I met Sonny on the ferry from Vancouver to Victoria, the island capital of British Columbia. Sonny is 29. He works at local churches vacuuming floors, folding bulletins and any other jobs that need to be done. His teachers have described him as a social butterfly.

Sonny never travels without his mother. Every morning his father showers him and shaves the soft skin of his face. Sonny is severely developmentally challenged and requires the one-on-one care of a three-year-old child. The clinical diagnosis is psychomotor retardation and autism.

Surrounded by the blues and greens of the Strait of Georgia and the Gulf Islands, Sonny’s mother Deborah tells me their story: how Sonny almost died at three, how he used to spend hours in the kitchen washing and sorting his collection of plastic bugs, how they toilet trained him at 12 amid the disbelief of professionals, how ugly, scary and cruel the road has sometimes been for Sonny, how her faith has prompted her onwards.

Exhaustion drags on Deborah’s features but her eyes are alert. Sonny motions to his mother and she leans in.

”He wants to know if he can sit with you,” she says.

”Of course he can,” I smile at Sonny and pat the seat next to me as he moves to the row in front of his mother to join me.

”I go with you bud,” he says.

”Yes, we can go together,” I say, still sitting sideways so I can include mother and son in the conversation.

”Look!  There’s a harbour seal.’’ I point towards it.

Sonny Art

Deborah and Sonny have been working together to promote inclusion and to draw attention to the enormous challenges facing parents and caregivers of the developmentally disabled. Deborah has been writing about their journey in her regular newsletter, campaigning Canadian and US politicians and sharing her son’s story to help people with developmental difficulties and their families live a meaningful life. Sonny uses glitter glue and stickers and sparkly gems to create Sonny Art and raise funds for Inclusion Alberta (the Alberta Association for Community Living), which helps people with developmental disabilities.

In Andrew Soloman’s Far From the Tree, the mother of a child with Down’s Syndrome said she believes ”the siblings of kids with Down’s grow up to be more sensitive and thoughtful — maybe even more fulfilled — than the rest of the population.” I think this is true of anyone who grows up in a household where one of the members is challenged in some way.

Sonny’s older sister Andrea who is a music teacher just won an award for her school in part because she developed a new way to write sheet music, using colour-coded boxes on graph paper, to teach clarinet to a student who is dyslexic and dysgraphic. And parents of children who are different are propelled to new heights of resilience, adaptation and love, starting new organizations, teaching and meeting people they wouldn’t have otherwise met. Welcome to Holland, an essay written by Emily Perl Kingsley in 1987, about having a special needs child, is often quoted. She uses the metaphor of imagining a trip to Italy all your life and ending up in Holland.

Deborah calls Sonny her man-boy and she is encouraging people to appreciate Sonny for who he is and the things he can contribute. She has given him purpose and she has given him self-esteem and confidence. In a crowded conference he raises his hand to speak and says thank you into the microphone. He continues in ‘Sonny language’ before passing the microphone to his mother.

We are all deficient in some way. We are all broken. Most of us are broken on the inside where we can hide it: we have broken hearts, broken value systems, broken views on justice. We behave in thoughtless and selfish ways. We chase after the physical beauty and strength of youth and yet we ostracize and ignore the adult who remains childlike on the inside. Who still glows with innocence and gentleness even at 29.

Sonny isn’t broken on the inside. He is full of love and compassion. We may look at Sonny and see The Other, a mistake, someone lesser. He is not. He is all of us and he represents what all of us can become.

Learn more about Inclusion Alberta.