Life as Jamie Knows It

  Jamie Bérubé, senior portrait, State College Area High School yearbook, 2011.

  Photo: Helen Richardson, courtesy of the Bérubé family

  It took a couple of villages to raise Jamie. He is lucky to have a wonderful extended family and family friends; on Janet’s side especially, he has spent innumerable days of delight with awesome aunts, uncles, and cousins, and my own birth family has always loved him dearly. But in the villages of Champaign, Illinois, and State College, Pennsylvania, we could not have raised Jamie without the help of the physical, occupational, and speech therapists of his youth, his medical professionals, and his dozens of teachers and paraprofessionals—not to mention his legions of paid companions (formerly known as “babysitters”), all of whom he remembers fondly and vividly. To all of them, to his Special Olympics coaches and volunteers, and to his current employers and assistants and associates in the grown-up world of work, this book is dedicated.

  Contents

  Reintroducing Jamie Bérubé

  His Brother’s Keeper

  To His Health

  Brainstorming

  On the Fields of Play

  School/Work

  The Meaning of Life

  Afterword

  Acknowledgments

  Notes

  Reintroducing Jamie Bérubé

  My little Jamie loves lists. That was how I opened Life as We Know It twenty years ago, writing my first draft when Jamie was only three and a half years old. Well, my Jamie is no longer little. But he still loves lists; he is, I think, the most astonishing and assiduous maker of lists I have ever met. When he has to entertain himself—when he is waiting for breakfast or sitting through one of his parents’ lectures or just keeping himself occupied while he watches one of his dozens of wrestling videos—he takes out a legal pad and writes down (a) various Beatles songs along with the year of their release or (b) various opponents of the wrestler known as the Undertaker or (c) cities from one of his world atlases, cities from the Middle East or Central Asia or Indonesia or South America or Wisconsin, or (d) all sixty-seven Pennsylvania counties in alphabetical order, from Adams to York. He makes all his lists from memory, with the exception of the cities lists, which he copies out of the atlas.

  We have hundreds of these legal pads in our house, and we are always buying more.

  I am not sure exactly when little Jamie stopped being little. In his tween years he was still a waif—short, skinny, and easy to carry if carrying was needed. I have a video of him from late 2002, when he was eleven, and his voice is impossibly high and squeaky. Then again, that was true also of preadolescent Nick, and I wondered, as I went through our old family videos to convert them to DVDs, Was there a time when my children huffed helium? Down syndrome is associated with shortness of stature, and my wife, Janet, once predicted that Jamie would grow no taller than 5 feet 2 inches. I said 5 feet 6 inches. I won the Jamie height-prediction pool: Jamie is now 5 feet 7 inches, and somewhere in his teen years he developed wide, powerful shoulders and a strong upper body. He is a Special Olympics swimmer and loves work tasks that involve physical exertion. Buying him dress shirts is a challenge: he has an eighteen-inch neck, almost like a football lineman’s, and a short torso. But we think that, all in all, he is a reasonably attractive young man.

  In French, he would be (and I sometimes call him) un gentil et sympathique jeune homme. (Aussi, entre nous, il est adorable.) He is bright, gregarious, even ebullient in social gatherings, and his lists are the product of his amazing cataloguing memory and his insatiable intellectual curiosity about the world—its people, its creatures, its nations, its languages, and (perhaps most of all) its culinary traditions. If it were possible for Jamie to travel everywhere on the inhabited globe, he would do it, and he would try to ingratiate himself with his hosts, just as he does when he greets the owner of our local Indian restaurant by bowing, hands clasped, and saying, “Namaskar.” (The owner, Sohan Dadra, is delighted by this.)

  In the years after the publication of Life as We Know It, I was warned—repeatedly and emphatically—that it’s all very well and good to write about a child with an intellectual disability when your child is young and cute. Children with intellectual disabilities go over best, evidently, when they are young and cute, long before anybody has to worry about things like their adolescent friendships (or lack thereof) and their burgeoning sexuality and their thoughts about mortality and their prospects for employment. Adults with intellectual disabilities are another thing entirely: any number of people—though I have not made a list of their names—who coo solicitously over a toddler with Down syndrome might find themselves recoiling, either from awkwardness or from outright revulsion, from the adult with Down syndrome who sits down next to them on the bus.

  So let me establish this much at the very outset: my little Jamie is no longer little. But he has remained cute for twenty years—except that his “cuteness,” as he has grown, has taken forms no one could have imagined when he was little. Sometimes it is a matter of realizing that our Jamie can be witty and observant, even incisively so; sometimes it is a matter of understanding how dramatically his own self-understanding has deepened as he has grown.

  I think of the fresh spring day in 2002 when Jamie informed me that we could not walk to school (he was in fourth grade) because the ground was strewn with berries “and we would have polka-dot feet.” Or I think of the moment in early 2005 when we emerged from the local gym, having done our racquetball-and-swimming routine for the weekend, and Jamie, seeing me put his gym card in my wallet, declared, “Michael! That’s my card! I can have a wallet. I’m a teenager. I’m allowed.” (Ever since then he has called me “Michael,” though we occasionally call each other “sir.” And ever since then, he has had a wallet. I took him at once to Target, where we bought a wallet and placed his gym card and his school ID in it. The next morning he walked to the bus stop with his right hand placed firmly on his back pocket, with his mind on his wallet and his wallet on his mind.) Or I think of our trip to Boulder, Colorado, in 2008, where I was to speak at the Coleman Institute for Cognitive Disabilities, and I showed Jamie the design of the Denver International Airport, with its famous peaked canopy roof, white fabric stretched over the skeleton of the main terminal. “Some people say it looks like the snowy mountains of Colorado,” I told Jamie, “some people say it looks like tents or Native American tepees. And some people say it looks like the meringue on a lemon meringue pie. You know, the pie with the white fluffy stuff on top?”

  “Mm hm.” Jamie nodded, adding something unintelligible.

  “I’m sorry, sweetie, what did you say?”

  He repeated the unintelligible word unintelligibly. This happens now and again; his speech tends to be unclear, and he sometimes isn’t sure he has the right word, as when he told me to shave with a rooster when he meant “shave with a razor” (he was four) or when he complained, in the course of a long walk, that we would be like the Ramones (he was sixteen, and Nick and I never found out just what he meant). To make matters worse, he speaks too quickly, most likely because he has a father who speaks too quickly. Fortunately, he has seemingly endless reserves of patience when people ask him to repeat himself, and I know of only a handful of instances in which he became frustrated with his auditors—as when he finally explained to his family, after repeatedly asking for soosee, that “it comes from Japan.” Ah, we said, sushi. . . . And yet, one morning Janet overheard him talking to some of his stuffed animals, saying, “Jamie Bérubé. No, Jamie Bérubé. Jamie Bérubé. J-A-M-I-E.” It was then that Janet proposed the theory that Jamie loved his dog Lucy in part because she was the only creature in his world that never asked him to repeat himself.

  This time, it took him three or four
tries before I understood that he was saying “Sidney.” “Sidney who?” I asked.

  Finally he got a wee bit weary with me. “Not Sidney who,” he replied. “Sydney in Australia.”

  Oh, holy mother of Moloch. Sydney in Australia. I started to tear up behind the wheel. Here was my teenage son with Down syndrome, likening the architectural design of the Denver International Airport to the white-shell roofs of the Sydney Opera House. I did not see that one coming.

  But my favorite story from Jamie’s teen years involves a watershed moment, which happened at the very end of a business trip to Blaine, Washington, on the Canadian border. Jamie has always loved everything about traveling—the packing, the driving, the airport (he will ask about connections and gates months in advance of any connections or gates), the rental car, the hotel, and the pool (for there must be a pool). So even though we had to drive three hours to Pittsburgh in pouring rain, fly to Seattle, then drive another three hours to Blaine, he loved all of it. We got in at 1 a.m.—1 a.m. Pacific time, that is; 4 a.m. to us.

  During my presentation, Jamie sat quietly at the back of a large room for ninety minutes and played his Harry Potter and the Prisoner of Azkaban CD-ROM game on my laptop with headphones while I did my bit. Afterward, we visited the Vancouver Aquarium, the Capilano Suspension Bridge, and the Grouse Mountain Skyride; then it was back to Seattle for a midnight flight to Pittsburgh and the drive back to our home in the unimaginatively named town of State College. Jamie was cool with getting ready for bed at the airport, even though this initially made no sense to him. He asked only for a glass of chocolate milk before he had to brush his teeth, and when I explained to him that most of the shops and stores in the Seattle-Tacoma airport were closed, he said, “We should ask,” and promptly stopped a person at random: “Do you know where there is chocolate milk?” I explained to Jamie that this somewhat nice man—he merely half-smiled at the question—did not work at the airport. We found a Starbucks shortly thereafter, and Jamie decided to wait on a bench near security while I got some water for me and some chocolate milk for him. I was being served just as they began to close up shop, at 10 p.m. I knew it would cause Jamie some distress to see his father being trapped in Starbucks behind a metal grate, so I looked back, and sure enough, there he was, on his bench with his hands to his cheeks and his mouth open in the “Home Alone” position. I gave him the thumbs-up to let him know I could get out again, and came back in a minute or two with his freshly mixed chocolate milk.

  And yet, back then, Jamie could be a bit of a challenge as a traveling companion. He had learned much in the course of the previous year, when I started taking him with me as I traveled for work, partly to give Janet a break from single-parent child care and partly to get Jamie to become more adept as a traveler. He began our trip from Baltimore to Houston by nearly stepping off a curb at BWI into the path of an oncoming shuttle bus. (The “nearly” part was me grabbing him by the shoulders.) He could also still get into a little harmless mischief here and there. On our way up to Vancouver, he announced that we were running out of film. I assured him that he was quite wrong about this, because I was sure that there were twelve exposures left on the disposable camera I had gotten for him. But when we sat down to lunch al fresco at a little restaurant across from the Capilano Bridge, I watched Jamie drinking his soda and said, “You look so cool like that. Hold on and I’ll take your picture,” whereupon I discovered that there was, in fact, no film left in the camera.

  “We’re running out,” Jamie said, just as he had noted an hour or two earlier.

  “Ah, I see,” I replied. “You mean that when we got into Canada and I left you in the car while I went to get Canadian dollars, you took all the pictures in the camera? And then you told me we were running out of film?”

  “Yes,” Jamie said, with a wry smile. “Are you gonna sigh?”

  Are you gonna sigh? So he was entirely aware of the fact that he had been a mischievous ignatz.

  “No,” I sighed, “we’ll just get another camera, you mischievous ignatz.”

  But Jamie was relishing this. “Say, ‘Oh, what am I gonna do with you,’” he demanded. This is a line from the film version of Curious George, and fourteen-year-old Jamie found it appropriate at such moments.

  “Yes, Jamie, that was a very Curious George thing to do, to use up all the film and take all the pictures in the car. What am I gonna do with you?” He grinned and rubbed his hands together.

  As we finished lunch, I told him we both had to go to the men’s room before we went to the bridge. But Jamie didn’t want me to go with him. He insisted, instead, that he would go into the restaurant alone and find the bathroom all by himself. I approved, reminding him to ask a server if he couldn’t find it right away; I told him I would wait for the check. He came back in a few minutes, hands washed and everything, all set to go. But the check still hadn’t arrived, even though we were now one of only two parties in the place. “Let’s go,” Jamie insisted.

  “We’re still waiting for the check,” I replied.

  “Why?” he asked.

  “I don’t know why,” I said. Finally, our server arrived, and I had the credit card ready for her, and soon we were all paid up. I told Jamie to wait at the table while I went to the men’s room. When I returned, Jamie was waiting very patiently . . . but he had a funny expression on his face, almost a half-smirk. My spider sense told me to check the check, and guess what? On the $23.51 bill, Jamie had written, just under my “$30.00,” the figure “$90.51.” I gave him a narrow-eyed, sidelong look.

  “Say, ‘I wish you wouldn’t,’” Jamie said. Again, the deliberate, self-aware rascality.

  “I wish you wouldn’t,” I dutifully replied. “You cannot leave ninety dollars on this check. It is too much money.” Jamie grinned again. “No, really,” I said. “Don’t do that, please. It will make our server very confused, and besides, thirty dollars is really enough.” Jamie understands tipping. He just wasn’t clear on the details—and over the next ten years, this turned into a serious consideration once Jamie got his own bank card (which he keeps in his wallet, of course!) and began taking himself out to solo lunches in downtown State College.

  When we dropped off the rental car, I informed Jamie that I would change out of my shorts and into jeans after I got him into his pajamas. He objected: “Michael,” he advised me, “you should not be nude and naked in public.” This admonition—which he and I use to this day, whenever disrobing is called for—involved a hard-won realization for Jamie, who, a few years earlier, had been dismayed to find that the difference between “public” and “private” could hinge on the difference, and the few inches of distance, between the “private” space of the boys’ locker room and the “public” space of the adjacent hallway.

  “No, sweetie,” I assured him. “We’ll change in the men’s room at the airport, and you’ll brush your teeth. Do you want to wear long pants on the plane?”

  “No,” he said after some deliberation. “I’m OK in shorts.”

  Then when we learned that our plane would be an hour late, I told Jamie that we would have to wait until after midnight before we could board. We set up shop on a little couch-like structure right by our gate, and Jamie played his Harry Potter games on the laptop. At eleven I asked him if he wanted to stretch out with his pillow on the couch-like structure. “Are you sleepy?”

  “Um, a little bit,” he said, “not that sleepy.”

  “You’re not that sleepy? I am very sleepy,” I admitted.

  “You sleep,” Jamie suggested. “I will play Harry Potter right here.”

  I was stunned. The kid who couldn’t be left alone in the car for five minutes without using up all the film in the disposable camera was offering to keep watch over me? “Oh, thank you, Jamie,” I said. “That is very sweet of you. But I don’t want to fall asleep and miss our plane.” I did not think there was any chance of his wandering off—not at the age of fourteen. A few years earlier, I would have had serious cause for concer
n. But still, sleeping on the job is sleeping on the job. What if someone tried to mess with him? What if someone lured him away with promises of chocolate milk? What if he got engrossed in his game and didn’t notice the arrival of the plane? He was not a seasoned traveler, not then.

  “Michael! You will not miss the plane!” Jamie exclaimed, almost indignant. “I will tell you when it comes.”

  I looked at him with genuine surprise. “You will tell me when the plane comes?”

  “Uh-huh,” he said. “Now you sleep right here.”

  In taking Jamie on these trips of mine, I was trying to enhance his independence, paradoxical though that may sound, encouraging him to feel more at home in the world and capable of doing things like finding restaurant bathrooms by himself. But this seemed a bit much: he would keep an eye out for our plane while his weary father slept? On the other hand, what could possibly happen? I would be right next to him, and I certainly wouldn’t sleep so heavily as to be unable to snap to attention if a passing lunatic accosted him in some way. And I would just close my eyes for a second. . . . But . . . how would he know when the plane arrived . . . or if it was the right plane. . . .?

  Twenty minutes later, Jamie jostled my elbow. “Wake up, Michael,” he said gently. “Our plane is here.” And sure enough, the passengers had just begun to disembark. Jamie had been watching carefully the whole time, even while dodging dementors and imps and skeleton men in the dungeons of Hogwarts. This was his watershed moment, and mine: I did not have to monitor him or keep a watchful eye over his use of the camera or worry about his finding the men’s room. I was grateful—and deeply reassured. Because, as I told him on the way home (as part of my ongoing project to give him a good range of good descriptions of himself—diligent, observant, patient), he is very conscientious. And responsible. And from that day forward, more and more independent. And capable, for the first time, of taking care of me.