November 2016

Therapeutic play plus O&P care is a win-win for kids

Taking part in a variety of TR activities helps Mimi build muscle, mobility, and relationships. (Photos courtesy of Ashley Miranda.)

Taking part in a variety of TR activities helps Mimi build muscle, mobility, and relationships. (Photos courtesy of Ashley Miranda.)

O&P practitioners are working with recreational therapists to open doors to leisure activities for kids with lower extremity issues and other disabilities. By expanding their playtime experiences and skills, kids can boost their physical activity, mobility, self-confidence, and social connections.

By Brigid Elsken Galloway

Mimi Miranda grins as she is helped into a bright red kayak. Nearby, Ashley Miranda watches with pride as her daughter grips the oar and begins to glide across the pool. The 10-year-old typically uses a device to communicate, but it’s easy to understand that Mimi is thrilled with her accomplishment. She doesn’t think of it as work, or therapy, but it is. Although she’s moving toward the goal of building muscle and improving mobility, to Mimi, she’s just doing what kids do best: having fun.

For children with lower extremity issues like Mimi, who was born with bilateral schizencephaly resulting in quadriplegic cerebral palsy (CP) and has dystonia and leg length discrepancy, the ability to participate in adaptive sports and other recreational activities is not just another play date. The activity provides them with a way to strengthen muscles, socialize with peers, and challenge themselves to reach beyond their mobility challenges.

Many pediatric O&P patients are interested activities that they and their parents aren’t sure how to make possible; recreational therapists can help find solutions that help children feel more connected to their communities and become more physically active, said Michelle Hall, MS, CPO, a prosthetist-orthotist in the Department of Assistive Technology at Gillette Lifetime Specialty Healthcare in St. Paul, MN.

She and recreational therapist Kaitlin Lewis, CTRS, presented a talk last March on collaborative opportunities for O&P practitioners and recreational therapists at the American Academy of Orthotists and Prosthetists Annual Meeting and Scientific Symposium in Orlando, FL.

By focusing on the context in which a mobility device will be used, recreational therapists may help push patient abilities beyond orthotists’ considerations.

Therapeutic recreation (TR, also known as recreational therapy) helps challenge the patient to expand their mobility in ways that O&P specialists might not consider, said Hall. “[Often] when we think recreation, we think sports, but it’s much more than that,” she said, noting recreational therapists connect patients with community resources for all types of activities, including visual arts, dance, and hobbies.

Although they live an hour away in the suburbs, the Mirandas frequently drive to Washington, DC, for Health Services for Children (HSC) Kids in Action programs. Ashley Miranda believes it’s well worth the commute. “Mimi gets the opportunity to be part of a team where she’s involved, and everyone’s skill level was around the same range,” Miranda said. “It’s helped her self-esteem, because now she knows she can do this activity. At school not everything can be adapted for one child. Being in a setting where things are adapted and she can take part helps with her confidence. When you’re at a Kids in Action event, everyone is trying their best and no one stares at you. Mimi can be herself.”

Holistic approach

This child gets water- based TR to strengthen his lower extremities for greater mobility on land. (Photo courtesy of Robyn Winston Cohen, CTRS.)

This child gets water-based TR to strengthen his lower extremities for greater mobility on land. (Photo courtesy of Robyn Winston Cohen, CTRS.)

Eight years ago, Robyn Winston Cohen, CTRS, founded Kids in Action after families expressed frustration with the lack of opportunities for kids with disabilities to play sports and participate in other recreational activities. Cohen funded the first adaptive T-ball and soccer sessions out of her own pocket. The kids—and their parents—loved it. Soon the program was formalized through HSC and sponsors came on board.

Today, Kids in Action provides a variety of adaptive sports and social activities for children and young adults with disabilities four years and older and their siblings. The events, supervised by recreational therapists, physical therapists, (PTs), occupational therapists (OTs), speech therapists, and assistive technology practitioners, aim to increase physical abilities, including gait, stamina, strength, and balance. The programs provide more than exercise, however.

“If you ask any of my kids if they are doing any sort of therapy they would say, ‘No,’” Cohen said. “If you were to ask a patient in PT, they might say they are having fun, but they know they’re working on a therapeutic goal. With therapeutic recreation they’re just having fun, enjoying themselves. We focus on similar goals to those of physical or occupational therapy, but in a fun way. A kid’s job is to have fun and play—no matter what their disability is.”

Last year, more than 200 children participated in the Kids in Action programs, which include adaptive sports such as tennis, archery, lacrosse, basketball, kayaking, and bocce ball, as well as other recreational activities, such as Teen Night with dancing, cooking, karaoke, and movies. For Cohen, the goals of therapeutic recreation are far reaching.

“I’m focusing on the big picture, which includes socialization, self-esteem, fine motor skills, and mobility,” Cohen said. “Yes, we’re playing basketball, but I’m also thinking about how else will it benefit the child when they get home. What life skills are they learning? I look at their entire picture to see how they will function in all areas of their lives. It is more than simply adapting action sports; it’s about being a part of a community, creating opportunity, and opening the doors of possibility for the future.”

“You have to treat the whole child,” echoed Dana Dempsey, MS, CTRS. “We want to make sure kids with amputations or other lower extremity issues get involved in meaningful play, recreation, and leisure,” she said. “Therapeutic recreation helps give children back their childhoods.”

This child gets into a walker and orthoses to try new sports, which recently included lacrosse. (Photo courtesy of Robyn Winston Cohen, CTRS.)

This child gets into a walker and orthoses to try new sports, which recently included lacrosse. (Photo courtesy of Robyn Winston Cohen, CTRS.)

As director of therapeutic recreation at Texas Scottish Rite Hospital for Children in Dallas, Dempsey develops and oversees programs that serve 400 to 500 children a year from across the state and around the country.

Scottish Rite’s activities aim to improve balance, coordination, and stamina. But they also serve an important role in helping to provide an environment for socialization for children with ambulatory issues. In addition, recreational therapists serve as a touchstone for TR resources and information, educating parents about programs that may benefit their child after they leave the hospital or clinic.

“In therapeutic recreation at Scottish Rite, we focus on the social model approach,” Dempsey said. “While the individual has a medical condition that negatively impacts his or her functioning, large barriers to participation lie in the environment that doesn’t accommodate the individual, or the attitudes or beliefs about the individual with the disabilities.”

A two-way street

To break down barriers and maximize a child’s participation, recreational therapists may work with orthotists and prosthetists after a child expresses interest in participating in specific sport or activity and parents need to locate adaptive programs. Likewise, the recreational therapist may contact an O&P specialist when a patient experiences difficulty participating in an activity with his or her existing brace or prosthesis.

“For example, if a child is an amputee and wants to ride a bike, we might contact his prosthetist to see what type of foot components to use for the child’s prosthetic so it can clip into the bike pedal,” said Dempsey. “We can also help the family connect with recreational activities once the child has a brace or prosthetic device, so it’s a matter of using recreational activities to improve functional skills.”

Likewise, if a child expresses an interest in participating in a particular activity, an orthotist or prosthetist may refer patients to TR to help them locate adaptive sports activities that will be appropriate for the patient and help accomplish his or her goals. Together, TR and O&P practitioners often find creative solutions that allow their young patients to overcome challenges.

“As clinicians, we try to encourage our patients and figure out ways to help our patients meet their goals, whether that’s being active in community or at camps or making a device that’s adaptive to their needs,” said Karl Barner, CPO, LPO, NCOPE (National Commission on Orthotic and Prosthetic Education) residency director at Children’s Healthcare of Atlanta.

Beyond fitting them for lower extremity devices, Barner often takes a personal interest in his young patients by attending their sports events and encouraging them to reach their adaptive sports goals. He said watching his patients perform activities in the sports environment helps him better understand their reality.

“Many clinicians become involved in TR camps where we can see how the kids are involved in activities,” Barner said. “That allows us to come up with different designs. If a child is struggling doing an activity, we might have to adapt their braces or orthoses for a better fit, or find a company that makes a device that specifically meets the need. For example, we source a company who makes shoes and a prosthetic foot designed specifically for rock wall climbing.”

Team work

AFOs and a walker allow this child to cover long distances on the playground and in the community. (Photo courtesy of Robyn Winston Cohen, CTRS.)

AFOs and a walker allow this child to cover long distances on the playground and in the community. (Photo courtesy of Robyn Winston Cohen, CTRS.)

A growing number of O&P clinicians are connecting the dots between the practical application of the devices they fit with how their young patients participate in typical leisure activities. Some healthcare systems are encouraging the team approach between O&P and TR.

At Gillette Lifetime Specialty Healthcare Kaitlin Lewis and Michelle Hall find practicing under the same roof—literally right down the hall from one another—has great advantages for their patients. “Our scope of practice overlaps with therapeutic recreation,” Hall said. “Before we had recreational therapists, if a patient came to us wanting to go horseback riding, we would have to search for outlets in the community. Now the recreational therapist keeps up with those resources and fields those questions.”

Because they are focused on the context in which a mobility device will be used, the recreational therapist may also help push the limits of the patient’s abilities beyond the orthotist’s considerations. “We look for red flags, such as if the patient says, ‘The device fits great but I’m struggling when I play soccer in it,’” Lewis explained. “If it’s not a fit issue, we would look at their technique. The patient might just need more practice using the device. Or there also may be stigma using the new device. If a patient isn’t compliant, often a recreational therapist can dig deeper to find out what’s going on and come up with ideas for how the patient might be able to reduce the stigma.”

Lewis and Hall appreciate the ability to work together in close collaboration, which allows both prosthetist-orthotist and recreational therapist to meet the needs of the patient on a practical level. “Now I think about things differently,” Hall said. “I ask questions about what the patient likes to do in their free time and if they’re having any difficulties. It makes me more aware of the global needs of the patient and helps me address those needs. It also helps the patient advocate for themselves.”

Hall, who also conducts research and serves as Gillette’s prosthetics residency director, developed this list of questions to help her colleagues assess their patients with an eye toward recreational needs. These questions may include:

  • What do you do in your spare time?
  • Are there things you can’t do that you’d like to do?
  • Are you having difficulties with those activities?
  • Is it some activity we can help you accomplish by making adjustments?

Measuring success: The fun factor

Seeing other kids wearing braces in RT activities made Mimi more willing to wear hers. (Photo courtesy of Ashley Miranda.)

Seeing other kids wearing braces in RT activities made Mimi more willing to wear hers. (Photo courtesy of Ashley Miranda.)

Although it’s part of many pediatric patients’ regimens, measuring success from therapeutic recreation can be complicated. “You can’t just measure muscle strength and see if there’s improvement,” Dempsey said. “But we have other tools.”

Dempsey cites a postparticipation survey among parents of kids who participate in Scottish Rite’s Learn to Golf program. Approximately 70% of the kids who participated in the program have continued playing golf. Parents reported their children’s coordination improved and they were more confident and more willing to try new activities (unpublished data).

“Others report their child shows physical improvement or improved social skills, or better concentration,” Demsey said. “Plus, there’s the added benefit in that they feel more connected to something bigger than themselves because they are part of a team.”

At Kids in Action, Robyn Cohen and colleagues measured outcomes of adaptive swimming participants through before and after surveys that tracked the child’s water safety awareness and swimming skills. The recreational therapists tracked the progress of eight participants with CP and spina bifida in three 10-week courses. Overall, participants showed an average of 31% improvement in swimming skill scores and 49% improvement in water safety awareness (unpublished data). Cohen attributes the success of TR to two important factors. “If you want a kid to succeed they have to have buy-in and have fun,” said Cohen.

Ultimately, the TR approach may not only help young patients have more fun, but also provide them with motivation for compliance with the use of their orthosis or prosthesis. It also allows kids to have social interaction with their peers who have mobility challenges. For Mimi Miranda, who attends a mainstream school, the opportunity to interact with children with mobility disabilities similar to her own inspires confidence.

“It’s helped her become a stronger person,” said her mother. “For example, Mimi used to hate wearing her braces, but when she saw other kids wearing them at Kids in Action, she changed her mind. Knowing that other children wear braces—not just her—is
significant. When you face limitations every day, it’s important to be part of a group where accommodations aren’t even an issue. When Mimi is at Kids in Action, she doesn’t have to think about it, she just has fun.”

Brigid Galloway is a freelance writer in Birmingham, AL.

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