Saturday, January 17, 2009

A simple update

After 14 days at home over the holidays, I can now say I understand why parents of adult children with autism feel so desperate for services once their child ages out of the school system.  C doesn't really know what to do with himself, or know how to structure his day if he does not have something external imposed upon him. After a few days, he becomes very perseverative and obsessive and weird. It worries me about what we will be able to provide when he's older.  And who can continue to afford all this?

Here's what he's on right now--
clonidine (for sleep), pentasa (ulcerative colitis), benefiber (keep it movin'), magnesium malate (get rid of the aluminum), zinc, probiotics, digestive enzymes, GABA (an amino acid, promotes calm), BH4, cod liver oil, Brainchild minerals (various minerals to help detox his body), grapefruit seed extract (anti yeast), singulair, zyrtec, and I'm sure I'm forgetting something.  We have it all in a spreadsheet.  We've recently stopped Fluconazol, an anti fungal, because it is black boxed and he can't be on it forever.

As for me, I've started helping a friend work toward an insurance mandate for coverage of applied behavioral analysis.  I enjoy the legislative work; it's such a challenge and I enjoy feeling like we're going to make a difference for hundreds of families.  Maybe my experiences can actually help other people.  I'll be happy to make those insurance companies pay for legitimate therapies for our kids.

Conor is doing really well on his new biomedical regimen. He's sleeping regularly, understands more and more of what we're saying to him, and he's alot calmer.  He still has his moments, though, and it is often difficult to give him what he wants without a lot of effort. And the screaming.  It's like a horror movie around here.  We ask him to go to the basement and scream because 1) we know where he is (we can still hear him) but 2) it's muted.

We continue to thrive without the therapists each afternoon, and school is going well. Oops, he's getting restless; must be tiring of his computer game.  Time for the Wii?!

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