It was the right time for me to have this help, mother of autistic child says
You get a sense of how tired Elena Kozyk is as she describes navigating her daughter, Masha, a high-functioning nine-year-old with autism spectrum disorder, through a pandemic. Her sighs are heavy, and her voice trails off as she discusses the hardships caused by school closures, canceled community programs, and vanished social supports. It’s clear these challenges are exacerbated when caring for someone with a disability.
“She has some issues with behaviour, issues with communications,” Kozyk says of her daughter. “She’s sensitive to smells and sounds. She has to move a lot and she can become overwhelmed in public places or spaces she doesn’t know.”
Kozyk is not alone. In Ontario, it is estimated over 235,000 children and youth live with physical or cognitive disabilities. Pre-pandemic, only 56 per cent were participating in sport and recreation. That percentage plummeted with COVID-19 restrictions and stay-at-home orders.
“During quarantine, there were no activities outside the home, no opportunity to communicate with someone other than me,” Kozyk explains. “The main problem is the lack of social life and activities. For the last year, we didn’t have anything. It’s hard to find something suitable for her. It’s not normal to spend so much time with your parents or without other kids.”
Kozyk’s situation became even more challenging when her husband passed away suddenly in August 2020 – six months into the pandemic. “It was a very stressful time for us,” Kozyk says. “I desperately needed help. Any type of help. A few hours a week to have a rest.”
Meghan Saundercook, Manager of Inclusive Programs and Outreach at Jays Care Foundation says she often hears similar stories. She oversees Challenger Baseball – a national program that adapts the game of baseball to meet all physical and cognitive abilities. The program serves more than 8000 families across Canada and is designed to help develop life skills inherent to baseball such as teamwork, courage, and independence.
As pandemic restrictions wore on, Saundercook learned more about the unique challenges’ families caring for children with disabilities were facing. After conducting a needs assessment, Jays Care Foundation – the charitable arm of the Toronto Blue Jays – provided grocery gift cards, winter jackets, adaptive baseball kits, and virtual programming for their members. But Saundercook realized parents and guardians of children with disabilities were not getting the rest they needed.
“Our families were drained, getting very little support,” she says. “We started to think what we could do to provide them with a break or respite.”
In response, Saundercook forged a budding partnership with Recreational Respite – a Canadian not-for-profit that identifies barriers to participation for those with disabilities or mental illness. The two organizations adapted Challenger Baseball to allow for safe, in-person sessions consisting of games and exercise. The program matches a family from Challenger Baseball with a trained worker from Recreational Respite to provide in-home, reputable, quality aids to families for about five hours per week.
“We are trying to help the family by giving them back time,” Saundercook says. “It’s an opportunity to provide the guardian with some breathing space. We provide programming so they can focus on themselves or other stressors while providing their child with an opportunity to connect with others.”
Along with Challenger Baseball, Recreational Respite keeps busy facilitating a variety of therapeutic recreational programming. Amy MacFarlane, Founder and CEO of Recreational Respite isn’t surprised of the demand. “In a time of social disconnect, it’s very important for families to connect in various ways,” she says. “We are looking to reduce isolation and increase connectivity. Our goal is to offer respite to the family and meaningful engagement for their loved one at the same time.”
Each Challenger Baseball program plan is tailored to the needs, abilities, and interests of participants and their families. Sessions involve sports, outdoor play, crafts, puzzles, dance, and other active activities. MacFarlane believes this person-centred approach helps achieve program goals.
“Families are getting the respite they need,” she says. “My hope is that we continue to help more families in need and continue to collaborate with other organizations, like we have done with Jays Care Foundation. Doing things together is better. It has a greater impact and is far more sustainable.”
Kozyk admits the pandemic has been draining. But joy seeps into her tired voice as she describes the effect the program has had on her daughter. “She’s absolutely happy,” she says. “She’s talking about it all the time. She shares ideas on what they can do next time. I’m happy she likes it.”
For Kozyk, the program is ending soon, and she is not sure what she will do next. “I don’t have anyone here to help me,” she says. “It’s really hard. We all need breaks.”
Still, she remains hopeful the program can be extended and can include other families. “This is a really good project for families to participate in,” she says. “I hope other organizations can initiate similar programming. I am grateful we had the opportunity to participate. It was really the right time for me to have this help.”
Benjamin Rempel is a writer and essayist specializing in health and social justice issues. His work has been featured in The Toronto Star, Abilities Magazine, Healthy Debate, and other outlets.
This article was written in June 2021. Due to the evolving nature of COVID-19, some information may no longer be accurate.
For more information on the Respite Support Opportunity, please contact Zack.Shaban@bluejays.com
