Raising a child with a developmental disability can sometimes feel like walking a lonely road without a map. Robert Zandona walks alongside parents, encouraging and guiding, because it is a road he has also travelled himself.
“There's so many parents out there that get a diagnosis for their child and they have no idea what they're up against, where to turn or how to advocate and do what's best for their kids,” says Zandona.
That’s why he jumped at the opportunity to join WoodGreen’s Parent Outreach Program as a Caregiver Support Worker. The program helps parents of children with developmental disabilities teach their children independence while also coaching parents on the challenging role of raising a child with a disability.
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Paying it forward to other parents
That’s where Zandona’s expertise is invaluable; he knows the twists and turns that lie ahead for many families when it comes to the unique needs of their child. Zandona’s son, Tino, has autism. He is now 28 years old and living a full life thanks to a father who fought hard to ensure his son had the support and skills needed to succeed.
Zandona credits much of that success to a parent support group he stumbled upon when Tino was in primary school. Now he wants to pay that forward.
“I like helping moms and dads feel better about being more in control of their situation,” he says. “Because it’s hard. It’s really hard.”
Success Story: Experienced parents guide others raising children with developmental disabilities
All staff are parents of children with a disability
All six of the Caregiver Support Workers and the Supervisor with the Parent Outreach Program are parents of children with developmental disabilities, but Zandona is currently the only father in the group.
He admits it’s unusual for a father to take the lead in advocating for a child with a disability, as in nearly 90 per cent of his cases it is the mother that is navigating systems and skill-building. Zandona would like to see more dads involved in the process and hopes sharing his son’s successes drives home what an empowered parent can do for their child.
Working together to set goals
The program is open to moms and dads (or primary caregivers) of children with any kind of developmental disability, but Zandona says he mostly sees parents whose kids have autism or Down's Syndrome. There are also parents of children with chromosomal deletion and other developmental disabilities. The program currently supports 140 families year-round.
Zandona helps parents figure out how to get their child to be more independent with things like daily living tasks such as brushing their teeth and getting dressed.
“Together we’ll brainstorm a task that they'd like to see their child to accomplish on their own,” he says. “Then we'll break it down into steps so the parents can work each step to get the child to do that task independently.”
Standing in the parents’ corner
He also helps parents understand what services their children are entitled to. A big part of his role is supporting parents when dealing with the school system. This process, he says, can be incredibly intimidating for a parent to face alone when meetings usually involve seven or eight school administrators.
“After going to several meetings with the parents and letting them see what kind of arguments to bring, demands to make and how to stand up for themselves, they are much better equipped.”
Pre-pandemic, the program did mostly home visits. Now, most of the meetings happen online, which Zandona says has enabled him to see more parents, more often and at times that work for their family. WoodGreen does not require a formal diagnosis and parents can self-register, meaning no agency or medical referral is necessary.
Zandona says that although the Parent Outreach Program is about helping parents, ultimately when there is support like WoodGreen provides, the entire family benefits.
"We just try to help the parents do less for that child and maybe that means they will have more free time to spend with their other kids, too."
Find out more about our Parent Outreach Program.
