Free wheeling

UD helps a 3-year-old with cerebral palsy get around -- while giving other kids hope

By RACHEL KIPP
The News Journal



It was late afternoon, close to dinnertime, and Julianne Harp was ready to leave the playground for home. But when Harp walked toward the exit, her 3-year-old son, Will, headed in the opposite direction, toward the sandbox.

"It's so nice to see him able to do typical age-appropriate behavior -- that outweighs your frustration at him for not listening," Harp said.

Harp clearly welcomes Will's little acts of defiance. Since he was born, there haven't been many times she has had to run after her preschooler.

Will has cerebral palsy and the neurological disorder has left him without much control of his arms and legs. Most of the time, he relies on adults to carry him or to push his stroller. Oftentimes, he sits on the sidelines while classmates at the University of Delaware's Early Learning Center race each other on tricycles.

But this summer is different. For the first time in his young life, Will is joining the chase.

With a turn of a joystick, Will zips around in a power chair custom-made by researchers at the University of Delaware. Using the chair, the brown-haired preschooler can travel in a pack of his classmates from the sandbox to the swingset and back. He no longer has to yell for friends to come to him, or bring up the rear because he had to wait for an adult's help. The research team taught him to drive, and they've been a constant presence over the past several months, watching how Will reacts to his newfound independence.

Will is at the center of a study of power mobility in young children. Researchers wondered if babies could use power chairs to move around obstacles. Now they are looking not just at mobility but at how the freedom of movement affects a child's ability to make friends and interact with the world.

"He's never been reprimanded, he's never acted out. He's the perfect student in class -- and it's horrible," said Cole Galloway, an associate professor at UD and one of the lead researchers. "There's a window right now at his age and if we don't get him mobile and social ... he's the perfect elementary school kid. He's the hidden kid."

Other researchers have conducted studies that involve children using robotic devices, but this work is unique because of the young age of the children and because it looks at the role mobility plays in developing a child's social skills and personality. Researchers hope their work could lead to young children whose immobility now hinders their social development to learning socialization skills to enable them to make friends so they are not behind their peers when they enter school.

The team at UD believes that starting young is essential because by the time a child enters kindergarten, there are fewer opportunities for unstructured play. Children don't usually start using power chairs until early elementary school; as toddlers and preschoolers, they often rely on adults to carry them from place to place. UD researchers are worried that, by age 6 or 7, children without mobility have already fallen behind in terms of learning to take risks and initiate the spontaneous interaction that is often so key to making friends.

"Will has developed tremendous focus and attention. What this helps him to do is engage in more cooperative play and to navigate his world," said Laura Morris, associate director of the Early Learning Center. "There are very few 3- and 4-year-olds who don't challenge the world in some way. That's how a child learns to take risks, how they learn to push limits and how they learn to get what they want through lots of different strategies. Will hasn't had the same kind of early opportunities to do that."

Taking it to the next level

When Galloway's team began studying power mobility in children, their work was confined to the lab and the Early Learning Center gym. There, researchers observed babies from 4 months to 15 months old as they drove power chairs with robotic brains and sensors to help them avoid walls and bumps.

To take the study to the next level, however, they had to introduce the obstacles of daily life.

"It's immensely different to be using this technology in a real community," Galloway said. "Now it's not just about the technology, it's about Will."

Will's family got involved in the research on the advice of Tracy Stoner, his physical therapist. Crawling, walking and getting in and out of different positions have always been a challenge for him, and Stoner thought he might be motivated if given the power to easily move on his own.

"He puts out so much energy when he's trying to walk; he's working so hard that he's just dripping with sweat trying to get where he's going," Stoner said. "I know he's working his little heart out. And one of the other reasons I saw Will as being a candidate for power mobility is if I have to work so hard to get 50 feet to a toy I want, if I'm so exhausted by the time I get there, I don't want to play anymore. It's sort of negative reinforcement: I won't move because it takes so much energy, and I hate walking because it's taking so much energy."

Will started working with the UD researchers when he was 2 1/2. First, he learned to drive what the team calls his rocket chair. Although the chair is one of the smallest power chairs available, it was too bulky for the classroom. Will could use it only in the Early Learning Center gym or outside on the playground.

In July, however, Will started using UD2, a power chair about the same height as his classmates' tricycles. A green and blue booster seat with a tray is attached to the robot, which has indoor/outdoor wheels and a wireless joystick. It has a robotic brain and sensors that researchers covered with a red foam swimming noodle because Will is adept enough to avoid obstacles on his own.

"It took him three months to learn to drive when he started," said Christina Ragonesi, a UD graduate student working on her doctorate in biomechanics and movement science who taught Will to drive the power chair. "The coolest part of the training was when he learned to drive away. I'd say it was time to leave the gym and he would drive away from me. It showed Will was learning to make his own decisions."

Learning to drive

Before Will began using UD2, researchers filmed him during class to see what his life was like without the power chair. It was business as usual at the Early Learning Center, a day care facility that does double duty as a living laboratory.

"He would just sit, he had to rely on teachers to move him from Point A to Point B," Ragonesi said. "He couldn't really make his own decisions unless he called a teacher over."

The power chair is only one of the devices that Will uses to get around. The researchers, his physical therapist and his parents agree that he needs to spend time each day using technology like a gait trainer that gives him the support he needs to walk.

"He needs both. He can't just have all the power and he needs to learn standing and he needs to use the gait trainer," Stoner said. "He needs to have options for both so he has time to learn and time to explore and time to walk and transition within tight spaces. Right now, no matter how small the robot is, there are places where it can't go so he needs to learn to walk."

When the researchers started training Will, they thought he would "just take off," after learning to drive the chair, Galloway said. That didn't happen. Soon after he started using the device, a group of classmates started a game of hide-and-seek. Will was "it," but after counting to 10 while the other children found hiding places, he didn't move.

"Just because Will understood how to drive in the halls didn't mean he knew how to use his mobility to play a game like hide-and-seek. He could tell you the rules of hide-and-seek but he couldn't use his mobility to interact and know that if I'm going to come seek you, I have to use the power chair to do that," Galloway said. "Even though he knew how to drive, even with the robot in class, it's taking some intervention for him to learn how to go and follow a group to a next activity."

Gradually, Will is getting used to the new circumstances. Recently, he donned a policeman's costume and drove around the classroom pretending his chair was a cruiser. He figured out the chair had enough bulk to push the classroom bookshelves along the floor. The little boy's classmates helped out by moving chairs or toys out of the way of the power chair.

While using UD2 on the playground last week, he was initially more interested in handing Ragonesi shovelfuls of sand from his pail and drawing on his tray table with sidewalk chalk than moving around.

"What color is this?" Ragonesi asked as she helped him draw a star on the tray with lilac-colored chalk.

"Purple," Will replied.

Then Will decided he wanted to drive under the playset. He careened toward the slide. His friends, twins Alexis and Arianna Mayle, ran over. Will shared the sand pail with the girls and the three wandered away together chattering, as Ragonesi shouted after Will to stay off the grass.

"I like to see this," Ragonesi said. "He never used to initiate anything."

The team studied Will's use of the power chair for 19 days. They filmed him for two hours a day and documented how many minutes he spent at each activity and how many minutes he spent interacting with other children and adults. A computer inside the chair provided raw data about Will's movements. Last week, the team was preparing to take the power chair away for three days to see how Will reacted to losing the mobility.

"If he cries and asks for it, we're going to give it to him the minute he cries," Ragonesi said. "After this week, we'll give him the robot from now on. We'll step out of the picture."

Selling the chair

Typically, children with physical disabilities don't start using manual wheelchairs or power chairs until they're about 2 years old, said Dr. Timothy J. Brei, a developmental pediatrician at the Riley Hospital for Children in Indianapolis and medical director for the Spina Bifida Association, an advocacy group. Brei said most children start out using manual chairs.

"Power mobility is very expensive and you want to make sure you give it to someone who can really effectively use it," Brei said.

Although many in the medical community believe that mobility has some bearing on other aspects of a child's development, Brei isn't aware of any studies that document the connection.

"A child at preschool age is learning about who they are separate from their parents and they're learning social skills, interacting with their peers, playing or turn taking," Brei said. "But are they also learning something about who they are and their own sense of self-competence or self-worth or self-esteem? I think that may be as valuable as any just flat-out ability to navigate their environment or cognitive learning or social skills learning."

For the UD researchers to move forward with their work, they need to get power chairs into the lives of other children with physical disabilities.

Galloway gets a call about every two weeks from families who read about his work and want to get their children involved. But the team needs additional funding to expand. Ideally, they hope to form partnerships within the business world and commercialize the power chairs.

UD2 was developed by Sunil Agrawal, a mechanical engineering professor. His group ordered the pieces of the chair, assembled it and then wrote a software program so the device could be used for power mobility. The challenge they face is developing commercially available chairs that have the same technology as Will's but can be sold at a relatively low cost. Each robot costs between $15,000 and $20,000; the researchers want to develop a chair that could be purchased for $1,000 to $2,000.

The team submitted a grant proposal to the National Institutes of Health that would fund the production of 16 power chairs -- half would be similar to Will's and the other half would be tweaked so the researchers could study add-ons. If several dozen families living in Delaware or across the country started using the chairs, Galloway said, their experiences using the devices in different environments would help the researchers continue to perfect the technology and explore mobility's connection to social development.

"We want you to see UD3 in local grocery stores, in churches and synagogues, in ballparks," Galloway said. "That's in line with our research. That's what pushes us to the next level. This kind of project, it's not just research, it's advocacy, it's policy."

The research is also focused on early education, Galloway said. By the time Will is in elementary school, he said, sitting quiet and still becomes an asset rather than something adults discourage. If the little boy doesn't venture out of his comfort zone now, he may never learn to.

Expressing himself

The adults in Will's life say he's an easygoing, "go-with-the-flow" type. But that's not necessarily good.

"He's got to be the bad boy," Galloway explained. "Luckily, he has administrators and classroom teachers who understand that they need to work for the whole range of behaviors, that a tantrum is part of normal development."

"The other piece is trying to be very careful not to turn Will into something he's not," Morris said. "This is about giving him opportunities to explore his world and being able to step back and see how he does that."

Will uses the power chairs only at school. When he wants something at his home in Newark, the little boy uses a tactic he calls "being a caterpillar:" He army crawls to get what he wants. Galloway helped his parents secure a power chair for a recent family trip to Disney World, and it was often Will who announced, "I know how to do it!" and figured out how to maneuver the device through doorways or tight spaces.

"I don't know if it's the chair or it's his age, but he's starting to express himself more," Harp said. "He'll say, 'I want that,' or 'You stole my toy.' He's much more vocal about what he wants and what he doesn't. On the downside, because he can move from one place to another, his attention span, for one thing, has become less."

While on the playground with Ragonesi last week, Will urged, "Let's go!" when she paused to talk to another adult. Without being prompted, he turned back to retrieve a forgotten sand pail. Paul Urbaniak, another of Will's classmates, grabbed the chair's joystick and Will inched a few feet forward. The little boy didn't appear to mind, but Will's teachers reminded both boys that Paul needs to ask permission before operating Will's chair.

Lately, the researchers and Will's teachers are starting to talk about how to react if Will begins using the chair to break the rules.

"We call him the 13th kid. There are 13 kids in his class, but if he's not mobile, there are 12," Galloway said. "You give him mobility and the teachers say, 'Oh no, you just gave us a new kid.' "

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