Wheelchair Boy

Every day the bus comes and collects the boy in the yellow wheelchair. He usually smiles as the lift brings him up.

At school the kids in preschool watch to see him come off the bus.

In many ways, Charlie has already become synonymous with his chair and lately I’ve been wondering about that. I bought the chair so he would have a way to travel around school–I didn’t think about how it would give him an identity.

I’m also not completely sure I like that. His teachers tell me that often people come into class and are amazed to see him sitting, crawling, and playing with toys. Really, though, that’s not a huge deal–Charlie eventually reveals himself–he’s far more capable than he lets on at first.

But what about how Charlie sees himself? Does he see himself as the boy in the wheelchair? Does he even imagine that he might walk some day. Or is that not something that four year olds think about?

I spoke to the PT about it and she said that as long as we’re not teaching him that the chair is his only mode of mobility, that it shouldn’t impede his ability to learn to walk.

I still wonder, though, about how he sees himself. Does he think of himself as the boy in the wheelchair? Does he even want to walk when he’s got such status by not walking?

I’m not sure. I’ll be thinking about this one for a while I’m sure.

boy in pediatric gait trainer

Charlie's therapist wanted me to be sure to mention that his Theratogs aren't on quite right.

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  1. We had a slightly different problem; the school (and this is why we pulled her out in favor of homeschooling her) would not let Namine do anything BUT be in her wheelchair. No walker time, no scooting, and even playing she had to stay in the wheelchair. The teachers identified her by the wheelchair, and we didn’t like that.

    I wrote a post a little while ago on the nature of disability, and I think it bears mentioning here: http://www.eichefam.net/?p=4101

    • I’ve heard that can be quite a problem with some schools. Charlie scoots all over his classroom and they’re encouraging him to move to various locations when given instructions, which I think is fantastic.

      I’m off to read your post now.

  2. I hope Charlie continues to make enough progress walking so that he doesn’t identify himself with the chair. Clayton totally does though. He keeps a sharp eye on his chair while not in it and is VERY particular about the details o it (how it is positioned, what’s hanging on it, etc.). He obsesses over it in fact.

    • If only Charlie could tell me how he feels! The positioning on his chair is horrible–I can’t believe he puts up with it as much as he does. The next chair will be better, for sure.

  3. the post-script about the theratogs made me laugh. Those things are so obnoxious to put on properly, it takes like half the therapy session just to get them going.

    As far as the wheelchair goes, from the perspective of the health care provider, you want to give him the least restrictive tools to be successful. The wheelchair allows him to be successful in mobility right now and if sometime down the road, a walker is less restrictive but still allows him to be a community ambulator, then you can make the switch then. My guess is that anyone who knows Charlie identifies him way more with his charming personality than his ride. :)

    • I know! She just sort of half does them and it still takes forever to get those dang things on. They do help his posture, though.

      Charlie has quite a personality-not sure it’s all charming, but he’s certainly got one.

  4. I my opinion, It’s normal to identify with one’s wheelchair because you spend so much time using it- to talk and think about it a lot, and to have other people see it as a part of who I am. It IS a part of me, although I can use a walker or canes (and do so every now and then), I’m in my chair almost everywhere I go. It offers me the hugely positive benefit of being able to move around completely unconstrained. It can be super-cumbersome (when flying for instance) but typically I feel very positive about my chair because it makes my independence possible.

    Obviously, people have to recognize that there are many other components of my identity, Sometimes people need education to see “the person inside”. But sometimes I think that when parents have this concern, it’s because part of them still sees wheelchair use as negative compared to walking. Independent mobility is awesome, whatever form it takes :)

    I hope I don’t sound critical, it’s just that some of the “I hope he progresses with walking so that…” comments sound kind of sour to my ear.

    • I’ve never been a parent who believed that walking was the end-all be-all for my child. My preference has always been a healthy body, and walking can cause so much wear and tear, so I’m not convinced that’s the best option for every child.

      This wonder is more about whether or not *I* chose an identity for him before he could chose one for himself. I’ve been pretty pro-chair for all the benefits it provides, but that is my attitude and opinion. Just like I strive not to label my twins “the smart one” or “the athlete,” I just hope that I didn’t assign Charlie an identity rather than letting him choose one for himself.

      • And I don’t think you sounded critical. I really appreciate the words and opinions of adults with disabilities because they provide me with a view of my son that I’m incapable of having.

        • Katy, I know you’ve been a proponent of the wheelchair for Charlie, so when I say “parents” I don’t necessarily mean you. I’m referring more to that subset of parents who weep at the sight of their child in a wheelchair because they believe it means some grave thing for their future.

          But as far as you assigning him an identity via the wheelchair, I don’t think you could if you tried :D. Wheelchair use is different than being typecast as “athlete” or “nerd” because it’s an object you use, and not an activity, or set of behaviors. I’m confident that Charlie will be whatever unique person he wants to be, regardless of the equipment he uses (although I think the chair will be a positive part of his identity if anything).

          The tricky part is that the outside world doesn’t always recognize that uniqueness. I am STILL sometimes referred to as the “girl in the wheelchair” by people who don’t know me well. In reality I am more than that: psychology student, politics junkie, hockey fan, beer enthusiast etc.

          I think Charlie will know that he’s separate from / more than his chair without being taught. Right now he just needs your help to remind everybody else. :)

  5. I notice that Charlie’s feet appear to be flat on the floor. Is his cp spastic? Does he not point his toes when he stands? I ask because, in many ways, he seems similar to my daughter Phia, as I’ve mentioned before. Of course, there are differences too. Phia’s toe-pointing is terrible, and her orthotics help a tremendous amount in her sturdiness while standing and stepping in her walker.

    • He is spastic, but instead of standing on his toes, he keeps his knees bent. We did eventually put his AFO’s on him, but the PT always like to spend a little time naturally strengthening his ankles.

  6. We had a graduate student on campus that we called scooter girl because she drove an awesomely decorated pink scooter. She also had fabulous brightly colored extensions in her short dark black Asian hair and a fair amount of body art. I always thought it was great how her scooter (necessary for her daily locomotion) was made to be an extension of her style.

    I think when anyone has a neon-type characteristic (pink hair, an abnormally large facial feature, really tall/short, or a wheelchair), it is the first think folks might notice, but then we see beyond that.

    I do think it’s great that his school allows him the freedom to scoot around too.

  7. He’s so cute at therapy! :)

    I don’t think it will become his identity because I hope so much for him to walk on his own someday…. xo

  8. my theratogs are never on right!

  9. I have discussed this recently with parents, teachers and other important people to students I work with (usually in an IEP but not always). I think wheelchairs are awesome and it is a form of mobility and independence. But it is always important to remind people in Charlies life that is a form of mobility and not where he should sit all day! Which happens more and more as kids get older at school and at home (for some). If I have a student who can sit in class in a classroom chair and use a walker or gait trainer but need help transferring between places then often (in upper elementary and beyond) they stay in there chair. I believe in many circumstances they should park their chair and walk in to their classroom and sit in a classroom chair (or possibly other adapted chair) and go about some or part of their day this way. But I have heard every excuse in the book (even when the student wants to walk) from the teachers and support staff. It also does come down to identify to a certain extent. If the student, family, teachers, etc. see the student and chair as one they are less likely to remember to take them out of it. Its very important to always remember their are lots of options.

    • Decisions as to when to walk in school are ultimately individual and made by the adults that surround them. Often those adults are difficult to convince to make what they perceive is more effort. Sad.

  10. I always wonder that myself. Carsyn has it so good with us carrying him around and sitting in his stroller. He has no need to want to move. I am trying to get better of putting him down so he can learn but most of the time he screams because he gets so frustrated.

  11. I agree with your PT that use of the wheelchair will not impede his ability (or motivation) to walk. I happen to think that is also the case for use of a power chair.

    You know I love Theratogs, Katy. Yet I cringe a little when they are used only during a treatment session and not as part of a (winter) wardrobe – the intention of the creator of Theratogs. However, daily wear of Theratogs is a tall order for any family, and so, a conundrum of sorts. For me.

    Insofar as a child’s development of self-image goes, highly unpredictable, likely uncontrollable but you and Charlie’s Dad have the most say and your opinions on that count most, I think.

    As time as gone on, I am more convinced that SMOs are the way to go over AFOs. Agreeing with your PT on a little time au naturale on the floor.