Monday, February 27, 2006
I’ve begun to worry that my posts on Jamie are sometimes too saccharine. I do feel a compulsion to narrate his skills and his triumphs—in volleyball, basketball, and in the all-important sport of shark-identifying—and there should be no mystery as to why. By and large, people don’t understand children with Down syndrome unless they know one personally. They find it hard to believe how aware, how present Jamie is. They think of mental retardation, and they imagine that people with mental retardation just aren’t fully there in the sense that you and I are, and that (recursively) people with mental retardation are by definition unaware that (a) they have intellectual disabilities and that (b) people treat them according to how those people perceive (a). And as long as that’s the case—for the foreseeable future, I’d say—there’s an obvious and palpable need for parents like me to tell the world that my Jamie knows all the state capitals, and, just as crucially, takes great pride in the fact that he knows all the state capitals; that he knows the difference between a mako shark and a goblin shark, and, just as crucially, that he loves knowing the difference between a mako shark and a goblin shark; or that he remembers every single one of his teachers and babysitters over the years, and, just as crucially, loves correlating them with the year 1994 in which he was three, or the year 1998 when he was seven, or the year 2004 when he was thirteen, and so on.
But just as Jamie is self-aware about his accomplishments and his talents, he’s also self-aware about his limitations. It’s increasingly obvious to him that he has trouble doing things that other kids find routine, and, being human and all, he sometimes finds this frustrating. (At the same time, and probably for the same reason, he’s exceptionally disability-aware. He understands that children use wheelchairs, or have trouble talking, or are deaf or blind; he understands that this remarkable young man has a developmental disability that does not prevent him from hitting six three-pointers in the space of four minutes.) Last year, for example, Jamie learned to his dismay that he lacked the hand-eye coordination for one important task in his Harry Potter computer game, and when he saw his father complete the task easily (his father, foolishly enough, thought he was helping out), he refused to play the game for weeks afterward. Thankfully, Jamie got over that moment, and is once again an avid Harry Potter player; but I noticed that the next time we came upon that task, and he earned a score higher than mine, he doubled over and rubbed his hands in glee, saying, “I did it better than you!” Since then I’ve been careful to note—and to remind him of—all the things he does better than I do.
Still, I do not want to give the impression that I never lose my patience with him. Anyone who knows me knows that I am not a patient person; in fact, some people who know me are amazed that I have the patience to be the parent of a child with a disability. “That’s part of the dynamic,” I once said to a friend who remarked on my utter inability to suffer fools gladly. “I have only a fixed amount of patience. Jamie gets 95 percent of it. The rest of you have to make do with the couple of drops left over.” Jamie can be as stubborn as any other teenager, and when he gets obsessed with something—like, say, the question of where his Freedy Johnston CD is—he’s capable of asking the same question thirty or forty times. When that happens, Janet and I have to walk a fine line: letting him know, on the one hand, that this behavior is unacceptable, and reassuring him, on the other, that we are not angry with him.
When Janet was teaching in Ireland for a month during the summer of 2003 (and Nick went along, as a student), I took Jamie with me on four weekend trips to four different cities. In preparation for these adventures, I taught Jamie a couple of words that he could use to describe his behavior while we were on the road. The positive ones were mature, patient, independent, and observant. Whenever he showed himself capable of mastering a new skill—putting his clothes on, changing his own CDs, microwaving pizza (that one is a story in itself)—I told him that he was becoming more independent, which means doing it all . . . by . . . “myself,” Jamie would add, beaming. The one negative term I taught him was “relentless.” “When you say the same thing again and again and again,” I said, “that is relentless. You don’t want to be relentless.” Since then, Janet has updated this, teaching Jamie the more obscure but more accurate term perseverating. When Jamie gets into one of his obsessive-repeating jags, Janet will say, “Listen to yourself. You’re perseverating. Now you need to think about what you’re saying, and control yourself.” The effect of this is always astonishing. First, Jamie denies it: “I am not perseverating,” he will say with some vehemence. Then he will stop perseverating.
One day about two years ago, I chided Jamie for asking me about gum ten or twelve times as we were coming home from swimming. (He doesn’t chew gum; he simply has a fascination with it.) I told him he had to stop perseverating, and of course he got pouty, and of course then he stopped. On the drive back home, I unconsciously began to whistle the Beatles’ “I’ll Be Back,” and Jamie told me to stop whistling. A few seconds later, I started again, just as unconsciously as before. “Michael!” Jamie exclaimed from the back seat. “You are perseverating.” And he was right. So I stopped. But not before laughing and telling him that he was becoming very mature and observant. (Not to mention very wiseass! And no, I didn’t mention it.)
More recently, Jamie has noticed that sometimes when I reach the limit of my patience, I sigh. “What’s that noise?” he once asked. “You go ‘ahhhhh.’” I told him it was a sigh, and that people sigh when they are sad or lonely or tired, and that I was tired because he was fussing about putting on a jacket before going outside. This made him extremely curious about what kinds of things do and don’t induce sighing, and by the time we went to Ontario for the Canadian Down Syndrome Society conference last May, we had developed a whole discourse around it. (We had also, not coincidentally, begun to develop a discourse about what I will and will not say about him in public. I told Jamie that I would be speaking about him to a large roomful of people—he’s familiar with that phenomenon—and that one of the stories I would tell would be the story of the pizza in the microwave. Jamie was a little uncomfortable with that, but I assured him that it was a good story about how he learned to become more independent. However, I wanted to know if I could also tell the story of the day he was sad, or whether it was private; he told me it was private, and I promised him I would not tell that story in Ontario, or anywhere else. So you won’t hear it here, either.) When we got to Detroit, we learned that our flight to Waterloo was delayed by almost two hours. Now, I’m not very good at hanging around airports with nothing to do, and neither is Jamie. We’re just not patient or mature enough for that kind of thing. After no more than a few minutes, Jamie got bored, so I promised him that he could play Harry Potter on my laptop if I could find an outlet to plug into. This turned out to be far more difficult than it should have been (partly because the dang C concourse was being renovated), and as we snooped around for an outlet, Jamie started to fuss, and then to fuss some more, whereupon I turned and glared down at him to let him know he was just this far from crossing the line.
“Michael?” he asked, bright-eyed and mischievous. “Are you gonna sigh?”
Ahem. That was observant, and I told him so. But, of course, I did not sigh. Instead, I asked him if he was being a wise guy, and he told me I was being a wise guy, and we did Bugs Bunny schtick for a few minutes.
And then we waited patiently for our delayed plane, sighing together and playing Harry Potter.