For Dani Botbyl and her family, the past seven weeks have been challenging ones.
Her son Devon, 16, was born with a rare chromosome condition that leaves him with global delays and autistic tendencies. For more than a decade, Red Roof Retreat has been Devon’s “happy place.” Since the COVID-19 pandemic became a reality, though, he hasn’t been able to attend the various programs he usually enjoys.
Steffanie Bjorgan and her staff made the difficult decision on March 13 to close all locations of Red Roof Retreat. The shutdown was necessary, as the first Niagara person reported to have contracted the virus was a resident of Ina Grafton Gage Village in St. Catharines.
That complex houses one of three locations for Red Roof Retreat, including the therapeutic swimming pool, a five-pin bowling alley, and activity rooms where Red Roof’s adult day program, teen night, Saturday camp and Dad’s Swim are held.
The services and activities provided by Red Roof Retreat become a major part of the lives of families with children or adults with special needs, for the participants who enjoy the activities and gatherings, and their families and caregivers who rely on these programs for much-needed rest and recharging.
“Our families were unbelievably understanding and supportive,” says Bjorgan. “At the end of the day, they want to protect their own loved ones. It is hard, though, when you’re providing a service that gives those families a break, and now . . . they’re getting no break at all.”
The Botbyl family (parents Dani and Scott, Devon and his 15-year-old sister Elise) live about five minutes by bicycle from Red Roof’s Concession 6 Ranch location. Devon’s connection to Red Roof began informally. “We’d go and enjoy the outdoor space there,” says Dani. “We’d visit the animals, play on the playground equipment, use the walking trail around the pond.”
As Devon grew older, he became involved in every program that was appropriate for his age.
With all those programs currently on hold, his mom admires Devon for being a “trooper.”
“He’s coping better than what I had anticipated,” says Dani. “Though his behaviour has been calm, right from the beginning he would wake up and ask, ‘is it Saturday camp today?’ And still, seven weeks later, he’s asking ‘is there a Red Roof program today?’ So he misses it, and we all miss it too.”
Devon is an extremely social young man, she says, who thrives on his connections with others at Eden High School, and at Red Roof.
“This has really thrown him for a loop,” adds Dani. “It’s heartbreaking to see the programs that bring so much joy to your child being cut off at the knees. His social network has been cut off. And we depend on a lot of the services at Red Roof to give us an opportunity to rejuvenate and get things done around the house. Now those things are on hold as well.”
Luckily for the Botbyls, Dani can work from home, and Scott is off work during the pandemic, but will soon be heading back to work as a carpenter with the District School Board of Niagara.
“We’re going to have to problem-solve how we are going to manage to care for Devon, because he needs care 24/7. We’ll have to juggle a few balls to see how that is going to work.”
For the time being, Red Roof’s summer camp, which Devon usually attends for six weeks, is also on hold.
“Right now, knowing that we might not have Red Roof Retreat’s summer camp, it’s throwing us into a bit of a tailspin,” laments Dani. With few alternatives for Red Roof clients, Dani says, “What are we going to do in the summer months, both for Devon’s enjoyment and for us to be able to carry on with our work lives?”
Says Bjorgan, “The impact of (our clients) being home, I’m not sure how each family has managed to do it. They’re getting no break at all. For some of our families, if you’re an aging parent, and you’re doing lifting and personal care, the pressures are huge on your body, your mental state and your emotional well-being.
“And when I picture some of our clients who are very physically active, or who have autism, they need to move, they need to get out, and they don’t deal well with change. They don’t deal well without a structure. It just breaks my heart.”
Bjorgan experiences all of this first-hand with her own son, 26-year-old Garrett. She and her husband Moe share Garrett’s care with nurses and Personal Support Workers, and that situation is still happening for the family, to a degree.
It’s hard to know what to do, she explains. “To take him out of his routine is very stressful, and some of those workers want their jobs. We have been super diligent, cleaning, disinfecting, and communicating really well with each other.”
“We did have a scare,” she adds. “One of our nurses became ill, but she tested negative for COVID. Every day you just keep your fingers crossed.”
Looking to the near future, Bjorgan still can’t say how Red Roof Retreat will get back to business as usual.
“When we look at all of our programs,” she says, “our most essential ones would be our daily programs and our respite. We would probably get those going first. We would do a slow start, we wouldn’t just open our doors and say let’s go. We don’t know whether or not this virus is going to spike back up, and I’d hate to open all of our doors and then be shut down again.”