Today is PWS Awareness Day, and it got me thinking about what a goal of raising awareness really means. It’s a phrase that’s used so often but rarely with practical suggestions on what it might look like. For me, it’s looked like big things…the turkey trot my friend and I started in 2015, the chance to serve on the faculty panel at a medical feeding conference, and of course the resources I bring to teachers and therapists in and out of Eliza’s IEP meetings. But I think the most powerful thing it’s looked like is ordinary conversations. Awareness begins with curiosity, and while I’ve fielded insightful and thoughtful questions from adults, I think (as with so many things), kids take the cake here. I couldn’t pull this little wagon around without loads of stares and questions from children we’d pass. Perhaps it’s their inquisitive nature, or perhaps it is that they come with an innocence (and an absence of filters) that allows them to ask pretty much anything without fear of asking it “right.”
The trouble is we often shame or silence their questions, and that furthers the narrative that “we don’t talk about it” or that it’s not polite to wonder why Sam needs braces on his legs or Susie gets so upset when the fire alarm goes off. Once we understand, once the veil of mystery and even shame is lifted, we have come to a much better starting place. We do this with race, with accents, with stutters and head wraps and ticks. We ignore them under a false belief that this is the better, kinder thing to do, and then we model – and often directly instruct – kids to do the same. I can’t speak for everyone, but I know many of us truly welcome the questions. Kids (and grownups for that matter) don’t have to ask it just right for the conversation to land in a place of better awareness and understanding, and we want that desperately for our children.
So if there is anything you want to know, ask here (or any other which way you prefer). I welcome your questions wholeheartedly because I know they will only raise awareness, and as Eckhart Tolle famously said, “Awareness is the greatest agent for change.”