“Well, yeah, sweetie,” I said, trying to rally, “but some of those waves will be happy waves, when you . . .”
“How about no waves,” Jamie countered in a growl, waving his arm dismissively and going back to his slumped, head-in-hands posture.
“You don’t want to talk about waves anymore?”
“No.” And with that, he turned on the TV and sent me away.
The wave passed, being a wave. Jamie got used to the rhythms of Nick’s life as a college student: away for four months, back for two weeks, away for four months, back for three months or so. And we got used to the rhythms of Nick’s life as a college student: In his second year, we showed up in St. Louis a day early to beat the other parents to the hampers and backpacks and storage cubes at Target. We booked a better hotel. We executed a move-in to his spacious, six-person suite with brutal efficiency. In his third year, we skipped Target altogether, moving him and his audio equipment and his closest friend (Shachar Shimonovich, aka Shash, one of his first-year roommates and one of Jamie’s favorite people) into an off-campus apartment. In his fourth year, I drove Nick solo in our Subaru Outback, stuffed to the last cubic centimeter and garlanded with a bicycle rack, and upon depositing him in St. Louis flew home alone, leaving him with the car we’d promised him for his senior year. And Jamie got used to having his parents all to himself, most of the time. In the summer of 2008, after Nick graduated, Janet was teaching in Ireland, and I had the boys to myself for one last time. They are, as you have probably gathered by now, more alike than different despite Jamie’s extra chromosome. Neither of them is very good at keeping track of where they put things. And so, after our first week together, I made an announcement to them both: From this point on, through the rest of the summer, I will no longer answer any questions that begin with “where.” (Jamie, clever like his brother, now asks me, “Have you seen my iPod?” and “Do you know where my wallet is?”—and when I tell him that it is his job to keep track of his things, he replies, “I did not say ‘where.’”)
I had one other heart-piercing moment in those four years. (Only one! I got off light!) On one of Nick’s visits home over the 2007–08 winter break, Jamie came into my study and plopped himself down on a chair I almost never use. “I don’t have anything to do,” he said. This was surprising, because the house had once again become Teen Lounge (or Twenty-Year-Old Lounge), and although Nick’s friends were really Nick’s friends, they continued to like Jamie and engage him eagerly. I assured Jamie that Nick’s friends were (in a way) his friends too, and that he could hang out with any of the groups of Nick-friends gathered in conversation in this room or that. At the time, there may have been four or five clumps of three or four, hanging out and catching up over the break.
Jamie nodded. He would go and hang out with Nick’s friends.
Ten minutes later he returned to my study, plopped himself back in the chair, and said gloomily but with astonishing self-awareness, “I don’t know how to hang out.”
I caught my breath. This was even more striking, I thought, than the There will be more waves insight of Nick’s first year away. I know now that Jamie engages in serious introspection and self-reflection, but he does not often utter sentences that testify to this; the first I can recall, from when he was fifteen, involved his refusal to make a booking for fifteen minutes in a shark tank (in a cage, with scuba gear, accompanied by his father) on the grounds that he had become so fascinated with sharks as a young child primarily “because I was afraid of them.” A perfectly good reason! But more important, a perfectly good self-reflection. I was afraid of the creatures I have studied for years, and this is in fact how I sublimated my fear: by studying them. Cool. So please don’t ask me to spend fifteen minutes in a cage in a shark tank. Got it! Message received.
So that night, I turned in my chair and faced him. “You’re right, you know,” I replied. “You don’t know how to hang out. Lots of people don’t know how—it is really very difficult. You have to listen carefully, and you have to know when it might be your turn to talk, and then you have to say something that contributes to the conversation. It is very tricky, especially when there is more than one person in the conversation and everyone is talking very quickly.” Jamie nodded. “So you can hang out with me for now. And we will work on hanging out.”
Jamie has done reasonably well when he is given a project like this. The first, when he was ten or eleven, involved my response to his desire, after a Saturday swim, to do about nine more things by the end of the day. Go to lunch and play racquetball and go to the movies and play laser tag and get groceries and play mini-golf and . . . I told him there wasn’t enough time to do all those things; he asked why. Since Jamie thinks in terms of checklists, and since at that age he would become frustrated if he did not hit every item on his checklist, I sat him down and had a talk. I imagined myself as a hockey coach telling a player that he has many strengths as a scoring forward but needs to work on his backchecking. I praised Jamie for his facility with math and his great memory and his powers of observation, but told him he really, really needed to work on understanding time. He took this in very thoughtfully, and later that day, Janet and I bought him a digital watch. He has worn a watch ever since, and he is ridiculously, meticulously punctual. If you tell him we will leave the house at 4, he appears at the door at 4:00:00, ready and waiting. He checks the running times of movies. He keeps track of how long it takes to drive to various cities and states from State College. He has never been late for work. So this project has been a pretty spectacular success.
The next big project involved money, another pretty spectacular success story with some rough patches. The first time Jamie took himself out to lunch in downtown State College, at the age of twenty-two, he announced to me proudly that he had gone to Cozy Thai, gotten himself a table for one, ordered the panang curry with chicken, and paid with his debit card. “Wow,” I said, thoroughly impressed. “Did you leave a tip?” “Shoot,” Jamie replied. Within a few weeks, however, Jamie became adept in such matters, remembering to tip servers and Jimmy John’s delivery guys—though upon reviewing his bank statement online I did see a $35 charge for lunch at India Pavilion that reminded me of the mischievous ignatz in Vancouver (at the time, the lunch buffet there was $8).
The learning-how-to-hang-out project is still developing as I write: he has gotten better at being social in small groups, and if he interrupts someone or introduces something irrelevant to the conversation, we gently correct him. Likewise, when he has patiently waited his turn to put in his oar, we tell him it’s his turn, and if he refers to things only he knows about, we ask him to explain. He does not understand that not everyone has seen Galaxy Quest or the film version of How the Grinch Stole Christmas, and that therefore not everyone understands his allusions to or imitations of Alan Rickman or Jim Carrey (though his family does). It is very much a work in progress.
Meanwhile, at college, Nick began dating. And right around the same time, Jamie became noticeably colder around Nick. Nick’s visits home, for Jamie, were no longer occasions for hand-rubbing glee; to everyone’s dismay, they became weekends or holiday breaks during which Jamie would avoid Nick or refuse overtures to join in games or activities. Janet told Jamie he was hurting Nick’s feelings (and he was, though Nick took it remarkably well), but to no effect. So one night, I invited Jamie to accompany me as I walked Lucy the Dog around the neighborhood. He fussed, but I insisted. We had had, by that point, a handful of serious talks on dog walks, and it was clearly time for another. On this one, I told Jamie that I had a theory about why he was no longer being nice to Nick.
“What is it?” he asked, grumpily.
“I think,” I said, “that you have decided that you like having your parents all to yourself, and you like being the big kid in the house. I remember how sad you were when Nick left for college, but you’ve gotten used to it, and now you resent it a little bit when Nick comes back and he’s the big kid and you’re not alone with us.”
“That’s not it,” Jamie snapped back immediately. Oho! So it was something, just not that. Interesting. And suddenly I knew what it was.
“Really that’s not it?” I asked. “Are you sure?”
“Yes.”
“Well, then, is it . . . Rachel?”
“Yes.”
Oh, my. “So you are upset that Nick has a girlfriend?”
“Yes.” Bless him, he is as honest as the day is long.
“And you do not.”
“Yes.”
I promised in the introduction that I would not discuss Jamie’s crushes out of respect for his privacy, and I won’t. But I can say that in his later teen years, he began talking about someday being M-A-R-R-I-E-D (and that’s the way he says it, letter by letter). From the age of seventeen, he began asking me when he would have a girlfriend. I always told him that I honestly did not know—that it was a question no parent, nobody could answer. Que sera, sera. . . . He pointed out that he was “available” (where did he pick up that term? From the movie Percy Jackson and the Olympians: The Lightning Thief, that’s where), and I acknowledged that he was indeed available and that many people liked him. One night I told him that I did not have a girlfriend in high school, and he shut me down pronto, saying, “Not you”—which I took to mean, sensibly enough, that this was not about me. I tried this tack only once more; the second time, when I tried to speak of my loneliness as a teen, I was met with “But you met Janet,” to which I could only think, touché. I will not go there again.
Part of the problem—a very large part—is that Jamie wants to have a girlfriend who does not have a disability. He has told me this many times, but the first time he told me I was taken aback. “Uh,” I replied (and there may have been more than one “uh”), “well, Jamie, people without disabilities don’t usually date or marry people with Down syndrome.”
“Why not?” he asked ingenuously.
“Uh” (again), “that’s a very good question. OK, let me put it this way. You know that Todd and Hayward were girlfriend and boyfriend.”
“Mm-hm,” Jamie replied, a bit puzzled.
“Well, fifty or sixty or more years ago, it was very rare to see a black person dating a white person. In some states it was actually against the law for black people and white people to get married.”
“That is crazy!” Jamie exclaimed.
“It was definitely crazy. But now it is no big deal, right? You see people of different races and colors getting married all the time. And of course you know boys and boys can be together, like your friends Tim and Ramon, and girls and girls, too. But not very long ago, that was against the law, and if a boy was in love with another boy, or a girl with another girl, they had to hide their love from everyone else or they might be arrested and thrown in jail.”
“Nutty,” Jamie replied.
“Right. But that changed too, and now most people don’t think it is weird to see black people with white people or boys with boys or girls with girls. Maybe the day will come when people without Down syndrome date people with Down syndrome. Or people without intellectual disabilities date people with intellectual disabilities. Right now it doesn’t happen. But someday it might.”
In other variations on this conversation, I have pointed out to Jamie that he cannot drive a car and needs help with grown-up living skills, and that this might be an issue for any potential love interest. But those answers, it seems to me, amount to kicking the can down the road. His inability to drive a car or cook dinner isn’t the main issue. The main issue is that the analogy to interracial or same-sex couples doesn’t quite hold up when it comes to intellectual disability. There are any number of couples today with one member on the high-functioning end of the autism spectrum, but no examples anywhere, so far as I know, of someone with two twenty-first chromosomes dating someone with three. I feel terrible telling Jamie, in effect, One of your own kind, stick to your own kind, but I cannot lie to him about his prospects, no matter how available he might be.
So there was nothing to do with this wave except to let it wash over him, however many years it might take. Rachel was, for her part, charmingly sweet and generous to Jamie, and that probably made things all the harder for him at first. The wave passed, being a wave. But it receded only very gradually, and Nick weathered the turn in Jamie’s behavior mostly by telling Jamie that he had become “cheeky.” For his part, Jamie did have an on-again, off-again thing with a local girl with Down syndrome, mostly off-again (it is now permanently off), and he grew to embrace Rachel as a member of the family and to warm again to Nick. And yet there is still a remnant of the tensions of that time, and it is noticeable whenever Nick taunts Jamie lightly by telling him it will be his job to clean the gutters. The gutters at our house are about twenty feet off the ground, and no one here is getting on a ladder to go that high. It is beyond preposterous. But the idea gets under Jamie’s skin somehow, and though I have told him repeatedly that he should respond in kind, perhaps by telling Nick that his job is to clean the garage or paint the basement (far more plausible tasks!), Jamie always responds straightforwardly and angrily to these provocations. Then again, during the time I was writing the first draft of this chapter, our family was playing a card game with friends one night, and Jamie read his cards aloud and told me to “go sleep in the yard” when I corrected him on some small detail. So there is hope that he will become fluent in trash talk after all. It is part of hanging out.
Thankfully, that period of chilled Nick-Jamie relations is now scar tissue, a slight blemish in an otherwise rich relationship. Janet and I know we got very lucky with these two kids, these jeunes hommes. It is not a question of being good parents, though we have tried to be good parents. We know legions of good parents whose kids got tumbled by waves and are struggling to stay afloat. Nick is always solicitous of Jamie’s many interests, especially in geography, in which Nick has excelled since he was five. He shares his music (mostly indie rock) with Jamie and makes compilation CDs for him. (As a result, Jamie has puzzled more than one DJ at holiday parties by asking to hear the New Pornographers.) He has Jamie for sleepovers and hangings-out. And he is not merely indulgent but supportive of Jamie’s various obsessions, from sharks to Beatles to food. In late adolescence, Jamie got on a kick of asking to eat [some ethnic] food in [some city]. It was a little like Mad Libs: Jamie would fill in the blanks in the most random and curious ways. Let’s eat Cambodian food in Pittsburgh, he proposed one day, and sure enough, the Google revealed that there is indeed a Cambodian restaurant downtown, the Lemongrass Café, not far from the PNC Park, home of the Pittsburgh Pirates. Let’s eat Ethiopian food in Charlotte. Let’s eat Bosnian food in St. Louis. These are all real examples, and they all led to fabulous dinners; when Nick got his master’s degree in architecture from Washington University in St. Louis, in 2013, Jamie hit upon the Bosnian idea, and he and Nick discovered Grbic, a terrific place where even Janet, the vegetarian, emerged raving about how subtle and tasty everything was. (We also learned that St. Louis has the largest Bosnian population of any city outside Bosnia. Who knew? Perhaps Jamie knew.)
At the same time, Nick does not indulge some of Jamie’s more fanciful notions about world cuisine. When he first embarked on his mission to eat the foods of all nations, Jamie became fascinated by the fact that some people do not eat pork and some do not eat beef, some eat naan and some eat couscous, some eat injera and some eat quinoa. For a while, until I asked him to desist, he got into the habit of describing regional preferences in meat by saying, “They do cut up [some animal] in [some country].” (This was especially disconcerting in restaurants, for anyone within earshot.) Most of the time, he is right; they do cut up yak in Nepal, for instance. But on one of Nick’s visits home, Jamie tried to tell Nick that “they do cut up badgers in Iran.”
“Jamie,” Nick said with a raised eyebrow. “They do no such thing.”
“They do, Nick.”
“Jamie. What kind of country is Iran? What kind of land is in Iran?”
>
Jamie thought for a moment. “Desert.”
“And do badgers live in the desert?”
Jamie thought for a longer moment. He knew he was boxed in. But he rallied: “They could cut up meerkats.”
Nick laughed too hard to bother with reminding Jamie that the meerkat is native to southern Africa.
And then came Nick’s big moment as a TV star. Jamie was twenty-three; Nick was twenty-eight. Nick had applied to appear on Jeopardy! and had passed the online test and in-person audition. Janet and her sister Cynthia accompanied him to Los Angeles to offer moral support; as it happens, Jeopardy! tapes five shows in a row on Tuesdays and Wednesdays, and Nick’s game, which he won, took place on the final half hour of taping on Wednesday. So he would have to come back the following week, though Jeopardy! pays the airfare to Los Angeles for contestants who have to defend their titles.
Jamie and I decided to go with Nick for round two, on the grounds that there would never be another moment for Jamie and me to see him on Jeopardy! and that we could not allow Nick to be the only contestant with no family members cheering him on. (He eventually won two games and led throughout the third before losing in Final Jeopardy.) I told Nick afterward that I had never had such hopeless parental anxiety for him as I did watching him in those two games. He had not played Little League baseball or youth hockey, and I never had to fear for his safety in his soccer and tae kwon do careers. But watching him on Jeopardy! I was ridiculously nervous. I did not mutter the answers to myself in the stands, because the Jeopardy! staff make a point of announcing to the audience at the outset, “We know you all watch the show, and we know you all watch it out loud. Do not do that here. There are microphones everywhere, and if we pick up so much as a whisper we will throw the question out, stop, and retape.” Jamie was so struck by this announcement that he tried to prevent me from waving back when Nick waved to us before the start of the first contest.
Life as Jamie Knows It Page 5