Life as Jamie Knows It

by Michael Berube

  Jamie did not wander off in the Seattle-Tacoma Airport that night. I was right, may all the relevant deities be thanked, that he had learned to stay put. But over the course of his childhood, Janet and I managed to lose Jamie three times—and I think Janet will find it eminently fair and just if I say that one time was her fault, one time was my fault, and one time was our fault. You have to understand: I grew up in a family in which no story of mishap or travail can be properly concluded until someone has been blamed.

  The first time was in Filene’s Basement in Chicago in the summer of 1996. I was shopping for a sports coat, and Janet and ten-year-old Nick were doing something else. But as I was trying on jackets and doing the triple-mirror thing, Janet came up to me in a panic and told me that Jamie was gone. He was only four, and not very verbal, so we had no confidence that he would respond to calls of “Jamie!” But we found him, after ten frantic minutes. For reasons we will never understand, he had crawled into a cabinet below an array of dress shirts.

  The second time was in the IMPE (Intramural-Phys Ed) building of the University of Illinois at Urbana-Champaign in 2000, after Jamie and I had done some weekend swimming. As we were leaving the building, I realized that I had left something in the locker room. Perhaps—no, almost definitely—I should have brought Jamie back to the locker room with me, but I thought that he would understand the sentence “Stay right here and don’t go anywhere until I come back” (and yes, I do know that there is an entire scene of Monty Python and the Holy Grail devoted to the misunderstanding of a sentence such as this one). I was not gone long. Three minutes? Maybe four? But it was long enough for Jamie to wander off, doh dee doh dee doh, my little duck. The IMPE building is huge, with endless rabbit warrens of squash and racquetball courts, a pool, a cardio room, a weight room . . . and I ran down corridor after corridor, calling, “Jamie! Jamie!” to no avail. Finally I found him near the building’s entrance, in the corner of a cavernous room housing three or four basketball courts, watching a pickup game with intense interest.

  “Jamie!” I cried. “I have been looking all over for you!”

  “I’m right here,” he replied, puzzled and yet somehow unfazed.

  The third time was in the Nittany Mall in State College in early 2004, as Janet and I were doing some post-holiday shopping. We were looking at some deeply discounted 2004 calendars in a temporary kiosk festooned with pictures of kittens and dolphins, and suddenly . . . where was he?

  We scoured the promenade of the mall. This was 2004, and malls—even the Nittany Mall, struggling as it was—had not yet become the vast empty structures, evacuated by the irresistible forces of the Internet, that they are today. Swarms of people swarmed among us, and none of them was Jamie. After we had made one full circuit, we began to break down. Janet was starting to cry. We were beginning to imagine why anyone would abduct our son, and we couldn’t imagine anything but horrors.

  Just as we were wondering whether to call the police, we spotted him: there he was, walking from kiosk to kiosk, nonchalantly checking out the merchandise, doh dee doh dee doh, our little duck. We ran to him, gathered him into our arms, relieved beyond measure that he had come to no harm. I imagined him thinking to himself, I’m right here. That was certainly the attitude he had three years later, when we “lost” him for all of a minute—but it could have been a fateful minute. We were on the shore of Rangeley Lake in northwestern Maine, a little beach in the center of the town of Rangeley. There was a playground, some tennis courts, a strip of sand trucked in from somewhere, and a dock. Janet and I, together with her sister Barbara and Barbara’s partner, Steve, were chatting on the sand, and Jamie was playing in the shallow water. I was keeping an eye on him; there were dozens of kids in the water, and Jamie was diving with his goggles, emerging for a few seconds and then diving in again.

  Suddenly I realized that he had not come back up. Alarmed, I ran onto the dock to get the best possible view of everything, but even from that vantage point I could not see him. Once again I had that moment of sheer panic, of thinking the worst. The lifeguard noticed my distress and came over to join me; just then, Jamie popped up on the other side of the dock, away from the designated swimming area. Doh dee doh dee doh, just paddling away . . .

  “Jamie!” I yelled. “Come up here!” I extended my arm.

  The lifeguard spoke to me sternly. “He’s not allowed to be over there. Or to swim under the dock.”

  “I’m well aware of that,” I replied evenly. To Jamie, I said, as I hauled him up out of the water, “You cannot swim under the dock. It is too dangerous! You might hit your head!”

  “I did!” he said merrily. “Three times!”

  In the summer of 2011, Jamie, Janet, and I were hanging out in the New York apartment we have shared with another couple from Pennsylvania State University, where I teach; we spend weekends there whenever our schedules (and our friends’ schedules) permit. We got a call from Jamie’s cousin Trevor, who lives on the Upper West Side; Trevor proposed to visit us and hang out with Jamie for the day. And he told us that he’d take the subway by himself and walk from 59th Street and Lexington to our place, on 62nd and 1st Avenue. When Jamie heard that, he turned to me in astonishment, saying, “Trevor will take the subway by himself—and he has disability!”

  Trevor was born in the waning days of 1994, three months premature. He spent weeks in the NICU (neonatal intensive care unit), as did his twin brother, Dash, who was tragically mis-medicated during his stay and is now on the severe-and-profound end of the scale of human variation. (Trevor and Dash make a brief appearance, as neonates, in Life as We Know It.) Trevor has some mild cerebral palsy and probably resides somewhere on the autism spectrum; he sometimes has an odd affect because he has trouble with social cues, but he has blossomed into a bright, sweet, and deeply reflective young man who can (and will!) converse at great length about his job at a law firm, the history of racism in America, and the vicissitudes of the New York Mets and Rangers. To Jamie, he has been a good cousin and a good friend; for Jamie, he had become a kid with disability who can get around by himself—on the New York subways, on intercity buses, and on commuter trains.

  That day, a light bulb went on for Jamie. It was visible at the time, I believe, incandescent, and it appeared roughly eight or nine inches above his head, but we didn’t get official notice of his epiphany until a few days later, when we all went to a picnic in Central Park for families of kids with Down syndrome. The picnic was held in Heckscher Playground in the southwest corner of the park, and I spent much of my time following Jamie around the various structures, making sure to keep him in my line of sight at all times. Rachel Adams, who teaches at Columbia University and has a young son with Down syndrome (Henry, then three, about whom she has written movingly in Raising Henry), told me that it was a little depressing watching me hover around Jamie, because it suggested to her that she would be doing the same thing with Henry fifteen or twenty years from now. I told Rachel that for as long as I have visited New York with Jamie, ever since we came to Penn State in 2001, I have been terrified by the thought that he would dart into a subway train just as the doors closed. “Oh, yes, I have that subway-darting fear about both my kids,” Rachel replied.

  “As well you should,” I said, “but with Jamie I stopped having that fear only when he became capable of understanding that if such a thing ever happened, he should simply get off at the next stop and wait for me.”

  With impeccable timing, Jamie took a break from playing and cavorting and eating just then. He approached me and Janet and asked, “Can I live independently?” Janet was puzzled at first, since the question did sound a bit abstract and general, but I knew (or thought I knew) exactly what he meant. “Are you asking about taking the subway by yourself?” I said.

  “Yes!” Jamie replied. “I can visit my cousin. . . .” And he held it just like that, with an ellipsis rather than a period or a question mark: you know, I could always go visit my cousin. . . .

  I thought for a mome
nt—wait, no, that’s not true. I thought for maybe one-third of a moment. “No, I’m sorry, Jamie,” I said, “you cannot take the subway by yourself.”

  Deep breath.

  People who know New York will know that the trip from the southwest corner of Central Park to 102nd and West End is a very simple one: you get on the 1 train at Columbus Circle and you get off at 103rd Street. No transfers. At the age of twenty, Jamie was certainly capable of managing that much; thanks partly to his own remarkable internal-GPS intelligence and partly to my decade-long program of trying to make him more familiar with New York, Jamie is now capable of saying, “To go to Madison Square Garden we need to take the N, R, or Q and change at Times Square for the 1, 2, or 3.” (Yes! Exactly right!) However, some transfers are exceptionally difficult to navigate; New York’s subways are made up of three different systems (the IRT, BMT, and IND), and connections among them can be baffling.

  And as I told Jamie a couple of days later (when he asked me again why I didn’t allow him to travel by himself), the complexity of the subway system is only one problem. “I know you would pay attention to the signs,” I said. “I know you would go uptown instead of downtown, and I know you would get off the 1 train at 103rd Street.” Jamie nodded emphatically. “But Jamie . . . you have no idea how to get from the station to 102nd and West End Avenue. You would not know whether to turn right or left off Broadway, because you don’t know yet that West End is just west of Broadway, and you wouldn’t know where ‘west’ was when you came up the subway stairs.”

  “True,” Jamie admitted soberly, lips pursed.

  “And so,” I continued, “that is why I didn’t let you travel by yourself to Trevor’s apartment. You still have to learn about the streets in Manhattan and how to get around after you get out of the subway.”

  So there is the navigating-the-surface-streets problem, and then there is the psychopath problem. As fate would have it, Jamie made his request the same week that eight-year-old Leiby Kletzky was abducted and murdered in a quiet Hasidic neighborhood in Brooklyn while walking home from his summer day camp. He had asked his parents about . . . well, about living independently, and they had agreed, doing a practice run with him beforehand. But on his first trip home by himself, he got lost, and asked a man named Levi Aron for help. Levi Aron did not help.

  Jamie says hello to strangers all the time. At the American Studies Association conference in San Antonio in 2010, he made a habit of telling everyone in the elevator—on every single elevator ride—that his father was the director of the Institute for the Arts and Humanities at Penn State. “You have to stop doing that,” I told him. “Why?” he asked slyly, with an expression I remembered from Vancouver. “Because there are people here who really do go around introducing themselves to people that way, that’s why.” Not that I would expect Jamie to care about such things. “You can just say hello and leave it at that. Please.”

  So instead of letting him take the subway by himself, Janet and I decided to take a baby-steps approach to Jamie’s attempts to navigate New York (where he can walk to nearby stores and markets, which he cannot do in State College): we would give him five bucks and let him go down to the fruit stand below our apartment, the Space Market, to buy Orangina or beef jerky or bagels and chocolate milk. Janet gave him strict instructions: No talking to strangers. Get your change. Come right back home.

  And yes, the first time he went to the Space Market by himself, I waited thirty seconds and then tailed him. As he paid for his merchandise and turned to leave the store, I ducked behind the oranges. He did not see me.

  Today, Jamie is totally comfortable with buying himself stuff from the Space Market, and his parents are too. And now that his father has finally figured out how to manage his Supplemental Security Income (SSI) payments (from the branch of Social Security that provides for adults with disabilities) and has gotten him a fully functioning debit card, Jamie is able to buy himself stuff whenever he wants to. So eventually, Jamie asked if he could go to the Food Emporium by himself, three long blocks away at 59th Street, under the Queensboro Bridge.

  I told him he could go to the Food Emporium if I followed one block behind him—just to keep an eye on him, not to interfere. We eventually put this plan into action in 2013, but before we could implement it in 2012, events overtook us.

  The weekend of July 14–15, 2012, was complicated. Janet was attending a friend’s funeral, and I was attending (of all things) a reunion of my sixth-grade class from PS 32 in Queens. (I had never attended a reunion of anything before.) And Jamie? Jamie was with Trevor. On Thursday night, July 12, they texted us a lovely picture of themselves in the bleachers at Yankee Stadium. “How nice,” I thought. “Bud [Trevor’s father, Janet’s brother] took the boys to a game and took a picture of them in the stands.” But I was wrong. Bud did not take the boys to Yankee Stadium. They took themselves to Yankee Stadium, and took a selfie in the stands. When they got back from the game, around 11 p.m., they took themselves out for sushi. Then, on Saturday, as the Lyon clan made its way to the funeral according to a plan only slightly less complex than the invasion of Normandy, I learned that part of that plan involved Jamie and Trevor taking the subway by themselves from Trevor’s apartment to Grand Central Station, thence to New Haven via MetroNorth.

  The adventure took a bit longer than I would have liked; I didn’t get confirmation of their arrival in Connecticut until seven or eight that evening. But it was historic. At the end of the weekend, I drew up a tally: Jamie and Trevor got themselves to Yankee Stadium, they took themselves out for a late-night dinner, and then they proceeded to navigate two transportation systems in the sprawling NYC metro area with style and grace and savoir faire.

  And just like that, Jamie began to live a little more independently—thanks, in part, to his savvy cousin with disability.

  There are more recent chapters of Jamie’s adventures: in 2014 I bought Amtrak tickets for Jamie and Trevor to go from New York’s Penn Station to Boston’s South Station, where they would be picked up by their aunt and uncle, Barbara and Steve. That experiment went reasonably well, though they got lost for ten or fifteen minutes on their return to Penn Station, which is a rat maze. When I finally found them on the second level (though Trevor had told me they were still on the platform), Jamie said plaintively, “We’ve been going around in circles!” I had been quite anxious about the retrieval-from-Penn-Station part of the journey, and as I learned later, Trevor’s sensitive antennae had picked up on my anxiety, rendering him (what else?) anxious. And then there was the fact that they couldn’t get proper seats for the trip to Boston because they didn’t move quickly or aggressively enough (the Amtrak boarding process is ridiculous, which also caused me some anxiety) and had to make the trip in the dining car. Though they did not really mind that.

  And when Jamie returned home after this ambitious Cousins’ Weekend, he wrote a thank-you note to Barbara and Steve, with minimal help from Janet:

  Dear Barbara and Steve,

  I had a wonderful time with you in Boston and Maine. Thank you so much for the weekend. I really liked staying your house. Playing games on the beach, swimming, jumping on Steve, eating delicious seafood, roosting hot dogs, play wiffleball. It was all great. Thanks so much.

  Love

  Jamie

  But Jamie’s travels are only one aspect of his journey through this life. They are an important aspect, to be sure, deepening Jamie’s experience of the world and giving him a dossier of stories to tell. And part of the narrative of this book will involve the story of how Jamie gradually learned to tell his own stories. But Life as Jamie Knows It will also follow in the tracks of its predecessor, a book that was not so much a memoir as an all-terrain vehicle covering matters of history, philosophy, and social policy. In the following pages, Jamie and I will tell you about his experiences at school, his evolving relationship with his brother, his demeanor in sickness and in health, and his career as a Special Olympics athlete. And we’ll tangle with bioethicists
, politicians, philosophers, and a wide array of people we believe to be mistaken about some very important questions, such as whether life is worth living with a significant disability and whether it would be better for all the world if we could cure Down syndrome. (Quick preview: Yes. No.) But we will not tell you that Jamie is a sweet angel/cherub whose plucky triumphs over disability inspire us all. We will not tell you that special-needs children are gifts sent to special parents. And we will definitely not tell you that God never gives someone more than he or she can handle, because, as a matter of fact, God does that all the time—whether through malice or incompetence I cannot say.

  Yet it is undeniable that my life (and Janet’s, and Nick’s) is far richer than it would be if we did not have Jamie, far richer than we could have imagined before Jamie was born. This is one of the major themes of the book, should you be looking for major themes: we did not know what to expect from Jamie, and we have had to adjust our expectations time and time again. Even the very phrase “life expectancy” makes me cringe now: on the day Jamie was born, my knowledge about people with Down syndrome was so outdated and inadequate that I believed he would have a life expectancy of twenty-one. (That is not a thought I can bear today.) This phenomenon—our process of learning that our expectations for Jamie, and for people with Down syndrome, are subject to constant revision—is very possibly the most important, the most consequential thing we can tell about our own journey, because of course prospective parents who undergo prenatal testing and receive a positive diagnosis for Down syndrome make their decisions to continue or to terminate the pregnancy on the basis of their expectations about what their child will or will not be able to do, their expectations about the quality of life they and their child can enjoy.

  In Life as We Know It, I admitted that before Jamie was born, I did not think I was capable of feeding a neonate with a nasal gavage tube. Political scientist Jean Bethke Elshtain, reviewing the book for a Christian journal, told her readers that, in other words (other words that she was quite confident in attributing to me), had I known that Jamie would have required that level of care in his first year, I would have chosen abortion. This, folks, is as bad as misreadings get, and whether Elshtain misread that part of the book through malice or incompetence I cannot say.