To Walk or Not To Walk

by Jessica Rogers

(written at age 14)

The question of whether I can walk or not comes up often. It’s probably one of the first questions people ask. People see a wheelchair, and walking is the first thing they think about. It’s also the first thing parents think of — will my child walk? Well, the answer is, maybe. Remember that SA/CRS affects people differently. There are very mild and more severe forms of the condition and no two people are exactly alike. It all sort of depends on how much is missing of that spine, how much trunk and hip control the child has, how much movement there is in the legs, knees, and feet. Then, there is another complication to the answer. What exactly is meant by walking? Does it mean running across a playground and jumping on a trampoline or does it mean making 3 hops with a walker and braces up to the chin? Thirdly, there is the issue of functional walking as the size and weight change over time. I’ll address all three of these topics here.

The direct answer as to how much it takes to walk is: it usually takes a good bit of torso and hip control. If the knees don’t work, it’s still possible to walk pretty well, but those hips are key. I do know quite a few other people, kids and adults, with SA/CRS who do walk. The condition affects less of their spine and so they can walk, some with additional braces, crutches, and/or prosthetic legs. Now that I’ve said that, you may wonder at my next statement. In spite of the fact that I have only half of my spine, paralysis from the waist down, no hip movement, and not much left of my legs, I actually used to “walk”. These days, with a whole lot of time, effort, ingenuity, technology, and determination-almost anyone can be stood up and coaxed forward. I was no exception. After I had leg disarticulation, I used prosthetic legs and forearm crutches. I walked a little bit, maybe a couple of hours a week, from the time I was about 7 to the time I was about 9. So, usually the answer is, if you want to put a whole lot of time and energy and technology into it, then your child can “walk” even without hip control. However, you may discover in the process that “walking” is neither very functional nor very valued in the long term. For children with more mild conditions, walking may be very practical and very functional. For each child, and each family, the amount of time, energy, and effort spent on the whole walking question is very individual. I would just caution parents not to get so caught up in walking that they loose sight of what works best for the child’s actual mobility.

So, what is walking, exactly? Braced up to my chest, prosthetic legs, and with crutches, I could get around pretty well, but I also fell sometimes. If I fell, I really couldn’t get back up by myself, because the prosthetics were attached to a torso brace and the hips were locked straight. If they weren’t locked, I couldn’t hold myself up, but if I fell, I was basically a wooden log until someone came and set me upright again. Also, I could not bend over-so if I dropped something, I had to depend on someone else to get it for me. I could not get up or down stairs, so they didn’t give me any more mobility than a wheelchair, and walking in them was very slow. All of the control and power happened in my shoulders. I couldn’t walk very far for very long because it was so tiring to pick up the feet and swing them forward. They weighed as much as I did. You can imagine that was not very practical, but I would say I was more proficient at walking than anyone would have predicted. Here is a video of me walking.

Cody McCasland is a boy with SA/CRS but with more torso and hip function than me. You can see videos of him waking on his website. As you can see, the torso and hips make a lot of difference. Finally, there’s Billy, who has not had knee disarticulations because his SA/CRS did not involve bent legs and webbing nor was his paralysis as extensive. You can see videos of him on his website.

I’m not unhappy that I tried walking, even though I don’t do it now. But, walking with prosthetics, bracing, and crutches for me was extremely cumbersome. So, after about 2 years, I put the legs away and never used them again. I’m not at all sad about that. I don’t miss them. I don’t want to use them. I am far happier ‘walking” on my hands or using a wheelchair. It’s much faster and freer and practical for me. The most important thing of all was that my mom really listened to my feedback and followed my lead. She encouraged me and gave me options, but she never forced me and I appreciate that. There are kids and adults with SA/CRS who do walk, but there are a whole lot more who have a set of old prosthetics in a closet somewhere, like me. For those who do walk, they usually have, as mentioned before, a good deal of torso and hip control. Sometimes they require surgery to maintain function, or to address differences in leg length or to improve their gait. Again, each family has to weigh for themselves the benefits of the surgery versus the risks and the practical outcomes.

It may be initially possible for the child to walk, but as the child grows over time, it becomes less and less possible for the child to manage with increased body weight. Children who do walk may do so quite well, even without crutches. They may even run and jump and bounce on trampolines. I have met a 4 year old child with SA/CRS who did just that. However, because the amount of weight those legs must carry changes over time, this same child will most likely be a wheelchair user for her primary means of mobility as an adult. This transition may happen rather quickly, at a growth spurt-and suddenly the child is much more tired, has much more difficulty getting from one place to another, and/or is falling often. Transition to a wheelchair should not be thought of as “failure”. Imagine as a child having to carry that burden of thinking he or she disappointed his parents because of a preference for a wheelchair over walking. This is just a natural progression. It’s not laziness. It’s not failure. If your child does learn to walk, I would recommend not making a lot of statements about how walking is better than a wheelchair. For me, a wheelchair is a lot better than walking, so really what is “best” is what works-not just what fits other people’s ideas about the right way to get around.

In conclusion, there are possibilities for walking among many children and adults with SA/CRS. It’s a bit difficult to say exactly who will walk and who will not, and it’s also difficult to say how functional that walking will be long term, but much depends on the ability to use the torso and hips. “Walking” can mean different things to different people. If walking is not functional, it will not be valued. The burden will outweigh the benefits. Sometimes surgical procedures will make walking more possible, or improve gait, or prolong the option of walking. Early walkers may eventually find a wheelchair meets mobility needs better than walking. This is always a surprise for people who believe that wheelchairs are pitifully restrictive. For me, a wheelchair is freedom. I can keep up with everyone else and I can move quickly and easily.

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