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Friday, June 15, 2012

Reading my life

I just finished a book which came the closest to describing my life with Janey of any autism book I've read. It's a memoir called One of Us, A Family's Life With Autism by Mark Osteen. The boy in the book, Cameron, is autistic, on the lower end of the spectrum. He talks a little, learns a little but very slowly, has mood swings and does and doesn't do so many things like Janey. I cried a lot reading it. He is much more aggressive than Janey, which might be a male/female difference, but in other ways I felt like my own life was being described. I loved the book in that it was in no way about miracle cures, about causes and blame, about one school of thought over the other. It was just a straight story---what life is actually like with a child like Janey or Cameron in the house. The parents loved him more than anything, but many days were almost unbearable. In the end, Cameron goes to a residential school most of the year, and it works fairly well, although it's heartbreaking for the parents. The picture of Cameron I loved best was not one of the ones of him as an adorable little boy, but the one of him at 19, a handsome guy, looking like any other teen, but as I know from the book, still watching his Raffi videos and reciting Max and Ruby. Some people would probably not find this book hopeful, but I did, in that it gave me a vision of a future for Janey. The theme of the book, I felt, was gradual acceptance. They worked hard with Cam, and did all they could for him, and loved him greatly, but it didn't change who he was, and I loved it how much they missed him when their house was empty. It was encouraging too to hear how he did get easier as he got older, and by that I mean as he got to his late teens. A light at the end of the tunnel is still a light if it's far away.

This is the kind of book there needs to be more of, to make people aware of the huge needs that are going to exist in the future. We can all hope and be excited by advances in autism and early intervention, but the truth is, some kids, probably most kids with autism are going to stay autistic, and become adults with autism. They are going to need us, and by us I mean everyone, not just their families. This book hugely illustrates how impossible it is for parents to alone care for a child like Cameron.

It also made me appreciate Janey. Janey's talking, when it does occur, is pretty clear, and she talks a little more than Cameron did in the book. She isn't often aggressive (but in one of those not so fun co-incidences, Tony just got home from getting her at school, where it was reported she was hitting kids today) and for now, she is a little easier than Cam seemed to be in the book. We all compare, as the author mentioned, for better or worse, and as he also talked about, after reading about autistic kids on such a high end of the spectrum that they can almost pass for "normal" and can self-advocate and so on, it's sometimes good to realize that not every child with autism on earth is miles ahead of yours.

I want to thank Mark Osteen for having the courage to write this book, and encourage anyone with an interest in autism to read it.

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