Gwendolyn Gerden Purcell is nine years old, but her mom Venette calls her “a very old soul.” In her hometown of St. Catharines, Ont., she does all the things girls her age like to do — watch and play sports, do crafts, hang out with friends. But unlike many others in her peer group, she has been growing up fast and facing adult challenges.
Her six-year-old brother, James, was diagnosed with classic autism in 2014. He’s only now learning to communicate his needs verbally — the result of intensive therapy — and he requires comprehensive, around-the-clock care. It’s a family affair: Gwendolyn pitches in to cook and clean and keeps a watchful eye on her younger sibling. Those are big responsibilities for a little girl.
His mother was worried about the impact the situation was having on her daughter. Although she and her husband try hard to nurture both of their children, circumstances dictate that James gets the lion’s share of attention. Venette noticed that Gwendolyn seemed to be bottling up her feelings. She wasn’t sure how to address it.
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Gwendolyn’s situation is far from unique. According to a 2012 Canadian study entitled Young Carers in Canada: The Hidden Costs and Benefits of Young Caregiving, an estimated 12 per cent of youth act as caregivers, providing support for family members facing issues related to chronic illness, physical and intellectual disabilities, and addiction and mental health issues. The most recent Statistics Canada figures indicate that roughly 1.9 million young Canadians aged 15 to 29 are providing care of some sort.
While the role can produce certain benefits — greater maturity, compassion, resilience, and tighter bonds with family — young carers also frequently have to deal with anger, isolation, and loneliness. Studies have found that they tend to experience higher levels of depression and lower levels of self-esteem. But when it comes to support programs, their needs are often overlooked.
“With Gwendolyn," she says, "I wasn’t sure what was available to help her. I wanted to find something that was just for her.”
Another family with a special-needs child suggested she look into the Young Carers Initative (YCI), run by the not-for-profit Powerhouse Project. Venette had never heard of it, but bolstered by enthusiastic comments from her friends, she decided to learn more to see if it might be a fit for her daughter. It was — Gwendolyn has now been a participant for two years.
Founded in 2002, YCI is a registered charity that receives funding from the region’s Alzheimer Society and the Province of Ontario and operates centres in St. Catharines and Hagersville.
Fifteen years ago, the idea of addressing the needs of young carers was a new one. The first program of its kind in Canada, YCI looked for inspiration to the United Kingdom, which already had a wealth of research identifying the need for special programming for young people in families dealing with ongoing challenges. It decided to focus on creating welcoming spaces where carers could make new friends, play games, paint and draw — essentially, spaces that would allow them to leave their grown-up duties behind and just be kids.
Its mandate has, though, evolved over the last few years. “One of the changes has been to shift from just focusing on young carers to taking a family approach,” explains Michelle Lewis, YCI’s executive director. “In 2013, we actually changed our tagline and our branding from ‘Kids lending a helping hand when their family is in need’ to ‘Caregiving is a family event.’
Carving out family time in a care-giving situation can be challenging for various reasons, including transportation and cost. So the program is now offering more family-centric activities — like barbecues in the park and movie nights — that bring everyone together in a relaxed, supportive environment. Still, the primary focus remains their young participants, who range in age from six to 25.
Fun plays a starring role when they visit the centre for a weekly visit, but, as Lewis points out, the emphasis is on “play with purpose.” That means helping youth develop life skills.
“We want to make sure that they're not feeling like they're in school,” she says. “They can get out of the house and be with their friends while doing something that is useful for them. It's always some sort of take-home lesson about managing your emotions or a positive psychology kind of thing.”
For Gwendolyn’s mother, Venette, the program was “a lifesaver.” She has seen her daughter flourish with support from the staff, which is made up of social workers, child-need specialists, and others with a background in psychology. “When she was having her intake appointment to assess her as a fit for Young Carers, I was surprised to hear my daughter talking about how she felt about her family and her brother openly like I had never heard before. Those who work there are very good at what they do. Right off the top, they made her comfortable enough to discuss things in a way she is not able to at home.”
The family was introduced to YCI at just the right time. Venette had been increasingly worried about her kids, about the stress they had to manage. She had wondered how they were going to be able to cope. Now she has the comfort of knowing her daughter has a support system of her own. “I’m so happy Gwendolyn has an outlet, a place where she feels she can express herself and be a kid,” she says. “These are trained professionals who really care about my family. We would be lost without them.”
Michele Sponagle is a freelance writer and editor whose work has appeared in the Globe and Mail and Flare.