Announcing WAWOS Canada
Growing up in Canada, the outdoors were the backdrop for so many of my early memories. Playing street hockey in Ontario with friends, hair in a ponytail swishing back and forth as I chased a tennis ball through a tangle of legs before someone inevitably yelled ‘CAR’. Camping on a crisp New Brunswick weekend in the final challenge for the Gold Duke of Edinburgh Award. Hurtling down the icy hills of Montreal, careening toward frozen bales of hay set up to keep wayward sleds from launching into traffic. I was a proud Canadian kid who loved adventure.
One of the adventures I will never forget was with our family friend, Gordon. Gordon had Cerebral Palsy, and while he was largely non-verbal and used a wheelchair to get around, he was a bright and creative young boy. When his family would come to visit, my siblings and I found new ways to communicate and play with him. A drawing he created of a boy skating still hangs in my parents’ home.
This was the early 80’s, and few public spaces were accessible to him. Even fewer opportunities for adaptive experiences existed.
One year, our families decided to spend the weekend away together, and my brother and I were trusted with Gordon’s care. Outside, in his wheelchair, we ventured down a rutted gravel slope. Gordon laughed as we picked up speed and he yelled “faster”. We were more than happy to oblige. Half way down the slope, one of his wheels caught and his chair flipped over! Quickly, we righted the chair to find dirt in his teeth, blood on his lip, but a huge grin on his face.
When his parents returned, we sheepishly explained what happened. They went to check on him while we waited nervously. Emerging from his room, they walked over, hugged us, and said “Gordon had so much fun! Thank you for giving him his first fat lip.”
Gordon was like any other kid. He wanted to be outside, to go fast with his friends, and to not be treated as different. And while I vividly remember that moment, I didn’t really understand their experience as a family until it became my own.
Fast forward to 2009, a world away in San Francisco, where my husband and I were expecting our first child. Sofia came to us early at 28-weeks via emergency c-section and weighing only a whisper over 2 pounds.
She was fearfully tiny, but incredibly mighty. Discharged from the NICU ahead of expectations, we delighted as she made gains month over month. There were a few missed milestones, but we were told this was common with premature birth. At 16 months, she started to pull to stand, and we imagined it was just a matter of days until we’d all step together down the hills of our neighborhood.
So when her diagnosis of Cerebral Palsy was given a few months later, there were a great many tears, a lot of guilt, and a ton of learning. The early blind spots in my own thinking around physical difference were brought into sharp focus as I grappled with the incredible importance of inclusion.
As I read more about CP, it was clear that what I thought I knew was wrong. Cerebral Palsy is non-progressive. This diagnosis was Sofia’s floor and no one could tell us where her ceiling would be. Our responsibilities as parents were no different than before: to encourage her to be the best Sofia she can be, to believe in her, to celebrate her interests, to ignite her curiosity, and inspire her to pursue her passions.
We wanted her to know she could do anything. So we did everything!
When Sofia told us she wanted to be a ballerina, I was fortunate to meet the amazing Genevieve Weeks, founder of TUTU School, who did not hesitate to welcome our girl into a class with neurotypical children. At that time, Sofia was using a walker. We would go for daily strolls to help build her strength and endurance. One day, Sofia asked “Why are people staring?” I explained that maybe they were just curious about her walker. She nodded once and then added, “but when I look at them, they look away.”
My heart broke, just a little.
Days later, I was still turning her words over in my mind: how could I motivate Sofia to step AND encourage others to look beyond the device and see my girl? An idea took shape. I bought a sewing machine, signed up for classes, and made her a walker cape, adorned with a tutu to celebrate her love of ballet.
Sofia’s reaction was electric. She wore a huge smile as she stepped around the park, but it was the reaction from others that was truly magical. Rather than look away, both adults and children approached her to say “Ohhh, I love your tutu” and ask “Do you like ballet?” She would grin and reply “Yes! I’m a ballerina..I take ballet.” I could see their joy and surprise as my daughter challenged their perception of what she was capable of doing.
In 2017, we turned this spark into the U.S. non-profit WAWOS. The name stands for “We’re All Working On Something”, a message we hope reinforces that we are more the same than we are different. Our flagship program, WAWOS Wear is 100% volunteer-supported and has provided more than 1500 creatively designed walker capes, for free, to kids with assistive devices. In 2019 we added WAWOS Wishes to award directed gifts to nonprofits that provide accessible adventures for kids with physical differences.
Today, I’m excited to share that WAWOS Canada is a fully registered not-for-profit expanding this work to the country that shaped who I am. I’m still that proud Canadian girl who loves the outdoors, and together with our passionate board, we are committed to providing children of all abilities with experiences unlimited by their diagnosis. Please join us in sharing this mission of inclusion.
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