When you have a child who is diagnosed with special needs, your life can get clouded by fear. In our case, Syona was diagnosed with cerebral palsy just shy of her first birthday. Once I learned what cerebral palsy was, my biggest fears had nothing to do with wheelchairs or walkers (she uses both). I hadn’t even thought of whether she would be able to talk or sit up on her own. My biggest fear was that she would be treated like she was invisible and feel like she wasn’t supported.
As we settled into our special needs world, I heard so many stories of kids like Syona who had disabilities and these big, engaging personalities they used to draw everyone in. They had a light inside that shone right through—past their wheelchairs, walkers and leg braces—and grabbed hold of anyone who was open enough to engage with them. But over time, as the kids got older, this light dimmed. It wasn’t because the kids themselves changed. It was because they were isolated, despite being surrounded by people and supports that were in place to prevent this sort of thing.
Earlier this week, the Office of the Provincial Advocate for Children and Youth released its We Have Something to Say Report. This report compiles and highlights the lived experience of children and youth with special needs, their families and their caregivers. The report includes experiences at home, in the community and at school, ranging from very personal situations to how the support systems that are in place across the province actually play out in reality. “By speaking out, young people with special needs make themselves visible,” says Irwin Elman, the provincial advocate for children and youth. “It is a risk, but for the young people we spoke with it, the wound of invisibility was a harm they no longer wished to endure.”
Syona’s only five, but we’re already working on self-advocacy. Next year she’ll transition out of the specialized school she’s in and will attend a local school for kids of all abilities. We want to make sure she’s able to communicate her needs and has the language and tools to help educate kids who may wonder why she uses a wheelchair or talks a little differently. As she gets older and matures, my hope is that she will find her own voice and advocate in a way that feels right for her. For a while I worried that Syona’s own light was dimming as my outgoing little girl had moments of shyness and refused to talk. But as it turns out, that was just her way of figuring out who she is, what she wants to say and who she wants to talk to. And that’s ok.
There are so many stories in the report about kids and youth being marginalized, being invisible, having to exhaustively fight for the supports they are entitled to and need. It would be easy to read it and worry about our future, and the future of families like ours. But what I read was hope. So much hope. People were willing to share the best, worst and everything in between. And that’s what powers change.
I can’t wait to see what happens next.