By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
Jackson Dewitt is a young man of few words, but he knows how to get his point across with a grin, a frown, even a kick here and there.
Jackson (Jax for short), 13, is at Riley Hospital for Children for an appointment with two occupational therapists to get outfitted with a new wheelchair and a car positioning vest that allows him to sit upright in a vehicle properly restrained with a seatbelt.
He and his identical twin, Matthew, were born three months prematurely, weighing about 2 pounds each. Both have cerebral palsy, which affects their ability to move and maintain balance and posture, though Matthew is higher functioning and is able to walk.
Jax operates cognitively at the level of a 1- to 2-year-old and is unable to sit up independently or walk. So this visit to Riley’s adaptive equipment clinic in the Riley Outpatient Center is important for his quality of life.
As occupational therapist Tony McGovern explains to the boy’s mom (Jennifer) and dad (Steve) how the positioning vest works, Jax fiddles with McGovern’s ID badge.
“Want to try on the vest, bud?,” McGovern asks. “On,” says Jax, who is rocking two different-colored socks today.
With that, Mom and Dad lift the 90-pound boy out of his wheelchair and onto the therapy table so McGovern can slip the vest on and demonstrate how it works.
When McGovern asks him how it feels, he says, “Good.”
The adaptive car seat is really not a seat at all, but it straps into a vehicle similar to a car seat.
“This is for bigger kids who need some positioning support so they’re not falling over at every turn,” McGovern said. “It will help Jackson stay in the right spot in the vehicle and let the seatbelt do its job.”
“Roundabouts and him are not a good fit,” agreed Jennifer, who lives in Hamilton County.
Jax loves to ride in the car, and he also loves to kick the seat, his mom said.
“The more he kicks, the more he slides down. This vest will help. It’s a game changer for parents.”
That’s because parents typically have to lift their kids into the vehicle, and anything that makes that harder, or higher, presents a challenge.
“When you have a 90-pound kiddo and you’re trying to get him in and out of the car, it’s awkward anyway,” she said. “With this, you don’t have to deal with lifting him up and forward like other car seats with the lip on the side because he’s sitting on the seat. Our backs don’t feel so good by the time our kids get to 13.”
Once McGovern is finished demonstrating the positioning vest, occupational therapist Tiffany Stead moves in with a wheelchair trimmed in blue with the name “Jax” on the seat. The chair, which replaces one that Jax has outgrown, gives him more independence and a much better quality of life, Stead says.
“You like your new wheels, Jax?,” she asks. He grins.
While Stead would like to think this new chair is indestructible, she knows her patient, calling him a “rough rider.”
“As he grows, we can modify and adjust it. With Jackson, we’ll probably be doing something within six months. He is hard on his equipment,” she said.
Jennifer describes her son as a Houdini and “very determined” because he can figure out ways to break things. He has even tried to eat the headrests on his chair.
Regardless, Jax’ wheelchair gives him more opportunities to interact in school, in therapy and socially, Stead said.
“Without a chair, he’s limited to lying down because he has a hard time sitting up on his own. This just gives him more access,” she said.
Jennifer echoes that point.
“It’s one thing when you’re 30 pounds and a toddler. When you become 90 to 100 pounds and almost as tall as mom, it becomes a whole different story,” she said. “It’s quality of life for him. It’s quality of life for all of us.”
Photos by Mike Dickbernd, IU Health visual journalist, email@example.com