When you’re the parent of a child with autism, you’re always bracing yourself for the endless string of theories headed in your direction. They come from health care professionals, the media, family, friends and, my personal favourite, complete strangers. One woman we barely know keeps asking my wife, Cynthia, for a sample of my son Jonah’s urine so she can run her own tests on it.
The good news about all this is it helps you develop a thick skin, though never quite thick enough. I figured out pretty soon on this journey through what is sometimes called Autismland that the reason theories about autism are so plentiful is directly related to the fact that no one really knows anything definitive about it. In my experience, that includes mental health professionals who are, when it comes to matters of the brain, only guessing.
And the guessing persists. As do the studies generating all those theories. The latest trend in studies has put the emphasis on the ability of parents to cope with the challenges of autism on a day-to-day basis. Researchers seem determined to prove, every few months or so by my count, that there is a connection between raising a child with autism or other special needs and higher levels of stress as well as greater financial and marital challenges. Of course, whenever Cynthia and I hear about the latest results of one of these so-called “well-being” studies we roll our eyes and say pretty much in unison: “No kidding.”
“They could just ask any of us if we’re stressed,” Cynthia invariably adds. “They’d save all that money on research and they could use it to take us all out for dinner and drinks, lots of drinks.”
Or, in our case, they could buy us time to be more organized. In last month’s blog, I confessed we were behind in registering Jonah for summer camp. We’re still behind. That’s because chaos – missed deadlines, unmet obligations, double-booked appointments – has become the rule in our house. I would write a to-do list of all the things yet to be done, but frankly who has the time? or the confidence that it won’t get lost in the clutter?
As defined by WhatIs.com, chaos, with reference to chaos theory is, “an apparent lack of order in a system that nevertheless obeys particular laws or rules.” In other words, laws or rules you’ll never predict or figure out. But parents of special needs kids know that already. We have learned to expect the unexpected. Feeling stressed and overwhelmed every day is just part of that. Of course, there’s an advantage to living in a state of chaos. You’re hardly ever bored. Now, if I could just remember where I put that summer camp registration form.