Living With a Cognitive Disability.
Written by Kevan McBeth, Chief Purpose Officer, Servant Leadership Centre of Canada
If you know me, you know that I have a daughter with Down syndrome. Lauryn came into our lives 15 years ago (16 in October - can that actually be true??!!!), and brought with her a world of issues and concerns that two first-time parents had no clue how to deal with. We did all we could to make sure that Lauryn had everything she needed in her formative years- got her speech therapy, took her to Mommy and me Yoga classes to work on her core strength, enrolled her in everything that we could think of to teach her social skills, and put her an inclusive pre-school program that taught her as much about the routine of school as school itself.
We heard from those who “walked the path before us” of what it might look like dealing with issues connected to individuals with cognitive disabilities - how they’ll need help learning how to navigate the world and how we’ll need to help them regulate themselves to be socially and emotionally appropriate as they grow older. It sounded, and at times can be, a lot of work.
But every now and then, I realize something. As Lauryn gets older, the expectations on her behaviour grow, and the gap between social expectations and her ability to conform grows wider and wider. I mean, I get it- she’s not at a cognitive level of her peers when it comes to doing Algebra. Fair point. But its the social aspects of the way that we try to teach her that have me thinking differently.
Now, she’s my daughter so I recognize that I am looking at things with daddy-coloured glasses on, but she’s got this insanely high level of comfortability with who she is, and has no real concern with what others think of her - to be honest, I am not sure that she’d even recognize when others make fun of her or are condescending to her. She has her own Instagram account and celebrates (with a high degree of enthusiasm!) every single like she gets for a picture of her dessert she had at a restaurant or a picture she posts of the sky she took on her iPhone - she never gets more than 5, but she could care less how many she gets, she thinks its great that others like her posts. She sings like there is no tomorrow, will always believe in Santa Claus, and will never let anyone tell her that ice cream is not the single greatest food on the planet.
And then last week I came across this young man on Facebook. His name is Christopher Yancy, a young man with Down syndrome who’s the same age as my Lauryn, and is a student at Mill Creek Middle School in Georgia. Christopher won the “Kindness Award” at his class graduation 6 days ago, and as you can see by the video posted, dude went off when he learned he’d won. Christopher ran up to the stage like his name just called on the Price is Right, and the audience lost their minds and cheered to match his excitement level. Why? Because his actions, his emotions and his excitement gave them permission to let out a little shaft and clap and cheer a little harder than they might have if someone else won the award.
That video has stuck me with the last couple of days, and reminded me of that thought in my head that I have every once in a while when I watch my daughter grow up and become her own person. To the world at large, she is someone who needs social “guard rails” put up around her - to make sure she doesn’t embarrass herself.
But the more I think about it, the more I realize we’re the ones living with the cognitive disability. Heck, that’s actually what keeps us busy at the Servant Leadership Centre of Canada - the fact that we can’t convince ourselves to be as vulnerable as Lauryn is when she belts out the (wrong) lyrics to the latest Ariana Grande song or Christopher opens the door for someone at school and earns himself a kindness award.
I can’t remember the last time I sang out loud in the car (with or without someone else in the car!), showed my emotions as they happened to me in real-time, or ate a piece of cake with the zeal and all-in love of for chocolate with the emotion of someone who does not give a f*ck what others think.
I’ve come to understand that I am the one with the cognitive disability.