Two metres and a world apart: Life in lockdown for me and my disabled son

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In the group home where my son lives with eight other intellectually disabled friends, the need to be swabbed for COVID-19 looked like a chance to get out of the house.

It was mid-April, and the home had been locked down for over a month – closed to parents and impossible to leave.

His symptom was intestinal, involving multiple trips to the bathroom. By then the list of potential COVID-19 indicators was growing by the week. So Emily Larkin, the supervisor of the group home – 28, quick, hard to fluster – donned a mask, collected Walker, manoeuvred him into his coat and grabbed the van keys to drive him to the testing clinic.

It was the van keys that gave her away. In a house where no one is verbal, where routines and gestures and familiar phrases replace sentences and complicated explanations, the Fetching of the Van Keys is more or less equivalent to the second coming of Jesus. The van keys signify a trip. A trip means a journey into the great world, into the realm of the normal and the Other, the vehicular equivalent of Sir Ernest Shackleton setting out across the ocean for an unknown land. Walker and his clan love the van; they (used to) take trips all the time.

Now Walker was getting the adventure, alone. “He was really excited,” Emily remembers. He’s an expert at living in the moment. “And everyone else was upset, because they didn’t get to go.”

As it turns out, Walker’s adventure wasn’t such a prize. A nurse shoved a long flexible wand up his nose and down his throat, an experience people have likened to drowning. He took it well.

Then he went home and had to stay mostly in his bedroom, isolated with a dedicated worker in full protective personal equipment, or PPE (mask, gown, gloves, shield) for three entire days, until the test came back. It was negative. He didn’t have COVID-19. Still, I was surprised either one of them emerged from the bedroom intact.

The relief of the result lasted for days, like a stretch of good weather. But it’s hard to keep calm for long. The pandemic still rages, everywhere: 65,399 cases in Canada as of this week, 19,598 in Ontario alone, 4,471 people dead – most of them elderly, many in retirement homes and long-term institutional health care settings. As early as mid-April in Ontario, 33 outbreaks involving 130 residents and staff had shown up in provincially funded facilities for people with developmental delays. Experts predict the conflagration that beset nursing homes is now headed for disabled people. This week, Canada’s Public Health Agency released a long and sobering list of “special considerations, adaptations and recommendations” to be “considered and provided for people with disabilities” – everything from alternatives to masks (which Walker simply won’t wear) to the right of a COVID-infected person with disabilities to have a care-giver or family member with them in hospital, against all the rules. “Persons with disabilities face unique and heightened challenges and vulnerabilities in a time of pandemic,” the new report states.

Don’t misunderstand me: by the standards of the pandemic, we’re lucky. I have not suffered the remote death of a terrified parent or spouse or sibling or child in a hospital I couldn’t visit because of the COVID-19 lockdown. If Walker has to live somewhere other than with us – and the medical circumstances dictate that he does – there is no better place than where he is, under the watchful eye of experienced professionals who know every trick in the book to ward off a scourge like COVID-19.

The problem was this: By the time Emily passed along Walker’s test result, I hadn’t seen or heard or touched my son for six weeks. His absence felt like an echo, as if I’d forgotten something, but had forgotten what I’d forgotten. I couldn’t chat with him – he doesn’t respond to screens or Zooming – and I understood that I couldn’t touch him, though I missed that unbeatable pleasure most of all. I grasped the importance of physical distancing and quarantine, as frustrating and unsettling as they had been. At the very least I wanted to lay eyes on him, to be reminded of the mysterious shape he forms in the world. Quarantine makes us want to connect, but then tells us we can’t touch. It used to be Walker who could communicate in only limited ways. The pandemic has made us all like him: grasping for something just outside our reach.

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He has lived in the home in Pickering, Ont., on the edge of the city where the tax rates are lower and a group home is a more viable venture, for more than a decade, since he was 12. The number still shocks me. He was born with a rare affliction called cardio-facio-cutaneous syndrome that produces an unpredictable array of delays and challenges: he can’t swallow (he’s fed by a tube) and he can’t speak, which makes it hard to know what’s wrong. Something frequently is. He can walk but not plan, so he’s catastrophically mobile and needs 24-hour care. He has a bottomless sense of humour, but he’s medically fragile: every kid gets colds, but Walker’s colds (six a year, minimum) are snot hurricanes emanating from a single head and chest system. He’s 24 now, but looks 12 and has the mind of a two year old. He’s a challenging but often lovely guy to spend time with: He has a way of making you feel things. It took me 12 years to realize we couldn’t raise him alone, and seven years to find Stewart Homes, a privately owned, for-profit string of residences for medically fragile and intellectually disabled children and adults in Pickering and Peterborough. He lives in one of their homes to this day.

Until the pandemic struck, Walker came home to us for two days every two weeks. (His lifelong nanny, Olga de Vera, still helps us do that.) I used to hate driving him back again, but he likes returning home to his other home now. He walks in like a navvy hitting his favourite pub after a hard day on the railbed. It’s his community, his path, his own destiny.

And then in early March, just before reading week officially became the rest of the school year, Ms. Larkin, the supervisor of his house, called. While the pandemic raged, we couldn’t visit him, and he couldn’t visit us. That was eight weeks ago.

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Before the pandemic, when I picked Walker up to come home on a Tuesday, his house was always empty: everyone was at school or in a day program. (Five of the house’s eight permanent residents are younger than 18; four are over 18, the oldest being 27. I often think of them as his step-siblings.) Outbreaks of contagious diseases are par for the course with the medically delicate: The house has bins permanently stocked with masks and gowns and PPE. “We’re pretty good at remaining calm,” Ms. Larkin will tell you. “We’re used to dealing with seizures and respiratory distress, or if someone hurts themselves.”

But the unexpected challenge of COVID-19 has been something else entirely: since lockdown, nine residents and nine one-on-one assistants, plus supervisors and managers, are in the home all the time, trying to practice physical distancing. “It’s very busy now,” Ms. Larkin admits. The staff, who now wear masks all the time (they ramp up to full protective regalia whenever they spot any symptom), are each responsible for one resident every shift, and for maintaining two metres of physical distance between the residents. This is hard to do even in a big house designed with wide halls and extra light and no carpets, because Walker and his ilk tend to be curious and mostly unashamed: they like to hold your hand and sit in your lap even if you’re a stranger, and they’re no better at being quietly bored than the rest of us. The challenge in the pandemic, Ms. Larkin says, is “keep busy, but not together.”

“We used to be a big group of people who would hang out together.” Now they eat only in pairs, and in shifts. There’s a paved area to the front and side of the house – ”walking in circles, better than nothing” – and a double-wide back yard. The rest of the quiet, suburban neighbourhood is off limits: they can’t guarantee passersby will respect the two metre rule.

Everyone, staff and residents alike, is screened for temperature twice a day. Early in March, weeks before the Ontario government made similar moves, Kim Erskine, the executive director of Stewart Homes – the company is a veteran of both the SARS and the H1N1 pandemics – prohibited the migration of staff between the organization’s homes. She also insisted they give up any outside jobs, proffering a $3 an hour bonus as partial compensation. “That was hard,” she admits. Nearly a fifth of her part-time employees left the company; she offered the others full-time status. With overtime, they can now log 45 hours a week at an average of $22.50 an hour.

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Nowadays when Meriel Gasco, a well-organized third year nursing student at Ryerson University, arrives for work at the house at 6 a.m., she changes into fresh scrubs; gets questioned and screened; washes her hands; puts on her mask; and gets assigned her day’s companion, whose every personal need she then attends to while keeping him or her two metres from anyone else. Imagine doing that with people who can’t speak, for 12 hours a day, for three days in a row. At the end of the day she changes out of her scrubs, launders them, and, still masked, Ubers home, where she lives with her parents and brother, all essential food workers. They wear masks to shop for groceries and try to maintain space at home, “because we don’t know what we could be carrying.” She hopes this is sufficient protection.

Jonathan Larong, a 44-year-old who trained as a registered nurse in the Phillipines, has worked with Walker for four years, and knows him as well as I do. This no longer bothers me. “You will know Walker Brown wants to go out” – Jonathan always calls him Walker Brown as if he were citing a historical movement, like the Reign of Terror – “if he’s crying or if he’s standing in the entrance. And if you say no, you can’t, he’ll have a tantrum, which is not the case normally.” The secret, Jonathan claims, is that “the kids here, they’re used to routine. When you give them instructions, they listen. When you say, ‘Walker, let’s go to the washroom, put your hands in the sink,’ he does.” Kelly Cooper, Stewart Homes’s manager of training and development in Pickering, admits that when physical distancing was first introduced, preventing “the kids” (everyone calls them “the kids”) from cuddling and lounging with their helpers and each other, “they were upset. But physical distancing is now part of the routine.” There’s a lot of steering and diversion involved: a guiding hand here, a held hand there. Outside is easier than inside. Seated and distracted is safer than wandering and bored.

Something is working, anyway: there has as yet been no outbreak of COVID-19 in a Stewart Home. No one who works there ever says this without knocking on wood, because the virus lives to infect. “Some people have made mistakes,” Alan Stewart, the retired founder, says. “Some haven’t, so far. We all will, eventually.” So far: that’s as good as the news can get.

The one challenge that’s more difficult than keeping a homeful of intellectually disabled people apart, Ms. Larkin and her colleagues admit, is the quarantine’s prohibition on displays of physical affection. She has had to turn Walker away. Touch is everything for a guy like him, whose other senses are limited: what he can find to worry in his thick hands, who he can sit down next to and lean against and therefore visit before restlessly getting up and moving on, who he can gently or not so gently bonk in a gesture of greeting and friendship. I’d give anything to put my arm around his slim shoulders, and natter in his ear about the wonders of the world around us, and make him laugh with glee at being included in the conversation. Now I have to wait to do that. “The hardest part is just maintaining their social distance,” Ms. Gasco says. “And not being able to show affection.” Oh, I reply, do you think they miss affection? I mean by this that sometimes it’s hard to tell. “Well,” she says, “kind of. Because we treat them like family, and care for them like family.” She thinks they need our touch. I suspect I need theirs even more.

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Eventually I couldn’t stand it anymore, and drove out to Pickering to spy on him in the big backyard. I wanted to see him, his reluctant body, his sly glance. I didn’t need him to see me.

There was hardly any traffic on the highway out; it was like flying.

I could see him as soon as I pulled into the driveway and parked the car, a small figure against the green grass. He was wearing his blue anorak and his green foam helmet and his black skinny jeans. (Skinny jeans! I am always impressed by his fashionable duds.) The overcast light was slightly grave. He was kicking a soccer ball as slowly as a soccer ball can be kicked, but he kept at it longer than I had known him to. That was new, another phase lost to the quarantine. He looked a little paler than usual, maybe from being inside so much.

I crept up between the cars, to get closer. He was making one of his noises: yah dah. One of his favourite workers, Michelle Walters, was following him following the ball. T, a slightly older housemate – she and Walker had taken a long time to become friends, but now they sought each other’s company – was in the far corner of the yard, a continent away.

He looked up. I was sure he couldn’t see me 30 metres away, behind a car. But he was heading for the fence between us. He likes doors, gates, latches, any means of escape: he is the Houdini of Pickering. He paused to lie down on a picnic table. He slumped against a swing post. But he was getting nearer. This took 10 minutes.

Yah dah. I wondered what it meant, because I am convinced all his sounds mean something. It was not my intention to be seen. My wife and I had our weekly pick-up routine with him. We worried that seeing me, and not coming home, would upset him.

I called my wife so she could see Walker on the phone. “This is killing me,” she said. That was when he must have heard me answer, because he looked up then, directly at me.

So I stood up and said words I had not said in months. “Hello, Walkie. It’s Dad. How are you? It’s so nice to see you.” I made a clicking sound, because this is something he and I do.

He was 10 metres away, moving toward me, but turned sideways. He has a talent for embodying a metaphor. Looking back on it – it has taken me days to work this out – I think he was trying to figure out if it really was me, his father, and if it was, as he suspected, whether the new rules of distance applied to me as well, hence the sidestepping walk.

And then he was through the gate, as the kids made their way back to the house. I kept backing up, staying two, three, five metres away. The words were coming out of me like soup. I have no clue if he understood them. “I can’t hug you, because of the sickness,” I said. And “I’ll see you as soon as this is over.” And then: “But you can’t come any closer.”

Whereupon he stopped. He wasn’t upset. Sad, maybe, but not angry. He seemed to know this was some strange new unnatural but necessary rule. “You have to not get sick,” I said, as I backed away to my car. “You have to not get sick.” I have been repeating the phrase quietly to myself ever since. You have to not get sick. Yah dah.

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Here’s a question: if the virus gets him (knock wood), if something happens, will it be my fault? Because I was the one who put him in the home years ago? Would he have been safer at our home? I sincerely doubt it, but with this virus there is no certain answer. I once asked Ms. Cooper, the training manager in Stewart Homes’ Pickering wing, how she dealt with the amoral appetite of the virus, its penchant for the weak and the vulnerable. “You do everything you can in your power to prevent it, to isolate it, to test it right away, to train staff,” she replied, in her straightforward way. “And then after that you just have anxiety. You walk around with it. It doesn’t go away.”

But the virus’s virulence, its power to isolate us, has had unintended consequences. The disability universe, for instance – like healthcare in general, like the political world and the economic one – has long split into two distinct camps: one that emphasizes community and quality of life, and a camp that emphasizes care, and the need to keep the disabled healthy and safe and alive. We have communities of old people ravaged by illness, and brilliant care facilities that don’t feel much like communities. The two worlds rarely intermix. Walker’s home – dedicated as it is to the medically fragile – falls in, politically, if not in practice, with the care crowd.

But the pandemic is reshaping even that arrangement. Ms. Cooper has worked with medically fragile people for 23 years. “Having parents not visit the kids, that’s not easy on the parents or the kids,” she admits. “In the beginning, everyone missed their parents.”

“But what I see now is this new normal. Because they’re now getting all this one-on-one attention from their caregivers. Workers are having more opportunity to bond with the residents, because things have slowed down.”

Now when Ms. Cooper visits the homes she supervises, she sees children laughing at staffers in their PPE – ”they think it’s hilarious” – and staffers lying on the beds of their wards, reading out loud. “And the staff are laughing too. Everyone was worried they would be stuck in their rooms, but there’s actually some pretty beautiful stuff happening.” The people who matter most – the frail who need protecting, and the brave health care workers who try to protect them – are finally getting to know each other, not as clients, as they say in the caregiving professions, but as fellow travellers.

“This is going to be a new normal,” Ms. Cooper insists. “This isn’t going to stop. There will be more one-on-one time. It’s important to learn not just how to keep them safe, but how to improve their quality of life.”

That would be a useful lesson to take away from this ongoing nightmare – and not just for people with disabilities. Until then, we wait for a vaccine, desperately hoping the virus skips the people we love.

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