A family mentor 'gets it, so we hit the ground running'

Anna Trbovich with son Ken

By Louise Kinross

Anna Trbovich felt her world shrink when her son Ken, 10, who uses a wheelchair, became too heavy for her to lift.

“I’m smaller in stature, and I felt like now we can’t go out as a two-some,” she says. “My husband and I were also stumped about how to change Ken when we were out. What if there was no adult change table? I had little and big things to ask, but I didn’t know anyone who had older children with the same personal care needs as my son.”

Anna applied for one-to-one peer support through the Family Mentor Program at Holland Bloorview and was connected with Joanne Downing, a family mentor whose son Matthew has similar needs and is now an adult.

The pair first met on Zoom. “It was warm and welcoming, and like talking to someone you already know, which was a relief” Anna says. “Even in health care, the onus is on parents to explain their child. Joanne gets it, so we hit the ground running."

Anna says she valued being able to problem-solve with a parent whose child is further along in life. For example, “Joanne said we could still use our wheelchair van bench to change Ken on. She gave me ideas about things that I didn’t think were doable. We could also talk about the stuff of daily life, like what type of diapers are best. Because her son is older, it’s like looking into the future to find out how they do things.”

Holland Bloorview's Family Mentor Program was redesigned and relaunched in 2022. Since then over 60 parents have been matched with a family mentor. “There’s always been a gap for peer support programs, particularly for caregivers of children with disabilities and complex medical needs,” says Clara Ho, manager of client- and family-centred care and partnerships. “We knew through our family navigation hub that feelings of social isolation were reported, and families identified building social connections as a need. Connecting with someone with a similar experience who gets the challenges helps families feel less alone and creates a sense of community and mental wellbeing.”

Ninety per cent of our current mentees choose to receive support virtually because it’s convenient.

They meet with mentors for up to four sessions on topics they choose. It could be learning about how to adjust to a new diagnosis; practical care strategies for your child; hospital and community resources; how to support your mental health; or how to access funding.

“We met once and I gave Joanne all of my questions,” Anna says. For example, “Where do you go at the Royal Ontario Museum or in the grocery store if your kid needs to be changed? Then Joanne sent me two follow-up e-mails with the information, which was amazing because I could save it and refer back to it.”

Joanne had reached out to other families to come up with a list of places in Toronto that have adult-sized change tables or a first-aid bench that could be used for changing.

"I find that often the answers parents are seeking are not found in a book, or a pamphlet, but through parent-to-parent or caregiver-to-caregiver conversations," Joanne says. "Often I don't know the answers, but I will dig and find some solutions, or provide suggestions."

Joanne also reminded Anna that when Ken is 17 ½, they need to apply for the Ontario Disability Support Program. “I put that in my calendar,” Anna says.

She encourages other families to try the program. "It's helped me to take that personal stress off my shoulders. For our family, all of a sudden our world opened up. We can go to places and there are things that are doable. That's pretty awesome."

Mentoring sessions are limited to four, but if something comes up in the future, mentees can reapply for additional support. Interpreter services are available to families who need them.

Holland Bloorview family mentors are family leaders who receive specialized training that includes compassionate communication, setting healthy boundaries, privacy and resource navigation. They draw on their lived experiences as caregivers to provide peer support.

"I really get that warm and fuzzy feeling when I can help another family," Joanne says. "This is when we learn that as a group we will find the answers."

Families can refer themselves by filling out this online request form.

For more information, visit Peer Support and Mentorship.

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