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first person

Illustration by Rachel Wada

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“Do you think he’s more dependent on you since he moved back home?” a friend asked, for the second time this month.

It was a legitimate question to ask of a mother whose 35-year-old son had moved back into the family home almost two years ago. The move was to have been just until Paul got back on his feet. It was to be until he dealt with his loneliness and addiction, not to alcohol or drugs, but to the sugar- and caffeine-laden drinks at a popular coffee shop chain that lured him into the company of strangers at any time of the day or night.

Paul is no ordinary 35 year old. He was born with tuberous sclerosis complex, a chromosome abnormality that caused his intellectual disability. He inherited that gene, as well as the one, marked “persistence,” which turned out to be a good thing. The world isn’t made for people like Paul. Many years ago we joined a family group, which encouraged our adult sons and daughters to become more independent and take their rightful place in the community. We called ourselves Homes for Life. If your kid moved out, it was a badge of honour.

Paul moved out to his own apartment when he was 24. He loved riding the bus and knew the names of all the drivers. He had support workers for 30 hours a week but it wasn’t quite enough. Two years ago, his caffeine habit, coupled with his passion for buses took him across town with increasing frequency, threatening not only his part-time job but his mental health. He didn’t have one drink; he bought several at each location, which made him increasingly agitated with each stop.

Getting Paul to change wasn’t easy. His behaviour was as much about his social needs as the sugar and caffeine he consumed; when you’re lonely, having a barista say, “Hi, what would you like?” brings its own reward.

It was almost dark when he called me in the summer of 2019. He’d stopped answering his phone, so my antenna was up.

“Mom, I’m at the terminal. I’m scared.”

“I’ll be right there,” I replied, halfway out the door.

I found him standing alone beside the empty bus bays. His head was down, his wallet empty. Paul agreed to move to the apartment in our home after his annual camp stay in August. It was supposed to be temporary until we could find a new living arrangement that included a place where he felt connected to the people around him.

Then COVID hit. That was supposed to be temporary, too. Paul’s vacuuming job at the Holiday Inn ended; he’d worked there for 12 years and was recognized for his dedication and for motivating staff with his smile and cheerful greetings. The uniform that identified him as belonging to a team hung in his closet. Riding the buses was no longer safe; neither was bowling with friends or any contact with them at all. Door after door in Paul’s world closed, including summer camp – a place where he first knew what it felt like to belong.

Paul is one of thousands of individuals living with a disability who are now more invisible than ever, experiencing even more losses, and living in increasing isolation.

My son is better off than most. With the help of a support worker, he has turned his love of vacuuming into a mobile car interior-cleaning business. He bought his own portable vacuum cleaner complete with attachments and uses a ‘secret ingredient’ to clean the dash and interior surfaces. When he pushes the pedal, the vac roars to life, and so does he. He loves the vibration of the motor, the sound of gravel and grit being sucked into the hose, the satisfaction of seeing the dirt disappear, and the pleasure on the customer’s face when he’s done. His self-confidence is returning; his customer base is growing. And he hasn’t had “a drink” in 15 months.

We thought Paul would be living elsewhere by now, but “elsewhere” doesn’t seem to exist. My husband and I are now part of the demographic of aging parents with an adult child with a disability living at home, but what are the alternatives? Funds for new initiatives are scarce, and housing prices are skyrocketing. The provincial government is putting younger people with health issues and disabilities in nursing homes because there is nowhere else for them to go. This terrifies me. But I can’t give up, not yet.

My son has the same basic human need to belong as every one of us. If it takes a village to raise a child, then it takes a community to house us as adults. How much richer our communities would be if we understood the benefits of living with diversity and sharing the gifts it brings.

Over the past 11 years, I’ve learned how important Paul’s living environment is to his mental health. For him to feel safe and stay healthy, he needs to be connected to his neighbours. We found out the hard way that “being housed” isn’t enough.

Wherever Paul lives next, it needs to be a neighbourhood where he can have relationships with those around him. This isn’t going to happen by chance so I’ve started looking for a community connector to join his support team. I hope Paul will use his people skills to take things to the next level; natural, i.e. unpaid relationships, and friendship.

Paul would love to be your neighbour. He’d show you how to find pleasure in the simple things in life, why it’s good to learn the name of every bus driver in town, and a great deal about motors, boat rides and jet skis. He’d show you what resilience looks like.

Making this happen for Paul is the public side of my life – the smiling, outwardly confident, seemingly tireless advocate. What you don’t see is the effort it takes me to keep afloat. Below the surface, it feels like I’m treading water, at times madly, and I’ve been doing it for 35 years. The isolation that COVID brought has made it harder than ever to keep my head above water.

So please don’t tell me it looks like Paul has become more dependent on me. It makes me feel even more vulnerable and afraid. I’m afraid if I sink, Paul will, too.

Lucinda Hage lives in Peterborough, Ont.

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