The hand in the dark - FamilyEducation

The hand in the dark

April 29,2009
L. is a kid who loves and needs his routines--his crutches, we call them. Once a week I pick him up from school early and we head off to a weekly appointment some 35 minutes away. His crutch for this particular weekly outing is a book. He must always--ALWAYS--have a Hardy Boys novel with him for the 35 minute car trip to and from the appointment, and the sometimes 30 minute wait in the waiting room. As a result, he will build up a small stash of these books in the back of the car (along with the stacks of office supply catalogs he pilfers from the school's recycling bin). But yesterday we were in-between library visits and all the books had been returned. Furthermore, because the appointment was earlier in the afternoon than it usually is, we had no time to make a quick stop at the library for another book (no time to park miles away, haul T. out of the car, make it past the picture books display, fumble with electronic self-checkout, back to the car, seat buckles...), as we will sometimes do. So: --no book --earlier appointment --no chance to stop at library These all might seem like small setbacks for most kids, but for L. it was huge. Before he was diagnosed with Asperger's we used to despair over how the smallest (to us) of setbacks would throw him into a downward spiral--one he could not rebound from easily, if at all. What were we doing wrong as parents? Why did this happen? What could we do? Now, of course, we understand so much more--about why it happens, and about what to do when it does. Still, I know that to some the tears and the pacing and the hand-wringing and yelling over this disruption to the Way Things Should Be seems awfully close to the carryings-on of a spoiled child, who is used to having his needs met, regardless of how unreasonable they may be. I know this because we sometimes had those thoughts ourselves, back before we understood what was going on. I say sometimes because we still always felt something wasn't quite right--that the word "spoiled", so harsh and judgmental and general, just wasn't right. A few years ago I might have lost my patience over L.'s meltdown in the school parking lot, or bent over my steering wheel and wept in confusion and worry over his behavior. But instead I talked calmly and simply to him while my mind quickly processed a Plan B: drive like crazy to the library, pull up in front, engine idling, hand him the library card, and send him in on his own to find his book--something he had never done before. It was a Plan B fraught with possible pitfalls (what if he took too long? Got worried? Couldn't find a book?). And you know what? It worked beautifully. L. was in and out of the library in just under five minutes, precious Hardy Boys book in hand, meltdown stopped in its tracks, self-esteem boosted, peace restored. I don't have any great pronouncements about these thoughts, but I know that Autism Awareness month is drawing to a close. I squirm a little at the idea of setting aside a month to focus on autism at the expense of thinking more about children on the spectrum as children first--wonderful, smart, quirky, beautiful, take-your-breath-away kids. Awareness months tend to hone in on the challenges and disabilities and labels, rather than on the whole child, and this has always bothered me. But I do know that there is nothing more frightening than feeling as if you don't understand your own child; feeling that they have spiraled far away from you, into some dark and unreachable place. There is also nothing better than being given that hand in the dark--the one that will help you help your own child, especially in the moments when he needs you most.