Atlanta, GA,
30
August
2018
|
04:00 PM
America/New_York

Adolescent Patients Press Forward

Shepherd Center’s adolescent rehabilitation program helps young patients get back in the game.

She was 17 and missed her prom. Her prom! She’d even bought a dress. It was long and glittery and perfect. But a day or two after buying that rite-of-passage gown, as Abbie Williamson started to drive out of her Lawrenceville, Georgia, neighborhood, her vision was blocked momentarily by a bus. She collided with another vehicle.

Abbie sustained a broken pelvis and diffuse axonal brain injury. Doctors at Gwinnett Medical Center didn’t know if she’d walk or talk again.

Two months later, after she’d stabilized and transferred to Shepherd Center’s adolescent brain injury rehabilitation program, Shepherd’s staff decided that if Abbie couldn’t go to her high school prom, they’d bring the prom to her. By then she could walk, but she still didn’t speak much or use facial expressions. The improvised prom night changed all that.

As Abbie stepped from an elevator into Shepherd Center’s seventh-floor atrium, alive with lights, music and about 80 friends and family – she beamed.

“It was the first time I saw her smile,” says Cheryl Zjajo, SLP, Abbie’s primary speech-language pathologist during her inpatient stay. “It was a turning point. It was payoff for all her hard work.”

As with any activity attached to the adolescent rehabilitation program, which focuses on patients ages 12 to 21 who have sustained spinal cord and/or brain injuries, Abbie’s prom was more than a mere dance. Nearly every aspect addressed practicing social and cognitive skills vital to Abbie’s rehabilitation, as well as her development as a teenager.

“Their social life is everything to them at that age,” Zjajo says. “When you tie that into therapy, that’s when you’re successful. Therapy isn’t work anymore.”

To that end, Abbie helped plan the invitations and music, as well as her own hair and makeup – all of it connected to therapy goals centered on organization, initiating ideas and receptive-expressive language. She invited classmates from Mountain View High School and other teens at Shepherd Center.

Now a 21-year-old sophomore at Samford University in Birmingham, Alabama, Abbie doesn’t remember much from that evening. She was still recovering from post-traumatic

amnesia, which lasted until right before she finished inpatient therapy at Shepherd. But her mother’s memory of the event, and its effect on Abbie and her family, remains vivid.

“It normalized the situation,” says Mary Beth Williamson, Abbie’s mother. “It showed us all that life as a ‘normal’ teenager, despite the challenges, can continue.”

WHAT’S A NORMAL TEEN?

Experiencing life as a teen can feel far from normal even under ideal circumstances, but even more so when you’re a teen recovering from a brain or spinal cord injury.

Their maturity level is very different,” says Anna Elmers, M.D., staff physiatrist at Shepherd Center. “There are a lot of self-image issues, a lot of insecurities. Then you put a traumatic injury on top of that.”

Enhanced by donor funding, Shepherd Center’s adolescent rehabilitation program tackles all of those dynamics. In addition to physicians, the program’s dedicated staff includes a counselor, therapists of various disciplines and educators. When possible, adolescents live on the same floor of the hospital and use the same area in the therapy gym for rehabilitation during their inpatient stays.

Activities are designed specifically for them. Fun Fridays include outings and events – Braves games, hikes, a trip by foot or wheelchair to a Chick-fil-A up the street – most taken without parents. It’s a chance to practice the skills they’ve learned inside the accommodating spaces of Shepherd Center out in the real world.

“They’re putting all the pieces together,” says Shanna Thorpe, CTRS, a recreational therapist.

“There’s potholes, doors not wide enough for their wheelchairs, bath-rooms that aren’t accessible. It’s what they’ll have to deal with when they go home and want to go to the movies with friends.”

Fun Fridays also give young patients a chance to bond and share experiences with each other.

“We haven’t really started our lives but we’re all going through the same thing,” says Michael “Mikey” Doherty, 17, from Mandeville, Louisiana. He sustained a complete T-3 spinal cord injury while playing football. “We can talk about anything. It’s different from hanging around a 40-year-old.”

The adolescent rehabilitation program also provides resources for patients to keep up with classwork and stay on track for graduation, when cognitively and medically appropriate. Lesson plans are prepared in consultation with teachers and counselors. A room with whiteboards and reference materials – a dictionary, SAT prep, “Hamlet” – is used for one-on-one teaching sessions. The pro-gram provides equipment, such as adaptive pens for students who do not have full use of their hands.

Teachers accommodate patients whose injuries prevent them from going to the classroom. Instead, teachers go to patients, explains Sherry Robinson, the program’s recently retired academic coordinator and a former public and private school teacher.

“I’ve taught ‘The Great Gatsby’ in all kinds of settings,” Robinson says, “including bedside to a student on a ventilator.”

Shepherd Center’s therapy team and new, on-staff academic coordinator even make plans to ensure that students who are in the adolescent rehabilitation program have a smooth transition back to school in their hometown. They develop a report for the school staff before the student goes back, and a therapist may visit the school to make sure accommodations are ready for the student’s arrival.

The results? Of the 20 students who attended Shepherd Center’s school program as members of the class of 2017, 18 graduated on time. Of the two who didn’t, one earned his GED and the other graduated after summer school.

Overall, more than 90 percent of adolescent patients at Shepherd Center with spinal cord injuries return to school within two weeks of discharge. Of those, 95 percent graduate with their class and with their pre-injury grade point aver-age. Additionally, more than 90 percent of adolescent patients with brain injuries return to school within three to six months of discharge.

LOOKS LIKE TEEN SPIRIT

Cheryl Linden’s office looks like teen spirit. Linden, LPC, OT, is the adolescent rehabilitation program’s feisty, impassioned counselor. Memorabilia from former patients fills virtually every inch of her cozy, windowless office.

Framed T-shirts from patients cover the walls, each emblazoned with adolescent attitude that ranges from “Pray for Jay” to “Drake Broke His Neck So I Could Get This T-Shirt.” Hand-painted ceiling tiles have backstories Linden knows by heart: “Good-bye Blue Sky” was painted by “a 13-year-old saying goodbye to life as she knew it”; “Fry Queen” was a girl who “ran a French fry machine at Wendy’s in her small town. She was so proud of her job before she got hurt.”

One patient made Linden a bracelet made of catheters. It hangs from a wall.

“I thought it was the funniest thing,” says Will Bucher, who sustained a spinal cord injury from a motorcycle accident in North Carolina when he was 17. “It showed you could talk about anything in there. I mean really emotional stuff. You could vent about it with her.”

That’s Linden’s goal.

“I give them a space where they can say whatever they want,” she says. “If a kid is really struggling, feeling depressed or has anxiety and is expending all their energy on just keeping it together, that’s less energy they can expend on what they have to do physically.”

Linden often meets with patients outside the office. They go for walks, talk over lunch, meet informally in the hall.

“Sometimes it’s like their whole fear is, ‘What is everybody back home going to think?’” she says. “And there’s a point where they acknowledge that they’re all thinking about the same stuff.”

“Stuff” for many teens revolves around things like dating, parties, bladder and bowel control when they’re out with friends. Classes and training are available that cover topics such as stigma management, drug and alcohol awareness and sexuality.

“I went through a lot of depressed states,” says Austin Mackenzie “Mack” Johnson, from Greenville, South Carolina. He fell from a third-floor balcony at 19, sustaining an incomplete T-12 spinal cord injury, and did his rehabilitation at Shepherd. “You go back to your room, sitting there alone, seeing your friends on Snapchat doing things and think, ‘I’ll never be a part of this.’

“In your thoughts is one of the scariest places you can be after a traumatic injury,” adds Mack, now an accounting major at Auburn University where he plays on the wheelchair basketball team. “But people at Shepherd Center have been there.”

Will, who graduated with his high school class in the spring of 2018 and will attend the University of North Carolina, agrees.

“We knew the more personal stuff and felt comfortable sharing,” he says. “Nobody understood what was going on like we did with each other. It was nice having kids your age to lean on. I still talk to them today.”

Fostering those kinds of bonds is a goal of the adolescent rehabilitation program team.

Kids are essentially good and compassionate,” Linden says. “The turning point is when kids can look outside themselves and help someone else.”

SIDEBAR: PROJECT ROLLWAY BOOSTS SPIRITS WHILE SUPPORTING ADOLESCENT PROGRAM

A Huge Second Family

Evan Elrod’s first day at Shepherd Center was miserable. The 17-year-old from Dalton, Georgia, recalls lying in bed wishing he were anywhere else after he transferred in from Erlanger Hospital, in Chattanooga, with an incomplete T-10 spinal cord injury, the result of a shotgun accident.

“I didn’t want to talk, eat, drink or anything,” says Evan, who wouldn’t even get in a wheelchair. “I didn’t think I’d see other kids my age, I thought that’d I’d feel out of place.”

Then Daylan Carver rolled in. He introduced himself with a taffy-pull drawl as “Daaaylaaan.” The first thing the Robbinsville, North Carolina, 18-year-old did was pop a wheelie. Evan… smiled.

Daylan recounted his own story – a dirt bike accident and a T-3 spinal cord injury and C-1 and C-2 fractures. Then Daylan invited Evan to his room for doughnuts. Evan slipped into his wheelchair and rolled off.

“It made me feel like it wasn’t going to be so bad,” Evan says.

Evan’s mother teared up as she watched.

“I got chills,” Krista King says. “As a parent, it made me feel like we weren’t in here by ourselves. To see someone else your own age dealing with life the same way that you’re having to makes a big difference. He had a buddy now who gets it.”

A couple weeks later, both Evan and Daylan were with half a dozen other young patients atop Stone Mountain, the 1,686-foot high natural rock dome outside Atlanta. It was Fun Friday.

Accompanied by their therapists and a nurse, they rode a cable car to the summit, where a caravan of them looked out into a vast, clear-sky distance that was filled with whirling hawks, forested golf courses and Atlanta’s spreading skyline. Some couldn’t believe they’d done it.

Earlier, at the base, Daylan had leaned back in his chair, only to flip completely over. Therapists and the nurse rushed to help, but he was fine.

“Good thing I didn’t do that at the top,” he grinned later. Everyone laughed and retold the story over and over on the bus ride back.

“Being at Shepherd has brought me out of my shell,” says Ellie Wilson, 14, from Douglasville, Georgia. She has paralysis from the waist down that is caused by transverse myelitis, a neurological disorder that effects nerve cell fibers in the spinal cord. “Kids at my school couldn’t understand what happened to me, but most people here have some crazy story about what happened to them. They’re not judgmental. They’re supportive and open.

“They made me a better person,” Ellie adds, nodding at the other adolescent patients. “It’s been like a huge family – a huge second family.”

For more information, please visit Shepherd.org/AdolescentBrainInjury and Shepherd.org/AdolescentSCI

SIDEBAR: PROJECT ROLLWAY BOOSTS SPIRITS WHILE SUPPORTING ADOLESCENT PROGRAM

Just last year, Sophia Williams watched the Project Rollway fashion show from a power wheelchair on the track that overlooked a transformed Livingston Gym. Sophia was a high school junior from Niceville, Florida, who’d been in a car accident, sustaining both spinal cord and brain injuries. Amid flashing lights and thumping music, she saw former patients from the adolescent brain injury and spinal cord injury rehabilitation programs smile and ham it up as they made their way down the runway to thunder-ous applause. With her mother beside her, Sophia vowed one day to do the same thing.

“Last year I watched it with a trach in my neck while I was dependent on my wheelchair,” Sophia said backstage before walking out on her own for this year’s sold-out event. “I came back this year because I wanted to show everyone how far I’d come. I start college in two months. I knew I was going to be here.”

Project Rollway, an annual event hosted every June by the adolescent rehabilitation team, is emceed with heart and humor by Cheryl Linden, LPC, OT, adolescent rehabilitation program counselor. The event is at once reunion, celebration of milestones and affirmation of all the hard work put in by patients and staff. Proceeds help support fun outings and special events for Shepherd Center’s youngest patients, as well as programs that keep patients’ education on track and ensure a smooth transition back to their communities.

“A lot of inpatients come to watch, and it inspires them and gives them hope,” says Shanna Thorpe, CTRS, a recreational therapist. “They see kids who’ve graduated high school, who are going to college, and think, ‘Wow, look how happy these kids are.’”

Twenty-five former and current patients, as well as 10 staff members, were models this year. Yet even amid the night’s glitzy trappings, which included fashions from national and local retailers, including Patagonia, Mint Julep, Elk Head, Banana Republic and The London Trading Company, the kids remain the stars.

“It allows the spotlight to be put on them,” says Ashley Kim, MPC, ATC, a physical therapist and co-chair of this year’s Project Rollway.

For the staff, seeing former patients is its own reward.

“The therapists cry when they see their kids’ progress,” Kim says. “We saw them at their lowest point, and now we get to see them shine.”

Katie Kimball, MS-OT, OTR/L, occupational therapist and this year’s co-chair, adds, “It takes a whole hospital. That embodies the mantra of what Shepherd Center is about – it’s about family."

For the patients turned models, returning for Project Rollway was their way, as one patient put it, of “paying it forward.”

“Shepherd Center helped me so much, anything I can do to help them, I’ll do it,” says Thomas Guest, 19, from Madison, Mississippi. The personable Mississippi State University student was paralyzed last year in an all-terrain vehicle accident. For Project Rollway, he wore an outfit from Fish Hippie.

Thomas smiled.

“I woulda worn whatever they wanted me to.”

Written by Drew Jubera
Photos courtesy Abbie Williamson and Will Bucher
Photos of Mack Johnson and from Stone Mountain outing by Louie Favorite

 

About Shepherd Center

Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 900 inpatients, 575 day program patients and more than 7,100 outpatients each year.