Tell us your autism story | Autism PDD
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
Benjamin is dx PDD-NOS, very high-functioning except when stressed. A few years ago, I decided that Ben needed swimming lessons. I talked to the staff at the pool to make sure that they understood that Benjamin is not a typical 4-year-old. They stsill put him in a group of 6 kids, in water that was too deep, and dunked him. As you can imagine, trauma set in. The next summer, the city recreatioin department offered Adaptive Aquatics with OTs. PTs, and graduate students studying Adaptive P.E. I signed Benjamin up, and the miracles began. Like many kids on the Spectrum, Benjamin didn't like water dribbling down his face, or getting his hair washed, etc. He now, in his 2nd year, throws himself into the water, is learning a real stroke, plays splash with the instructors, and goes under water for quarters. The little dophin is almost ready to give up his swim mask for goggles. Benjamin is almost 7 now, and those that are knowledgeable about the finer points of competitive swimming say that Benjamin has a natural body for the water. Can you imagine? The same kid that couldn't stand any splashing water, growing into a competitive swimmer. movie rights.......??????
I would like to post a story, if I find out ds has asd. I won't know until Sept when they have the next opening at the Child Care Center here. I hope I'll have time.
Amber
In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it.
Also Ernest, maybe you could hold a drawing and the winning entry gets one year of free maid service!!!!!
Tammy
What is kilos? I know it is metric but in the U.S. we never did go to the metric system. Even tho I was told that in school. We are still on the same old sytem of pound and ounces. And feet and inches and miles.
Tammy
Tammy,Akilo is about 2.25 pounds. So I have lost about 3 stone, so far.
Oh cool, lol, thx for replying. I do remember learning metric in school, but you know if you don't use it the brain forgets it, lol.
Tammy
OH ERNEST!! I will have to write it all down first and then post here, ID love my story of my sons accomplishments put in a book or newsletter.His casemanager and behaviorialist think I could definitly write a book about my sons success and our struggles n how we overcame them.Bt I can say this for him hes my NUM.##1 STARTammy
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. JanetI coouldn't figure out how to send you my story without rewriting the whole thing. It's hard for me to find the same emotional impetus that let me write it before. The energy is not there. You saaid that I could PM or email it to you.My name is Robin and I have two very beautiful boyz with special needs. My oldest is Jeffery Jr. (Autistic 14 year old), my youngest is Holland (ADHD, 8 years old). I just registered today and am happy to be a part of this great forum. I've been reading the stories amd replies from the past couple of weeks. So many emotions in your stories, some I feel like I'm reading about myself and others I know are having a harder time with things like IEPs, doctor appointments etc., I am sure I will be learning more from each of you and may be able to share things I've learned along the way.
I'm happy
to be here and look forward to the e-mails.Here's a great big hug
for the
parents and siblings out there who are just learning that their child
or sibling is in the puzzling spectrum of Autism. You will never
be alone in this.God Bless!
My son wanted to be alone in his room to play thru his favorite movie using his handmade action paper figures - and his siblings or cousins interrupted him to which he'd yell, "get out of here!"
well a salesman had tried stepped up to our doorstep which is just outside my son's window and it was open. At the same time the doorbell rang, someone opened my son's door to which he yelled in a gutteral voice, "GET OUT OF HERE!!!!!" and the salesman left before I answer the door. lol
My son came in handy that day! :)
I have a 3yr old dd with Autism. She can use 3-5 word phrases to tell us her needs and wants...that is it. There are some days, like last night, she just couldn't tell us so she did everything to show us -
We arrived home from visiting dd's grandparents (live 2 hrs away). She indicated to us by crying when removed from the car how unpleased she was that we were home and not at grandma and grandpa's home. That evening dd wearing only diapers because she just had a bath brings me her white tennis shoes and says "Shoes on?" I put the shoes on. She says "Okay. Lets Go Bye Bye" I say "we can't go bye bye." I don't say NO because she gets overly upset over the word (we think it is because she thinks NO means No forever) She gives a little whine and walks off to the bedroom. Half an hour later, she returns w/ a shirt and skirt. I help her get dressed and she runs to the door to try to open telling me "Go, Bye Bye?" I just ignored her in order to avoid a meltdown. Dd goes back into the bedroom again, grabs her Dora Backpack and fills it w/ all her fav Dora figurines that NO one is allowed to touch. These are her most cherished possessions. She runs to the door "to go Bye Bye" carrying her most cherished possessions...as if she is going for a long trip (like we did thispast weekend). I finally tell her that we are not going back to her grandparents. She gets upset and goes to the back of the room.
About 20-30 mins later, dd comes back butt naked wearing only her white tennis shoes (because she doesn't know how to take them off yet) and hands me her bathing suit. I put on pull ups (but called them swimmers) and her bathing suit. She indicated she wanted me to remove her shoes...so I did. She looks at me in the sweetest face and says, "Want to go swimming?" She runs to the door.
I walked to the bedroom to see where her clothes were. Next to the dirty clothes hamper, were her clothes, diaper and backpack. She must have saw the bathing suit and thought...I want to go swimming right now. And that was exactly what she did...undressed on the spot.
The greatest thing is that my dd almost used a complete sentence to get her point across and I could actually see her thought process in trying to communicate what she wanted. All of this occurred at 8-9 in the evening. Anyway, moments like those makes me so proud of her and how far she has come from being practically non-verbal and non-responsive (most of the time) 8 mos ago. She has come such a long way in such a short time...I am so grateful.
This is my first time on a chat room with other poeple dealing with the same things.I have two children with Autism(PDD- NOS)My oldest child is 13yrs he is very sweet and quiet at some times .My question is that he always wants to stay around grownup. He tells me he don't know how to make friends. Are they any groups that can help me with him. help him.
[QUOTE=tabitha] In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it. [/QUOTE]
Here is Ernest's starting post about this thread and the link for the tips and stories
[QUOTE=ernestpr] Do you have a great Autism story or tip you would like to share? We’d love to hear from you!
Your tips and stories will be printed out in either a future newsletter or it may be published in one of our future books with your abbreviated name city and state.
Remember, your story could help someone else!
Click here to tell your story today!
Kindest Regards,
Ernest
Autism-pdd.net
[/QUOTE]
A is for autism. A is for Anna. My daughter Anna has high functioning autism. Or dose she? That seems to be the problem with this diagnosis. A.K.A, PDD-NOS. She also has mild Cerebral Palsy (CP). I am not sure how, why, or even ‘if’. I am not sure what the future holds. I have now. This is my now.
Anna was born October 2001. The tests they do at birth discovered she wasn't making the thyroid hormone. Two weeks after her birth we began giving her synthroid and were told as long as she took this pill everyday she would be fine. Each and every time she would get her shots she would get very high fevers, vomit and have diarrhea. That is all I will say about that.
As a baby she didn't like to be held by anyone else. I was blamed for that. She would stay interested in her mobile for hours, entertained by lights and sounds and nothing else. We thought she had a hearing problem. We spent a lot of money to learn, she didn't. We thought she would learn speech. We waited. She didn't. I voiced my concerns to her doctor only to be told it was because I let her suck on a pacifier and that was why she wasn't talking, a pacifier that she refused with tantrums to give up. Oh, we could have taken it from her but the puddle of a child that was left behind was too big to ignore. She used it as a security thing, along with rubbing our faces constantly. When she was turning three I told her doctors that I felt her language stalled out and thought she needed to be evaluated.
Alas, we did, and at three years of age we were told what we already knew.
Getting her into the special preschool program became a rollercoaster ride I never, ever, want to ride again. They needed to do their own evaluations and test. Once they were done, she qualified and started a program that just missed the mark. They didn't have the funding, the teachers, or the tools to do
Autism or not? I battle with that question every, single, day. The school system fails these children. There is not a program for the summer to take over when the school year ends. This summer I have had many ups and downs. Now, she is almost four years old. Though her speech did come, her thoughts are so out there most of time. I am not able to have too many back and forth conversations. She is nowhere near potty training. One night I had a bit too many beers, I had a hard time keeping my eyes focused on things. I thought “This is exactly, exactly what Anna does!” I had an epiphany? Is that the word? I realized that her mind was clouded by some kind of force I had no control over. Under that cloud, under that ugly, black, thick haze, exist a mind not belonging to autism, or PDD or any other diagnosis. That mind is hers and I will spend my whole life in awe of it.----------Mary
My son has an unusual way of picking up language from videos, etc. but then using it at the appropriate times. Eventually he will change the words and the tone and it will become part of "normal" language. But it is so odd when he'd come out with perfect phrases at the perfect time!
In preschool the school thought he had no language at all and thought I was in denial when I told them he really could communicate. One day the phone was ringing off the hook in the main office and no one was answering. With Paul's hyperacute hearing it probably was unbearable--so he jumped up and went tearing through the school disrupting all 8 classes yelling "IIIIII'll get iiiit" headed straight for the phone. My Paul!! Denial my a**!! Go Paul Go!
Hollie,
I know this is a tough time for you, but stay strong. Ask your doctor about support groups in your area you could join and please continue to read the notes in forum--you will get a lot of support here.
God knows what he is doing--he gave you your little red head because he knew
you would be able to handle the autism, you have one of god's special little angels just like the rest of us.
God bless you, I'll be praying for you
will hafta write mine down on paper as well.
KAthy
ERNEST thanks for the opportunity to tell my story. It is so nice to tell someone who understands and not questioning my every move.
My little red head is a wonderfull little boy When I heard that he is autisc my heart brokr I was asking why my baby It still bothers me But I love him alot I hope he will be able to talk soon I am still waiting to hear mama My little boy is not eating foods that he is supposed to eat he only eat soft foods
Hollie
Hi
My sister took my son shopping one day and in the middle of a busy clothes shop he said "Aunty Carol, you give me a filthy dirty disease didn't you?", my sister dead embarressed tried to quieten him and asked "Who on earth told you that ?"
He said "My mammy did, when you used my tooth brush and gave me a cold sore" , later on she took him into the changing room with her to try on a top, whilst taking off her own he said "Aunty Carol, I can see your Boobies" at the top of his voice again my sister winched "And if you turn around I'll be able to see you Foo Foo" he said.
It was the last time my sister took him shopping with her
lol
Dolly Like most people, I was in denial about my son's diagnosis. Everyone kept telling me how my older brother didn't speak until he was in Kindegarten, and he 'turned out OK'. (As older brothers go...are they ever OK
Anywho, when I told Em to his 3 year check up the doc mentioned that he didn't think Em was talking 'enough' for his age. So he recommended us for hearing tests and speach evaluation. The hearing test didn't bother me, because my hubby is partially deaf and wears hearing aids in both ears. So, that was a good thing to me. He passed the hearing exam with flying colors. Then we went to the Speech Pathologists...aka The Dingbat. At this point, I was newly pregnant (about three weeks along) and ready for anything. The Dingbat sat us all in her cramped office, jammed with toys, and tried to 'calmly' talk to my son. I couldn't believe what she WASN'T doing! I wanted to yell at her that he's only 3! And if you put more toys out for him to look at, his head will explode! *yoga breath* Anywhoodles, at the end of her 'evaluation' she said: "Have you evern consider having him tested for Autism?" Squelching my violent reaction towards her already, I just about lept out of my chair to throttle her. But, I went along with it. (More just to get out of her annoying presence.) She said everythign would take about two weeks because she had to fax everything to the School District and 'they would handle things from there'. Cut to FOUR weeks later, I called the Dingbat, and got: "Oh, I'm sorry. I was out of the office for TWO WEEKS. I'll fax it right now."
Boy did I ever. We were able to get him in and evaluated via the School within two weeks. Diagnosis: PDD-NOS. Which, right now, comes to NO surprise to me. Given all of his genetic make-up. (His father is severly ADHD, and I am, ADD, Clinically depressed, and ODD (Opositional Difiant Disorder). Now my biggest fear is my unborn son. For I am already thinking of him as being exactly like his big brother. Or worse! 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=tabitha] In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it. [/QUOTE] Here is Ernest's starting post about this thread and the link for the tips and stories
[QUOTE=ernestpr] Do you have a great Autism story or tip you would like to share? We’d love to hear from you!
Your tips and stories will be printed out in either a future newsletter or it may be published in one of our future books with your abbreviated name city and state.
Remember, your story could help someone else!
Click here to tell your story today!
Kindest Regards,
Ernest
Autism-pdd.net
[/QUOTE]
[QUOTE=tabitha] In Ernest's first post in this thread there is a link in there. I think you are suppose to click on that link and fill out the form and submit it. [/QUOTE]
Here is Ernest's starting post about this thread and the link for the tips and stories
[QUOTE=ernestpr] Do you have a great Autism story or tip you would like to share? We’d love to hear from you!
Your tips and stories will be printed out in either a future newsletter or it may be published in one of our future books with your abbreviated name city and state.
Remember, your story could help someone else!
Click here to tell your story today!
Kindest Regards,
Ernest
Autism-pdd.net
[/QUOTE]
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
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 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 0 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!
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.
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. My son, Paul, is now 16-years-old. His original diagnosis at the age of 5 was ADHD. From there we moved to Childhood Schizophrenia. After living with that devastating diagnosis for a few years, I said to my son's Psychiatrist, I think he may be autistic not schizophrenic. Guess what this Doctor said to me, "That's just wishful thinking." Has anyone on this board every wished their children were autistic? As you can imagine, we did not go back to see this quack. We got a second opinion from a renowned child psychiatrist who insisted he had PDD. We have been through it all.
HI 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
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 <FONT face="Arial, Helvetica, sans-serif"
[QUOTE=BethAnn76]
size=2>... His to date diagnosises are: Asthma, ASD, Sensory Integration
Disorder, Developmental Language Disorder, Hypotonia, Auditory
Processing Disorder, Sleep Disorder, Reflux, and they will be ruling out
Muscular Dystrophy soon as he is too young for the testing. He currently
attends a developmental preschool four days a week where they provide
PT, OT and SLP services. He also still sees his OT and SLP at the CTU
where we got started. The good news is that they have recently ruled out
seizure disorder. He is doing very, very well in his school and the
neurologist says that he has made more progress than any ASD child he
has seen. Cole has the ability to speak and be understood 100%. His
articulation has issues but he speaks in full sentences. Before he was
diagnosed he wouldn't respond to ANY verbal cues, now he can
understand anything a normal 2-3 year old can. He has excellent
cognitive skills including the ability to recognize shapes and colors, as
well as numbers and letters in and out of sequence. He LOVES Spider-
man. He can access the internet and find his Nickjr.com website by
himself, and is currently playing VSmile game aged 6-8, he is three
and a half. He has finally made friends. He comes off the bus and gets
excited to tell me about his teachers and kids in his class. He recognizes
people and remembers them from other places. In October my mother in
law flew in from Florida to help us out while my dh and I had surgery.
Today he wanted to see her told me to fly her on the 'hariplane' to see
Cole-man. He still isn't potty trained and I would love some insight on
how to do that one. We have Spider-man underoos and pull ups. But he
just stands in front of the toilet and yells GO PEE PEE c'mon.... dooooo it!
He has is idiocasyncracies but he is my "amazing Cole-man" and I
can't believe what he has overcome so far.
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[/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. 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 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. Hi, I am a single mother of 2 teenage sons and my little girl Leila. leilawas
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....
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.
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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 kn