I Can Push Myself!

When teaching a new user how to optimally self propel a wheelchair, you might talk about propulsion efficiency, getting the most distance from each stroke, and how the right mechanics can reduce the risk of repetitive strain injuries down the road.

Baby with hat

Unless that new user is, say, a 2-year-old more interested in Peppa Pig than proper hand placement on a handrim.

Lauren Rosen, PT, MPT, MSMS, ATP/SMS, is the Program Coordinator for the Motion Analysis Center at St. Joseph’s Children’s Hospital in Tampa, Fla., where she runs a three-dimensional Motion Analysis Lab and a pediatric and adult wheelchair seating and positioning clinic.

Rosen assesses some very young children for seating and mobility, and due to her 20-year tenure at St. Joseph’s, she’s also seen the impact of early self propulsion as her pediatric users have grown up.

When Kids with Disabilities Grow Up

That long-term perspective isn’t something that every pediatric specialist experiences, Rosen said, and she added that to this point, research on very young self-propellers has largely been lacking. “The biggest problem honestly is all the research we have on propulsion is adult,” Rosen said. “So these were people who for the most part make it through most of their growing, and then had an injury and became wheelchair propellers. What we don’t have are good studies looking at shoulder remodeling in kids who propel.”

A 2005 Veterans Affairs study (see sidebar) suggested that a child’s body might better adjust to the rigors of self propulsion than an adult’s. As Rosen noted, the study “hypothesized that maybe there is some remodeling going on in the shoulders of these users who are children when they start propelling. And so maybe they’re not as predisposed to shoulder problems.” But beyond the relative lack of research, Rosen said the industry only recently began considering pediatric self propulsion as part of a life-long continuum.

“I feel like 10 or 15 years ago, we started really realizing that kids with disabilities become adults with disabilities,” Rosen said. “We started to realize that these kids lived full lives, and so we’ve just started looking at lifespans of these kids and what’s happening. I’ve been in the same facility for 20 years, so I’ve seen kids who are now adults. I’m seeing what they look like as adults, and I’m learning lessons from what I did when they were 4. But if you don’t see your 4-year-olds when they’re 30, you have no idea what’s happening to these kids.”

Traditional Pediatric Concerns

Historically, Rosen added, pediatric specialists have largely focused on more immediate concerns of wheelchair seating, rather than on the longer-term impacts of self propulsion. “I believe that most people who seat pediatrics are more worried about scoliosis and hip dislocations than they are about shoulder function into adulthood,” she said. “They’re thinking about the scoliosis you’re going to see up to that point, or the hip dislocation up to that point. Because most people who do pediatrics don’t see adults.”

That focus on trying to prevent scoliosis or hip dislocation can cause seating teams to add components such as laterals to wheelchairs being propelled by very small users.

“When I teach on this,” Rosen said, “I always quote the research: Lateral supports aren’t going to prevent scoliosis. There is a research article that looked at TLSOs [thoracic lumbar sacral orthoses] and found that kids with neuro-muscular scoliosis can wear TLSOs 24 hours a day, only taking then off for showering or bathing, and they don’t slow the curve. So if a TLSO is not going to stop scoliosis, [laterals] are not going to stop it. If you need laterals because you can’t sit up straight to push, you get laterals. But if you don’t need them to function….”

What’s potentially wrong with adding components such as laterals to a wheelchair, even if the child doesn’t need them? Extra components can make a wheelchair heavier and harder to propel. Maybe the seating team can make an argument for extra equipment to an older wheelchair user. But to a toddler?

“They’re kids,” Rosen said. “If it’s easy to use, they’ll use it. If it’s not, they won’t use it. When kids are little, it’s hard to convince them to use things they don’t like.”

Plus, a child who doesn’t use his wheelchair can grow up to become an adult who doesn’t use his wheelchair and therefore isn’t as active as he could be. “So [the team] is doing all this limiting of function to prevent something they can’t prevent anyway, and later we get the 300-lb. adult who has no motivation to move because they’ve never had functional mobility. Their chair has not been empowering to them because their chair was trying to prevent something we can’t prevent.”

If You Build It Right, They Will Use It

Young children are notoriously difficult to reason with, whether you’re trying to get them to try a bite of broccoli or try pushing a new wheelchair. So is getting them on board a matter of creating a wheelchair they want to use?

“I think a large part of it is ‘If you build it, they will come,’” Rosen said. “If you build that chair right, the chair from the very first moment they are in it is empowering and gives them mobility in a way that they’ve never had it. So they do see it as an enabling device, something they want to use. Realistically, setting that chair up right, having a color the kid likes, all of that is huge, because they like everything from day one.”

So what does “building it right” mean in concrete terms? First, it means fitting the chair to each individual child, rather than just building in, for instance, a generic amount of growth. “Somewhere in PT school,” Rosen said, “in the 15 minutes of training we got, we were told to make a chair 2" wider than the person. You have to plan some growth, but if you look at these kids, you can see how they’re going to grow. You see their parents, you see their family. A lot of these kids are skinny. They’re going to grow a lot in height, but they’re not going to grow in width.”

What’s the harm of making a wheelchair that’s wider than necessary?

“They can’t reach to push correctly,” Rosen said. “They also don’t feel stable in the chair. The wider the chair is relative to you, the more your hips can shift. We build the chair too wide, so then we put big, heavy hip guides on it to hold your hips.”

Which once again creates a chair that isn’t fun or easy to push.

Rosen acknowledged that reaching a handrim is always tough for the littlest wheelchair users: “If I’m putting a 12-month-old in a chair, I can’t get him to his handrims no matter what I do. He’s going to push on the tire, and that’s fine. But at least he can get to that tire, and he’s in a good position getting to that tire. He’s not significantly abducted.

“I feel like people automatically say, ‘You’re 13" wide right now. We need to go to at least 15" if not 16" because you’re going to grow.’ They grow taller, not necessarily wider. There are growth curves on kids with different disabilities [see sidebar], and the growth curves show that these kids don’t grow in weight, height and size like their age-matched peers. If you have a 6-year-old user and you know what a [typically developing] 10-year-old looks like, if you’re planning on that 6-year-old looking like that typically developing 10-year-old, it’s not going to happen. There are specific growth curves for different disability groups because these kids don’t grow like typically developing kids.”

Age-Appropriate Answers

Other ways that Rosen tries to make pediatric chairs as inviting and efficient as possible include camber.

“I usually put 4° or so of camber for my little ones, because their chairs are so small I don’t have to worry about doorway access,” she explained. “Putting the camber there makes the chair turn better and moves that wheel a little closer to them. I like to give anybody some camber when I can, but if you’re much larger, I can’t because then you can’t get through any door.”

She also likes to build in some seat slope: “I see a lot of kids come into my office with no seat slope. You try sitting in a chair with no seat slope! If you look at office chairs, the butt is lower than the knees. When you sit flat, you feel like you’re going to fall out of that chair.”

Rosen doesn’t worry much about propulsion styles with her youngest users, who wouldn’t listen anyway: “I just say go at it. But if you come to me at 7 or 8, and you’re already in a chair, then I will get in a chair next to you and I will show you how much easier pushing is if you use a semi-circular pattern versus that arc [see sidebar]. I know that my kids who are afraid of their chairs and don’t use their chairs much are ‘arc’ kids. Because they’re not comfortable in the chair. Either somebody made it too tippy initially so they’ve learned to take short little strokes so the chair doesn’t flip, or when the wheel’s too far back, all they can access is the top of the rim. So they’ve developed that arc pattern because that’s the only thing that works.

“I will try to take slightly older kids out of the arc only because I think that’s not as functional over time. What I find is most kids, like a 12-month-old when they first get into a chair, they will arc just at the very beginning. Then as soon as they get comfortable, if they’ve got trunk [control], they’re leaning forward and pushing because they realize, ‘This thing gets me somewhere fast, I want to get there fast, and this is the most functional way to do it.’”

Rosen added that she educates families early: “Sometimes I can’t get the wheel position to exactly where I want it, because maybe it’ll be too tippy for a new user. But I always inform the family: ‘In six months, call the supplier, have them come out. Move those wheels where we want them, because she’ll be a better user then.’ Or ‘We had to put [anti-tip] wheelie bars on there for right now. But down the road, I would like to lose those wheelie bars.’”

The ultimate reward of starting a very young child on independent mobility is seeing how far they can go.

“I think the younger you put them into it, the less stigma that’s attached to it from the kid’s side,” she said. It’s just empowering. They think about their chair the same way a kid gets up in the morning and puts his shoes on. The younger you put them into the chair and the more functional you make them, the less they see it as a limitation. They’re thinking, ‘Why don’t these other kids have wheels? I’m faster than they are. Every kid should have wheels.’” Rosen remembered putting a toddler in his first chair the same weekend that elite wheelchair racers happened to be in town for a competition. Upon seeing the athletes at the mall, the child got inspired.

“He went over to them,” Rosen said, “and he said, ‘Let’s race!’ He’s challenging some of the top wheelchair racers in the world because he could. Because he didn’t see himself as being any different than these other people who had these chairs with wheels. And that was awesome.”

This article originally appeared in the September 2019 issue of Mobility Management.

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