Wheels that changed one life
In an earlier post, I shared my side of this journey, a decision-making path that parents of kids with special needs often participate in with their physical therapist. Each journey can be challenging and emotional for parents AND for therapists. Heather from Family Synapse shares her side of the challenge; as always, heart-felt, eloquent, and honest.
Balancing enthusiasm with compassion – the weight
of making big decisions
My son Aidan drives a wheelchair like a boss.
He’s 14 years old with a rare genetic disorder and uses both a power chair and manual chair for independent mobility.
But he almost didn’t. Because of me. Because it’s complicated. Because it’s emotional. Because it’s just…so…much.
When Aidan was 10 years old, Karen encouraged us to try out both a manual and power wheelchair. She had had this conversation with me years earlier when it was most appropriate, but I wasn’t ready. I couldn’t see beyond my desire to have Aidan walk. I couldn’t see the time I was wasting by keeping his world small and contained. And at the end of the day, it was hard all around for me to give up on him not being a Walking Walker who Walks. Karen tried to tell me all about independent mobility and how it stimulates cognitive development, but it didn’t quite seem real to me.
There was also a risk in believing her. What if all this independent mobility really does spur on all kinds of fabulous progress and it failed with my son? I could raise my expectations, believe my physical therapist, get my hopes up, only to be disappointed. Again. My job as a parent is both to believe in him, which isn’t as easy as it sounds, and to make wise decisions on his behalf, which are also complex and profound.
I didn’t take the idea of a powerchair too seriously. They’re huge. A big commitment. A complicated machine surely my son couldn’t figure out. Do you see that? Me, his mom, not presuming competence. That’s horrid to me now.
I wasn’t too keen on the manual chair either. That would take a lot of energy out of Aidan and he wouldn’t get far before I would end up pushing him anyway. But Karen and I agreed that it would be nice if he could even just turn himself a little, face a friend or pull up to a table to work. That’s all we were going for.
After trying out both a manual chair and powerchair, he could use each, well, a little bit. That’s to be expected, right? Why would we expect someone to learn something complicated so quickly? He needed time but that just led to a whole lot of uncertainty to me. Which is more appropriate? Which will be better in the long run? Which do I really want to make a part of our life?
And here is where there is a false, and not entirely false, dichotomy. I needed to make a choice because insurance only covers one wheelchair, but I also was under the impression that there was a right and wrong answer. ONE CHAIR TO RULE THEM ALL! (Any LOTR fans?) Surely kids fall into neat categories of Uses Manual Chair, Walks, Uses Powerchair, right? Wrong.
We had to consider mobility in our home and getting in and out of the van and getting out and about in the community and just how much heartache we could handle. It still felt like giving up. It felt like calling out to the world that our son was...disabled. Of course he is. It’s pretty obvious already. But still.
After the hard conversations and the thinking things over and the crying tears of confusion and the weight of making big decisions, here’s what happened…..
Aidan destroyed our home…. and I loved it.
He was a boy on the move, a man on a mission. Aidan learned how to drive the powerchair. It took time, sure it did, but he learned. Now that’s his mode of transportation in the community and at school. He also got so excited about exploring his environment that he was willing to work harder on walking too. He just wanted to go go go. The powerchair felt a little impractical in the home and assisted walking still took so much out of me as his caregiver, that we got him a manual chair for home. Now he drives around on his own terms. He pulls silverware off the counters, opens drawers and empties them, uses his chair as a bulldozer to push shoes and clothing and miscellaneous house debris all over everywhere. Aidan’s superhero name is Search and Destroy Boy.
Aidan is smart. He’s a learner. He’s a driver. He’s curious. He’s more independent. He’s the boss of himself. All because wheels have changed his life.
P.S. This post remained half written for a long time. I think I always battle a twinge of guilt when I write about Aidan’s wheelchair, wishing I had helped him gain his independence sooner. But I’m also incredibly aware that hindsight doesn’t matter because I just wasn’t ready at the same time Aidan was. It’s certainly unfortunate but it doesn’t help to beat myself up. In speaking to other parents about mobility, I find myself balancing enthusiasm -GET YOUR KID MOVING- with compassion – gosh this is one difficult decision among many. That is my journey – towing that line for others.
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