The Boy in the Moon: A Father's Search for His Disabled Son

by Ian Brown

  And that’s only the bureaucracy dedicated to the disabled. The non-disabled bureaucracy is another galaxy altogether. At the age of five, Walker begins to attend Beverley Junior Public School—a famous local institution dedicated entirely to intellectually disabled children, where the ratio of students to teachers is a mere three-to-one. The school is a bright, airy space designed for children who can’t see out of normal windows or walk easily through a standard door. Its effect on Walker’s confidence is instantaneous: within a month he progresses from needing to be carried from room to room at school to walking on his own. But within a year, the provincial government announces its intention to close the school. The school is only for the disabled—a “segregated” facility, in the parlance of disability education—and doesn’t conform to the province’s policy of supporting (much cheaper) “inclusive” schools, where, theoretically, the disabled learn alongside the abled, and each gets used to the other. Inclusive schools are often excellent, and much preferred by a certain generation and political ilk of educators. But even those educators will admit integration isn’t for everyone, that dedicated facilities can be more helpful for children as delayed as Walker.

  But the provincial government is against Beverley School for bigger reasons, as well: the school doesn’t conform to the Ministry of Education’s arcane square-footage rules. To justify cutbacks to the province’s education budget, the minister of education has ruled that schools have to support a certain number of students per square foot of floor space. This allows the Conservative government to build newer, more “efficient” schools in the suburbs, where their political support is, and shut down schools in the downtown cores of larger cities, where the irritating liberals tend to live. Beverley doesn’t conform to the square-footage rule because its handicapped students need more space, for their wheelchairs and foam mats and ventilators and light rooms and IV stands and wagons, and so the institution is slated for closure. Public outrage eventually forces the government to keep the school open, but the government’s priorities are clear: the disabled don’t vote, and so don’t deserve much individual attention. They don’t fit the formula—any formula.

  We cobble together what Walker needs regardless. Among Olga, ourselves, respite care, the university students, ad hoc programs, the odd agency, school and luck, we manage to survive ten years. The routines become more familiar, but the stress seldom abates. We can’t save any money, we can’t make any real plans, we can’t travel farther than a car or a stroller can take us (now that Walker is bigger, planes are dangerously harder to manage), or anywhere there isn’t a good hospital nearby. We try to live as if everything is normal. But the routine is as crippling as the position I have to sleep in with Walker. And the future looks dreary and spare. The money we spend on Olga, the $12,000 a year we spend on formula alone, the money we spend on diapers—all of it could be paying for Hayley’s university education. She gamely says she’ll try to win a scholarship instead, but she is already an anxious child, the fallout of living in a house where something is always about to burst. I dream incessantly about money, about having misplaced my belongings, about being chased and gunned down.

  And then, suddenly, there is a glimpse of sky in the overcast future. In the fall of 2003, we’re invited, once again, for Thanksgiving weekend to the cottage of our good friends John and Cathrin. Our steady companions, Allan Kling and Tecca Crosby, as well as another couple, Laurie Huggins and Colin MacKenzie, old pals, are guests as well. We don’t get to talk to them much, however, because Walker is in a terrible state. He never stops crying, never stops hitting himself, never stops requiring the attention of not one but two (and sometimes four of five) people, for three solid Canadian autumn days.

  Two weeks later, after intense lobbying from Tecca and Cathrin, Laurie calls me—me, not Johanna. Laurie knows where she’ll find the colder, more receptive heart. “I have someone I want you to meet. A woman who’s an advocate out of Surrey Place,” she says, referring to a local institute that specializes in the study and treatment of autism. “I think she may be able to help. Because you need it.” To Laurie’s fresh eyes, our lives—Walker’s and ours—are a nightmare.

  An advocate, again. The woman will come to the house, suss Walker out, see what we’re like, investigate our lives. If our “needs”—the word wears permanent quotation marks in my mind—are great enough, she will try to help us find the corner of the special-needs world where Walker will be able to stand and live and be. But I don’t hold out much hope.

  April 4, 2004

  We now have an advocate for Walker’s cause. Her name’s Margie Niedzwiecki. “We’ll begin to make initial applications for long-term care,” she said the first time we met, just before Christmas of last year. I must have looked shocked. “You don’t have to make that decision now,” she quickly added. “Think about it.”

  Any such application will take years, in any event. To my surprise, the mere fact that Walker is both mobile and dependent makes him a complex case. There are homes for medically fragile kids, but Walker might zoom around turning off their respirators, just for the fun of pushing the buttons. Then there are places for intellectually compromised kids, but they can’t handle Walker’s fragility, his small-boyness.

  The shortage of places of either kind is epidemic. Every month in Toronto alone, 2,400 disabled people are looking for a place to live among seventy-six group homes. Some wait eight years. Those number seldom change.

  Our best bet, Margie says, is to get help from a new branch of an established social service provider that specializes in “children who are unusual and hard to serve.”

  I’m sickened by the idea of Walker living anywhere else, but my guilt is by now a luxury. We must act. He can’t be alone for even a minute, twenty-four hours a day. Eventually he’ll have to move. Margie says it’s a good idea to begin the transition early. At eighteen, it will be too hard.

  The first visit takes place in our living room. Margie’s older than us, maybe early sixties, and tall, with shoulder-length grey hair. She is extremely calm, and listens about ten times more than she talks. She doesn’t use social services jargon, which immediately puts her in my good books. Even Johanna agrees to sit and talk to her about long-term care—a surprise.

  “Walker responds to love,” Johanna tells Margie. “We want him to go somewhere where they love all of him, not just some of him.”

  But she doesn’t mean it. Like me, she doesn’t want him to go anywhere at all.

  My father and Walker have something, some indefinable thing, between them. The old man’s in his nineties. He still goes to work, still performs fifteen minutes of calisthenics every morning, but he feels his weakness, and he hates it. He gave up his car at the age of ninety-three, after hurting his neck, and still thinks he’s going to drive again. It won’t happen, but the car is his great equalizer: he can no longer walk as fast as some people, but in a car he’s the man he was. His name is Peter; his second name, Henry, I gave to Walker.

  I drive out on weekends to help my parents. They live alone in a small house by a river, the last remnant of country land on the fringe of an omnivorous suburb. He needs me and my car for errands. The barber, the liquor store, various recycling drop-offs, the grocery store, the hospital for weekly visits to have my father’s varicose veins wrapped, keeping my mother happy—these are his pleasures now. He’s desperate to stay mobile, hence the three-act exits from the car: door open, legs swung to the side—“Can you manage?” “Yes, yes.”—the arms spread to the sides of the door frame, as if he were about to parachute to the distant ground from the bay of a Cessna. The rock back, the catapult up and … out! Steady! Counterweight to prevent the pitch forward! Has he … yes! Hurrah. The human slingshot, enacted merely to fetch milk or pay the bills at the bank—one of two banks he and my ninety-four-year-old mother use, so as not to risk keeping all their money in one place.

  My father’s skin is as vulnerable as onion paper in a bible. I used to clap my arm around his sh
oulders when we met; he flinches if I forget and try it now. I could dislocate something. Dislocation is to be avoided at all costs, in all its forms. Routines cannot vary—the bank, the empties, then the grocery store, in that order—and neither can the route. “Why are you going this way?” he asks in the car, as if I had questioned the existence of carbon molecules themselves. He arrives forty-five minutes early for scheduled appointments. He carries a handkerchief to wipe spittle from the left side of his mouth when he thinks I’m not looking. Old age isn’t just something he dislikes: he’s personally offended by it. His mood is altered, slightly peevish. As his strength has failed, so has his famous reserve: he’s crabbier now, except with Walker. They seem to understand each other’s frailty; they have patience for each other.

  Each time they meet, the same thing happens. The boy stands in front of the old man, and my father holds his hands and looks into his eyes. “Hello,” he says. They are both smiling. My father knows what to do without ever having been told. “Hello there, Snodgrass.” As he used to say to me, and to my brother. Then Walker climbs into his lap and doesn’t move for twenty minutes. Walker recognizes him, I don’t know how because he doesn’t see his grandfather often. It isn’t that my parents don’t like him; they simply can’t take the worry. They send him cards on his birthday and ask us to buy appropriate presents at Christmas, and they ask after him every time I visit, but the chaos of Walker coming to their house and aiming straight for a vase of calceolaria on my mother’s antique game table—no, that is not relaxing. His nose alone can drive my germ-warrior mother to distraction.

  She loves him, there is no doubt of that. She—her name is Cissy—loves him like a thing in nature, like her clematis plant or her roses or the river at the foot of her garden, as if he ran in her veins as a thick, normal residue. It’s the farm girl in her, the labourer who takes nature as it comes. But the farm girl—stout, strong, brave, even fierce—is also intimidated by his scientific needs, by his tubes and doses. She is afraid she will hurt him more. The day I told her just how disabled Walker would be—this was after our trip to the children’s hospital in Philadelphia, after we learned his reading and many other abilities would never progress much beyond those of a two-or three-year-old—she was sitting on the small love seat in the television room of her impeccable house. She looked at me, her hands in her lap, expressionless, then she shifted to the edge of the seat.

  “Well, we’ll just have to love him as he is, then.”

  Not a gift she extended my way, when I was growing up: perhaps Walker has made her more tolerant. (If so, he’s a miracle worker.) It’s not much of an answer: We’ll just have to love him as he is. But it is the only answer that is always there, waiting. My mother has a talent for striking the flinty bottom of the truth.

  My father, on the other hand, is his grandson’s friend. They sit hand in hand. If Walker whimpers, he will hear a brisk and nautical “Come on, now!”—my father’s years as a lieutenantcommander in the Royal Navy called back to service. It often works. The grandfather and the grandson are content to wait with each other. Maybe they are waiting for the same thing—but what is it? That is the sort of thought you have when you see them. This man who became me who became Walker. That stumbling, that hesitation, that indecision—the old man’s, the boy’s, and mine.

  My father is not an emotional man: he was sent to boarding school in 1918 at the age of four. His favourite brother, Harold, died on a ship in battle; another brother left home, was never heard from again; neither is ever discussed. But Walker softens him. The older my father gets the truer this is. He sees the broken boy, and begins to understand that power isn’t all he thought it was cracked up to be.

  And now I am preparing to put his grandson in a home.

  Mid-April 2004

  Another meeting at Surrey Place, a Toronto institution that specializes in autism, where a behaviour therapist has been working with Walker.

  These meetings are always the same: playroom, indoor-outdoor carpet, pastel walls, half a dozen smart women with clipboards, all between thirty and fifty, all dressed in denim shifts or loose-fit stone-washed jeans with elasticized waists—good for working on the floor with children who drool.

  Today’s meeting is about Walker’s head-bashing. There’s always new lingo to be harvested.

  “So it’s intrinsic?”

  “He is intrinsically motivated. He’s obviously getting something out of it.”

  “His motor skills aren’t fine enough for sign language.”

  “Pointing may be better for low performers.”

  For Walker to communicate by pointing, he needs ten sessions of “pointing instruction.” It’s a new “implementation,” requiring new “intake” and therefore new forms.

  One of the therapists tells me she spends half her time negotiating the bureaucracy of the rehabilitation world. But without these women to light the tunnels, I’d have succumbed years ago.

  The behaviour therapist isn’t encouraging. “The way to stop a kid like this from hitting himself,” she says, “is with food and toys. But Walker just doesn’t care about that stuff.”

  Back at home, Johanna is shaken. “That’s when I thought, boy, they don’t know anything. I see now: No one’s been helping us, because no one can.”

  April 28, 2004

  Six months in. Our advocate, Margie, introduces us to Lisa Benrubi and Minda Latowsky, the guts of Walker’s new special-needs team. Margie has been working on Walker’s case for six months. Lisa’s the boss.

  The three of them came by the house and sat in our living room, and listened to the story of Walker, so far. We know how to tell it. Unlike doctors, Lisa and Minda and Margie actually make eye contact. They seem to hear us, too. “How have you done this for ten years?” Minda asks—quite genuinely, it seems. Johanna cries, pretty much start to finish. I choke up myself, have to blow my nose. Afterwards, I apologise to Margie. “No,” she says, “it’s good you cried.”

  Minda will be our caseworker. Until this program came along in Ontario, a developmentally delayed child had to become a ward of the state—legally relinquished by parents to the Children’s Aid Society—to qualify for a group home. Under the new program, we will still be Walker’s parents—a relief and a requirement for us. That it might ever have been otherwise shakes me, makes me see the dark magnitude of what we’re doing. We’ll make all the decisions, but his care will be spread around. Minda, my new god, refuses to refer to any potential group home as “Walker’s house.” She says, “It’ll be your house too.”

  The real problem is structural. Until recently, no one—certainly no part of the government-funding apparatus—was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until twenty years ago, children this medically complex didn’t exist. They didn’t survive. Hightech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level.

  And Walker is an especially needy example of the new human strain. There are high-quality residential homes but they typically have only 10 to 12 beds. At $250 a day—24-hour care, shelter, food, transportation—funding is limited and based on need. The contraptions alone are bank-breakers: Tumble Forms Feeder Seat, $729; BreezeLite helmet, $129; veil bed (for safety), $10,000. It took us nearly three years to find the money for the one we have at home for Walker, and we only managed it in the end with Margie’s help. Meanwhile, I can qualify for a $500,000 mortgage in twenty minutes. “What I’d really like,” Johanna said after they left, “is for them to give us the money, so we could have all the 24-hour care he needs, but at home.”

  I don’t agree. I’m not sure a miniature hospital in our house would be an improvement.

  But Johanna claims she has had a Walker revelation. “Sometimes it’s not a choice between right and wrong,” she says. “Sometimes it’s a choice between bad and slightly less bad. That was a revelation to me
—that some things are unfixable.”

  She may be coming around.

  What was happening to our marriage? Many days it felt like a man with a lingering sickness he didn’t know he had, getting weaker and thinner, but turning up for work every day nonetheless.

  “We ask so much of each other, taking care of Walker,” Johanna said one morning, explaining our mutual bad mood to me, “that when it comes to looking after each other, there just isn’t anything left.”

  Estimates of the number of marriages that fail due to caring for a disabled child range from 60 to 80 percent. The ones that do make it through, according to other studies, are that much stronger for the challenge. I have no idea whether any of the research means anything. In our case the grit of resentment lay like a fine dust over everything. But the prospect of leaving each other was unthinkable: there was no way we could care for Walker if we didn’t do it together.

  With our nights divided, we were roommates as much as husband and wife. I saw Johanna in the house in the morning, carrying diapers and feedbags and heading out the door to appointments, her arms full of the sleepy boy, and at night again as she jogged him on her knee or held him away from Hayley’s homework or spritzed formula into his G-tube, or (in the delicious moments when he was asleep) stretched across the pine table in the kitchen, her cup of tea at her side, stealing time with the newspaper (which of course I resented because I had not had time with the paper; just as she resented it when our roles were reversed). Her tea: I thought about that a lot when we were too trampled to talk, the way she reheated the cup over the course of a day, kept it by her side always, like a salve or tonic that kept her going. I became a student of her dressing gowns: the long kimono I bought her at a craft fair, the turquoise Japanese sweeper, the tiny silky one in the summer, the black all-purpose cotton she wore when winter chilled the house. My wife, that ancient word; the mother of my children, the mother of Walker. (There was the sourness again. She wanted a second child. I realize I was there at that moment of conception, but that didn’t stop me from blaming the body that produced his body.) Johanna saw me from the same distracted, victimized distance: she worked at home, whereas I did not. I had a chance to slip away every day. She never escaped the burden. “She does everything,” I once heard a friend say at a cocktail party, after someone asked how we managed. I resented the idea, because I knew it wasn’t true: Johanna was almost always there, but because she felt everything deeply, a severe patch of pain or illness or unhappiness in Walker crushed her with sadness, and her sadness could then paralyze her. At times like that we relied on my more earthbound mantle, my bullheaded core.