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Friday, July 23, 2010

Never know when it will hit you

Today was mostly a very nice day. Janey and I went to the library, where she played for a bit in the children's room while I looked for books for her (and only freaked out when I showed her a book by the Maisy author that wasn't a Maisy book---that was a bit much for her, but I took it out secretly anyway), and then we went to Chipolte with Freddy, and Janey was an angel there, after it being such a horrible scene a few weeks ago---she was as happy as could be, and ate well. She was even happy when I went to the Savers after that to get Freddy some school clothes. She has been a sweetie.

So what hit me? I started reading a book called Not My Boy! by Rodney Peete, an NFL star whose son was diagnosed with autism. It was about how he came to terms with that. There is of course all the awful early scenes with people saying his son is unteachable and low-functioning autistic and it's all so upsetting. Then gradually as I was reading, I realized that his son, who was 4 in the part of the book I got to, was FAR ahead of Janey---answering questions, writing letters, reading some, explaining what a fire engine was used for in one pivotal scene, etc. And I thought---and they think HE is low functioning? And I started thinking about how little Janey really can do---she's about as far from answering a question like how a fire truck is used as she is from flying to the moon, if she ever wrote a letter, it would be a day of all days...and I got thinking about her, and my friend's daughter, and all the other kids out there with autism who don't even seem to fit into the autism world anymore---the non-success stories, the kids who have "got it bad". And yes, I'm not supposed to think like that. And I'm not sure why it hit me so hard this particular day. I don't read a lot of accounts about autism, and this is a well written nice one, but I don't think I'll read any more for a long time. I start thinking not nice thoughts like "what have YOU got to complain about?" and that is not helpful to me or anyone. And I'm just thinking---autism really is a rotten thing to have. I don't mean Janey is not a joy, a wonderful girl who many times a day makes me very, very happy. But it's not fair to her. Why should she be autistic and retarded? Where is that fair? And the grownup voice inside always says something like "Life isn't fair. Think of people who have lost children" And I do. And I can't even think about it, it makes me so sad for those people. I haven't lost a child, I have her. But life is going to be hard for her. Now is probably the easier part. She is a beautiful girl, and I live in terror of that---of the world out there that takes advantage of beautiful girls, the world that values smart and self-assured and hip, a world that pays a lot of lip service to including all, but can't even find the funds for a single bit of respite, or after school care, or can't field a camp that can handle her. And I need to stop crying.

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