Right from the Start

• By Laurie Watanabe
• Jun 07, 2020

We make many judgments based on first impressions.

Imagine a toddler seated in a wheelchair in a preschool classroom. The child leans sharply to the right, his head hanging, his ear rubbing his shoulder. As classmates run about, chatter and grab for toys, the child in the wheelchair remains on the outskirts of the activity. When a teacher sits the group down for storytime, an aide pushes the boy in the wheelchair closer, but the child remains in that leaning position, unable to clearly see the pictures in the book the teacher holds up.

As the other children shout out answers to the teacher’s questions, the boy in the wheelchair stays silent. It’s difficult to discern exactly what he’s seeing.

So what are his classmates likely to think about this child who never directly looks at them and never speaks? How hard will the teacher work to engage a student who seems to show little interest?

How much of his world is passing this child by because he’s not able to optimally observe, listen, reach, touch and react — because of his positioning?

Positioning in the Early Years

Lauren Rosen, PT, MPT, MSMS, ATP/SMS, is Program Coordinator for St. Joseph’s Children’s Hospital in Tampa, Fla. She said there are numerous benefits — physical, cognitive, social — to optimally positioning a child who uses a wheelchair.

“There has been a fair amount of research that shows that if a child can visually interact with people — if they’re seated better, so they can hold their head up better — they can visually interact with their environment more,” she said. “And if they’re able to talk, keeping their head up is certainly much more conversational than their head facing straight down.”

Gabriel Romero is VP of Sales & Marketing for Stealth Products. Among Stealth’s offerings is the i2i Upper Torso Support, designed by Leslie Fitzsimmons, PT, ATP.

“When we came out with the i2i, it taught us a lot about positioning,” Romero said. “We were dealing with clients with low and high tone, with cerebral palsy. I have been in tons of seminars over the years, and some of the best educators were saying, ‘90-90-90.’ I know the pelvis is important. But I truly believe the head dictates where the pelvis is going to go. You can stabilize the pelvis. But if my head starts to tilt, all my muscles change and transform.

“Positioning is extremely important with children, due to the fact that their muscles are developing, and you could be creating a long-term deformity because you’re not considering basics.”

Seating & Optimal Function

Less-than-optimal positioning can impact the developing child in critical ways.

“Being more upright, even if you include a stander [in the child’s regimen], has been shown to help with visual focus, attention, and convergence of the eyes,” Rosen said. “[It encourages] being more engaged in the environment and engaging others. If I can look at you and you can see that I’m looking at you, you’re going to be more likely to want to interact with me than if you’re having to talk to my head.”

Optimal positioning, Romero added, also supports optimal respiratory function and “being able to breathe. If I’m looking down, I’m closing my airway. I’m choking from not being able to swallow. You have to have a towel on the child all the time because they’re drooling.”

“The better you’re sitting,” Rosen explained, “the better it is for sound production itself. If [my posture is] totally rounded, with rounded shoulders and my head is down, for me to get a deep breath to make some sort of vocalization is much harder than when I’m in a good position.

“Similarly, sitting in an upright position, head over pelvis, also helps if I’m using a switch for an aug comm (augmentative or alternative communications) system. It’s easier to reach for the switch if my trunk is upright than if I’m rounded forward.”

Seat Sizing & Function

Rosen added that the size of the wheelchair — seat width and depth, for starters — can also impact how well children who propel their own chairs can interact with their environments.

“When the chair is enormous — when I put my arm out to the side, and I’m not even outside the footprint of my chair — I can’t pull a book off the shelf or a glass off the countertop,” she said. “I can’t get to those things.”

Positioning components meant to keep a child optimally upright can also have an unintended effect: “You could have me so locked into the system that I can’t lean forward to reach into the refrigerator. If you use a chest harness [and similar components], I can’t get to those things.”

When fitting a child for an ultralightweight chair, less can be more.

“What does the kid actually need to sit up?” Rosen asked. “Do they need lateral supports? A lot of people automatically say, ‘It’s a kid, they need lateral supports.’ But some of these kids have fine trunk control, so they don’t need lateral supports.

“For a kid who self propels, I’m also looking at the height of the back. Think about when we design a chair for an adult who propels: When we can, we usually try to go [with a backrest] right below their scapula. I’m also shooting for that with a kid because their scapula needs to move the same way an adult’s needs to move. I aim for that if I can, if they don’t need the trunk support. Certainly if they need the trunk support to stay up, I’m giving them the trunk support.” But Rosen still tries to choose components that support as great an amount of movement as the client can manage.

“If I’m giving you lateral supports and you’re propelling,” she said, “I’m going to give you lateral supports that are straight versus those that are curved in, because the straight ones allow you to lean forward, where the curved ones don’t. So I’m giving you the excursion that you need to push the wheelchair, because you do need to lean forward to push.”

And while working with pediatric clients definitely requires a growth plan, Rosen said she’s careful not to sacrifice function and mobility.

“People frequently build in too much width,” she said, “like ‘We need to give them 2" of width growth.’ Most of these kids don’t grow 2" in width. Especially for kids with cerebral palsy, if you look at the growth curves, they don’t grow at the same rate in length as they do in width. They tend to stay skinnier. I’ve seen a lot of kids [from other clinics] who have had a chair for five years, and the chair still doesn’t fit them. In a lot of those cases, the wheels are further back than I’d want them to be, so it’s harder to push. I just think it limits their ability to be a kid.“

The Window of Opportunity

So, back to first impressions. Just as peers, teachers, caregivers and family members can incorrectly perceive a child as unengaged just because that child is unable to sustain eye contact, the child with the disability can also be making decisions based on first impressions. And those decisions can shape how mobile and active that child will be going forward.

Rosen, for instance, said a significant number of teenage wheelchair users are overweight when she sees them for the first time in clinic.

“Some of that is coming from the fact that pushing the chair is hard,” she said. “If moving around is a pain, I’m just not going to do it. My couch, a video game and some Cheetos are awesome. Why would I go outside and play with my friends when pushing my chair is exhausting?

“If we set these chairs up in more functional positions, these kids don’t see chairs as a limiting factor, and they tend to be more active. I especially see a lot of it in kids with spina bifida: I’ve got friends with spina bifida who are world-class athletes. That’s because they had functional chairs from the beginning — whereas I see kids with spina bifida coming into my clinic as teens, and they’re heavy. I don’t think that has to happen. I have kids who started with my clinic when they were very young; they are wheelchair users and are not heavy. They are high functioning and play sports and do [activities], and they want to do that because the chair has been enabling from the beginning. So the less [equipment] you can put on that chair and the more dialed in that chair is to that kid, the more they see it as enabling. It’s very hard to change that behavior when you’re 14.”

The fact that first impressions can shape the rest of our lives reinforces how critical it is to optimally position young wheelchair users from the very start.

“If you have a wheelchair that makes mobility difficult, then you don’t want to be mobile,” Rosen said. “If you start them out that way, if from the very beginning you teach them that mobility is difficult, they’re going to do the least amount of mobility possible.”