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31 January 2019

Telling it like it is

By Berton Woodward

Sara Pot wears several hats—she’s a writer, a public speaker, a volunteer, and above all, a mother. But most particularly, perhaps, she’s a voice for families who have children with special needs. Living in St. Catharines, Ontario, she and her husband Ralph have four girls aged 9 to 16, and the younger two, Rachel, 12, and Janneke, 9, each have complex developmental challenges. Both girls are non-verbal, in wheelchairs and needing constant care. In blogs, articles and talks, Sara delivers a refreshingly straightforward account of the highs and lows of life in her situation.

“I call it living grief,” she says. “It’s important to be honest and authentic. I don’t want it to be what I call inspiration porn—people saying, ‘Oh, I don’t know how you do it. You’re so inspiring.’ But I also don’t want people to be put off by sorrow and angst—it’s a fine balance.”
 
So she has written about her “tears of frustration” when a family camping trip didn’t quite go right, but she also speaks of her joy in seeing her girls’ progress. “You have small achievements that are big deals,” she says. “You try to find a new normal, I guess, and I write about that quite a bit. What is normal for us? If we’re going to go somewhere, we’re not just hopping in the car and away we go. There’s just this whole 20-minute procedure that has to happen. In this particular life, there is not a lot of time to rest. I think that resonates with a lot of families.”
 
Sara Pots with her family on a paved path in a forest

The family has been going to the Niagara Children’s Centre since 2006. “In those first few years of the girls’ visits, I appreciated the insight of the clinicians with ideas to support my girls—and their listening ear with my own angst in reluctantly embracing my new normal,” says Sara. “The intimate environment, matched with the team of therapists, created a consistent thread in my sometimes tattered and topsy-turvy day.”
 
The relationship, she says, has since evolved from her “deer-in-headlights” feeling to one that “still includes worries and questions but also assurance and confidence.” While there is never enough funding, she adds, “I do believe systems can work with families when they emphasize collaboration and interdependence.”

Sara works with Niagara Children’s Centre helping with its online presence and has organized workshops for the annual conference of Empowered Kids Ontario, where she also serves as a board member and provides a family voice for the government relations committee. Rachel and Janneke each attended Niagara Children’s Centre School for four years and have now moved on to a community school.

Sara says she has a business card with no business on it but a vision statement. “I’m passionate about the inclusive vision of belonging,” she says. “And what goes into that is the idea of healthy family engagement in whatever we’re doing—schools, treatment centres, anything. We’re all contributing, we’re all interdependent. This is what drives me to get up in the morning and do things, in addition to taking care of my kids.”