Autism Thoughts
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I mentioned a few weeks ago that my son (alias: Jackson) met his school’s criteria for Autism Spectrum Disorder. We had the IEP (individualized education program), which went wonderfully. He’ll be in a mainstream kindergarten class next year, but we spent ninety minutes talking about his behaviors and some of the things they’ll put in place to help out. I expect next year to present new challenges, but I’m cautiously hopeful.
One thing I’ve noticed about myself: I can say Jackson is on the Autistic Spectrum. I can say he has Aspergers Syndrome. But I have a really hard time saying he has autism. My brain just rebels at that point. (I edited this paragraph slightly for clarity.)
Part of this is probably the evolving nature of the diagnosis. When I first learned about autism, there was a clearer line between autism and Asperger’s. My sense is that this is changing, moving more toward the broader autistic spectrum diagnosis. Mostly though, it’s just hard for me to accept that label for my son. One of the things I’m working on in my brain…
We’ve looked into getting services to help him over the summer. But of course, autism isn’t covered by our insurance. We’ve been looking into one program that has been highly recommended; ten sessions would be a total of $3000.
Three grand. For ten sessions.
(Editorial aside: to the woman who responded to my thoughts on health care a few months back by saying I was an elitest, lazy deadbeat, please consider this a formal invitation to kiss my ass.)
We’re still looking into options and trying to figure out what he actually needs. It’s not about “Autistic children need _______.” It’s about “Jackson, who happens to be ASD, needs _______.”
One of those needs is to improve his hand-eye coordination and fine motor skills. Building with LEGOs seems like one way to work on that. I’ve also started him on regular LEGO Star Wars video gaming therapy. Now if I could only get him to stop blowing me up…
One final thought. Jackson is very rule-oriented, which I’m told is not uncommon for children with Aspergers. Yesterday, my wife was teaching him to play checkers. He did quite well … and then he got his first king, at which point he announced, “But kings make their own rules!”
Mike L
May 30, 2010 @ 10:10 pm
Maybe a different perspective here, from the point of view of someone north of the border.
My wife and I suspect our youngest son might have Aspergers, or is somewhere on the Autism spectrum. Because we’re all Canadian, his diagnosis and (possible) eventual program with an assistant will pretty much all be covered.
Just because we have health care doesn’t mean we’re entirely better off than you. The wait time at the Children’s Hospital for an appointment is 6 months at least and the wait for a specialist to work with him is between 18 months and 2 years. Best case scenario is that he gets started on a program in about 2 years, but it might be three.
Health Care is a good idea, but like anything run by a government, it isn’t perfect, and I’d happily spend $3000 to get him privately diagnosed and with a specialist now. It would be faster for me, as a man, to pass a psych evaluation and get breast implants than it would be to get my son the help he needs, and this by probably a full year (cosmetic surgery is not covered by health care, so you just need to find someone at a specialized clinic willing to take your money for surgery and convince them that you aren’t crazy. Wait times are negligible.)
At any rate, and in an attempt not to end on a complete downer; keep strong, and I wish you and your family all the best in what will probably be a difficult and stressful ride.
Candie S
May 30, 2010 @ 10:52 pm
Have you looked into services that your local Developmental Disabilities Services Office (DDSO) or their affiliated non-profits may have available, if there is one? I work for a non-profit in Western New York that provides services for developmentally disabled people, and there are several others in the area, and most of our individuals are covered by Medicaid once they are found eligible for services by the DDSO.
Of course, my experience has been on the administrative side, not the parent/individual side so I don’t know exactly how much support they provide, but it might be worth looking into if you haven’t already. Just keep in mind that eligibility determination tends to be a longer process, 3 months is our average turn around for people who have all the required testing/documents together…
Derek
May 31, 2010 @ 6:53 pm
Our now 7yr old was diagnosed about a year and a half ago. Here in New Jersey the IEP varies a lot depending on which school you are at, since services are town by town, not county or state wide. It was a real pain, but we managed to talk them into a one-on-one aide (critical to help him focus and stay on task), occupational therapy for hand-eye coordination and speech therapy. The earlier these things are implemented the better the long-term outlook. Also, a clear, consistent set routine at home and school has helped a lot.
Jim C. Hines
June 1, 2010 @ 9:16 am
Medicaid isn’t an option, but checking into nonprofits is a good idea. Thanks.
Jim C. Hines
June 1, 2010 @ 9:17 am
The one thing I’ve been hearing again and again is that the parents really have to work to advocate for their kids, both in the schools and elsewhere.
Easter Seals and Autism » Blog Archive » King of the house: happy Father’s Day!
June 18, 2010 @ 10:52 am
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