4.19.2004

Leelo, Autism Stories

Leelo's taken to smacking himself on the head when he gets frustrated. The Therapists are on top of it, but Seymour and I are freaking a bit. Until we reminded ourselves that he tends to go through two week phases with each new annoying stereotypical behavior before he loses them. We freaked out about teeth grinding, shirt-sucking, and screaming when people eat, too, and those behaviors are all gone. I will try to keep my worries simmering on low.

Supervisor Andil was over today as Supervisor M is out of town. Andil is plugged into everything there is to know about autism, and always has stories to share. She is such a wonderful person and an invaluable resource. Although 12 weeks along with her second child, she is somehow managing to work crazy, intense hours while mothering an almost-one year old and battling intense morning sickness. She makes me feel like the lump that I am.

I gave her a copy of Leelo's Stanfford Autism Clinic report, and she was glad to hear that we'd had such a positive experience there. She told us several stories about another local diagnosing clinic whose director cannot be named but whose initials are B.S., and her lack of bedside manner--her in fact outright horrible rudeness to emotionally fragile parents of autistic children. I hope that B.S. bitch burns in hell, or at least sticks to writing her books rather than interacting with clients.

Therapist T came by to meet Andil, and told her about the state of autism care in Israel, where T is from. Basically there is no ABA training available for potential tutors--if you want to get it, you have to come here.

Andil had lots to say about Stateside difficulties in getting ABA therapy, especially in geographically remote or need-based situations. She says there are almost no grants to help out ABA clinics--families have to either wait until their children are three years old and qualify for assistance, or hope that they live somewhere with an excellent regional center/Early Start program.

She also told us that some private ABA clinics refuse to take children who function below a certain level as it fucks up their success rates. If that's not warped I don't know what is. Lots of backstory about Lovaaas and those famous initial 47% recovery rate trials, too, ooh yeah.

The stories ended on an odd coda--for some reason, the not-quite-local town of Holllister has an incredibly high autism rate. And almost no services.

The end of this day finds me very grateful to have our boy, our location, and our resources. Very very grateful. Very very.

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