What if the Hokey Pokey is NOT what’s its all about…
Published by Amy under General on September 18, 2008Walking….
Really is it that important??? Now I realize I am biased. I am quite accustomed to alternate transportation. But really, do you have any idea how far people go to get their kids to walk? I met a 3 yr old with CP (quad). He is cognitively fine, his fine motor and gross motor are a struggle (as expected). His current development goals.. It was alllllllllll about walking. I watched his PT work with him. He struggled, was in some pain and even cried at several points. His Pt told me he had made very little progress in the last year. Its obvious medically this is a kid who will almost for sure will never walkwithout an assistive device and even then he will probaly quickly choose a wheelchair…why you ask???? Because he will want to keep up in middle school and high school, not get knocked down and not be utterly exhausted by third period. )
WHAT HAPPENED TO DRESSING HIMSELF???? USING A PENCIL???? FEEDING HIMSELF??? This kid has major fine motor issues and they are taking the backseat to walking which is most likley fultile for him anyways. There is occupational thearpy in his weekly scedule but it takes a back seat to PT and all things to do with walking.
And I see this all the time, everyone is so focused on meeting the magical gross motor milestone of walking that the parents, phyisican, teacher, thearpist, etc get tunnel vision and instead of thinking what does my child need in 20 years to be functional and independent? We get I want my child to WALK!!!! Beyond the inattention to fine motor or whatnot the other issue is what happens when the child doesn’t walk??? Well then he or she has failed and don’t think they won’t feel that way to at least some degree. The parents certainly feel that way. If you spend 6-8 years of life trying to learn how to walk and then don’t…what does that do for a you as disabled kid who already is going to have to confront some huge pyshcosocial and idenity issues (with or without the magical mystical superpower of walking).
WALKING DOES NOT EQUAL WHOLENESS. What is this mystical quality that walking has??? Why in our society/culture/etc are we obessed with walking? The disability activist in me says this is not my problem as the disabled person, its more of a problem of the wider world preception of me, of us. A wheelchair (or a cane or insert your device of choice here) does not mean we failed, it does not mean we are somehow a lesser being, it does not mean we gave up. It means we get to get out of bed today and see the world from an upright position, it means we are particpating in our communities, in many cases it means we can go to work or school safely, it means we can carry our laundry to the drier, be social, cook our meals, it means we can play sports, go for a walk (roll), it means we are out living life.
The fact that society and dare I say medical science does not see us that way is not the disabled person’s fault. Its certainly not the 3 yr old with CP who dreads PT every day and begs to go home the whole seesion who cries after trying to walk in the bars for 20 solid minutes. But its the kid who loses the most with this preception. What if instead of failing we could give him some freedom and acceptence to suceede?
I am not saying we should not encourage kids with mobility impairments to walk. By all means PT is essential for pain control and to maximize strength. And every child should have the chance to be as mobile and yes to try to do it in the convetional manner. And PT is hard and painful and we shouldn’t give it up because of these things. But it should be realistic, fruitful and not defeating. PT and walking is not the end all of early intervention for kids with physical disabilities. And as a future pediatrican it won’t make the top of my list of concerns for a disabled child. I am much more interested in their physical health (like eating, sleeping, breathing health), ADLs (activities of daily living), their mental health, their social health and that their childhood is not one of defeat and failure but one of joy and empowerment.
Hi Amy- what a great post! I won’t leave my name here since I will talk about my daughter and I don’t like to put identifying details out into the general webspace- but you will know who I am based on my email.
As a mom of a child with mobility issues, I have really struggled with this issue, along with my husband
What are the appropriate goals? Because she has such a rare condition and it’s different for everybody, we don’t really know what is appropriate to shoot for/ ask from her. What can we communicate to our child about these goals? Again we don’t really know the future of her unique situation, we would never want to ‘hold out a carrot’ for her that might be an impossibility - so how do we explain exercises, etc. in a way that is honest and palatable to a young child- and as you said, does not have them feel like a failure or deficient in some way? What would she want us to be doing, if she were an adult 20 years from now looking back on this time? What struggles would she think were worth it for what gains?
It’s really one of the most essential aspects of parenting any child- the choices we make today affect their tomorrow. It’s an awesome responsibility, and we don’t know the future. We just have to jump off the ‘cliff’- make the best decisions we can with the info we have.
With my daughter, S, this has all been a dilemma for us. We didn’t have an accurate diagnosis until she was 5, and even then, the way Kniest was affecting her at the time seemed fairly different from others. When she rapidly lost a lot of her mobility, we got a wheelchair and walker and we did work hard with the physical therapist for her to regain walking- although with a walker, because at that point, our understanding was that walking ’should’ be a skill she could do. We also worked with her at home- she did most of her PT at home with us. Over the last 2 years, she has steadily declined in respects to walking, where now she sits in her walker seat and propels herself with her feet. She has gone up and down in terms of how much she is capable of because of joint pain/ contractures. It seems like any time we made some gains in terms of amounts of walking, joint pain would soon follow and we would lay off. Luckily, our PT is not pushy and when my daughter was expressing distress about ‘having to do too much’, the PT and I spoke privately and adjusted our goals from walking with the walker to just being able to stand and walk enough to make life a little easier- like be able to pull your pants up & down, get up and reach something you couldn’t from a sitting position, etc. I’ve been so much happier about the situation, and I think S has, too. We were always careful not to tell her that if she did ‘x’ then she would be able to walk, or that we expected her to ‘get better’ and walk or anything like that. We would tell her that we needed to keep her legs strong and her joints flexible and that’s why we did PT- but even so, she still felt the burden of it all.
I know that in the future surgery will be recommended for her in order to address her contractures and hopefully give her more ability to stand & walk. And I ask myself the same thing you do here- is it really worth it? Will that really make her quality of life any better- especially if you have to continue the surgeries every couple of years because the issues keep coming back? Why not just let her body develop naturally and adjust with mobility devices along the way? I only wish I could ask her as an adult what she would want… Of course as she gets older we will involve her more and more in these decisions. But I wish I had that crystal ball!!!
As a mom, my biggest wish for her is psycho-emotional health and for her to have a feeling of being capable and able to create a life for herself that is fulfilling. I see this as possible regardless of whatever her eventual physical situation is when she is an adult. At the same time, I definitely feel the burden of not knowing the ultimate ‘right’ thing to do now.
Thanks for your thoughtful post Amy!
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