Excerpted: What to Feel, How to Feel

THE NOTEBOOKS OF EVERYTHING IS GOING TO BE ALRIGHT

Every weekday, I walk to my son Kaz to elementary school, a nondescript brick single-floor structure. Small parking lot, unmanageable snarls of drop offs, huge library (but few books), an athletic field that will never get the landscaping love it needs. He doesn’t approach any other children, though I encourage him to do so. No other children approach him. Later, when I pick him up from his aftercare, I arrive looking to see if he is engaged with other kids, but each evening he is either crafting with an adult, or he sits alone. On occasion, I’ve walked past the school playground, looking to see what he’s up to during recess. He sits on a bench, by himself, and returns inside when the bell rings. When I ask him why I never see him play with anyone at school, he says, Because I’m solo, daddy. After a pause, he repeats: I’m solo. Irritated at being asked once more as he nears the end of his time in elementary school, he responds to my habitual question with, Why do you want me to have friends, daddy? I think: because I want you to have what I didn’t have. I say instead: Because friends are more fun. Kaz responds: But I’m solo, daddy.

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At every single meeting with a public-sourced disability professional—behavioural consultant, social worker, occupational trainer—I endure the first five minutes of our meetings as the typical dad, meaning that the women all look to my wife as the primary source of information. Once the five-minute mark hits, I explain that I am the primary caregiver, that I have what they term the “instructional control relationship” with Kaz. Or, as he and I term it: “we’re friends.”

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Buster Perley, the intellectually disabled man who lived with my grandparents, loves to sit in a folding chair near the Trans-Canada Highway, spending entire days bronzing in the sun, watching cars and tractor trailers move up and down. The few times I visit my grandparents, Buster extends his hands towards me and mock-undulates his fingers, saying, I’m going to get you. I, of course, love Monster Game, and scream while running away. Whenever he sees me later that day, he sticks his hands out again and waves his fingers. Then I disappear again. Eventually, I witness Buster complete his one job at the farmhouse: dishes. His slow body, bending over, standing straight, bending over. My grandparents are paid the lion’s portion of his disability pension for his care. But it was good for him, I think. I remember him being happy.

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I am seven years old. My mother teaches me how to fill the dishwasher. She has a system: plates in a phalanx; bowls according to how not to bend the tines. Precise placement of utensils. After every meal, it is my responsibility to clean off the table and deposit dirty plates and cutlery into the dishwasher. I am expected to do this every day, every meal. Back and forth, bending over. Straightening.

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How am I supposed to show my son how to make friends, how to be a friend, if I myself do not know how?

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Since the 1950s, the lion’s share of research into the parenting of intellectually disabled children has been conducted with mothers. This has only started to change in the past ten years. Initially, the theory guiding research was Freudian: parents typed according to the grief model in Mourning and Melancholia. This simplistic view has become vastly more complex over the years, moving to the equational “Double ABCX model” that explains parental stress. In the model,

X = the stress of having a disabled child

A = the specific characteristics of the disabled child

B = a family’s resources, internal and external

and C = the family’s perceptions of the child.

The “Double” part of the equation means simply that the equation can be run again later as variables change. An open system. Grief evolves, adds, sediments. We have long known that the mothers of intellectually disabled children have poorer psychological health as a cohort than mothers of normative children. Only lately has the finding been confirmed in fathers. Assignation of variables in our case:

Double = pre-existing mental health diagnosis + grief of diagnosis

A = Kaz’s behaviour, things no one else will know unless they are here, unless they see, unless they are family; things anyone who overhears will discount, or use to blame me.

B = considerable internal resources but zero external resources

C = love and fear.

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When I am eight years old, my father teaches me how to take out the garbage. We use empty old oil barrels, bottoms almost rusted through; the trick is to get the dolly underneath and pull back in a fluid motion so that the barrel won’t overturn. Each week, two barrels, Thursday mornings, several terrifying months of screamed instruction before I learn the trick to his satisfaction.

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I am ten years old. My father teaches me how to start a fire. It is now also my responsibility to light the wood stove before my father returns home from work in the evening. He shows me how to place paper, what kindling to use and how much, how to place sticks, how to distinguish between hardwood and softwood. Don’t overuse paper and kindling. I need to be shown over and over and over again. Over and over and over. Screaming, over and over.

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Kaz, I say. That’s not friends. Kaz is harassing his sister, trying to make her cry, claiming that Biggers, our cat, loves him more than her. Kaz, I say. That’s not friends. Kaz rolls his eyes, stomps his feet, and rocks his chair in protest for not getting a treat. Kaz, I say. That’s not friends. Kaz refuses to participate in routines, preferring to sing a song about how he will never, ever do anything but play video games and eat chocos. Sometimes I repeat the rationale: Kaz, friends are cool and they help each other and they like each other and they get along. I want to be friends. Do you want to be friends?

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