by Ian Brown
A terrified eep from One-Eye would be the only acknowledgement.
“And this … is Walker! Can you say hi, Walker?” Of course I knew he couldn’t say hi, but what was I supposed to say? Here, you two seem well matched. Instead I said the only thing I could say: “Let me show you his room.”
There would then follow our standard explanation of the Walker routine. Here is his food, his clothes, his diapers, his changing room, his room, his playroom, his bed. Then the routine itself: he gets this syringe at this time, and 4 cc’s of this at that time, and then two cans of formula every four hours, which you administer like this, attaching this bit here to that bit there and this gizmo into that nozzle—et cetera.
“Hayley knows what to do,” we said, pointing to our lovely four-year-old daughter. It was a little like trying to explain the plumbing of a large complicated house in five minutes before you flew out the door. Because of course we also wanted to fly out the door.
But that was when One-Eye would unpack her … bag. Bag? The One-Eyes always carried a carpet bag of contraptions. Puffers and inhalers (their own); bottle of hand cream; snacks (including in one instance an entire loaf of bread; “What’s she going to do?” Joahnna said, after we left. “Have a picnic?”). One woman—she came back several times—found the stairs too much to handle, and we returned after midnight to find her camped out in the living room, Walker alive and well and, always, wide awake. Hayley developed favourites—the woman from the Maritimes who told funny stories about growing up in the country—and others, such as the woman who insisted that Hayley give her all the red sour worms in a bag of candy, and that they be transported to her fingers, one by one. We lived in a world of our own, an underworld of Walker’s making.
six
But let me ask you this: is what we’ve been through so different from what any parent goes through? Even if your child is as normal as a bright day, was our life so far from your own experience? More intensive, perhaps; more extreme more often, yes. But was it really different in kind?
We weren’t disability masochists. I met those people too, the parents of disabled children who seemed to relish their hardship and the opportunity to make everyone else feel guilty and privileged. I disliked them, hated their sense of angry entitlement, their relentless self-pity masquerading as bravery and compassion, their inability to move on, to ask for help. They wanted the world to conform to their circumstances, whereas—as much as I could have put words to it—I simply wanted the rest of the world to admit (a minor request!) that our lives, Walker’s and Hayley’s and my wife’s and mine, weren’t any different from anyone else’s, except in degree of concentration. I realize I was delusional. People often said, “How do you do it? How are you still capable of laughing, when you have a son like that?” And the answer was simple: it was harder than anyone imagined, but more satisfying and rewarding as well. What they didn’t say was: why do you keep him at home with you? Wasn’t there someplace where a child like Walker could be taken care of? Where two parents wouldn’t carry the whole load, and could have a moment or two to work and live and remember who they were and who they could be?
I asked myself those questions too. I knew Walker would have to live in an assisted living environment eventually, but that was surely years away. I approached the subject casually, even at home. “We should put him on the waiting list for a long-term place,” I’d say, off-handedly over breakfast. I tended to think about the problem in bed at night.
“Oh,” Johanna invariably replied, “I’m not ready for that.”
“No, no, not now,” I would say. “Later.”
Just as Walker turned two, he began to grab his ears and bite himself. He didn’t stop for a year and a half. We thought he had a toothache, an earache. He did not. Self-mutilating appears for the first time in his medical chart in March 1999, shortly before his third birthday. He quickly graduated to punching himself in the head. He put his body behind the punches, the way a good boxer does. Hayley called it “bonking,” so we did too.
The irony was that he had been making progress, of sorts: finer pincer movements with his fingers, a little eating. (He loved ice cream. If you could get him to swallow it, ice cream made him smile and scowl—from the cold—at the same time.) He could track objects and wave goodbye, and often babbled like a madman.
Then he flipped into blackness.
Was it self-hatred? I wondered about that. We enrolled him in a famous rehabilitation clinic, the Bloorview MacMillan Children’s Centre (now Bloorview Kids Rehab) in north Toronto, where he was seen by a behavioural therapist. Everywhere else when people saw his bruises they wondered what we were doing to our child. Cannot communicate, Dr. Saunders noted.
Sometimes Walker was in agony as he smacked himself and screamed with pain. At other times he seemed to do it more expressively, as a way to clear his head, or to let us know he would be saying something if he could talk. Sometimes—and this was unbearably sad—he laughed immediately afterwards. He couldn’t tell us anything, and we had to imagine everything. More specialists crowded into our lives. Walker was diagnosed as functionally autistic—not clinically autistic, but he behaves as if he is—as well as having CFC. Dr. Saunders tried Prozac, Celexa, risperidone (an antipsychotic designed for schizophrenia, it has been known to allay obsessive-compulsive behaviour in children). Nothing worked. Once, in Pennsylvania, he bit his hand to the bone and, after an hour of surgery to repair the damage, spent a night in hospital. (The bill was $14,000.)
Dr. Saunders’ notes began to track longer and longer stretches of horror. “Bonking” ears × 2–3 days. I remember that morning, especially the grief-stricken look on Walker’s face as he bashed himself. He looked straight at me. He knew it was bad and wrong, he knew he was hurting himself, he wanted to stop it and couldn’t—why couldn’t I? His normally thin gruel of a wail became frightening and loud. From June 2001 to the spring of 2003, every entry in his medical records mentions his unhappiness, his irritability.
Did he know his window for learning was closing? Was his vision dimming? 72 hours aggressive behaviour. Unhappy crying × 5 days. Even Dr. Saunders’ handwriting became loose and scrawled, distracted by the chaos of those shrieking visits. Screaming all day, needs to be held.
I dreaded the doctor’s waiting room, with its well-dressed mothers and well-behaved children. They were never anything but kind, but walking in with Walker yowling and banging his head, I felt like I’d barged into a church as a naked one-man band with a Roman candle up my ass and singing “Yes! We Have No Bananas.”
Mother tearful, Dr. Saunders noted on December 29 of that awful year. Urgent admission for respite.
I remember that day too. We drove Walker home from the doctor, fed Walker, bathed Walker, soothed Walker, put Walker to bed. I heard his cries subside in stages. Normally Johanna was relieved when he dropped off to sleep, but that night she came downstairs from his bedroom sobbing, her arms wrapped around herself.
“He’s gone away,” she said. “My little boy has gone. Where has he gone?” She was inconsolable.
So perhaps you can understand why, the very next morning, I began to look in earnest for a way out. I didn’t tell Johanna, but I had to find a place for Walker to live, somewhere outside our home. I didn’t realize it would take seven years, that it would be the most painful thing I have ever done and that the pain would never go away.
On my desk at work is a picture of Hayley reading to Walker. This was up north, on the quiet island. They are lying side by side on a bed, and Walker is looking up at the book in Hayley’s hands, as if riveted by every word. I don’t know if he understands a syllable. But he can hear her voice, is thrilled to be with her and clearly grasps his smart big sister’s affection. He has become the moment and it has become him, because he has nothing else to be. Walker is an experiment in human life lived in the rare atmosphere of the continuous present. Very few can survive there.
The photograph reminds me of a poem I once read in a magazine, by M
ary Jo Salter:
None of us remembers these, the days
When passing strangers adored us at first sight
Just for living, or for rolling down the street.
Praised all our given names, begged us to smile.
You, too, in a little while, my darling,
Will have lost all this,
asked for a kiss will give one,
And learn how love dooms one to earn love
Once we can speak of it.
My boy Walker has no worries there. He never asks, yet is loved by many. But I doubt it feels effortless to him.
“I hear parents of other handicapped kids saying all the time, ‘I wouldn’t change my child,’” Johanna said one night as we were lying in bed, talking as we fell asleep. “They say, ‘I wouldn’t trade him for anything.’ But I would. I would trade Walker, if I could push a button, for the most ordinary kid who got Cs in school. I would trade him in an instant. I wouldn’t trade him for my sake, for our sake. But I would trade for his sake. I think Walker has a very, very hard life.”
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.