You are probably saying to yourself "Is this woman clueless or what? Her daughter is autistic! Don't all autistic kids like routines?" Well, probably most of them do. But with Janey, it's not always easy to tell. Her problems with communication often leave us completely not aware what she is upset about. The problem is complicated by the fact that Janey has a fantastic memory for small details. That results in routines that are in her head, but that we would have no earthly way of knowing about or following, because she can't tell us about them, and we haven't even noticed they WERE routines. Another barrier to me figuring this out---Janey is not at all bothered by new situations. I guess, thinking about it, that makes sense. Brand new situations don't HAVE a routine. This explains something that always confused me---why the early weeks of school have always been among Janey's best weeks of the year. I always thought it was that she was very happy to get back to school, and that's some of it, but it's also that she hasn't yet got the school year routines carved in stone, being in a new classroom and all, so it's not as disturbing if someone doesn't follow them.
A great example of how I'm slowly figuring this out----this weekend, I was getting Janey dressed to go shopping with Tony. We did the pullup, the clothes, washing off her feet (as she somehow attracts dirt to her feet like a magnet) and washing hands and face. I decided to skip brushing hair. Her hair looked okay, and she hates it being brushed. Her long hair is one thing I'm probably very selfish about. I don't want her to have short hair. I love her long hair, and I think she likes it too. But brushing is a battle. However, Janey balked at the door, went back in and grabbed the hairbrush and handed it to me. I had skipped part of the routine. I thought maybe because she was ASKING for her hair brushed, she'd be happier about it, but she wasn't---she screamed for it just the same. But screaming or not, she felt it needed to be done.
Another example---one of the first times we took Janey to a neighborhood where my favorite thrift store is, Tony took William and her to a restaurant near it. It was a rare attempt at restaurant eating, and by reports, not that successful. She has some fries, but quickly got restless and they had to take most of the food home. However, now every single time to go to the neighborhood and walk past the restaurant, she tries to pull us in there, open or not. Somehow, that got processed as a routine, but I am quite sure if we did take her, she wouldn't like it any better than the first time.
I am sure there are hundreds of other routines I'm not aware I'm supposed to be following. I think a lot of Janey's random screams and fits are because someone is not doing what they are supposed to be doing. Once in a while, she can silently correct things, like how she often moves my arms or legs when we are reading or snuggling, so they are in the right positions, or how she finds a bag we once got of small red cocktail type straws that have become the only acceptable straw for chocolate milk. But so many things are out of her control. It's not that I would do them all, if I knew them, but if she could talk more and understand more, I could explain to her why we couldn't. I could avoid the situations that would set up the need for a routine to be followed. I would not be as surprised by her screams if I knew I wasn't doing what she thought I should. For now, I will have to just do the best I can, with my memory that is not nearly as sharp as hers.
And now, for a bonus, a picture from Janey at school today! It doesn't really have to do with the routines, but I love it anyway, and it shows how she is included and happy at school, working on a science experiment. Thanks, Amy!
2 comments:
She is just SO beautiful!
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