The Boy in the Moon: A Father's Search for His Disabled Son (9 page)

seven

For seven years we talked about Walker moving away to a home for the disabled. Or, to be more accurate: for seven years I tentatively raised the subject of Walker moving into a home, and neither of us could face the possibility. We had to do it, but we couldn’t do it.

The dilemma reminded me of an experiment I once read about. Rats were placed in a Skinner box. The floor of the box was then electrified, and the only way the rat could escape the shock was by jumping onto an elevated platform. Unfortunately, any rat that used the platform was punished with a sharp blast of super-cooled air directly into its anus—an experience of which rats are not fond, apparently. Rats subjected to this inescapable dilemma quickly began to display classic schizophrenic behaviour. I knew how the rats felt.

By the time Walker was nine, he was pushing sixty-five pounds, and getting bigger, as we were getting older. I was fifty; Johanna was forty-one; Hayley was suddenly a teenager. Carrying Walker upstairs was like hauling a canvas bag of iron pellets, all the weight in the bottom of the sack. Three hours of sleep a night for four nights running was beginning to have an effect: visual migraines became a new feature of my life. How long could we keep it up? Despair seemed to come in cycles, especially when Walker’s health was compromised.

I kept my ears open for news of stable group homes and reliable assisted living centres for the intellectually disabled—but every time I pursued a lead, it disappeared behind an excuse: no room, no funding, wrong for little boys. One famous community for the intellectually disabled to the north of the city had a waiting list of twenty years and didn’t accept children. I joined the local association for community living, hoping somehow to ingratiate myself with the organizers and find early leads; instead, the organizers informed me that the average applicant for a spot in the city’s network of communal homes was a forty-year-old with Down syndrome and aging parents who were themselves increasingly in need of communal living arrangements. I came away from that conversation thinking that the future was a long way off. No wonder we wanted to keep Walker with us: the scene beyond the walls of our own home, in the world of public housing for the profoundly disabled, sounded like a novel by Zola.

We had lived with this dispiriting state of affairs in the background for years. Back when Walker was two, in the dark days when he began hitting himself, a friend with a disabled daughter of his own introduced me to a man I was told would solve my problems. He worked as an advocate for the handicapped. I’d heard of such people: they were almost legendary creatures, spoken of but rarely seen. An advocate was a kind of personal manager and agent—someone who took on specific cases (but by no means any case) and ran interference for that soul in the vast, complicated special-needs bureaucracy. The advocate helped families figure out what they needed, organized an appropriate plan of attack on the bureaucracy, then lobbied for care and support and money. Advocates tended to work on salary for social service agencies, usually non-profit organizations financed by charities and government grants.

Before I met the advocate, I had imagined there was one public government system through which every case of disability passed. I couldn’t have been more wrong. “It’s every man for himself,” the advocate told me. He was in his thirties, and was wearing a suit and tie. “What you get, someone else doesn’t get.” He told me of children who had been negotiated into group homes, and others who had their own apartments and $1 million a year to pay for support staff: it depended on how one asked, who one asked, how one haggled. “But Walker has a lot of needs, so that’s good,” he said.

The trick was to hold out until you got the deal you wanted, because if you took too little from the government, it was hard to go back and get more. On the other hand, if your child was offered a placement in a decent home and you turned it down, you went back to the bottom of the waiting list. The net result of this negotiating was an uneven, secretive, unpredictable game that rendered the parents of a disabled child at once anxious and grasping, as well as pathetically grateful for anything they were eventually awarded. New and ever more exotic strains of guilt began to assail me. If Walker lived full-time in a good group setting, the cost would run at least $200,000 a year. If he lived to the age of fifty, the total would be $8 million. I didn’t have $8 million dollars, but there were eight million people in Ontario, the Canadian province where I lived. Was Walker worth a dollar a person? Such calculations filled my head at night.

The advocate knew every play in the social services book. By the end of the hour and a half we spent together, I was convinced he was a genius, and said so. “I’d like you to represent Walker, if you can and would and have room for one more client,” I said, practically tugging my forelock.

“I’d love to,” he said. “He needs an advocate. There’s just one thing: I’m getting out of the advocacy business, and going to work for the ministry.” It felt as if the walls of the room had suddenly fallen down. A new Conservative government had taken power, and the province’s social service agencies figured they needed one of their own deep in the funding apparatus. Nearly ten years passed before I met someone else like him.

From an entry in my notebook:

November 25, 2003

A call from Walker’s school. “We’re at some kind of crisis point,” Alanna Grossman, the principal, says. He’s gone from biting himself to punching his head, in addition to his regular circus of tics and antics
.

We meet at the school at 9 a.m. Present are Grossman; Walker’s two young teachers, Thomas and Dean; a psychologist from the school board, a strict, punctilious woman in a tartan bib dress; two educational assistants; me; and Johanna, still fresh from the morning battle of waking and cleaning and dressing and soothing
and feeding Walker, and thus having had no time to change out of her pyjamas, which she’s wearing under her overcoat. An army, to care for a boy. “He needs stimulation,” the psychologist says, by way of explaining why he hits himself. How she knows this I have no idea. “We want his hitting to be more of a choice.”

These people all meet about Walker once a week. He’s endangering himself eight days out of ten. “He can follow routine, but gets upset if it’s imposed on him,” Dean says. “Sometimes being firm works.”

“But at the same time we want him to choose,” the psychologist interjects
.

I want her to choose another profession
.

“I refuse to believe this is his personality,” Johanna says. “And that’s why I’m so frustrated at not being able to create a communication system for him.”

Tartan-Bib: “Is he too dependent on holding?”

This is what I think is going on: Walker wants to be reassured that he’s a human being. He hates how strange and different he is. Now the psychologist wants to deny me the only way I can tell him he’s not
.

Without an advocate, waiting for something to happen that will help us out of the nightmare of caring for a boy whose needs are growing as our capabilities shrink, we’re thrown back on the ad hoc services the government provides as a stop-gap to a more permanent solution. There are respite care services—caregivers who will come and stay with Walker for half a day twice a week—but they too need to be sought out, applied for and approved. Everything we need requires a form: which form? Where do we get it?

Who has time to get it? Where do we send it? Once it is sent, we wait.

A number of brilliant university students pass through Walker’s life in this way—women my stuffed brain remembers only as Gwen and Elizabeth and Del. Gwen is a medievalist from Texas, a brilliant and creative woman with a sexy-librarian look and a hulking, pleasant boyfriend. Elizabeth is the first
Buffy the Vampire Slayer
fanatic I ever met: she could talk wittily and endlessly about her heroine, and taught me to take such pop culture obsessions seriously. Del is the sweetest: a quiet, dark-haired, dedicated university student of childhood education, sister to a disabled boy herself. Hayley adores them all like big sisters, and Walker no more fazes them than a busy street does. They are so young and hopeful and energetic, and I am so grateful for them. Gratitude springs out of me like crabgrass out of a lawn, riots of it.

But they all have their own lives, and they never stay long. There are some tax deductions available, but both Johanna and I work, so our income is generally too high for us to be eligible, we discover after we fill out the schedules. There are programs to cover the costs of assistive devices, but they require mountains of paperwork, not to mention background checks: the government seems to think I might have reason to scam a netted bed and an IV stand. Just what I always wanted! In any event one of us ought to fill out these forms—but both of us are working and looking after Walker full-time. When we both begin to freelance, to give ourselves more flexible hours, the forms do get filled out—Johanna spends four hours a week on paperwork—but we make less money, whereupon we can apply for those tax deductions. The entire system resembles a Rube Goldberg contraption.

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.