Most people look forward to weekends, a few carefree days that are a reward for the five that precede them. It’s their lack of schedule and structure, however, that can make weekends a challenge for parents of children with autism. An AST parent put the issue into words in a recent blog post, describing a situation we’re sure many AST families can identify with. Here it is, edited slightly for space:
The sounds alert me first: Mzzzzzzzzz. Bzzzzzzzzz. MzzzzMzzzzzMzzzzz. Jack’s teeth scrape every word and noise that comes out of his mouth. And then comes the scotching, crouching and smooshing behind the couch thing, which I haven’t seen for months. What should I do? What did I do wrong? Should I just let him have a minute to get himself together?
But it doesn’t end in half an hour, or an hour. I give him some deep squeezes. Mark, my husband, takes him for a hike. We bake bread; I make sure to pick a good kneading recipe. But he’s not really responding. Was it something he ate? Does he have to poop? Is it sensory, or memory, or vitamin deficiency? You see, we have all these issues for real. I join him spinning in the room, the only thing I can do at the moment. But it’s not a television episode. It doesn’t end with a sentimental song.
My son has had amazing moments of growth, which were exhilarating. But he goes back, too, for an afternoon, a weekend, sometimes longer. For everyone other than family, it’s almost an invisible thing. When they see it, they remember that, why yes, the child does have autism. But I, I see it 10,000 ways. And I feel lost and regressed too. He knew that yesterday, I say to myself. Where did it go? Is there a place where it all goes?
What is happening, right now in his brain, to make him squeeze his head, to make him repeat sounds which squeeze his teeth? Is it biological, behavioral, physical, mental, emotional? I don’t know. I’ve been reading science journals for four years. I have been watching him with 10,000 eyes for four years.
And then he is back. That’s the only way I can put it. One moment, different from the previous, I’m not sure how, and he is here next to me. He is telling me that he liked dinner and he loves the book from the library and that he loves me so, so much. And finally, again, I start breathing.
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