Pediatric Series

Right on Time

Getting the Most Out of Pediatric Mobility Is About Timing & Inclusion

baby holding an alarm clock

CHILD WITH ALARM CLOCK: VASILYEV ALEXANDR/SHUTTERSTOCK.COM

A common pediatric mobility precept is that operating a wheelchair requires a good grasp of cause and effect. Before kids can effectively self propel a manual wheelchair or drive a power wheelchair, they need to fully understand that their actions cause consequences.

But is it that simple?

Lauren Rosen, PT, MPT, MSMS, ATP/SMS, Program Coordinator at the Motion Analysis Center at St. Joseph’s Children’s Hospital of Tampa, Fla., had a follow-up.

“With cause and effect, the issue is that you don’t necessarily have cause and effect before we do mobility,” she said.

So — is that precept correct? Or is it due for an update?

True Cause & Effect

It wasn’t too long ago that children usually couldn’t get a power wheelchair trial until they were preschool or kindergarten age.

But over the years, pediatric mobility advocates have argued for earlier intervention. For example, Cole Galloway, Ph.D., and the team behind GoBabyGo at the University of Delaware demonstrated more than a decade ago that older infants and toddlers could ably drive themselves in toy vehicles powered by batteries and switches.

Rosen agreed that some children are presumed not to understand cause and effect — and are therefore excluded from wheelchair trials — because they are too young or unable to speak or are simply uninterested in typical cause-and-effect testing.

“Especially if you’re little, maybe you had a therapist who played with a Busy Box with you, where you push the button and Elmo pops out,” Rosen said. “But some kids don’t like the Busy Box because when Elmo pops up, it scares them.

“Or I hit the button, and the blower blows bubbles in my face. I don’t like things in my face! But if I don’t have a lot of movement and I don’t have language, you might not know that bubbles in my face really annoy me.”

Rosen added that a child who genuinely doesn’t understand switch toys might actually understand a power wheelchair better.

“Because hitting a [power chair] switch with movement provides a vestibular input that you don’t get with bubbles coming into your face, sometimes the cause and effect makes more sense to my brain,” she said. “So sometimes the first two times I move the chair, I may not look like I necessarily get that I did that. Usually the first time, there’s this weird, surprised look like ‘What just happened here? Why did it do that?’ Then they hit it again, and it’s ‘Huh. Did I really do that?’ Then the ones with the head arrays will just put their heads to one side and spin. And 99 percent of the time, you can watch their face, and there’s a change in affect, and you can tell they know they’re doing something.”

Racing Against the Developmental Clock

Rosen said her criteria for justifying a pediatric wheelchair is simple: “My two rules for writing for a chair — not for trying the chair, but writing for the chair — is I need to understand that you have some sense of cause and effect, and I’ve got a consistent point of access. So if I think you’re going to be a joystick driver, you’re always going to be able to use that joystick. I’ve had some kids who could drive a head array, but they could only drive it for 10 minutes, and then their necks got too tired. Then you’re not ready yet: We need to send you off for neck strengthening.”

Rosen keeps her clinic stocked with manual and power chairs plus alternative driving controls, so she can quickly try different systems. So when does she want to assess a child? At what age?

“I see some very, very young kids who are very involved and are going to get medical strollers at around 6 months, kids with [cerebral palsy] on vents and trachs who need something to carry all their equipment,” she said. “But 8 months is when I like to start playing with things. That’s when I’d like to start. That’s not always when I get them. But if you’re 8 months old and you look like you have some cognition, I’m going to try something.

“Just on the fly, I can say, ‘Let’s try this power chair.’ I have an Explorer Mini [an early-intervention power device from Permobil] in my office as well, so I have things I can put kids into and try.”

Rosen said she wants to reach young children early not just to maximize their potential, but also because their developmental clocks are ticking. “The kids with [spinal muscular atrophy] that we know are not going to be functional ambulators, I want them in [clinic] yesterday, whatever age they are,” she said. “They’re cognitively normal, so I want to encourage mobility as much as possible, right then, and encourage independence. There’s nothing worse than a kid who is cognitively intact who has not had independent mobility at, like, 5 [years].”

For children like that, learned helplessness — the acquired belief that you have no control over your life, and the passivity that follows — is common. “I tell families that the literature I know of says 4 years of age is your cutoff [for learned helplessness],” Rosen said. “The issues with learned helplessness are not just ‘Come here, do this for me’ — especially for these kids who are cognitively intact and are going to have a fairly long lifespan, with all the SMA drugs and the muscular dystrophy drugs that are coming out. The issue is that kids who have learned helplessness tend to pick lower-status roles. They don’t achieve academically. They’re not movers and shakers. They’re just much more passive throughout their lives, such as with choosing jobs.”

Great Expectations

Avoiding that learned helplessness pitfall is one of the factors that motivates Rosen’s thinking on pediatric mobility. “You want to try manual, I will try manual,” she said. “You want your kid in a power chair, I will put your kid in a power chair. And we’ll try a head array, a switch tray — I have those things here to plug and play with all of my chairs, so it doesn’t hurt me to try it.”

Does she prefer starting kids on switch systems vs. joysticks? “It just depends what they have good control over,” Rosen said. “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 independent mobility for older kids who’ve used dependent wheelchairs 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.”

This article originally appeared in the Jan/Feb 2022 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.

Referrals and Prescriptions podcast