Advice with Asperger's Syndrome

Updated on July 28, 2008
A.M. asks from Livermore, CA
5 answers

My son Dominic has been having some difficulties at school and home and I took him for an evaluation through our HMO Kaiser for ADD or OCD and the Child Psychiatrist told me she is certain he has Asperger's syndrome. I have had a phone interview with a Autism Spectrum Testing Site where they will do a full evaluation--I had a phone interview with them yesterday and they said with looking at reports from his physician they are certain it is Asperger's. Not only am I waiting for this appointment but I am also on a 8 month waitlist for the East Bay testing center and the Board of Educaiton in my city will be doing their own testing and IEP to see if he qualifies for accomodations or services. Just this morning when I took him to school (which is a summerschool on the elementary school campus with Kinders-5th grade)and the director told me they are having problems w/Dominic that he is hitting other kids, not listening, not making eye contact and having problems cleaning up after himself. They said they are seeing more and more social issues with him. I explained that he is being evaluated for Asperger's and his teacher said that it makes sence and asked how should they accomodate him in the meantime. How as a mother do I accomodate him as I have to wait 8 months before I can be qualified for any special services? I feel as a mother I am not doing a good job with him. He is always crying at home, everything is such a difficult task for him, from brushing his teeth to putting on his shoes ( I have to do it for him). He doesn't listen to me, I feel like it is a constant battle with him. The only time he is happy is when he is drawing or creating art crafts. He is a very intelligent, artistic child. His choice of words is not that of a 4/5 year old. However when it comes to doing simple things that are not related to Art or what he likes, I feel like I am at war. Advice is needed.

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H.D.

answers from San Francisco on

As a mother of an Asperger's adult child I can sincerely sympathize! Believe me, you are LUCKY that your child was not born 20 years ago when they knew nothing about Asperger's. It took me fighting with schools and doctors for YEARS before he was finally diagnosed correctly in the 6th grade, by that time he was a sincerely frustrated child.
I frown on the answer your teacher gave, "how can she accomidate him", because she should already KNOW how to accomidate him! There is alot of information out there for teachers and it should be a part of their continuing education (I have a sister and friend who are both teachers, they have had to go through this). My answer to her? When your son starts to act out take him OUT of the situation so he can refocus, give him something creative to do, preferably something that applies to whatever the teacher is trying to show the class. Allow him to have a coosh ball, doodle pad or something else that he can use to concentrate...YES, concentrate. If he has something to focus on of his chosing he can also focus on the teacher. It sounds odd but it works. The rule becomes if you use your ball, pencil, doodle pad to distract OTHER children then it is temporarily removed, and I emphisize temporarily. The teacher is to sign his daily planner daily and send notes on his behavior if he is having issues and you are to do the same back for her. This enables the two of you to be on the same mental page and also keeps a continual record of his progress or issues that he is having...you will need this for his IEP.
On a personal note. Keep a journal. Observe him and other children his age. What seems "odd" to you? How does he interact, or not, with other children? Is he obsessive compulsive (a lot of them are)? Does he complain about stomach aches or excessive gas (gluten sensitivity has been linked to Asperger's)? Go Gluten free for a week and see if it helps is behavior....Get a book on it! There are tons out there now, see which one can guide you the best.
And remember this phrase, it has kept me from grinding my teeth and made me step back far enough to do the right thing for my son...."It is easy to love the lovable, harder to love the unlovable but they BOTH deserve LOVE!" =) Good luck!

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T.M.

answers from San Francisco on

Hello,
I am a former pre-k special education teacher. I stopped teaching when I had my first daughter in August 2006. I am not sure why you are on an 8 month waiting list. When you said "East Bay testing center," did you mean East Bay Regional Center? If so, they will not test because your child is over 3 years old. Once a child turns three and there is a concern, the responsibility to test/evaluate falls on the county or neighborhood school district. Once a parent formally writes that they would like to have their child evaluated for special education services, the timeline starts and they only have a specific amount of days...either 45 or 15 calendar days to respond with a plan. (I can't remember off the top of my head, it is a little late after a long day.) Since you have documentation from your Kaiser doctor, there should be no reason why they wouldn't test. I would be happy to talk over email or the phone about this in more detail if you would like. I feel very strongly about timelines and I feel sometimes school districts not only try to budge on timelines but also put off parents sometimes not make the process clear to parents on purpose. Good luck and please don't hesitate to contact me.

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L.N.

answers from Stockton on

Hi,
Its like going through a maze to find out whats going on and what services your son can receive. There is a fantastic group, www.php.com, its parents helping parents. They are in the San Jose area, but are great and I'm sure can point you in the right direction if they can't help you. I would also take your son for an evaluation yourself. Try UCSF Autsim clinic, or UC Davis the M.I.N.D. institute. You may have to pay upfront, but its worth it to get the ball rolling. Good luck. L.

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D.W.

answers from San Francisco on

A.,
I would not accept waiting for 8 months for your city's Special Education Services to fulfill their obligation. I would figure out whom the head of the Special Education Services is, or the School Superintendent, and go down there personally and insist on a face to face meeting. This isn't the type of situation that can wait 8 months and the laws that protect and provide for children w/ disabilities would frown on this as well.
If I were you, I would figure out who these key people are, and then go to their office and ask/insist on speaking w/ them. Early intervention is crucial, as well as getting an IEP in place, should he qualify. This is a Federal law that schools are required to comply with. Waiting for 8 months for a child in crisis in unacceptable.
You could find out key information by going to your districts education website, and finding the staff listed. It should list phone numbers and address where their office is.
Please let me know if I can help you in any way. My daughter got early intervention here in San Ramon, and I think that was crucial to her success in school and life now. Had I waited, I think it would have been detrimental.
Regards,
D.

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A.L.

answers from San Francisco on

My son was diagnosed about 7 months ago with Asperger's and I understand this can be a very frustrating process. I am just starting out as well. I had my son evaluated privately and am confident in the Dr.'s diagnosis of Aspergers. The school district were were living told me they did not consider him severe enough to receive services. I think their exact quote was "Just because he has Asperger's doesn't mean he needs services." I of course now how very wrong this statement is. Since we were renting we were able to talk to some professionals and find out where to move. We are now in Pleasanton and he is in a wonderful preschool program there 15 hours a week. As far as the Regional center, this has been a very frustrating process. I first referred him first week of December and he was evaluated in February. The Dr. said they don't believe in giving a diagnosis of Asperger's to children his age and they diagnosed him with PDD NOS. This particular evaluator also said if he did have the Asperger's diagnosis he probably wouldn't get services, which is of course extremely frustrating to hear. I continue to call and be told his case is still under review. The additional services he is receiving now we are paying for out of pocket and I hope insurance will reimburse for some. He attends a social skills group at "Happy Talkers" in Dublin and I have been very pleased with that program. I am also paying for behavioral consulting out of pocket from STE consultants. That has been very helpful to me but is costly. This is a service I was told should be covered by the Regional office. My son has now been receiving services four months and I have seen process. I wish you luck because I know how frustrating it can be. Waiting 8 months is ridiculous and I know legally school districts have time limits, there should be something you can do to speed up the process. Good luck.

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