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sandyt
03-01-2004, 04:24 PM
Hi, I am new to this healthboard. We have been told that my 3 year old son has autism-like characteristics (speech delay, socialization problems...). Does anyone have any info (resources, support info, words of wisdom) for me? I am feeling overwhelmed by all of this and would appreciate talking to someone "who has been there". Thanks.

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memehegan
03-04-2004, 12:23 AM
Hi Sandy, well this is a good place to start! Lots of supportive parents who have been there. Where do you live- ie state country- it will be easier to locate someone who knows what resources are available in your area. Getting a diagnosis is a great start so your son can get the help he needs. You can also page through the archieves here-lots of amazing stories and suggestions that worked for other families. -meme

sandyt
03-04-2004, 11:05 AM
Hi Sandy, well this is a good place to start! Lots of supportive parents who have been there. Where do you live- ie state country- it will be easier to locate someone who knows what resources are available in your area. Getting a diagnosis is a great start so your son can get the help he needs. You can also page through the archieves here-lots of amazing stories and suggestions that worked for other families. -meme
I live in Pennsylvania (Montgomery County). We are going to a pediatric neurologist today and a psychologist has given a tentative diagnosis of High-Functioning Autism. Where should I go from here?

shue
03-04-2004, 01:08 PM
An ASD diagnosis and isolation seem like natural companions. The behavior that goes with ASD makes social outings and relationships very difficult a lot of the time. In our experience, even family and dear friends seem to be at a loss with how to help, if they can even accept it at all.
For me, reading and talking and then more reading and talking has been the only relief I've found. That and lots of prayer.
I reccomend these books as a starting place:
Helping Children with Autism Learn, by Bryna Siegel
Let Me Hear Your Voice, by Catherine Maurice
Thinking in Pictures, by Temple Grandin

Good luck and God bless ya'll.

sandyt
03-04-2004, 10:33 PM
Thank you for recommending these books. They all look like they will be helpful and i am going out tomorrow to find them.

memehegan
03-04-2004, 11:09 PM
Temple's book helped me to understand that ASD is cultural in nature and helped me to respect and accept my son's uniqueness and gifted brilliance. Three was an especially rough age because he was alway on the move- perpetual motion- he is also diagnosised ADHD- and my goal for him -ages 3-7 was simply to keep him alive- I had to nail windows closed- dress him in bright neon colors- lost him countless times- he tried to open batteries and 'pour the energy' into his lego constructions, at age 4 after watching Bill Nye- he burned salt and sugar packets on a hot electric burner I had just turned off, at age 7 tasted the end of a plugged in ac adapter to see what energy tasted like- I could go on and on.. but we made it- the whole time I understood that it was because he had this advanced genius IQ coupled with an emotional delay that made it impossible for him to percieve danger. His thinking is very rubiks cube- anything that is once learned is almost impossible to unlearn. We have been very fortunate that he has responded well to the gfcf diet as well as other diet restrictions. He is able to attend public middle school and actually made the honor roll with a combination of mainstreaming with an aide and special ed. He has a severe writing disability and through out grade school had severe pragmatic language delays which were impossible to get diagnosised properly I was told because he was already so old. That is one piece of advice I would give is to get a pragmatic language eval now - it means how he functionally uses his language- my son was so traumatized and I feel actually abused by our school system because they failed to recognize his aspbergbers and language and writting delays. He was perpetually a tazmanian devil under the stress of expectations he couldnt possible achieve despite his genius. He could tell you scientifically why it thunders and lightenings but regressed into and infantile states or tazmanian states if startled, hurt, scared, sick, hungry or asked to write or speak on stage or in large groups- he was unable to use his language to meet his basic needs- if you even asked him about his feelings it was like a light switch -he lost bladder control and entered instant terrible twos- along with all the infantile noises. And again if you read to him- instant light switch to a child who appeared atleast 4 years advanced. once I understood that his behaviors were not unpredictable and were a form of communication -it became much easier- we developed bond and a trust that I would strive to understand, respect and believe him and the behaviors became less and less pronounced. Convincing the school officials they were causing the behaviors was another story. He had severe reading and writing delays- and every night I read him age appropriate books for hours on end- he was like a sponge and absorbed everything- and I would beg or borrow anything childrens literature I could get my hands on. The school had some redicoulus policy about not letting children take school books home- and in the special ed classed they were using discarded books from the 50's and 60's while my other child studied from books printed in the late 90's and 2000's! Basically I home schooled him- at nights and on weekends- we took as much as we could outdoors- I became a teacher of all trades. If I didnt have to work I woundnt have waisted his time in school. Now he has an absolutely incredible teacher- he has advanced almost 4 years in his delayed areas in 6 months . He was functionally reading at 1st grade and writing below kindergarten though verbally he learned at an advanced age. -Tell us more about your son. -meme

sandyt
03-10-2004, 04:38 PM
Meme,

I haven't had a chance to get the books yet but let me tell you about Michael. He is 3 years 5 months old and was diagnosed last week. We knew he had a speech delay at age 2 but several people in my family have a history of talking late (including me). We had him evaluated but didn't continue with speech therapy because they frustrated him too much. When he started school in June of 2003, they started picking up on things that didn't seem quite right (didn't seem to socialize, talked to himself alot, repeated phrases from videos, tantrums). "Something just didn't seem right". We noticed these things at home too. So we started with a psychologist who gave us hints for the tantrums but since Michael is very lovable, makes good eye contact with us, loves being touched, gives hugs to everyone in his family, and is speaking in 3-4 word sentences, he didn't think it was autism. When things persisted, he went to observe Michael in school and that is when he was disturbed by Michael's lack of social skills and he diagnosed High-Functioning Autism. Last week, we went to a neurologist who confirmed the diagnosis based on her observations, our reports of daily life, letters by the psychologist and the speech therapist. She recommends we go to a Developmental Pediatrician. We are having an EEG tomorrow to rule out seizures as a cause of Michael "spacing out" at times. He doesn't have any behavior problems (other than the occassional tantrum now which are improved with a better sleep/nap schedule). He still is not interested in getting toilet trained so that might become a problem soon.

So that is where we are now. I am looking into support groups to help me and my husband. I have gotten in touch with the Parent-to-Parent group and they have someone they have matched me with. Any other suggestions you might have for me would be appreciated. Thanks. - Sandy

Janylaw
03-10-2004, 05:13 PM
I would suggest finding your state Autism Society first. From there you should be able to find your local support organizations like FEAT (Families for Effective Autism Treatment.) Also check with your local universities to see if there is an autism center there in their Behavioral/Mental Health departments, or possibly Early Childhood Development. Check with the hospitals for any Autism 101 classes, conferences on autism or special ed. What you need is access to other parents with children in your child's age bracket. That's where you will get the most valuable info. Note, I would be careful with the use of the words 'high functioning'. When you are trying to get services, either from the state or schools, you should use the word 'autism' alone. You want your child to get the most services available and they are prioritized for the children with greatest need. If the word 'autism' still makes you uncomfortable, then the added help should make you feel better. The state and schools could use the words 'high functioning' to exempt your child from services. If you are not getting any help from the state, then contact the Division of Developmental Disabilities.

sandyt
03-11-2004, 10:30 PM
Janylaw, thank you for you comments. I did not know that using the term 'high-functioning' could possibly be used against him when getting services.





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