Tyke on a Tryke

Don’s story begins in Calgary, Alberta and moves to Winnipeg, Manitoba and now Vancouver, BC. Don’s background is French Canadian but his parents were told he would only grasp one language so the family chose English. Whether that doctor was correct will never be known but it is true that Don’s verbal ability is limited, even in English.

Don is a 56-year old man with Down’s Syndrome. His mother taught him the basic fundamentals of life with love and patience: toilet training took 4 years, walking took 3. As soon as he could navigate, Don began the first of countless ‘walkabouts’ where he left the house and yard to explore his neighbourhood. His older sister, Marlene, was designated to watch him and make sure he didn’t leave. But Don knew how to fly under the radar and every once in awhile he would disappear.

One time when he was 8 years old a neighbour called to say she had seen Don riding his tricycle down a busy Calgary street several miles from home. Don’s dad jumped into his black Pontiac and rushed to the scene. Sure enough, Don was pedalling in the middle of the road, separating and slowing traffic, a smile on his face. His sister got into trouble for that one and many more.

Don’s sense of adventure hasn’t left him. He’s always ready to go on holidays and often asks in his one-word sentences for what he wants: “airplane”, “suitcase”, “big bag”. As often as possible, Don’s family tries to make his dreams come true.

Don’s immediate family consists of his older sister, Marlene; his niece, Camille; and his nephew, Marcel. There are hundreds of assorted aunts, uncles, cousins but most of them live in Manitoba with a few sprinkled here and there.

Donny is loved by many and his presence opens the hearts of people around him. When he walks down the street with his sister, people often say hi and smile. Don loves meeting people. He doesn’t say much but is quick to hug. His acceptance and innocence is disarming and rarely fails to charm people.

Don lived with his parents until he was 19 years old when he moved into Lincoln Lanes, a state of the art group of homes built on an acreage in Southern Calgary. Don lived there for almost 30 years and did things during that time that amaze people today. Don was able to take the bus from south Calgary and transfer twice to get to the Vocational and Rehabilitation Research Institue on the North side of the city where he participated in vocational training and recreational activities with many others.

One time there was a wildcat transit strike that left Donny stranded at VRRI. No one knew where he was. Several hours after his workshop was finished, he showed up at the group home, having walked all the way back, some 10-15 miles. 

Don’s life was very settled and comfortable His parents, in deference to his well-being, chose to remain in Calgary rather than uproot him for greener pastures. But when Don’s mom was diagnosed with cancer and the increasing onset of the disease became progressively worse, the family decided to move to Manitoba to be close to her sisters and brothers. Within a month, they were gone with Donny and left everything he knew, to be moved into a small apartment with his mom and dad, away from his friends, his routine and his life.

From morning to night, Don sat in a rocking chair and watched TV. At night he slept in a cot near his mother’s bed. She was in crisis, trying to survive. Don’s dad was a domineering presence, prone to scrutinize and control his loved ones. Within a year, Don stopped communicating. Because of long waitlists in Manitoba as in every province, it was that long before the govt provided funds for a worker to come once a week and take Donny out. After a few months, that worker quit. When Don’s mother died a couple of years later and his dad moved into a senior’s complex, Don moved to Vancouver to live with his sister.

In British Columbia, families are not supported financially to look after their loved ones with disabilities, so there was no option but to place Donny in care, although it was not what anyone wanted. After 18 months waiting for a placement, the family funds ran out and after a series of emergency letters were sent to key government officials, a place was suddenly found for Donny.

His face was white the day he was brought to his new placement. Again, he was taken from the home he had gotten to know and plunked into a new environment without any say or control. Luckily, however, he made fast friends with Gordie, a peer who was also living in this home. They were inseparable and when Don went to visit family, he always asked to go back to Gordie.

Those happy days came to an end, though, and Don was moved again, this time in a home with 4 boys. Again, he was forced to leave behind a familiar place. He lived in his next placement for 7 years until he began telling his sister he was being hit. For two years she struggled with this, talking to the caregivers, advising the government, asking for supports so she could bring him to live with her. Nothing created results. Don began living with his sister on weekends and holidays. Increasingly when she dropped him off, he kept asking to stay at her house. Sometimes when she brought him back to the caregivers, he ran back out and got in the car with her.

Finally, one day, she decided to keep him at home – at least for a few weeks while Don’s nephew was visiting. Don loved being with the family and didn’t want to go back, even to visit. It became increasingly clear that it would be dangerous to his well-being to force him to go back.

Now, Don and his sister struggle to make their situation work. Marlene works full-time and Don spends 5 hours a day at his day program. Again, the family has been financially impacted by the need to pay for caregivers and other expenses. They still live in a one-bedroom suite because there isn’t financial support available for this family to pay for a larger place to live. If Marlene was a stranger who had decided to go into the business of setting up a care home, she would be eligible for all kinds of benefits. But now they struggle.

Sometimes Marlene wonders if she did the right thing. She wonders if Donny would be better living with others where he could, at least, have his own room. But the battle has been too hard won and there is still much to do. Don is happy and people notice a change in him for the better. That has to be worth it.