Autism…The Bizarro Edition

11Nov07

My daughter was diagnosed with “mild” autism in September ’07 and ever since, I’ve been plunged into some sort of bizarro world. The neurologist who diagnosed her spent all of 10 minutes asking me a bunch of questions from the Denver Developmental Screening Test. Little did he know, I already had my very own copy. After spending this brief 10 minutes and looking over her body for birthmarks (when there are more than 6, the chances of autism are greater) the doctor counted 5 and determined that A is autistic. He said it in an offhand manner as if he was noticing her hair color. I just remember not being able to breathe properly.

After the shock wore off, I rolled up my sleeves and got to work. Of course, I was immediately overwhelmed. There’s a lot of info out there about autism, some of it useful but most of it scary and confusing. We’ve been doing the diet (wheat-free and casein-free) which is a real bitch to accomplish. I feel like some wacky chemist mixing up batches of stuff that hopefully A will eat. She’s not a good eater; she’ll be 2 next month and still eats primarily baby food. We’ve been doing the Omega 3 fish oil in the form of a gel. My mom got me Jenny McCarthy’s book which was a good read about her personal struggles with the system and getting her son the help he needed. I really just needed a book that gave me some kind of game plan for what to do. I also got kind of sick of seeing her face all over the place (Oprah, Larry King, GMA, etc., etc.) I managed to find a DAN doctor who called me back even though she’s about a 90 minute drive away. We’ll see how that visit goes.

Anywhoo, hubby and I enrolled A in the early intervention program through our state. A has 5 hours of therapy a week: 3 hours of ABA, one of occupational and one of speech. Things are definitely improving. There are days when I still feel like screaming. But I know there are mothers out there who have it a helluva lot worse than I do. My daughter gives good eye contact, shows affection, shows a range of emotion, engages socially with others and uses some language to communicate. The therapy and the diet seem to be working; she seems better. I know she’s sick of me shoving flash cards in her face and saying “show mommy what you want.”

These DAN docs don’t take insurance (you might be able to be reimbursed through your insurance company) and they charge about $200-$500 bucks an hour. I’ve already had to borrow some money from my retirement fund (hmmm, cat food, yummy!). Hey, my baby needs this money now. If anybody out there is paying attention, families with autistic kids who are NOT on welfare could use some help. I haven’t even mentioned all the lovely wheat-free, casein-free food that I’m now buying which has tripled our food bill. Or the bill for all of the therapy. Even though it’s through the state, it ain’t free.

Lord knows, I’m tired and the fun has just begun.

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