Life as Jamie Knows It

by Michael Berube

  One night when we were walking Lucy the Dog, I told Jamie how proud I was of all his hard work in French. But it turned out that, just then, he was in no mood for kind words. “It’s too hard,” he grumbled. “I always fail.” He’d said something similar about science when he was briefly overwhelmed by the task of naming the parts of a cell. But despite that moment of despair, he was actually pretty good about remembering nuances like accents graves et aigu, including the two accents aigu on his name. When we asked him, Parle-tu français? He never failed to say, Je parle français souvent or très bien—even though those answers were not quite true. And although he failed his science test on rocks, he learned a great deal about living things—which is where his real interests lie, anyway. (Relatedly, I could never get him interested in astronomy. When we go to New York’s Museum of Natural History, he is always all about natural history, and never about the adjacent Hayden Planetarium. Which makes me sad, because I am all about the planetarium.) So no, he did not always fail. He sometimes failed. Quelquefois. Like the rest of us. And yet, and yet . . . by the summer of 2006 he was capable of writing a postcard to my mother that read as follows (he had minimal assistance):

  13 JUILLET 2006

  BONJOUR! JE SUIS EN FRANCE AVEC MA FAMILLE. J’AI NAGÉ

  DANS LA LAC ET LA PISCINE.

  J’AIME MANGER LE PIZZA ET LE POULET. ET JE PARLE

  FRANÇAIS QUELQUEFOIS!

  JE T’AIME,

  JAMIE

  Those of you who know your French know that he got the gender of “lac” and “pizza” wrong. But on the whole, this really isn’t too bad. And most important, my mother loved it.

  At the end of the year, Jamie’s teachers and aides advised us that eighth-grade science and French would be too much for him. They did so with trepidation. Perhaps they feared that Jamie’s parents, the double-barreled PhDs, would push their disabled kid until he broke. “Really, that’s fine with us,” we said, to their palpable relief. “We just wanted him to get a sense of it all, and to stay in some regular classes for as long as he could.” And yet one year later, at the meeting to set out Jamie’s IEP for his first year of high school, we got some great news from Madame Eid: she was willing to take Jamie back into French class, and the “adaptive” plan was that he would study French I for two years and French II for two years. During his high school years, Jamie became more and more fluent in French (he became better than I am at remembering the gender of nouns), and we hired a Penn State French major to help him with French II—an hour a week, twenty dollars a session. Jamie grew more confident with speaking up in class, though like his father, he remained more comfortable with rendering French sentences in English than with translating English sentences to French. And he grew fond of Mme. Eid, fond enough to think of sending her an antelope skull from New Mexico. His new para, Linda Walker, a charming and kindly woman, was delighted to accompany Jamie to French class, whereas his seventh-grade para had resented the task, never bothering to learn even elementary French with him. And by Walker’s report (for that is how she is known to Jamie), as well as Mme. Eid’s, he was doing just fine.

  I am sorry to report that since high school, Jamie has forgotten a lot of his French for the same reason I have forgotten much of mine, time and time again, encore un fois: we have no chance to speak or hear it on a daily basis. In September 2013, however, when Jamie and I took a trip to Ottawa to speak to Reach Canada, a disability-rights organization, Jamie was fascinated with the bilingual signs everywhere he looked. We spent an afternoon in the Museum of Civilization—excusez-moi, Le Musée de la Civilisation—where Jamie insisted on seeing the IMAX film L’Incroyable Voyage des Papillons (we understood about 10 percent of the narration, but we got the general idea). On our way through the installation on the history of Canada—which we mistakenly entered through the sortie even though we know what sortie means (we didn’t see the sign), so that our journey led us backwards through Canadian history—we came upon an exhibit about Québec in the decades before confederation in 1867. Jamie doesn’t like reading extensive descriptions of things in museums, but he was struck by this one: “Michael?” he said, quizzically, “are these my people?”

  Yes, I said, yes, they are your people, along with the Irish, Scottish, Welsh, and German peoples. He carried that knowledge with him for the rest of the trip, to the point at which he greeted a customs agent in the airport with “bonjour.” She promptly replied with instructions in French, to which I had to say, “Non, merci, nous parlons français quelquefois, un petit peu, mais nous sommes americains.” “Really!” she replied, deftly code-switching as officials in Ottawa are wont to do. “Because Bérubé is such a French name.” “It is,” I said. “They are my people,” Jamie added.

  On the way home I told Jamie that I was sad that he does not take French anymore. We had been talking that summer about how much he missed taking classes and doing homework, and I wondered whether it would be a good idea to hire a French tutor again, this time for two one-hour sessions a week. He had no interest. “We did that already.” But he had an alternate idea: how about a tutor to teach him about composers and music? That was what sent me to Penn State’s School of Music in search of graduate students willing to work with Jamie, and that is how he wound up taking lessons with Mark Minnich and helping Nick study for Jeopardy!

  Jamie’s high school experience consisted, for the most part, of a lively, well-run special ed classroom (known in the school as “the Wild Dream Team”) with pullout for French class and choir. For two years, Jamie also worked as the equipment manager for the high school hockey team, and that was pretty great. (The credit for that idea goes to Andy Wilson, a hockey player and high school teacher.) But there was one major disappointment during those years that can still make me upset to this day: the Best Buddies program.

  Best Buddies is a very wonderful idea, yet another of the Shriver family’s invaluable contributions to the project of improving the lives of people with intellectual disabilities. Because people with intellectual disabilities tend to be socially isolated from their nondisabled peers, and because almost everyone finds social isolation especially difficult to handle in middle school and high school (when Best Buddy programs begin), students volunteer to hang out with a designated intellectually disabled Buddy, attending Buddy events and arranging get-togethers outside of school, going to movies, out for meals, that kind of thing. It’s a great program, and I am sure it looks great on college applications, too. But Jamie’s first Buddy was a disaster. We took him out to lunch, and it seemed as if they had a good deal in common. They talked excitedly and engagingly, and he and Jamie learned that they both liked indie rockers Modest Mouse. We saw that Buddy again when he took Jamie to the annual holiday party hosted by the Arc (formerly the Association of Retarded Citizens). And that was it for the entire year. He didn’t seem like a bad fellow. He was just too busy with other extracurricular activities to be a decent Buddy.

  Jamie’s second Buddy was better, joining him for a handful of social events. But he, too, seemed overbooked. Frustrated, we told the students running the program that they really had to assign Jamie someone who was actually willing to spend some time with him. And dammit, it wasn’t as if Jamie was a drag to be around. With the exception of that one sullen, depressed para in middle school, everyone who has ever worked with him—every teacher, every aide, every therapist, every babysitter/companion—has enjoyed his company. But Best Buddies at State College High seemed to be infested with resume-builders. The exception was one Laura Lovins, a bright, friendly, reserved girl who saw Jamie often. We will always think well of her. But seriously, if you are running a Best Buddies program at your school, or you know someone who is, it’s best to make sure that the Best Buddies are actually showing up to hang out with the people who are supposed to be their best buddies.

  For many years I made Jamie a promise: “When you graduate from high school,” I told him, “I will cry.” As Jamie got older, he found this prospect increasingly a
nnoying. Would his sentimental fool of a father embarrass him in front of everyone? And why was I making such a big deal about this?

  At the same time, Jamie knew very well that graduation is a big deal. When Nick graduated from college, in 2008, we all trekked to St. Louis, flying Nick’s grandmothers and aunt Cynthia out for the event as well. The morning of the big day—the ceremonies began at the absurd hour of 8:30—Jamie took a line from Babe. In the movie, when Mrs. Hoggett wakes to the sound of the alarm clock that she hopes will stop loopy Ferdinand the Duck from crowing at dawn, she briskly taps her husband, saying, “Hoggett, dear! Church!” In Jamie’s version, this became an announcement to everyone in the family. “Hoggett, dear! Graduation!” We thought this was very witty of Jamie, and we have used variants on it ever since.

  But in June 2011, when it was Jamie’s turn to ascend to the stage of the Bryce Jordan Center, I did not cry. Someone had to hold the videocam, after all, and Janet is useless in such situations because she spent two years studying camera technique with the experimental German director Hans von Schaekenhölden. Besides, how could I have known that the truly tear-jerking graduation ceremony wouldn’t occur until two years later, when Jamie graduated from LifeLink PSU?

  LifeLink PSU is an awesome thing—precisely the kind of awesome thing that helped us decide to move to Penn State. Created by dynamo disability advocate Teri Lindner, a State College Area School District teacher who won Disney’s Teacher of the Year award in 1999, LifeLink PSU allows students with intellectual disabilities to take appropriate classes at Penn State until they turn twenty-one. Most school districts simply keep kids with intellectual disabilities in high school until twenty-one, at which point the state has no more obligation to educate them. Lindner, correctly seeing this policy as a benign form of educational warehousing, worked with Penn State to create a program in which high school students could graduate from high school on time (more or less), then spend a couple of years mingling with Penn State students in class and out. When I say “educational warehousing,” I do not mean to suggest that high school students with intellectual disabilities are being kept in conditions like those of the state asylums of yesteryear; their high school careers, instead, consist largely of programs designed to help them transition from school to work and/or independent living. Jamie benefited from those programs. But even still, he wanted to learn more about the Civil War, more about the Iron and Bronze Ages, more about Martin Luther King Jr. He did that only because the LifeLink PSU program allowed him to.

  The program is housed in Penn State’s student activities center, the HUB-Robeson Center, and it involves hundreds of volunteer “mentors,” including student-athletes (there is a waiting list), who were practically the opposite of the high school Best Buddies—Penn State students who give part of their day to accompany their LifeLink charges to their classes and hang out with them at the HUB. (Penn State also runs a competent Best Buddies program.) Jamie’s first choices in LifeLink PSU seemed a little weird to me; they included classes in meteorology and criminal justice, and were influenced by his LifeLink classmates. But that was fine with us. It made sense for Jamie to attend some classes with other LifeLink students. Over the course of his next three semesters, though, his true interests emerged: tai chi and history, especially history. LifeLink PSU students don’t get grades or do homework, so I am not sure how much Jamie learned in those two years. But I can say that he understands concepts like the Iron Age and the Bronze Age, and events like the Birmingham church bombing that killed four young black girls in 1964. And I can report that thanks to his memory and his keen sense of spatial orientation, he is now able to navigate the sprawling Penn State campus by himself, and never had any trouble making his way from the HUB, when his day was done, to my office at the Institute for the Arts and Humanities, ten minutes away.

  In spring 2013 his time in LifeLink came to an end, and on April 25 we attended his graduation ceremony. This was not simply a matter of Jamie taking the stage briefly and being handed a diploma; it involved a seven-minute tribute to Jamie by his mentor and good friend Lindsay Northup-Moore, followed by another seven-minute speech by Jamie himself. (Lindsay’s speech, and half of Jamie’s, can be seen on YouTube.) “In true Jamie style,” Lindsay said, she would offer a list of the things she loves about Jamie. She proceeded to talk about Jamie’s determination, his powers of persuasion (no one else, apparently, could have gotten her to see Abraham Lincoln, Vampire Slayer), his memory, his love for food, his sense of adventure, his extensive vocabulary, his ability to make people laugh, and his stylin’ dance moves. For the final two items of her Top Ten list, Lindsay pivoted from the lighthearted to the deeply serious. Remarking on “how much he has grown” over his two years in LifeLink, Lindsay noted that “Jamie went from being a quiet, shy freshman in transition class to an active participant,” speaking increasingly freely and openly about his opinions and feelings. I had seen this too: as he entered his twenties, Jamie was getting significantly more mature, eloquent, and self-possessed. And then Lindsay closed with her “favorite” thing about Jamie, “his caring nature.” Calling him “one of the most sensitive and caring people I know, or I suspect that I will ever know,” Lindsay addressed him directly, closing with “I want to make sure that you, Jamie, know that you are an extraordinary young man. You never cease to surprise all of us with your abilities.”

  I admit that my videocam work that day was uncharacteristically shaky.

  There was another aspect to LifeLink, which Jamie loved as much as he loved LifeLink PSU: the LifeLink apartment. It is housed in one of the dozens of mushrooming apartment complexes in State College, and young people with intellectual disabilities, up through age twenty-one, can stay there in a four-bedroom suite for a week at a time with two roommates of the same gender and the supervision of a 24/7 life coach. The idea is to teach and enhance independent living skills, to encourage kids with intellectual disabilities to make their own budgets and do their own laundry and cook their own meals (with some help). In fall 2009, when Jamie was eighteen, Janet and I filled out the reams upon reams of paperwork necessary for an application (specifying, for example, what kinds of things Jamie can and can’t do independently or with minimal prompting, and what kinds of activity outside the apartment—from going to the apartment-complex gym to traveling around town on his own—we would and would not permit). And by Thanksgiving, we had just started to think about the possibility of turning in an application. Which is to say, we were not quite ready to think of Jamie being away from us for a full week.

  Suddenly, on December 1, we got a phone call: one of the residents of the apartment had gotten sick and gone home, and there would be only one person in the place through Sunday. Not wanting to leave that one young man alone (albeit with the usual coaches’ supervision) all that time, the LifeLink people called to offer Jamie a six-day stay. Jamie’s response was visceral: “Cool! Goin’ to LifeLink.” So was ours: “OH MY GOD HOW DO WE PACK WHAT DO WE DO OH MY GOD.” But Janet and I calmed down (a little), made arrangements to drop Jamie off at 8 p.m. (after dinner and a shower and a change of clothes), and began to put together his clothes and toiletries and necessary electronics, even programming into his (recently purchased and then rarely used) cell phone the numbers of his family members and afterschool companions. We met his roommate, a delightful young man Jamie had known for some time. And after the meet-and-greet and the bed making and the general moving in were done, we left Jamie to his own devices at precisely 8:45 p.m., Eastern time, December 1, 2009.

  As we were leaving the house for the fateful ride over to the apartment, Jamie, starting down the back stairs with his iPod, stopped and said, “I have to get my suitcase.” “That’s OK, sweetie,” I replied. “I’ll get it—it’s quite heavy.”

  “OK, sure,” Jamie shrugged, and then added in a singsong voice, to no one in particular, “What are parents for?”

  It was a rhetorical question, I think. But I have kept thinking about it ever since.


  After that initial visit, Jamie became more and more adept at being a LifeLink resident, and Janet and I—as you might imagine—came to realize that Jamie’s week-long stays could actually be good things for us, as well. We enjoyed one extended second-honeymoon week in New York in the summer of 2012, and I will always cherish that memory. But then, just as Jamie aged out of LifeLink PSU in the spring of 2013, he aged out of eligibility for the LifeLink apartment in the summer of that year. Jamie had prepared for this moment in the “transition class” Lindsay mentioned; professionals in special education speak of “transition,” whereas many parents tend to speak of “falling off the cliff.” For Jamie, all IDEA-related services would end on August 8, 2013. After that, free fall—and the search for employment.

  The first time I talked to Jamie about getting a job, he was only thirteen. That may sound absurdly early, but I thought it was a good idea to prepare him, gradually, for the world that would await him after he left school. So I told him how well he’d managed the younger kids of some colleagues who’d been to our house recently. “You really are very good with little kids,” I said. “You’re very gentle with them, and you play very carefully, and you always try to help them. You know, you might think about doing something like that when you’re a big man and you have a job—you might be a good helper someplace where they work with little kids.”

  “Michael,” he said with exasperation, “I’m going to be a Marine.”

  I was flabbergasted. “Excuse me? Did you say a Marine?”

  “Uh-huh.”

  Where did that come from? “You mean a Marine like a soldier?”

  “No!” he said, even more exasperated now. “A marine biologist.”

  One always has to wait for the other shoe to drop. As Jamie explained, he was thinking of Eugenie Clark, the famed University of Maryland ichthyologist he encountered in the National Geographic film The Sharks. Ambitious, I thought; but even at thirteen, Jamie knew the differences between seals and sea lions, he knew that dolphins are pinnipeds, and he knew far more about sharks than most people. And despite his speech delays, he could say “cartilaginous fish” pretty clearly. Perhaps he could work at an aquarium?