Wednesday, April 15, 2015

To walk or not to walk...that is the question

Every 6 months Caleb's physical therapist does a re-evaluation. Caleb's progress over the last few months is discussed and goals are reviewed. I've always hated therapy evaluations but I understand they are necessary for insurance. Therapists have to be able to show that there is progress and evaluations make that possible. Currently Caleb has a therapy goal of being able to walk in his KAFO's for 5 minutes without stopping.

Caleb can do it...but he hates it. He doesn't like walking with his KAFO's. He doesn't like walking. It's hard, awkward, and cumbersome. Honestly, it's not's simply walking for the sake of walking. He hates it. 

As we are getting ready for a therapy re-evaluation next week and knowing that we will have to set goals, I asked Caleb if walking is important to him. 

His answer without hesitation: No. 

Walking is not important to him. He's 9 years old and I think he is old enough to be a part of his goal planning. He should get a say. And he says "no" to walking. I get it. I really do. Walking is really hard work for him. And he needs a lot of support to do it. Even when he was walking really well (before the tethered cord surgery 3 years, has it been 3 years?!) he would choose his wheels over his walker when given the choice. After that surgery he lost everything. He had to start all over. He's had to work so hard to gain back even some of what he lost. I was hopeful that he would gain back the ability to walk but then weeks turned to months...and now years. I'm not so hopeful now. And honestly, I'm okay with that. I've never had a problem with his need for a wheelchair. I love his wheelchair. It is independence, speed, confidence and mobility. It is a blessing. 

I'm okay if he never walks again. But I want him to be okay with that. I think he is. Walking isn't important to him. I respect that. I'm actually relieved to hear him say it. I feel like a weight has been lifted. 

I think he felt the same way. 

I'm glad I asked.


Carrie said...

This is a great post. I see Toby getting stronger and want him to try walking again, but I need to be okay with him being in a chair. You just want to give them every opportunity. Great post - thank you for it.

Sharon Campbell said...

Great post!

Anonymous said...

Love this! The ability to walk does not define a person. A person's spirit and personality defines them. I happen to be a physical therapist, but my special needs and medically fragile (also non ambulatory) daughter has taught me what's important. How we get from point a to point b doesn't really matter, as long as she's happy and with us for the journey. My daughter will never walk. I gave away her gait trainer. It was too much work for little body, too much stress for everyone and it wasn't functional. I also asked her recently if she was interested in trying to walk again. Without hesitation, her answer was no. I'm glad it was no. She's much happier in a wheelchair (manual or power) because she can keep up with her friends, have some independence, and not be so tired from walking that she can't enjoy the next activity. Letting go of the walking goal (if it really isn't functional or realistic) doesn't mean we're giving up. It just means we've figured out walking doesn't define out children. Our kids have known this all along.

Anonymous said...

Happy to read that Caleb has been included in this choice. What about standing while reading, watching,or doing some fun task? I spend hours sitting at a computer daily. I am learning to stand while I work. It really is helpful and not as easy as I first thought it would be.

Audrey said...

Thank you so much for this post. I have been reading your blog for about a year and I was just so excited when I found it. My husband thought I was a bit nutty until I showed him a page about Caleb and we both laughed at the uncanny resemblance between him and our son Ben. He turned 10 in February and is in the 4th grade. I believe his level is maybe a bit higher (L1-L2). Ben also hates to walk. He has HKAFO's and they are just so cumbersome. He mainly wears them for PT and for some occasional standing. The PT at his school is very pushy about his need to walk and it's a constant battle. Thank you for making me see that I need to let him lead the way in this respect. By the time he was 7 or so, he made the decision to be a "roller" not a "walker". We need to stop being bullied by the PT (who has never lived a day in our shoes. I love your blog and look forward to another in your series of videos about how Caleb handles various everyday tasks. They've been so helpful!

David said...

Fantastic post. I found it from the link on The Rebound's Facebook page. As the father of a 13-year-old with mobility issues, I find that one of the hardest things to get people to understand is that typical abilities are not the only definition of success or the thing everyone should want to strive for. Completely whole, completely happy, completely vibrant people can be different. It's interesting that even professionals like PTs and doctors who work with this population all the time don't quite get it sometimes.

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