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

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