Thursday, March 3, 2011

The Wheelchair Decision

And by decision, I don't mean WHICH wheelchair would be best for Ben. I mean making the decision to GET a wheelchair for Ben.

I've been getting quite a lot of questions about the decision to get Ben a wheelchair. The most popular question has been something along the lines of "Ben is only 3.5 years old. And he's so mobile and uses his walker so why does he NEED a wheelchair?". The 2nd most popular question is something more like "HOW can you be so OK with your son getting a wheelchair?".

I'm going to try and answer these questions the best I can. You may be in for a long read!

I've posted a link to this post by Katy about the wheelchair issue before. But here it is again. I first read it right after she posted September 2009. Ben was just 2 years old and we were just one year past diagnosis. I don't think I'd even thought about the wheelchair issue before this post. And even though Katy is fantastic and I love her posts, it wasn't HER words that got me thinking. It was the 2nd commenter. Becca. An adult wheelchair user. She really got me thinking.

The more I thought about it, the more I agreed with her. Basically, her opinion is that is someone's PEERS would be walking, then if the kid was unable to walk on his/her own, then said kid should be in a wheelchair. NOT a stroller. And for some reason, this made total sense to me. I started paying attention. You see, it's pretty easy for me to know what Ben's peers are doing...he has a twin. A typically-developing twin. Every time after this post that I put Ben in a stroller with Daniel walking alongside me, I cringed. I truly did.

A few months after having my eyes opened, I asked Ben's physiatrist about getting him a wheelchair. He was just 2 years (adjusted) at that point. She thought it was too soon. She really wanted him to get better with his walker before he started using a wheelchair. Since he was so young, I left it at that.

About a month after that appointment, he started using his walker ALOT. We started making trips to the mall when it wasn't busy so he could practice. By the summer, he was really moving with it. I was glad we had waited. I'm not sure what the research (if there is any) shows about whether having a wheelchair demotivates a child with CP from learning to walk, but I was glad that we had pushed the walker as much as we had and he had gotten so good with it.

Fast forward til about a month ago. I didn't even know that I was thinking about a wheelchair until I asked one of his PT's about it. The words just kind of slipped out. I think that over the last 18 months or so, I had been thinking about it sub-consciously alot. Ben LOVES basketball. And he's actually pretty coordinated and has a good shot. I remember last year when the paralympics were going on...I thought alot about sports that Ben could play....adaptive skiing, horseback riding, sledge hockey...and of course, wheelchair basketball.

I don't know if you guys realize it, but it's pretty damn impossible to play basketball with a walker.

So I put the question out there last month and an OT came to chat with us about wheelchairs for Ben and how the process worked. And Ben tried out a wheelchair for the first time. I posted about that experience here.

We talked about whether Ben NEEDS a wheelchair. I guess in a way he doesn't NEED one. I could still opt to put him in a stroller if I wanted to. But I don't. So that's where the wheelchair comes in. To many of you, I'm sure Ben seems very mobile. And he is. In a way. Yes, he's great with his walker. But he tires easily. So whenever we go somewhere, if we bring his walker, we bring a stroller too. For when he gets tired.

And yes, they tell us that Ben will walk someday. Probably by the time he's 6 or so. But even then, is he going to be able to handle long distances? Unlikely. And if his class makes a trip to the zoo, I don't want him in a stroller...being pushed by a teacher. I want him in his wheelchair. Independent. And in control.

It takes a while to get a wheelchair. We're waiting to see the experts at the Seating Clinic in order to use their expertise to pick the best chair for Ben. Since Ben is so good with his upper body and can sit well, we're definitely going with a manual chair. But that's pretty much all I know at this point. I'm not sure how long the wait is to get into this clinic...pretty long I think. I'd love to have one now (now that he's tried a couple out and I see how much he loves them), but the initial goal was to have one by next year this time so that he could be proficient with it by the time he starts kindergarten in the fall of 2012.

And just because he's getting a wheelchair doesn't mean that we're going to stop working on walking. No way.

I don't think "wheelchair vs. walking" is the real decision here. For us the decision, is "wheelchair vs. stroller" and for me, that choice is obvious. Be pushed around by Mommy in the stroller OR be independent and in control in a wheelchair?

The wheelchair wins every time.


  1. i thought this was a great post and well put. we are going to get a wheelchair for drake too for the same reasons. for school so he can go where he wants to and not be pushed by a teacher in stroller. he may need a power chair as he has more involvement than ben with his hands, but we will see. right now he rides in the stroller when we go for walks but doesn't seem to mind and actually lucy still wants to ride often, too. but by age 4 i think that will be different.

  2. Yeah, CaryAnne! Look our PT pushed for a chair when Faith was breaking three but we refused it. Of course by 5 she had outgrown all strollers, so we broke. But when we finally got it 10 months later it was Heaven sent! She logged thousands of hrs in it even when her old PT said she wouldn't be able to push one on her own (crazy untrue!). But after almost 2 yrs with her beloved purple chair she IS walking! I think that if the ability comes the desire WILL be there regardless! Being in her chair opened up the world for her but now she only needs it when we are going really long distances. So I seriously doubt it will make him NOT want to walk. Kids naturally do!

  3. I just think about how little effort it takes for his twin or said peers to walk and talk or walk and hold something. Having a wheelchair can reduce the said concentration and allow him to focus on other important kid things.
    With Claudia in first grade we do have to make decisions at times to conserve her energy. Every kid only has so many jelly beans in their jar and if they are completely exhausted from walking it makes learning that much more difficult.
    By the way your boys are adorable.

  4. Awesome post Cary, and great comments in return. Once again, hopeful over here, wheelchair one day or not. :)

  5. I love this post too I have to share this with a friend.

  6. The wheelchair does win every time once you can have independence (3 or 4). It beats being in a stroller saying "Mom can we go over there? Mom. Mom. Mom......"

  7. Huh. I never thought about it like that. I still hope I won't need this information... but I know I probably will, so thanks!