just wanted to cry) when I told his nurse my daughter was showing signs of autism and I need to see him ASAP.When I did get her in to see the Docter he almost seemed upset that we made this emergeny appointment because there was nothing wrong with my daughter.But,I was persistant thanks to sites like this one.I told him I wanted her evaluated,he said shes a little young but ok,so he set me up for a 6 hour eval a couple months later.meanwhile I was slipping into a severe state of depresion,I didnt want to eat,work,play anything.

Well her eval came,they didnt really tell me much,shes got a delay nothing to worry about,but just to be on the safe side lets get her into therapy that was at 15 months.I said great! lets do it.Then they said come back in 6 months.

21 months old she had another eval. this time they were a little more concerned but she was making progress,for the first time tho someone other than me said she was showing signs of autism,but you wouldnt be here if you didnt already have some idea he said.For the first time I broke down in public and shook my head yes.But they still didnt really give her an official diagnosis,she would get that at 3.So they uped her therapy to 3 days a week and she has another eval in Nov.She is doing a little beter,she is starting to point and jump forward.Her only problems now are complete communication,I keep thinking maybe if Ican just get over that Hurdle.

She also has her first DAN appointment coming up here in a couple months,so things are moving along.

Which brings me to my 2nd daughter,I know the odd's she is 9 months and I am constantly testing her.I will go into other rooms and call her name to see if she will look.The problem is I am testing her on little things so often my wife actually gets angry with me.And at times I will even get angry with myself because if she doesnt decide to look back at me one time out of 50 I will think the worst.same thing if she decides to break eye contact as well.But,I check her development chart everyday and she is right on schedule.

This is the first time I have just let all this spill out,so thanks.Sorry its so long.

www.aspergerboy.com

This is my son, Reagan. He was born on April 4, 2003 by emergency C-Section after 20 hours of labor. The doctor was concerned about the stress he was under and suspected that the cord was wrapped around his neck. He was right, you could clearly see the marks on his neck when he was born. Other than that, the delivery went well and he was a healthy baby boy scoring a 9 on the Apgar scale. You could just tell he was put together very well when you looked at him in comparison with the other babies in the nursery. It seemed he was already a step ahead of other children his age. We knew he was special and his future had no boundaries.........

My son mainly eats baby food. The only table foods he eats are pizza,pancakes,breadHello. I have been concerned about my 4 year old son for about 8 months now. I suggested he may have autism to my ex husband and he got furious with me and will not talk about it. Tomorrow he will be going to the doctor and possibly be recommended to see a specialist. I'm very stressed and concerned for him. He is so amazing!

He has many of the symptoms I have read but he does communicate with me enough that I can understand him. He will not listen to anyone else and it extremely attached to me and my youngest son. He will not respond to his name and often seems like he's ignoring you. He will repeat quotes from movies or things other people has said and in the same tone they said it. He always refers to himself by his name... instead of saying "I want" for example. There are several other things that I'm concerned about and he recently turned 4. Nothing has been done until now so I'm worried something should have been done sooner.

I love him so much and many people don't understand him but the ones that do just think he's an artistic/eccestric little boy, somewhat of a dreamer. I love how he'll pick up his mini guitar and play along to music and sing songs that he has been singing since he was two. I was so surprised that he actually remembered the lyrics to some of them and he loves to sing! He makes me so proud.

My son is fifty now and reasonably content with his life. I am happy about that. His autistic childhood was more challenging for the rest of the family than it was for Tony, but it was an enriching experience for all of us. At the time Tony was diagnosed autism was thought to be caused by maternal rejection, and we were subjected to psychiatric treatment. My story can be read at

http://30145.myauthorsite.com/

Each chapter can be read as a question about materialism {with some pretty funny stuff about Freud}

gjcmommy --

Get him tested. My son just got dx 2 weeks ago and his father is still in denial..I myself am still absorbing all of the information! Look into some of the signs and then start with a developmental and behavioral pedi and see what happends. Good luck!

[QUOTE=B Vandegrift]

[/QUOTE]

You sound so tolerant and open minded. I read a little of your book and I like it. I am 51 and far happier with my life than my parents are with it. I am sure it was hard for them then. Don't know why it is still so hard for them. Mom claims I have rejected her from birth and never lets me forget how cold and evil I am.

Was raised in Alaska and taken to professionals in Anchorage, Seattle and Portland to get rid of diagnosis. Have a Aspie son (would have been autistic if diagnosed at birth) and other family oddies. I put a three hour post here and can't find it so will not repeat again. After current events, I hope it is truly missing.

Although I am extremely angry at me right now, I like me how I am and do not want to be NT. I look at life as a movie where I direct, act, write, observe etc. OR school where I keep studying a lesson til I pass (never) I try to make sense of everything even if it is not the typical explanation because I must understand or I stick on the issue.

[QUOTE=Reagan's Dad]

www.aspergerboy.com

This is my son, Reagan.

[/QUOTE]
That was a great website - I really enjoyed reading it - what a beautiful boy
My son is 11 (PDD-NOS and ADHD) and probably would have been diagnosed as Autistic had he been diagnosed earlier. For years I grieved at the fact that I could not hug or kiss my son because it would make him so uncomfortable. I struggled with thoughts about what I did wrong with him that I had gotten right with his older and younger sisters. Although I could not hug and kiss him when I wanted he would stop what he was doing and out of the blue come running in from a different room, jump in my arms and give me a bear hug. Those moments would fuel me for weeks because they were so rare. But I still struggled with not being able to be affectionate with him. Finally at the age of 9 he was diagnosed. I had a reason for his LARGE personal bubble. With some major behavior modification and acceptance on my part I can now hug and kiss my son. I may aim for a cheek and get a mouth full of hair, but I can hug and kiss my son. I can never put into words how wonderful that "small" milestone is for me.How mush you love your son Jacinda - he is lucky to have you

Hi All!!!!

I am new to the boards- was recomended by a friend of mine on myspace and I can say I am so excited to have found you all!!!

Our story goes like this........... My husband is in theArmy and we are living on post. In 1998, we found out we were having a miricale!!! Our son was born and had a very rare disease called Pierre Robin Syndrome. We spent the first 2 months of his life in the hospitals and at 21 days old he had a trach put in so he could breathe.

He continued to grow, smile, make his milestones, making sounds around the trach, etc. At age of 2, he had his shots and then 2 weeks later he had a very horrible surgery done on him. He had to have the mandibular distraction performed- this is something you dont wish for anyone to go through. They broke his jaw, placed metal in there and we had to turn 4 screws inside his mouth for 70 days.

After all was said and done- my child was gone... and new little one moved in.

My husband was deployed on a mission in 2002, and I could see big changes in our son. He started walking on tip toes, rocking back and forth, flapping his hands, not eating anymore, etc. He was very aggressive towards his new brother as well. So while my husband was gone, I had to step in. My son was tested at the TEAACH center and those words came out- he is autistic. My husband gets back from a long deployment and I had to break it to him.

We were fortunate enough to enroll our son at 5, in a wonderful private ABA school here. It did wonders!!!! He was signing over 2,00 signs, smiling, eating real food, potty trained, etc!

he graduated early from there and now unfortunetly he is in school here on post. We are in a battle so to speak over what they are not doing and his saftey so we shall see how it goes!

Michelle Shaver

Welcome to the board!!

Thanks so much!! i love it!!!!!

I have forgotten to add this to my signature- will do it later..lol! But please anyone feel free to add me!!

www.myspace.com/draimanwoman

Mom of Boys,

I understand your issues with the onpost school thing. My son is on post as well. The key is to be very assertive in all IEP meetings and if you are not happy with how things are going you can request a review. My son has always struggled and was finally dx at age 9. I have been pushing for services for him ever since. The school he is in now has been really good though. They have seen that I will push for what Shawn needs and his teachers have been wonderful about communication. Be assertive and communicate a lot with his teachers. You are his greatest advocate.

Best of luck and welcome.

[QUOTE=ernestpr]Do you have a great Autism story or tip you would like to share? We’d love to hear from you!

Your tips and stories will be printed out in either a future newsletter or it may be published in one of our future books with your abbreviated name city and state.

Remember, your story could help someone else!

Click here to tell your story today!

Kindest Regards,

Ernest
Autism-pdd.net
[/QUOTE]

I don't think Ernest meant for stories and tips to be posted in this thread so I am going to lock it and ask everyone to click the link and submit your stories in the manner in which Ernest asked. The link Ernest provides above brings you to this page http://www.autism-pdd.net/autism-stories.html you can submit your stories there. (see an example below) If you would like to introduce yourself and your situation, please see this thread New to the board? Introduce Yourself

Thanks

Tell your Autism Story

Do you have a great Autism story or tip you would like to share? We’d love to hear from you! Your story could be somebody's inspiration!

Please fill in your responses to the questions below. When you complete it press SUBMIT.

Your tips and stories will be printed out in either a future newsletter or in addition may be published in one of our future books with your abbreviated name city and state.

By submitting this form, you agree to allow us to reprint your tips or store in our future publications. All stories should be the original publish work of the author.

In addition you agree to hold ADHDNews.com harmless from and to indemnify them for any and all damages and costs relating to copyright infringement or plagiarism.

Thank you!

Ernest

Have Questions? Please contact us here.

Your story here

1. What is your first name?

2. What is your last name?

3. What is your email address? (We value your privacy and we will not give or sell this information with anyone.)

4. What state or province do you live in?

5. What country do you live in?

6. If you story is chosen for publication would like any other information included like your interests, hobbies, your website etc..

7. Your story here. Tell us about the first time you were diagnosed, choices for treatment, any hardships and what successes and any humor in your experience. Remember your story could help someone else.

Firefly39407.608587963

Its in its own group that is separate from the rest of the threads. So probably the great and honorable Ernest has it set where it won't go anywhere.

Tammy

OH ERNEST!! I will have to write it all down first and then post here, ID love my story of my sons accomplishments put in a book or newsletter.His casemanager and behaviorialist think I could definitly write a book about my sons success and our struggles n how we overcame them.Bt I can say this for him hes my NUM.##1 STAR

AND i WOULD be honored to write a story of his n my last 5 years since hes been here on this earth.ILL get back to you on this subject.CYNDIE deleted
cherylann38656.572337963

What is kilos? I know it is metric but in the U.S. we never did go to the metric system. Even tho I was told that in school. We are still on the same old sytem of pound and ounces. And feet and inches and miles.

Tammy

Tammy,
Akilo is about 2.25 pounds. So I have lost about 3 stone, so far.

Oh cool, lol, thx for replying. I do remember learning metric in school, but you know if you don't use it the brain forgets it, lol.

Tammy

Benjamin is dx PDD-NOS, very high-functioning except when stressed. A few years ago, I decided that Ben needed swimming lessons. I talked to the staff at the pool to make sure that they understood that Benjamin is not a typical 4-year-old. They stsill put him in a group of 6 kids, in water that was too deep, and dunked him. As you can imagine, trauma set in. The next summer, the city recreatioin department offered Adaptive Aquatics with OTs. PTs, and graduate students studying Adaptive P.E. I signed Benjamin up, and the miracles began. Like many kids on the Spectrum, Benjamin didn't like water dribbling down his face, or getting his hair washed, etc. He now, in his 2nd year, throws himself into the water, is learning a real stroke, plays splash with the instructors, and goes under water for quarters. The little dophin is almost ready to give up his swim mask for goggles. Benjamin is almost 7 now, and those that are knowledgeable about the finer points of competitive swimming say that Benjamin has a natural body for the water. Can you imagine? The same kid that couldn't stand any splashing water, growing into a competitive swimmer. movie rights.......?????? celebrating38567.757650463

I would like to post a story, if I find out ds has asd. I won't know until Sept when they have the next opening at the Child Care Center here. I hope I'll have time.

Amber

In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it.

Also Ernest, maybe you could hold a drawing and the winning entry gets one year of free maid service!!!!!

Tammy

tabitha38564.8905092593

I have a 3yr old dd with Autism. She can use 3-5 word phrases to tell us her needs and wants...that is it. There are some days, like last night, she just couldn't tell us so she did everything to show us -

We arrived home from visiting dd's grandparents (live 2 hrs away). She indicated to us by crying when removed from the car how unpleased she was that we were home and not at grandma and grandpa's home. That evening dd wearing only diapers because she just had a bath brings me her white tennis shoes and says "Shoes on?" I put the shoes on. She says "Okay. Lets Go Bye Bye" I say "we can't go bye bye." I don't say NO because she gets overly upset over the word (we think it is because she thinks NO means No forever) She gives a little whine and walks off to the bedroom. Half an hour later, she returns w/ a shirt and skirt. I help her get dressed and she runs to the door to try to open telling me "Go, Bye Bye?" I just ignored her in order to avoid a meltdown. Dd goes back into the bedroom again, grabs her Dora Backpack and fills it w/ all her fav Dora figurines that NO one is allowed to touch. These are her most cherished possessions. She runs to the door "to go Bye Bye" carrying her most cherished possessions...as if she is going for a long trip (like we did thispast weekend). I finally tell her that we are not going back to her grandparents. She gets upset and goes to the back of the room.

About 20-30 mins later, dd comes back butt naked wearing only her white tennis shoes (because she doesn't know how to take them off yet) and hands me her bathing suit. I put on pull ups (but called them swimmers) and her bathing suit. She indicated she wanted me to remove her shoes...so I did. She looks at me in the sweetest face and says, "Want to go swimming?" She runs to the door.

I walked to the bedroom to see where her clothes were. Next to the dirty clothes hamper, were her clothes, diaper and backpack. She must have saw the bathing suit and thought...I want to go swimming right now. And that was exactly what she did...undressed on the spot.

The greatest thing is that my dd almost used a complete sentence to get her point across and I could actually see her thought process in trying to communicate what she wanted. All of this occurred at 8-9 in the evening. Anyway, moments like those makes me so proud of her and how far she has come from being practically non-verbal and non-responsive (most of the time) 8 mos ago. She has come such a long way in such a short time...I am so grateful.

My son wanted to be alone in his room to play thru his favorite movie using his handmade action paper figures - and his siblings or cousins interrupted him to which he'd yell, "get out of here!"

well a salesman had tried stepped up to our doorstep which is just outside my son's window and it was open. At the same time the doorbell rang, someone opened my son's door to which he yelled in a gutteral voice, "GET OUT OF HERE!!!!!" and the salesman left before I answer the door. lol

My son came in handy that day! :)

I coouldn't figure out how to send you my story without rewriting the whole thing. It's hard for me to find the same emotional impetus that let me write it before. The energy is not there. You saaid that I could PM or email it to you.celebrating38567.7615740741Hello everyone,

My name is Robin and I have two very beautiful boyz with special needs. My oldest is Jeffery Jr. (Autistic 14 year old), my youngest is Holland (ADHD, 8 years old). I just registered today and am happy to be a part of this great forum. I've been reading the stories amd replies from the past couple of weeks. So many emotions in your stories, some I feel like I'm reading about myself and others I know are having a harder time with things like IEPs, doctor appointments etc., I am sure I will be learning more from each of you and may be able to share things I've learned along the way.

I'm happy

to be here and look forward to the e-mails.

Here's a great big hug

for the parents and siblings out there who are just learning that their child or sibling is in the puzzling spectrum of Autism. You will never be alone in this.

God Bless!

A is for autism. A is for Anna. My daughter Anna has high functioning autism. Or dose she? That seems to be the problem with this diagnosis. A.K.A, PDD-NOS. She also has mild Cerebral Palsy (CP). I am not sure how, why, or even ‘if’. I am not sure what the future holds. I have now. This is my now.

Anna was born October 2001. The tests they do at birth discovered she wasn't making the thyroid hormone. Two weeks after her birth we began giving her synthroid and were told as long as she took this pill everyday she would be fine. Each and every time she would get her shots she would get very high fevers, vomit and have diarrhea. That is all I will say about that.

As a baby she didn't like to be held by anyone else. I was blamed for that. She would stay interested in her mobile for hours, entertained by lights and sounds and nothing else. We thought she had a hearing problem. We spent a lot of money to learn, she didn't. We thought she would learn speech. We waited. She didn't. I voiced my concerns to her doctor only to be told it was because I let her suck on a pacifier and that was why she wasn't talking, a pacifier that she refused with tantrums to give up. Oh, we could have taken it from her but the puddle of a child that was left behind was too big to ignore. She used it as a security thing, along with rubbing our faces constantly. When she was turning three I told her doctors that I felt her language stalled out and thought she needed to be evaluated.

Alas, we did, and at three years of age we were told what we already knew.

Getting her into the special preschool program became a rollercoaster ride I never, ever, want to ride again. They needed to do their own evaluations and test. Once they were done, she qualified and started a program that just missed the mark. They didn't have the funding, the teachers, or the tools to do ABA or any other specific programs for autism. They had a mix of children, with mixed diagnosis from most severe to the less severe.

Autism or not? I battle with that question every, single, day. The school system fails these children. There is not a program for the summer to take over when the school year ends. This summer I have had many ups and downs. Now, she is almost four years old. Though her speech did come, her thoughts are so out there most of time. I am not able to have too many back and forth conversations. She is nowhere near potty training. One night I had a bit too many beers, I had a hard time keeping my eyes focused on things. I thought “This is exactly, exactly what Anna does!” I had an epiphany? Is that the word? I realized that her mind was clouded by some kind of force I had no control over. Under that cloud, under that ugly, black, thick haze, exist a mind not belonging to autism, or PDD or any other diagnosis. That mind is hers and I will spend my whole life in awe of it.----------Mary

My son has an unusual way of picking up language from videos, etc. but then using it at the appropriate times. Eventually he will change the words and the tone and it will become part of "normal" language. But it is so odd when he'd come out with perfect phrases at the perfect time!

In preschool the school thought he had no language at all and thought I was in denial when I told them he really could communicate. One day the phone was ringing off the hook in the main office and no one was answering. With Paul's hyperacute hearing it probably was unbearable--so he jumped up and went tearing through the school disrupting all 8 classes yelling "IIIIII'll get iiiit" headed straight for the phone. My Paul!! Denial my a**!! Go Paul Go!

Hi I am a mom with an autisc 2year old son I found out two weeks ago \

Tj has really never been "right". Having a twin sister makes you notice differences rather quickly. After 15 months of compl;aining his ped. finally sent us for evaluation from Early intervention. He was forst diagnosised with behavior problems and sensory integration. He started therapy for speech- he only said about 8 words at 2, ot, dt, and saw a psychologist. The psycologist didn't want to come out and say autism but hinted around. We finally had enough of her games and switched to a different psycologist and got a diagnosis og moderate to severe autism with severe sensory integration. Even though I knew it in my heart that he was autistic, the diagnosis devastated me. TJ has made great progress in EI after adjusting his therapist around a few times. He now has a vocabulary of over 100 words. He is starting to say sentences that people other than my oldest daughter and I can understand. He in now 3 and starting preschool this month. He has gone from being lost and isolated to actually initiaing play with his sisters and therapist. After starting him on Tegrtol last month he has made hugh leaps on progress. Before meds he could not stay focused for longer that a few moments. Now I can actually read him a bedtime story and he can listen as long as it is a short one. I really dont know where we would be if not for EI. HOw can you thank someone for "finding" my little boy? He is changing daily and never seases to amaze me. Everyday is a challenge but I really dont think I would change it for the world. TJ has forces us to look at things differently and thank God everyday for his blessings. He has made me a better person. I wouldn't trade jom for the world, he will always be my little man, quirks or not he is a keeper!

KAthy

ERNEST thanks for the opportunity to tell my story. It is so nice to tell someone who understands and not questioning my every move.

My little red head is a wonderfull little boy When I heard that he is autisc my heart brokr I was asking why my baby It still bothers me But I love him alot I hope he will be able to talk soon I am still waiting to hear mama My little boy is not eating foods that he is supposed to eat he only eat soft foods

Hollie
Hollie,

I know this is a tough time for you, but stay strong. Ask your doctor about support groups in your area you could join and please continue to read the notes in forum--you will get a lot of support here.

God knows what he is doing--he gave you your little red head because he knew
you would be able to handle the autism, you have one of god's special little angels just like the rest of us.

God bless you, I'll be praying for you

This is my first time on a chat room with other poeple dealing with the same things.I have two children with Autism(PDD- NOS)My oldest child is 13yrs he is very sweet and quiet at some times .My question is that he always wants to stay around grownup. He tells me he don't know how to make friends. Are they any groups that can help me with him. help him.

[QUOTE=tabitha] In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it. [/QUOTE]

Here is Ernest's starting post about this thread and the link for the tips and stories

will hafta write mine down on paper as well.

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