Life as Jamie Knows It

by Michael Berube

  But Shelby was horrified that other children would think such things of her friend. I hastened to reassure her. “Well, that’s because you know Jamie, and he is your friend,” I replied. “But these kids didn’t know what to think, and they didn’t know anything about kids with Down syndrome.”

  “I only know a little about Down syndrome,” said Shelby, with a furrowed brow. “But I know there’s no one like Jamie.”

  Now that, I believe, is a valuable lesson for any kid to learn at school.

  For his part, Jamie learned a great deal as well: He began reading in second grade, thanks largely to Ms. Borgeson, his teacher, and Ms. Avellone, Ms. Hiser, and Ms. McCabe, the school paraprofessionals. He learned to do two-digit addition and subtraction, though he clearly preferred addition; as he told me one evening when I suggested we work on subtracting and borrowing, when you add numbers together, “you get more.” His attitude was cheery and his sense of humor infectious, but every once in a while he had trouble following directions, either because he did not understand the directions or because he just didn’t feel like following them (imagine that, in a child). So his teachers, Janet, and I devised a system: When Jamie followed directions and did things right, he would get a duck—a little yellow-paper tag in the shape of a duck that would be pinned on the wall next to his name. If he got all his ducks in a row (I believe three was the magic number), he would be rewarded with an activity he enjoyed; if he disobeyed or fussed, he would lose a duck. Jamie liked this system, though we did get one report of his attempt to game the system by replacing one of the ducks he had lost when he thought nobody was looking. (Penalty: loss of extra duck!)

  Many parents have told me IEP horror stories—of struggling year after year with school officials and school districts that cannot or will not provide the funds for the support their children need. For some parents, the annual IEP meeting is a hassle followed by a lawsuit followed by endless aggravation. We were extremely fortunate in that until Jamie reached middle school, we avoided all hassles and lawsuits, as well as most forms of aggravation. I wondered if our status as college professors had something to do with it: K–12 schools seem to be one of the few remaining institutions in American life in which people hold college professors in esteem. Certainly, Jamie’s teachers approved of our active involvement in his education, regardless of whether Janet and I were professors. Whatever the reason, our IEP meetings were almost always cordial, collaborative affairs in which everyone involved sincerely tried to figure out what would be best for Jamie and what academic goals would be realistic for him. And I was always keenly aware that we were living in reasonably well-funded school districts, whereas our fellow Americans who lived in the rural districts surrounding our college town were dealing with schools that had to hold bake sales simply to turn on the lights in the morning. I spent some time in Life as We Know It inveighing against the injustice of funding public schools out of property taxes, an absurd arrangement that I described as “the ideal scheme for setting the elderly against children, singles and childless couples against parents, homeowners against tenants, and homeowning parents of children in private school against everyone else.” I am dismayed to note that in the twenty years since I wrote that passage, nothing has changed in the world of education funding. And so parents of children with disabilities who live in reasonably well-funded school districts have access to resources and opportunities unavailable to parents of children with disabilities who live twenty miles away, or across the river, or in the blighted areas of our nation’s cities. The same is true of parents of children without disabilities. It is almost enough to make you believe that all talk of “progress” is delusional.

  But for me and for Janet, the IEP was not a hassle, and our school districts—both in Champaign and in State College—met Jamie’s needs: a paraprofessional and some pullout speech/occupational therapy. Strange as it may sound, the most painful aspect of Jamie’s early school career, for me, was the annual holiday concert. Even at the age of eight, Jamie was a pure ham at home, where he would put on The Wizard of Oz soundtrack and launch into a rendition of Ray Bolger’s brilliant dancing as the scarecrow, watching himself all the while in a mirror or the reflecting surface of the oven door. But onstage, with a hundred other children surrounding him, he invariably clammed up, barely moving his lips to the words, coming in two beats late on every bit of pantomime that accompanies “Rudolph the Red-Nosed Reindeer.”

  Why did I care about this? Many parents suffer through their children’s holiday concerts, though only Homer Simpson is so honest as to wail, “Oh, how many grades does this school have?” As long as Jamie was learning how to carry the ones when he added 149 and 373, did it really matter how he looked during the holiday concert?

  For me, it did matter—because it mattered how other parents and grandparents perceived Jamie as part of their school community. And for most of them, the holiday-concert moment was their only impression of Jamie. I didn’t want them to think that Jamie’s performance in the holiday concert was an accurate representation of Jamie’s relation to the curriculum, or of Jamie’s relation to his nondisabled peers. I didn’t want anyone to think that Jamie sat in a corner drawing circles or playing patty-cake while the other kids were learning geography. I wanted them to know that by third grade, Jamie had learned the names of all fifty states, thanks to that formidable cataloguing memory of his.

  His teachers wanted the same thing for him, and they were aware of the holiday-concert problem. So in third grade, the school’s music instructor, Ms. Goodwin (Jamie still remembers her name and filled in this detail for me), made a tape of all the holiday-concert songs for him, so he could practice at home. Jamie loved that tape. We still have it, somewhere in the recesses of the house where ancient audiotapes reside. He played it in the car time and time again. He bounced in his seat and sang along eagerly, as best he could. And when at last the dreaded day of the holiday concert arrived, there was Jamie, front and left of center, standing lost and bewildered, not singing a word.

  When we moved to Penn State, we had another option—something very rare for academic couples. Stanley Fish, the brilliant literary theorist, political contrarian, and master wheeler-dealer who built the English Department at Duke University in the 1980s and 1990s and then decamped to the University of Illinois at Chicago, had gotten wind of the fact that Penn State had made job offers to Janet and to me. Being a master wheeler-dealer, Fish put together a dual offer that exceeded Penn State’s, and that held out the promise that Janet and I could move to a major city and be a part of a major department-building enterprise. Fish had already hired some of the leading figures in disability studies, such as David Mitchell, Sharon Snyder, and Lennard Davis. UI-Chicago had a PhD-granting program in disability studies—the oldest one in the nation and one of the few in the world—housed in the College of Applied Health Sciences.

  So why didn’t we take that offer? Janet, who wanted very much to move to Chicago, looked into the schooling options for Jamie. Not a single district in the city could offer real inclusion—whether because of chronic underfunding, systemic mismanagement, or lack of interest on the part of Chicago public school administrators, we couldn’t determine. Our friends in Chicago told us to look at Oak Park, a famously cool-liberal-progressive neighborhood just west of the city. We looked at Oak Park: their schools were cool and liberal and progressive, and they had no history of including kids with Down syndrome. Finally we asked people in the disability community, who told us that the only truly inclusive school district in the area was in Wilmette. Wilmette! Up to an hour from campus, somewhere north of Evanston, the home of Northwestern. “Seriously,” I said to Janet, “why don’t we just commute from Milwaukee?” It seemed to me a devil’s bargain: I would get to work in a PhD-granting program in disability studies, but my disabled son would be consigned to some special ed arrangement from the 1960s.

  There were many reasons we moved to Penn State. One was that Janet’s sister Cynthia had been diagnosed
with breast cancer, and we wanted to be closer to her and the rest of the Lyon family—six hundred miles closer. But another critical reason—which, we found, was intelligible only to a small subset of our academic colleagues—was that the opportunities for Jamie in the State College school district were vastly superior to anything Chicago, and even Stanley Fish, could offer him.

  Jamie’s departure from Champaign was bittersweet. His teachers and classmates at Westview made him a wonderful keepsake book, full of pictures and well wishes. His new classmates at the Corl Street Elementary School in State College welcomed him warmly, and his fourth-grade teacher, Mr. Hockenberry, invited me to do a Q-and-A with the class about Jamie and about Down syndrome. During that session, I mentioned in passing that Jamie had memorized the names of all the goaltenders in the NHL. One girl spoke up: “My dad is the Penn State hockey coach and even he doesn’t know all the goalies in the NHL.” “See,” I said, “that’s one of Jamie’s strengths. On the other hand, when he told you all that he has eighteen monkeys at home? Uh, that’s not true.”

  Corl Street was a good place for him, with great teachers and paras. Jamie has forgotten many of the names of NHL goaltenders circa 2001–02, but he remembers all the teachers and paras from those years, especially young Ms. Pontano, who made him a videotape upon her departure from the district, and Ms. Poorman, who provided him with gentle reminders not to touch everything in the hallway. (This gave Jamie’s parents the useful mantra “Be mature just like Ms. Poorman says.”) And then, after three years at Corl Street, we were faced with a decision: Mount Nittany for middle school? Or Park Forest?

  OK, it was just your ordinary American parental dilemma, the choice between Middle School A and Middle School B. But it wound up having some consequences for Jamie, and these days I think of it as the one big mistake we made during his school years. We were persuaded to go with Park Forest because (as his teachers and aides informed us) most of his cohort from Corl Street would be going there, even though we had gotten a much better impression of Mount Nittany. Not until three years later, in his final year of middle school, did we realize that Jamie was allergic to something in the building at Park Forest, something that kept his nose runny all day long. Worse still, we ran into the only unhelpful paraprofessional we ever encountered, a sullen young woman who may well have been clinically depressed—and who certainly didn’t like working with Jamie.

  When Jamie reached seventh grade, we faced our first inclusive-education crisis. Despite his facility with math—he was now able to do two-digit multiplication with ease—he was failing to grasp the concepts of “area” and “perimeter.” In other words, he could find the area of an eighteen-by-twelve-foot rectangle when someone wrote out “18 × 12,” but he had no idea what the concept was. He wasn’t paying attention in science class, where his paraprofessional was (sullenly) doing much of his work for him; and he didn’t seem to get French at all. At the beginning of the year, we had asked for Jamie to be included in those three “regular” classrooms, on the grounds that he was good at math, fascinated with the natural world, and exceptionally curious about languages. We were also deeply skeptical of some “special ed” classes that Janet derisively referred to as “pudding pops,” in which the children were given make-work tasks and intellectually challenged rarely if at all. When we discovered that the next item on the math agenda would be the area of irregular shapes, we agreed to bail out. Janet and I had discussed this possibility when Jamie was younger, wondering when it would be more useful for him to know how to shop, make his bed, and use public transportation than to know the formula for the volume of a cone. That was our way of marking the difference between “life skills” classes and “regular” classrooms, and besides, who remembers the formula for the volume of a cone, anyway? (I once asked this question aloud in a forum on inclusive education. Unfortunately, I did so in an auditorium full of high school teachers, many of whom shouted out variants of “one-third height times pi r squared.” Tough crowd, I thought.)

  So we dropped “regular” math and settled for a class that would simply keep Jamie in practice with multiplication and division. But we pleaded for French and science. “I know he’s not getting it all,” Janet said to his science teacher. “But he truly loves learning about the world around him, and we don’t want that world to close in on him . . . just yet.” This appeal almost moved the science teacher, Ms. Pelligrini, to tears (Janet was near tears herself), and she eventually became the Hero of Seventh Grade, agreeing to keep Jamie in her class and to adapt the lessons and exams for him. This meant, as the year unfolded, that Jamie learned about the circulatory, respiratory, gastrointestinal, nervous, and cardiovascular systems of the body—information he retains to this day. He learned about cells, which helped him understand what it means for someone (like his aunt Cynthia) to have cancer. He learned about chromosomes, including a curious moment of illumination in January 2006 when the class turned to the details of human reproduction, and he learned that most humans have forty-six chromosomes but that people with Down syndrome have forty-seven. “Wow, one more,” he said, intrigued and a little bit impressed. I wonder if he also thought to himself, You know, that explains a lot. As for the “adapted” tests, Ms. Pelligrini required that Jamie be able to name only half the parts of a cell and half the GI tract in order to pass his exams. I wondered, When, between the ages of twelve and twenty-one, do the legions of his nondisabled peers forget about vacuoles and mitochondria? Probably around the same time they forget the formula for the volume of a cone.

  Ten years later, I can report that there are at least two major school lessons Jamie retains to this day. One has to do with the structure of Earth—crust, mantle, and core. Since Jamie already knew that apples have cores, I decided to flesh out the analogy: the apple skin is like Earth’s crust, the apple is like the mantle, the core is like . . . the core. But what made this memorable for Jamie was that it reminded him of the “onions have layers, ogres have layers” bit in the first Shrek movie, in which Shrek is trying to explain to Donkey that even ogres are capable of complex and contradictory emotional states. Thank you, Shrek.

  The other lesson involves more silly-Dad-running-around-a room. Trying to explain the various states of matter—gas, liquid, solid—I adapted Ms. Pelligrini’s explanation of molecules: I curled up on the couch and told Jamie I was a very cold solid, and then told him to put a “fire” on me by touching me. This caused me to wiggle and wave my arms because I now had more energy and was turning into liquid. This entailed a side lesson on how liquids can spill but solids cannot. Then he put more fire on me and made me a gas, hence the running around the room. “When matter gets hotter, it has more energy,” I said, “and all the molecules jump around and get excited.” Thus, ice, water, steam. He knows the drill. He does not have to remember the terms “vaporization,” “condensation,” and “evaporation,” so far as I am concerned—he just has to know solids, liquids, and gases. Though some further explanation was required when Jamie asked why gas (gasoline) was a liquid and not a gas.

  Madame Eid, the French teacher, had never had a child with Down syndrome in her class. She told us that Jamie did not speak when he was called on and did not understand how to write complete sentences in French. “He doesn’t write complete sentences in English, either,” I replied. “And he’s shy about speaking up. But he already knows the days of the week and the months of the year, and he’s beginning to understand about time. We don’t want him to slow down the rest of the class. So if it’s possible for him to take the class pass/fail, we’ll do everything we can to help him.”

  I turned out to be somewhat wrong about time. In seventh grade, Jamie never did manage to understand why the French perversely insist on calling 7:40 “eight hours minus twenty,” though I secretly agreed with him that sept heures et quarante would get the general idea across even if it was marked “wrong” on the test. And even though he learned what voyager means, he could not remember that tu voyages has an “s” even tho
ugh je voyage and il voyage do not. But he negotiated the hyphens and apostrophes of qu’est-ce que c’est with élan, he mastered the form of est-ce que tu?, and he turned out to be a whiz with adverbs—getting them right quelquefois at first, then souvent. (Though quelquefois remains his favorite.) His pronunciation improved quickly, too—no small thing for a child who didn’t learn to read fluently until he was eight. It was hard enough for him to master English vowels and silent letters the first time around, let alone foreign imponderables like ils aiment and les yeux. And in December 2005, he came up with his first bilingual pun: in the middle of homework, upon writing that the clock read huit heures, he turned to me and sang, “Huit heures meter maid.” I laughed delightedly. (If you don’t get it, you are probably one of the six people in the English-speaking world who has not heard Sgt. Pepper.) I thought, yes, he still has to learn how to shop and make his bed and take public transportation. But on the way there, it’s OK with me if he has some fun with the texture of language.