K, we've been on board with the children's hospital since we started this ride. Supposedly they are the best of the best. problem is, they won't accept his diagnosis of Asperger's from the psychiatric because they do their own testing, and their own testing says he's too social to be an Aspie. In fact, they missed the dyslexia diagnosis (multiple times) and they have only diagnosis'ed him "severe ADHD". And without their buy-in for the additional diagnosis'es, he doesn't qualify for their social skills and behavior programs, and, of course, he's not bad enough to be in-patient, where the only other groups like that are.
And then, there's one other program that brings in a case manager to coordinate services, but there's a waiting list a mile long, and kids with medicaid get priority over kids with private insurance, so even if we've been on the list for 5 years, if any kid jumps on the list that's on medicaid, they are accepted. Needless to say, I'm not banking on that. And really, his docs and county case worker say I do as well as any assigned case mgr would. So I don't feel we're missing anything there, really, except stress off my back.
The doctor we saw in OK was on the board of a private school created especially for Wee's, but there's nothing like that available here unless he gets a record and gets sent to a boys town type program. And then, unless he has to do residential, its a day program that generally takes the place of school. The residential facility is about 3 hours away.
And the doctor was arrested, anyway, so who knows that status of the school he chaired and helped to form...
Linda, I read am article a couple years ago in the Wall Street Journal about parents of kids with special needs. One of the people they interviewed for the article had a son with Autism, and he said that at first, everyone was sympathetic to his situation, but as the years dragged on, his boss started saying "Yeah, i get that your kid has problems, but when will the crisis be over?"
In their article, they said on average, parents of children with long-term special needs lose their job after 7 years. Honestly, I have eeked and squeaked by several times already by the skin on my teeth and am shocked I haven't lost my job yet. I think of you and K...its a very broken system/world. I hope to God someday I can use what I've learned to somehow make it a little better for those to follow. It shouldn't be this hard to support your family.