At 'High Five' Camp, Struggling With A Disability Is The Point | KCUR

At 'High Five' Camp, Struggling With A Disability Is The Point

Aug 10, 2019
Originally published on August 10, 2019 11:54 am

There's a summer camp for kids with disabilities in Nashville that does things a little differently. Instead of accommodating the campers' physical challenges, therapists make life a bit tougher, in hopes of ultimately strengthening the kids' ability to navigate the world.

Priceless Garinger's left arm is wrapped from shoulder to fingertips in a neon pink cast on the day I visit. The left is actually the 12-year-old's strong hand. It's her other arm and hand that's been the problem since she was born with cerebral palsy. She can move her right arm but has difficulty grasping anything.

"Right there, where you bend your arm, it itches right there," she says, using a plastic spoon to scratch her elbow, which is out of reach.

This day camp is organized by Vanderbilt Children's Hospital. Some campers, like Priceless, have cerebral palsy; others have had a brain tumor removed, or had a stroke. All of them have a weak side of the body they rarely use. At High Five Constraint Camp the children are forced to try to strengthen that weak side.

"Yeah, there it is," Priceless says as she bumps bare arms with a fellow camper — an improvised fist bump.

This kind of rehab is known as constraint-induced movement therapy. Similar camps are run by children's hospitals all around the U.S. during the summer, based on research by Edward Taub at the University of Alabama at Birmingham. He hypothesized years ago that the affected limbs suffer from "learned nonuse."

Priceless takes her turn on the indoor obstacle course at the hospital's pediatric rehab facility, located at a Vanderbilt satellite campus on Nashville's outskirts. She rides a modified zipline, wrapping her long legs around the swinging seat — swooping along and then dropping into a pit of overstuffed pillows.

The occupational therapists prompt her to climb out. They cheer her on but don't immediately help. The struggle is the point.

Priceless finds her way out, and next plops down on a scooter. She grunts as she tries to propel herself with a hand that she can barely control.

"I'm not going anywhere," she says.

Her therapist gives her a little boost toward the finish line, where Priceless hits a buzzer that sounds an alarm and draws cheers from the other campers.

Constraint-induced therapy

The restrictive rehab techniques are increasingly used with kids who have cerebral palsy, though there hasn't been much research showing the approach is all that much better than traditional physical therapy. And some kids become overly frustrated or even refuse to cooperate.

To outsiders, the strategy can seem mean.

"If the families have never heard of it before, it's kind of like, 'What? You're going to cast their good arm and take away their really functional hand?' " says occupational therapist Stephanie Frazer.

This particular day camp started a decade ago as part of a research project at Vanderbilt University. When the study concluded, the camp shut down. But Frazer revived it in recent years because she believes the approach, and the setting, are effective.

"Whenever we're casting that good arm, the brain is like, 'I have this other arm here.' And they start using it more and it starts creating pathways," she says. "They actually make a lot of progress in a short amount of time."

The kids' temporary casts end in a mitten shape to minimize any wiggle room and attempts to rely on that stronger hand while at camp.
Blake Farmer/Nashville Public Radio

Even snacktime can be turned into a therapeutic experience. Playing with food is required at this camp. The kids take pretzels and stab them into blocks of cheese.

Some blow bubbles in their juice, partly out of frustration. Some resort to using the arm that's in a cast to feed themselves.

Seeking independence

This is the third summer of camp for Priceless, who wasn't exactly enthusiastic when she started. But she's beginning to see how helpful it would be to be able to rely on both hands to do things like manipulate a remote control.

"I want to play with my iPad and watch TV," she says.

The parents of the campers are even more motivated, because they understand how the use of two hands could make independence in adulthood much more feasible for their children.

"She talks about wanting to drive," says Laura Garinger, Priceless' mom.

From past experience, Garinger says she suspects that for the first few months after this camp session, Priceless will use her weak hand more often. But in past summers she has eventually reverted to relying on her strong side.

Still, Garinger says, she has witnessed lots of other, permanent successes.

Garinger, who is a special education teacher, met Priceless when the little girl was 3 years old; she adopted Priceless two years later. The preschooler needed to use a walker at the time. Now she walks on her own.

Being able to rely on both hands would go a long way toward helping Priceless achieve her dreams, her mom says.

"She hopes to be a police officer, so the sky's the limit. We'll see," Garinger says, pausing as her voice shakes with emotion. "I mean, it's probably not realistic, but I always tell her she can do what she wants when she grows up."

Garinger says the first step for Priceless is strengthening her arm enough to give a high-five — and a two-arm hug.

This story is part of NPR's reporting partnership with Nashville Public Radio and Kaiser Health News.

Copyright 2019 WPLN. To see more, visit WPLN.

SACHA PFEIFFER, HOST:

There's a summer camp for kids with disabilities that does things a little bit differently. Instead of accommodating the campers' physical challenges, therapists make activities a bit tougher. They're trying to strengthen the children's ability to navigate the world. Blake Farmer of member station WPLN visited one of these camps.

BLAKE FARMER, BYLINE: Twelve-year-old Priceless Garinger is repurposing a plastic spoon to scratch her elbow underneath a bright pink cast.

PRICELESS GARINGER: Right there - where you bend your arm, it itches right there.

FARMER: That itchy left arm is wrapped from shoulder to fingertips. This is her strong side. It's the other that's been a problem since she was born with cerebral palsy. Everyone in this day camp has a condition that's weakened one side of their body. Others have survived a brain tumor or stroke.

UNIDENTIFIED OCCUPATIONAL THERAPIST #1: Boom. There it is.

PRICELESS: Yeah, there it is.

FARMER: Priceless attempts a high-five with a new friend and takes her turn on the indoor obstacle course at Vanderbilt Children's Hospital. She rides a modified zipline and drops into a pit of overstuffed pillows.

UNIDENTIFIED OCCUPATIONAL THERAPIST #2: Woohoo. Oh, let go. Yay.

FARMER: The occupational therapists cheer her on but don't rush to help.

UNIDENTIFIED OCCUPATIONAL THERAPIST #2: All right. Climb out.

FARMER: The struggle is the point. She finds a way out then lays down on a scooter, trying to propel herself with a hand that's hard to control.

UNIDENTIFIED OCCUPATIONAL THERAPIST #2: Put that hand flat.

PRICELESS: I'm not going anywhere.

UNIDENTIFIED OCCUPATIONAL THERAPIST #2: You've got it. Go. Go.

FARMER: Her therapist gives her a little boost toward the finish line.

UNIDENTIFIED OCCUPATIONAL THERAPIST #2: And hit that buzzer - record time.

FARMER: This kind of rehab is known as constraint-induced movement therapy. It's increasingly used with kids who have cerebral palsy. But there haven't been big studies showing it's any better than traditional physical therapy. Researchers found the gains often go away, and some kids become overly frustrated.

STEPHANIE FRAZER: If the families have never heard of it before, it's kind of like, what? You're going to cast their good arm and take away their really functional hand?

FARMER: That's occupational therapist Stephanie Frazer. She says constraint therapy can seem mean. This day camp started a decade ago as part of a research project at Vanderbilt University, but it was temporary and shut down when the study concluded. Frazer revived it in 2015 because she's a believer.

FRAZER: Whenever we're casting that good arm, the brain is like, oh, I have this other arm here. And they start using it more, and it starts creating pathways. And they actually make a lot of progress in a really short amount of time.

FARMER: Nudging the kids to use their nondominant arm is even part of snack time.

PRICELESS: Thank you.

FARMER: Campers stab blocks of cheese with pretzel sticks.

(SOUNDBITE OF BLOWING BUBBLES)

FARMER: Some blow bubbles in their juice, partly out of frustration. This is the third summer for Priceless, who wasn't exactly enthusiastic when she started. But she's old enough to understand how useful two hands can be.

PRICELESS: I want to play with my iPad and watch TV, to turn on the TV with the remote.

FARMER: The parents are even more motivated because they're thinking of adulthood and independence. Laura Garinger is Priceless' mom.

LAURA GARINGER: Well, you know, she talks about wanting to drive. So she's going to need to have two hands to drive.

FARMER: And Priceless has big dreams that are hard for her mom to talk about.

GARINGER: She hopes to be a police officer. So sky's the limit. We'll see.

FARMER: It seems like the idea of that touches something. Why?

GARINGER: It's probably not realistic. But I always tell her she can do what she wants to do when she grows up. So we'll see.

FARMER: The first step for Priceless is strengthening her arm enough for a proper high-five, or even a two-arm hug.

For NPR News, I'm Blake Farmer in Nashville.

(SOUNDBITE OF LOW SONG, "SHAME")

PFEIFFER: This story is part of a reporting partnership between NPR, Kaiser Health News and Nashville Public Radio. Transcript provided by NPR, Copyright NPR.