Tell us your autism story
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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. 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!
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 [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! 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 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 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.
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 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] 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. [/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!
That awesome! He has really overcome a LOT bless his little heart! [QUOTE=BethAnn76] <FONT face="Arial, Helvetica, sans-serif"
<FONT face=Arial size=2> <FONT face=Arial size=2> [/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. 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 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 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. 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. 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. 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. 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.
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! AI 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. 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] 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 [/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
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!
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! 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 the |
