Page 17 - Mobility Management, January/February 2022
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“If you’ve got control over your arms, the joystick makes perfect sense. It makes sense that driving with your head is slightly more intuitive, because I look to the right, I go to the right. I think there is something to be said for that in non-verbal kids and the kids who are overall lower functioning or significantly ataxic.
“Honestly, if you can get the joystick, I’d much rather you get the joystick. It’s much fewer parts and pieces on the chair, so that’s less things to break and less things to worry about servicing. It’s just easier.”
And while the focus of pediatric mobility tends to be assessing very young children, Rosen doesn’t shut the door on trying inde- pendent mobility for older kids who’ve used dependent wheel- chairs in the past. She remembered, for example, a 16-year-old boy who was non-verbal and had no communications device.
But during a clinic meeting, Rosen noticed he nodded in response as she spoke. So she asked him: Did he want to be able to move himself? The teen nodded emphatically.
“I feel a lot of times these kids get screened when they’re little, and they’ve got no ability per whatever test it is, and nobody looks back at them again,” she said. “They’re not complaining because they’re non verbal. They’re well behaved, and they’re sitting in the corner in their dependent manual chair. That hurts
me every time it happens. Think about all those years.”
In contrast, Rosen said she sets high expectations for wheeled
mobility from the very first visit with a new family. “From the first time I see you, I talk about how the chair is going to be enabling, and how the chair is not going to be a roadblock to you doing things,” she noted. “For ones who are interested in sports, I give them information on sports clinics. I’m saying that this chair is going to make you and keep you active, and keep you doing all the things that everybody else in the family is doing. I make the chair as mentally and physically enabling as it can be. I say, ‘These are my expectations for your child.’ I don’t know, especially with the littler ones and even with the older ones, if anybody’s ever said those words before.”
Even when her client is an infant, Rosen is setting up for a mobile future. “I empower my families from the beginning with manual chairs and tell them where I see them at 30 and what I want them to be able to do. I think we need to be setting those expectations as well with power chair users and even dependent manual chair users who use aug-comm devices: This is what
she’s capable of doing, so let’s do it. The more things I can give you independence in, the less likely you are to live the dependent role your whole life.” m
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