Michael Bérubé Down Syndrome: A Promising Future Together, p. 239-44 Hassold, T. J. & Patterson, D. (Eds.)

This material is used by permission of John Wiley & Sons, Inc. Jonathan H. Campbell, Permissions Assistant Copyright © 1998 John Wiley & Sons, Inc.

     I thought that by writing Life As We Know It, I was doing what I could for James. I think of myself as a writer and a teacher, and I'm accordingly torn between the conviction that my work makes a difference in people's lives and the fear that I'm utterly useless in the world. My first book sold 600 copies, almost entirely to university libraries, and is now useful mainly for killing large crawling insects. But my book on Jamie, I thought, might actually matter to people—Jamie not least among them. Since his birth I'd been struck by the relative invisibility of people with developmental disabilities in the general culture, an invisibility that is being remedied only slowly and fitfully. I wrote the book during a scary political time during which anti-government conservatives were crusading against the Americans with Disabilities Act and even talking about refusing to reauthorize the Individuals with Disabilities Education Act, so I worked with a sense of urgency that's probably pretty clear on every other page of the manuscript. And when, in the fall of 1996, I prepared for a national book tour in the middle of an election season, my hopes were as high as they could be. I worked on crafting my message into media-friendly sound bites like "we don't know what 'normal' is until we try inclusion first"; I chose passages for public readings of the book; I made up interview questions and answers for my "media packet." And whenever I felt that twinge that we weren't doing enough for Jamie—say, when I agonized that he still couldn't put on a pair of socks by himself—I could look at my book and say, "but at least I'm doing this...."
     How convenient this turned out to be for me: I could displace my personal worries onto my professional work, and my professional work would actually help to assuage my worries. Only too late did it occur to me that Janet didn't have the same mechanism. We'd talked about co-authoring the book, and of course she worked on it with me at every stage, but still, it didn't "solve" things for her the way it was doing for me. In an unexpected way, then, Life As We Know It became one more thing we had to figure out. Needless to say, that particular difficulty is specific to my family and my family alone. But what isn't specific to us is the emotional dilemma underlying our different reactions to the book: each of us, as it turned out, was silently trying to live up to (what we thought was) the other one's expectations, thinking all the while that we shouldn't confess to our feelings of failure or foreboding lest we damage the other's emotional equilibrium. So Janet wasn't allowing herself to speak freely because she feared, as she put it, taking the wind out of my sails; meanwhile, I was doing all I could just to match her incredible competence and compassion as a parent. Something like an emotional version of the famous O. Henry short story, "The Gift of the Magi."
     Of course, it could be much, much worse. We were caught in a strange cycle in which each of us admired the other's ability to cope, so much so that we sometimes just weren't coping. But many parents go through more difficult cycles than this; they withdraw, they become depressed or angry, they go into massive denial, they experience the entire range of mental and physical states to which we mortals have access whether we want to or not. There's a recent novel written by a brilliant writer who just happens to be a good friend—Galatea 2.2, by Richard Powers—and in it there's a family that looks a lot like mine: two children, the older one based on Nick and the younger one based on Jamie, and a single mother whose resemblance to Janet is remarkable. In Galatea 2.2, the father of this family has abandoned his wife and children because he couldn't deal with the disparity between his "gifted" child and his child with Down syndrome. When I finished thanking Rick for rendering this flattering portrait of me (and informing him that there's no significant increase in the divorce rate for parents with "disabled" children), I decided to take his book as something of a reminder that there are many ways in which one can express one's feelings of inadequacy as a parent, and that it's probably best to try to feel inadequate—since one can never fully insulate oneself from feeling inadequate—in the least destructive way possible.
     Easier said than done? Yes, but that's my point. As long as Janet and I were talking only to each other about Jamie, there was no way for us to break the cycle we were in. We couldn't work this one out by ourselves, because we were actually part of the problem. It was impossible, we've learned, to calibrate our feelings about ourselves and each other as parents of James without the help of a third party—and we strongly suspect that we're not alone in this respect. The third party doesn't have to be a therapist; he or she can be a close friend, a member of the extended family, a minister, or a mentor. More important, the third party doesn't have to be someone "private"—in the sense that he or she is in the family's private circle, or in the social sense that he or she works in the private sector. One of the reasons that public funding for disability services is so important and so necessary is precisely that public services can do so much to address the "private" difficulties of families, some of whose difficulties may indeed be intimately emotional and personal, and some of whose difficulties may more properly be said to be matters of public policy. Janet and I were (in this as in so much else) lucky: we had resources other than those provided by our local and state governments, services other than those provided by public disability services. Most families can't afford the luxury of a therapist—or long lunches in New York restaurants, either. And for most of Jamie's first four years, that was our condition too: we just didn't have the time or the money to stop and check on ourselves, and so consulting with others, be they therapists or professionals at our local Developmental Services Center, seemed like an indulgence. But when two parents are orbiting each other, as couples usually are, it's hard for either parent to get a good idea of who's doing what or why. Motion is relative, after all, and sometimes, if you want to figure out what's going on, you need the perspective of someone who's not in your orbital path, and can see your world from a relatively stable frame of reference.

     In physics, it's fairly easy to predict orbits when you're dealing with only two objects. For low speeds, Newton's laws work just fine. Three objects orbiting each other, however, will produce mechanical mayhem: it's called the "n-body problem," and nobody can figure it out. Nobody even wants to try. Fortunately, however, the third body in our system—Nick—isn't worried about how well he's doing. He's doing very well, thank you. He has an identity as Jamie's brother, but he also has a life of his own—plenty of playmates; a fondness for computer games; a deep fascination with history, geography, and the configuration of the world; and a very interesting, gradually emerging aesthetic sense that he applies to music, movies, clothes, and buildings. Adolescence, I know, is right around the corner. I can't wait for him to meet other siblings like himself, though, because he's never exchanged notes with another child who has a brother or sister with Down syndrome. Right now, he's serving James as a guide, a shepherd, and a role model, and he seems pretty comfortable in all three roles—each of which I'll explain briefly.
     Nick as role model: this is probably the most predictable identity for an older brother, regardless of whether the younger sibling has Down syndrome. But because Jamie is Jamie, there's not a lot of competition between Jamie and Nick. Certainly Jamie draws parental attention away from Nick, but that's not always a bad thing; and certainly Jamie sometimes angers or upsets Nick, but it would be odd to expect otherwise. Every once in a while, on the rare occasion when Jamie demolishes one of Nick's elaborate Lego structures or exits Nick's computer game, I have to console Nick; but I always remember to remind him, "Jamie didn't mess up your stuff because he's your little brother with Down syndrome—he messed up your stuff because he's your little brother. All little brothers are required by law to mess up their big brothers' stuff a certain number of times per year, and Jamie's just abiding by the rules." In partial compensation, James admires Nick completely and emulates him in everything, from basketball to tae kwon do to drawing to climbing trees. Few things motivate Jamie so emphatically as the desire to be like Nick (it's our own personal family ad campaign), and Janet and I are not shy about exploiting this to full effect. We've dutifully pointed out that Nick eats lettuce to get strong, and that Nick puts on his own pants; this past spring, as we got Jamie ready to start kindergarten in the fall, we noted that he took real delight in the thought that he would be going to a big school like Nick.
     Nick as guide and shepherd: we've always been amazed by how watchful, how observant Nick is. Nick cautions Jamie—sometimes gently, sometimes sternly, as circumstances dictate—not to put balloons in his mouth, not to run unescorted through the parking lot, not to growl gutturally when he asks for things. Nick is solicitous, and just by being Nick he shows Jamie how to be solicitous too. Best of all, Nick shows other children, by example, how to deal with Jamie: how to listen to him, how to play with him, how to shoot baskets or work the video games, how to include him in the gang. For the most part, Nick does this simply by treating Jamie like a nice little brother, thereby letting all the other kids know that there's nothing "special" they have to do in order to play or talk with James—just listen carefully, and treat him as you would any younger child who needs the basket moved a little lower or the video game set a little easier.
     How different our family would be if our first child had Down syndrome and our second did not; how different it would be if Jamie had two, three, four siblings—or none. Every family configuration produces different dynamics, and every family configuration is bewilderingly complex. The more I talk with other parents of children with disabilities, the more I realize how many subtle differences underlie our similarities, and vice versa. Some parents need help with the child who keeps throwing car keys down the toilet; some parents need help with the nondisabled sibling who feels burdened; some parents need help with feelings of failure; some need help with feelings of denial. Sometimes the children are far apart in age, sometimes less than a year apart; sometimes the child with a disability is the oldest, watching his or her siblings grow up more quickly; sometimes the youngest, getting more developmentally remote from siblings each year; sometimes there's more than one child with a disability, or more than one disability.... And sometimes I think the only advice that's equally applicable to all of us is the advice that we should seek advice.
     But whenever I think this way, I remember something Jamie has taught me over the past year. It was during the spring of 1997, Jamie's last season at First United Methodist daycare before he would start kindergarten in 1997-98, and the occasion was a classroom game in which each of the children told their teachers what they wanted to be when they grew up. From every child except James, the list of occupations bore out the Lily Tomlin joke that if we'd all grown up to be what we said we wanted to be at the age of five, we'd live in a world populated by cowboys, firefighters, and ballerinas. When the class got to James, though, the teachers weren't even sure that my little boy would understand the question, let alone come up with an intelligible answer. Still, they politely asked him, last among the Preschool kids, "and what would you like to be when you grow up, James?"
     Later that day, Janet and I were told that James had answered the question immediately, and with just one word.
     Big.
     To their credit, James' teachers were duly astonished: not only had James understood the question, he'd come up with an answer that changed everyone else's understanding of what the question meant. All of a sudden, in other words, that stock query, what would like to be when you grow up, a question no adult expects a five-year-old to answer seriously, had some real substance to it. For what had Jamie said, by saying "big"? That he wants to grow up. That he wants to be healthy. Perhaps even that he wants people to treat him well. In his odd way, Jamie had readjusted his classmates' and teachers' understanding of the parameters of the question. And that's not just my interpretation; that was their interpretation. Janet's interpretation (and, henceforth, mine) is this: precisely because Jamie answered the question so literally, people saw him differently. In saying he wanted to grow up to be big, James was no longer the "special needs" child; on the contrary, he became the normal child, the universal generic Child. Think about it for a moment. What Jamie said is something almost all children can say or sign or hope, whether they were born in Australia or Algeria or Albania or Alabama. Janet and I have seen such moments before, moments in which Jamie is not only irreducibly and idiosyncratically Jamie but also, somehow, representative of children everywhere. And in such moments we realize how Jamie has helped us to see that all children have fundamental needs that we share in common as humans. Of course, some children have "special" needs, and we wouldn't deny it for an instant; James himself needed a good deal of physical therapy, occupational therapy, and (most obviously) speech therapy just to get to the point at which he could tell adults he wanted to be big when he grows up. But the general lesson, I hope, should be clear—that whatever our differences and whatever our family dynamics, it's our job to help make a world in which all our children can grow up to be "big."

When Jamie Bérubé was born in 1991, his parents knew little about Down syndrome. As the sought to understand exactly what Down syndrome is, they learned not only about the current medical and social treatment of developmental disabilities, but also the history of how society has treated children like Jamie. Michael Bérubé published a compelling story of his attempt to make the world more accepting of his son, Jamie, in 1996 in Life As We Know It: A Father, a Family, and an Exceptional Child. Bérubé follows up his critically acclaimed work with this chapter. Michael Bérubé is an English professor at the University of Illinois at Urbana-Champaign.