My Walking Walker
Reposting today in celebration of Aidan’s Pura Gene sister Audrey, who got her first set of wheels this week. We watch with hope and excitement as she takes on the world in whatever way she chooses.
Meet my son Aidan.
He’s a Walking Walker who Walks.
Yes, he walks with assistance and only short distances but still, he’s a kid who walks.
Aidan was born thirteen years ago with an undiagnosed developmental disability and low muscle tone. We worked hard to get his trunk strong enough to support his body, to hold himself up on his two feet and get his legs moving.
Aidan walks. And I’ve celebrated every step of the way.
And yet, he can’t get very far. He can’t explore his own environment of his own volition.
But I’m an Optimist. A Hoping Hope-er who Hopes. It’s my job as Aidan’s mom to hold the bar high for him.
And yet, that got in the way for Aidan.
When he was ten years old Aidan needed to be evaluated for a wheelchair. Yes, his physical therapist had advocated for one earlier (three cheers for early mobility) but I wasn’t emotionally ready.
He’s a Walker and a chair would make him look so….disabled…. like he can’t walk.
A wheelchair didn’t sound like Mobility and Freedom and Independence and Rainbows and Unicorns.
It sounded like failure, like defeat, like giving up.
My son would be relegated to a sedentary life and I would be the Quitting Quitter who Quit on him.
As I sorted through the many practical decisions about getting a chair – manual or power, could he propel himself or drive, could it be used across all circumstances – I got stuck on my feeeelings.
While I wanted to say no to a life of can’t and dependent and impaired, I almost said no to a life of exploration and self-determination and cognitive improvements.
This video chronicles our difficult decision making process:
(subscribers will have to click through to blog to view)
So now I’m the Preaching Preacher who Preaches early mobility and be brave mamas and be open to tough choices. But I’m still the Hoping Hope-er who Hopes because Aidan is still a Walking Walker who Walks and Drives and Propels himself and uses any means necessary to get where he wants to go.
Even to the cookie jar. Isn’t that what Smarty Smarty Pants do?
Check out the factors we considered and the research that matters on our Mobility Journey page and share with others who may have questions.
This post originally appeared on What Do You Do, Dear? a blog you should follow to learn more about mobility issues and see some seriously adorable kid pics.