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And right then, as he turned 2, Walker 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 ear ache. He did not.
Self-mutilating appears for the first time in his medical chart in March of 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 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 the famous rehabilitation clinic at the Bloorview MacMillan Children's Centre in north Toronto, where he was seen by a behavioural therapist. Everywhere else people saw his bruises and wondered what we were doing to our child.
Cannot communicate, Dr. Saunders noted.
Sometimes he was in agony as he smacked himself and screamed with pain. At others he seemed to do it more expressively, a way to let us know he would be saying something if he could talk. Sometimes this was unbearably sad he laughed immediately afterward. He couldn't tell us anything, and we imagined everything.
More specialists crowded into our lives. Walker was diagnosed as being functionally autistic as well as having CFC. Dr. Saunders tried Prozac, Celexa, risperidone (an antipsychotic designed originally for schizophrenia, it has been known to allay obsessive-compulsive behaviour in younger children). Nothing worked. Once, in Pennsylvania, he bit his hand to the bone and, after an hour of surgery, spent a night in hospital. The bill was $14,000.
Dr. Saunders's notes began to track longer and longer stretches of horror. "Bonking" ears x 2-3 days. I remember that stretch, especially the grief-stricken look on Walker's face one morning as he bashed himself. He looked straight at me. He knew it was bad and wrong, he knew he was hurting himself, wanted to stop it and couldn't why couldn't I? His normally thin gruel of a wail became frightening and loud. From June of 2001 to the spring of 2003, every entry in his medical records mentions his unhappiness, his irritability. He began to regress, to lose sounds and gestures.
Did he know his window for learning was closing? Was his vision dimming? 72 hours aggressive behaviour. Unhappy crying x 5 days. Even Dr. Saunders's handwriting became loose and scrawled, distracted by the chaos of those shrieking visits. Screaming all day, needs to be held.
I dreaded his 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 for good measure.
Mother tearful, Dr. Saunders noted on the 29th of December 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 tonight she came downstairs from his bedroom crying, 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 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 had 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'll never know if he understood 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 Mary 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, but 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. 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."