A few months before he turned 2, Andrew Peffley and his mother, Terri, visited Longwood Gardens near their Delaware home. Terri paused to photograph a flower, but Andrew wanted the camera.
“I let him see my camera for a few minutes,” Terri recalled. “Then I took it away. And he was very mad.”
So Andrew screamed. And he spun.
Because Andrew has spina bifida, he’s participating in a University of Delaware study that started training him in a power chair when he was 7 months old.
“He couldn’t throw himself on the floor and kick his legs,” Terri said. “But what do you do when you’re in a power chair? You scream and spin. That is the parallel in a power chair.”
Independent Mobility in Infancy
Andrew is a pioneer of sorts, among the first children who, despite disabilities, attain independent mobility pretty much on schedule – that is, at roughly the time that able-bodied infants start sitting, rolling, crawling. Babies in the Delaware study are put into a robotic power chair as early as 6 months, says Cole Galloway, director of the school’s Infant Motor Behavior Lab.
The robotic chair has sensors that “see” obstacles and stop short of or maneuver around them when infants are driving. The chair also has a “virtual leash” that keeps drivers within a few feet of caregivers. Those safety features, as well as the chair’s tiny size, have made it possible to offer independent mobility to the very youngest children.
Andrew grabbed on and hasn’t let go. When he’d outgrown the chair at about 12 months, he was transitioned to a Permobil Playman Robo power chair, the result of Galloway calling Permobil’s Amy Meyer and telling her of Andrew’s progress.
As the rehab manufacturer’s pediatric & standing specialist, Meyer knows how critical mobility is to a child’s development. “Mobility is such a primary need for people to be able to make other decisions,” she says. “For me to choose the toy I want, a lot of times I have to move to get to that toy.”
Galloway concurs: “When you have mobility impairments, you never get to show that kind of independence…. No wonder that some of the latest results are suggesting that after four to six months of three-times-a-week (independent mobility) training, kids are (testing) significantly higher on their Bayley developmental scores.
“They start looking up, they look into the future and into the distance. And they turn to caregivers and go, ‘Wait a minute. I went and got those things when I had the robot. I want you to help me get those things right now.’ That type of dynamic interaction between baby and caregiver is really where the big bump in cognition comes. And it’s the same bump that comes when a typically developing kid is crawling or walking.”
Noticing Developmental Parallels
Terri Peffley, Andrew’s mom, has an especially astute perspective of early development. Not only is she an OT, she’s also a mother of four; her older kids range in age from 5 to 9.
Andrew’s participation in the Delaware study started at 7 months old “just with cause and effect. We’d have the joystick, and he’d pull on it.” To attain “purposeful driving,” Andrew would have to “drive straight for 5 or 6 feet and get a toy from you. Working on him actually wanting the toy took a couple of months.”
But Terri says Andrew knew, from the very first day, that he was causing the chair to do something amazing. “We have a video,” Terri says. “He grabs onto the joystick and his eyes go all around the room because he was going in a circle, the way he was pulling it. He looked at me like, ‘Oh, look what it does! This is crazy!'”
Andrew drove the robotic chair three to four times a week. By 15 months, Terri says, “he totally understood turning, judging distances and judging doorways. In the beginning, he thought things would get out of his way, like people do. He would drive up to something and keep driving until he landed on it, like the water fountain. So those things came with experience.”
Terri says Andrew’s development has been “very parallel to typical development. Because of the headrest, he hasn’t been able to turn his head and see what’s behind him. So he would actually turn the chair to see what’s behind him, just as you turn your whole body and not just your head when you’re learning control over your body.
“Now he’s good at driving the chair, so he likes to hold my hand as we go along the sidewalk, which is really sweet.”
My Power Chair, My Self
While older children view their power chairs as tools to be driven, Galloway says Andrew behaves as if his chair is an extension of himself. For instance, Galloway says when Andrew fidgets, he does so by moving the chair – not himself – back and forth.
Terri notes similar behavior: “We were at an apple orchard that had goats, and the goats came up and nibbled at his chair. They weren’t biting him, they were biting his chair, and he was still like ‘Get me out of here!’ It was like ‘The chair and I are one.’ If he does bump into things from time to time, he gets upset. He cries, almost like he’s hurt.”
As for common parental worries that kids who use power chairs will lose interest in walking, Terri notes, “We have a mobile prone stander that he uses in the house. We have the power chair. He is also carried or put in a stroller sometimes, too.
“Now I see him commando crawling and getting on a scooter board. I’ve tried everything to allow him to move, and the power mobility has been the best and easiest for him, even compared to the manual stander that he has. He still wants to do all the other stuff. We’re working just as hard on getting him to walk as we have getting him to drive.
“I think of it like this: We teach our typical kids how to walk, then we teach them how to ride a bike. Do they always ride a bike? We learn to run, but we don’t always run.”
Terri adds that the family is glad Andrew had the opportunity to participate in the Delaware program.
“I always felt like there was this hourglass, and I was racing: We’re going to have PT twice a week, we’re going to be in the pool, exercise legs every day… it was this race against time, his development, language, cognitive time that I knew he was missing out on.
“As soon as we got into that power mobility, I started to understand that even though it wasn’t really walking and crawling and getting into the dirt and stuff, it was a step closer. So that kind of stress and burden was kind of lifted. Because we have extra time now to learn to walk, and he has something for now in the interim. He won’t be held behind.”