We had a good time last night at the Alpine Golf Fundraiser. It was a nice dinner, at the country club, with a silent auction and all sorts of fundraisers. We came out of it with a lovely photo of Dominic (I will try to get a soft copy soon), a candle he made, some t-shirts, and generally had a nice time visiting with other parents who have kids in similar situations.
We got to meet another mom who’s been part of Alpine for a long time, her boys are teenagers. Both are autistic. She’s got an edge to her that comes from years of battling with doctors, school systems, and insurance companies. Its not entirely pleasant, and its reminiscent of the other long time autism mom we’ve met. It start us wondering – does this journey into advocacy for your child lead to such jaded bitterness?
We want for Dominic the best he can possibly get – and Alpine is hands down the best facility in the state (found out last night two of the kids there are bussed down from Park County, on the school systems dime, 3 hours of driving round trip per day, because of the stellar program) and one of the best in the country – but we don’t really want to be that jaded. I’m really hoping for health insurance coverage so that we don’t have to go to mediation with the schools to pay for it. Health insurance SHOULD pay for it, this is medical therapy for a medical diagnosis. Dominic doesn’t have them – that we’ve caught on eeg (we have suspected absence seizures for a long time) – but almost every child with an autism diagnosis has seizures. Explain to me how proven treatment for a seizure disorder is the schools responsibility to pay for???? Explain to me how an auto-immune, gi related, seizure disorder is categorized as a mental illness in the DSM?
Once again, I’m SO glad we forced the diagnosis of Aphasia. Should insurance pay, its because we didn’t let them slap him in the Autism bucket. If the Health insurance reform passes, there is an amendment on it ending autism insurance discrimination federally. If it doesn’t pass, there’s the Autism Acceleration treatment act, pending as well. One way or another, somethings gotta give. The numbers are now 1 in 100 children with an autism related diagnosis.