Learning to view mobility aids and other medical equipment as vital tools
A wheelchair can be a tough pill to swallow, but there's another way to look at it
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Having a child with special needs can sometimes feel like you are constantly dodging punches in a boxing ring. Yet you can’t throw any punches yourself; you’re just playing defense and trying to protect your child from the next challenge.
Rett syndrome slowly robs a child of abilities many of us take for granted, such as walking, talking, and using the hands. Low muscle tone can contribute to a rounded back while sitting. When a child can’t walk and doesn’t have the core strength to sit independently, serious orthopedic issues like scoliosis can develop.
My late daughter, Cammy, was just 3 years old when she received her wheelchair. It was a very tough pill to swallow. As a parent, seeing your 3-year-old in a wheelchair can feel like another punch you never saw coming. But Cammy needed the wheelchair for proper seating and positioning.
Her physical therapist and wheelchair seating and positioning specialist took the time to adjust the chair to Cammy’s needs and carefully mold her seat to her little body. That attention to detail was critical. It allowed her to feel safe and comfortable instead of constantly flopping to the side or forward in a chair or stroller.
And then we saw something amazing.
Almost immediately, we noticed a difference in her positioning. Cammy smiled, a little sign of relief. She didn’t have to work nearly as hard just to keep herself upright. Her body finally had the support it needed. And that meant she could focus her energy somewhere else.
Her communication began to explode. Because Cammy wasn’t spending all of her energy trying to control her core and keep herself from falling over, she could use that energy to communicate, connect, learn, and show us what was going on inside her world.
That wheelchair didn’t take something away from Cammy. It gave something back.
It gave her comfort, stability, and most importantly, the opportunity to use her energy for the things that mattered most to her: communicating and connecting with the people around her.
The wheelchair was also a cue to everyone around her that Cammy had special needs.
Before she got it, we’d often feel the stares because we were still pushing around an older child in a stroller. People didn’t know our story, and they didn’t understand that Cammy wasn’t in a stroller because she couldn’t walk a little farther — she was in it because she couldn’t walk at all.
The wheelchair became a nonverbal message saying Cammy can’t walk, and she needs support. And something changed. We noticed strangers holding doors open more often. People made space for her to pull up. There seemed to be a little more understanding, a little more patience, and a little more willingness to help.
Sometimes, the equipment we fear most as parents becomes the very thing that helps our children thrive.
I learned something else along the way: Every piece of equipment Cammy needed — and there was a lot — was actually a punch thrown back at Rett. The wheelchair, the braces, the eye-gaze device, the oxygen machine — all of it. Each one was another way of saying, “Rett, you may have taken this ability from our daughter, but we are not going to stop fighting for her.”
We were no longer just playing defense — we were fighting back.
Every piece of equipment was a tool that helped Cammy gain comfort, independence, communication, mobility, or simply the ability to participate in the world around her. What initially felt like another loss became another weapon in our fight.
We couldn’t take Rett away from Cammy, but we could give Cammy every possible tool to fight back against it.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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