It’s a shift in how parents of youth with multiple disabilities see their children finding their place in the world and it’s most likely to take root when families share experiences, says Susan Beayni, who runs a monthly networking group at Bloorview Kids Rehab for parents of youth with complex disabilities entering adulthood.

“Sometimes families of people with lots of needs have had their dreams stifled along the way, and they almost forget that their son or daughter has gifts or talents,” says Susan, whose 22-year-old daughter Rebecca has cerebral palsy, an intellectual disability and doesn’t speak, but whose life includes dancing with the Spirit Movers liturgical group, volunteering with a Grade 1 class and at the Royal Ontario Museum, and advocating for people with disabilities at the United Nations.

“The most exciting part of family networking is a paradigm shift in the parent’s thinking from ‘society considers my son or daughter a burden — I’ll be lucky if I can get someone to take care of their basic needs,’ to ‘my goodness, my son or daughter has a gift to share,’” Susan says. “‘It’s not just that I want them to have a good quality of life, it’s that society needs the gift of my son or daughter.’ This is not about asking for charity, it’s about asking for participation and citizenship, nothing more than what everyone else is asking for. When they make that shift, parents go from feeling hopeless to feeling hopeful.”

Susan is part of an innovative model at Bloorview to develop parent-led support groups where families discuss the issues and opportunities they face in supporting their child’s growth into adulthood, attend education workshops, share practical and emotional support, and advocate for new services.

“Typically, the focus has been on what their child can’t do,” Susan says. “Within a family networking group, the focus becomes ‘who is this human being, what do they really like to do and what are their dreams?’ It’s about starting from the gift of your son and daughter, where that gift might be used in the community, and ‘blue-skying’ it.”

Susan says it’s paramount that parents think ‘outside the box’ when planning life opportunities for a child with significant disabilities after high school.

“Let’s say the young person says he wants to be an astronaut. Rather than parents just throwing that idea out, what aspect of being an astronaut is important to the child and how can we meet that dream in a different way? Perhaps he can volunteer at the science centre. Maybe we can creatively piece together different resources — a bit of home-making, a bit of Special Services at Home, a bit of attendant care, to make it happen.”

Hearing other families’ stories gives parents the permission and language to dream big for their children’s futures and the boldness and creativity to advocate for them. “It’s about starting with the person and looking at their life as a whole, rather than wondering ‘what service comes next?’” Susan says. “Instead of jumping the gun and looking for a day program that probably doesn’t meet the youth’s dreams, families talk about their child’s gifts and where they might best be used.”

Susan says one of the key benefits of parent-led networking groups is the emotional support and practical information that can be shared amongst those who have walked in your shoes. “Parents feel they can open up in ways that they can’t with a professional,” Susan says. “You can let your hair down and really share because the other parents live the same experience, know the struggles and get it. They also know the nuances of how to work the system.”

Susan has piloted the concept of the family facilitator at Bloorview with families whose children receive augmentative communication services. Two other facilitators have been hired to run similar groups supporting parents of children transitioning into adulthood in other programs.

“We have truly gone with what the parents said they want and need,” Susan say. Workshops based on parent requests have focused on relationship building, work and living opportunities and sexuality. “The families have even expressed the desire for a new two-week summer camp for people who use augmentative communication and are in transition — similar to the Independence Program Bloorview already offers,” Susan says.

“This network has given parents a forum to discuss what they want and the strength to advocate for it. I think the fact that Bloorview is listening is really powerful.”