Helping Kids Cope with the Psychosocial Aspects of Disability
SEEING THE FOREST THROUGH THE TREES
When it comes to assessing the social challenges that children with mobility disabilities face and the emotional scars they often acquire as they grow up, pediatric healthcare providers naturally have a different, closer to the "trees," perspective than the rest of the world, but they may still, perhaps, be overwhelmed by the diversity and complexity of the "forest" of issues these children face.
Having a clearer understanding of a child's internal struggles to fit in with his or her able-bodied peers, achieve social acceptance, and establish friendships can help orthotists and prosthetists to provide more holistic care to their pediatric patients-beyond the mechanics of the orthoses and prostheses they fit.
Peer acceptance is a major obstacle. J. A. "Tony" Herring, MD, chief of staff emeritus at Texas Scottish Rite Hospital for Children (TSRHC), Dallas, notes that although children from middle school age and up appear to be more sensitive to critical attention from their peers, children start having identity and self-awareness issues from the time they start school.
Jennifer H. Ehrentraut, PhD, clinical staff psychologist in the Department of Psychology at St. Jude Children's Research Hospital, Memphis, Tennessee, notes that although the literature hasn't addressed age group differences, "we would expect that adolescents might be very concerned about how looking different might affect the way that they would fit in."
Gender may also play a role in sensitivity to peer acceptance. Kendra Calhoun, president and chief executive officer of the Amputee Coalition, points to research by the Toronto, Canada-based Centre for Addiction and Mental Health that suggests females may be particularly vulnerable to bullying from other females, even as rates of male bullying decline.
Calhoun draws specific attention to a passage from the article, "The Bullying Gender Gap: Girls More Likely to Be Targets," by Carly Weeks: "It's a troubling finding that highlights where parents, educators, and policymakers may need to focus their efforts to counter the effects of school-related bullying. This is a real concern for us. Bullying and teasing have become critical issues nationwide (Bowman, 2001). One out of four kids is bullied and up to 43 percent of students have been bullied while online." (Editor's note: D. H. Bowman's article "At School, A Cruel Culture" was published in the March 21, 2001, online issue of Education Week. Weeks' article was published online in The Globe and Mail on August 1, 2012.)
Calhoun says, "This is particularly true as it applies to youth with disabilities. The  Paddy Rossbach Youth Camp...will include a special program addressing bullying."
Ehrentraut agrees that kids can sometimes be cruel to other kids. "Bullying still happens," she says. "It's very prevalent in the schools and is highlighted in the media. It continues to be discussed within the professional literature; it is still very much a problem.
"Those who fit children for braces and prostheses could potentially be helpful by asking their patients if having a professional help them create a presentation to present to schoolmates, classmates, and peers might be helpful for them, or if having a practitioner visit their school to talk to their classmates or their peers with or without the patient is perceived as something that would make it better or worse for them at school," she suggests.
Perceptions Impact Coping Ability
Janet Marshall, CPO, LPO, pediatric orthotic and prosthetic services specialist at Shriners Hospitals for Children®-Tampa, Florida, and past president of the Association of Children's Prosthetic-Orthotic Clinics (ACPOC), stresses the importance of parental influence on a child's attitude toward disability. "Some parents are just not willing to believe that their child needs to wear a brace; therefore, they want us to make it as unobtrusive as possible. They then cover it with a sock or conceal it under long pants. The child...learns to share the parent's need to hide, and deny the existence of any kind of problem."
Some sources note that parents can be indifferent and may not enforce compliance with brace-wearing-asking how long it will be until the child can stop wearing the brace-and some parents fail to show up for appointments, all of which can impact the child's attitude and self-image.
Sometimes parents have the perception that utilizing a wheelchair makes the child with spina bifida or neuromotor impairment seem "more handicapped," observes Debra Hanna, MD, associate professor of developmental pediatrics at the Boling Center for Developmental Disabilities, University of Tennessee Health Sciences Center, Memphis.
"Some children with disabilities who have been fully ambulatory as young children may become more dependent on mobility aids such as wheelchairs as they get bigger and taller...," she says. "For these children, the 'energy cost' of walking with a neuromotor impairment becomes too great once they are bigger and the distances they want to go increase. They fatigue before they get where they want to go [and] may not be able to keep up with friends or participate in sports. A wheelchair can be seen as giving up on walking, or parents may be concerned their child will become too dependent on the wheelchair.
"Because of these misperceptions, a parent may want to keep the child in a stroller, even when he or she is beyond the age a child would usually use one," she continues. "We try to help parents understand that having a wheelchair, once walking long distances becomes too difficult, can improve the child's independence, maturity, and even self-confidence. He or she will be seen by peers as just a kid who uses a wheelchair, while a child in a stroller may be perceived as being much younger."
In this and other ways, family support is critical to the child's self-esteem, Marshall says. "It's hard to develop self-esteem if it's not supported by the family. We can give it to them when they're here, but we can't go home with them."
Cues from parents, grandparents, or caregiving adults have a major impact on the child's self-image and expectations, agrees Sherri Samuels, who founded the Memphis amputee support group Out on a Limb.
"We've had experience with grandparents who were taking care of a child because the parents could not handle the situation-the grandmother was really devastated, so the child learned quickly to press those buttons. When he wanted something that he wasn't getting, he would complain, 'Oh, poor me-I'll never be normal, I can't have this and I can't have that,' and she'd give in to him," she says.
The child's own attitudes and perceptions affect compliance as well. Harry Lawall III, CPO, points out that six out of every seven scoliosis braces he fits are worn by girls, who tend to be more concerned about how they look. "Starting at about age eight, that becomes a concern for them; the older they get, the harder it is to get them to wear this brace."
"Growing up with an amputation can be challenging, from dealing with staring, teasing, and bullying, to the frustrations of not being able to take part in an activity or keep up with peers," Calhoun notes. "Unfortunately, these emotions are often internalized and have a lasting impact on how these young people will see themselves throughout their lives."
"Research into the psychosocial functioning of children who have had prostheses fitted has found that they are not lacking in happiness or the feeling of emotional acceptance," Ehrentraut says, "but I do know from my clinical experience that there are some kids who just cope better in general and some kids who have a more difficult time adjusting. There are individual differences that should be considered when planning what types of support are needed or might be beneficial; however, sometimes you aren't able to accurately predict how well a child will function as an amputee. Providing additional support, if support is desired by the patient and family, is never a bad idea."
Ehrentraut describes one extroverted athlete whose participation in contact sports was not recommended following leg-salvage surgery-a difficult situation for the patient to accept. "The patient is now doing great," she says, "but it's been a long process."
Some children adjust so well to their disability that they serve as role models for others. Marshall describes a young man who became a quadrilateral amputee as the result of necrotizing fasciitis-the flesh-eating disease-and whose positive attitude and accomplishments inspired members of his church.
Patience Beard, the University of Arkansas, Fayetteville, cheerleader who gained national fame as the girl with the zebra prosthesis, has been a transtibial amputee since she was seven months old, and her disability has not demonstrably limited her functionally or socially. (Editor's note: Patience's story has been featured on the CBS Sports, Yahoo! Sports, The Huffington Post, and USA Today websites, among others.) Her father, Jim Beard, remembers when her older brothers took Patience to school for show and tell when she was just two years old, so she learned early how to field questions about her prosthesis.
"She started taking gymnastics when she was four years old," Beard says. "She did everything she wanted to do, and she's always been goal-oriented. She's a really good athlete and has lots of friends; she was homecoming queen in high school. She is just a wonderful person with a great attitude who is not afraid to try anything.
"My advice to other parents is don't try to hold them back," Beard concludes. "We supported her and told her she could accomplish anything she wanted to-and she has."
Herring, who is Patience's physician, calls her a favorite patient. "Often you'll see these individuals with disabilities accomplish more than they normally would have because they want to demonstrate that they can do and accomplish everything. I think this has been true even back in the polio era when a lot of the polio patients overcompensated and over-accomplished," Herring reflects.
The O&P Practitioner's Role
There are a variety of things O&P professionals can do to help support the psychosocial well-being of their pediatric patients. Many of the experts interviewed for this article agree that helping to educate peers, whether through role-playing games, school visits and presentations, or special programs, can be a great way for O&P care providers to get involved.
One such program is Shriners' Care Bear Clinic, which provides children with stuffed animals that are "treated" during special presentations at several departments within the hospital to explain what is going on with kids with disabilities-such as why they're in a wheelchair or why they're wearing a brace or a prosthesis.
"Whenever kids are cruel," Marshall explains, "it's because they have no clue, so this is their reaction. Once they're informed, they're interested. They accept the device, and they accept the child."
Our experts agree that letting an able-bodied child experience the world in a manner roughly equivalent to that of a child with a disability enables them to share and bond. Marshall describes a public playground in Lakeland, Florida, built for wheelchairs. It is equipped with wheelchairs for able-bodied children to use and learn what it is like to maneuver and rely on a wheelchair.
Making a Connection
"Kids are great!" says Matt Albuquerque, CPO, president of Next Step Orthotics & Prothetics, headquartered in Manchester, New Hampshire. "They're the most honest people in the world. Disabled kids are no different, and the more effort that we make to try to...understand what's important to them individually, the more successful we're going to be in making them happy.
"I'm not a psychologist, but when you've got a young vulnerable child in front of you, it's pretty easy to see that if you take the time and ask the right questions, you're going to get the information that you need, and then it's just a matter of turning it into action."
Part of establishing relationships and helping patients feel comfortable, Albuquerque says, begins with a welcoming...waiting room that is designed specifically with kids in mind.
"We strive to create an environment of being 'special' rather than 'different,'" he says. "We're going to make something especially for them that nobody else in the world has. It's semantics, in a way, but...the words that kids with disabilities start hearing in terms of how we reference them are very important."
Albuquerque says that he discovers what really matters to his young patients simply by asking them. He has found that part of what matters is letting kids choose what their prosthesis or orthosis looks like. Letting them select from a variety of cool colors, decals, and laminated designs is part of creating an individual look.
Never underestimate the power of giving kids that choice, Hanna agrees. "Our kids can get their DAFOs in any color and design, and they often get quite involved with making their selection. One little boy in spina bifida clinic needed to use one cane for his asymmetric neurologic control, to stabilize his gait. He just resisted and resisted until I borrowed one from a little girl, and it happened to be hot pink. He immediately said, 'Wow! Can I have a red one?' We didn't have any further trouble-he just hadn't wanted to [use] Grandma's cane!"
"Communication is paramount," Samuels says. "Allowing the child to communicate their concerns and issues, establishing dialogue between the child and the healthcare provider and the parents-I think that is huge. Respect the child as an individual and let them know what's going to happen to them and what the benefits are in a way they can understand."
It's also important to pay attention to the way young patients talk about their interactions with friends, Lawall says. "Ask them about the way they play and different activities they might want to try-and be prepared to help them with adaptive sports equipment. Keep your energy up and maintain optimism. The kids feed off your energy and attitude, and they'll be better able to adapt."
Sometimes kids just need permission to ask a question that they fear a healthcare professional might perceive as silly or stupid, Ehrentraut says. "Encourage them by saying, 'There's no question that's too silly or too stupid to ask-please-we want to answer any and all questions you might have.'"
Marshall notes that O&P practitioners become like counselors, planned or not, and wonders if the psychology training they receive in their curricula is as comprehensive as it could be-"because you need it; you definitely need it!"
Calhoun concurs that practitioners can improve their ability to assess and address their patients' well-being. "We have taken this seriously and are leading a research effort with Johns Hopkins University [Laurel, Maryland] to provide training to prosthetists and develop tools that they can use in their practice."
Establishing Peer Networks
Kids learn better, faster, and more confidently from others like themselves, our experts say. Give them the chance to network with other children with similar disabilities, or to meet and play with them, and their attitudes and chances for successfully adapting to their orthotic or prosthetic devices improve dramatically.
While it's not always possible for O&P business owners to develop peer networking opportunities for their pediatric patients, there are plenty of established events they can tell patients and their families about. The Amputee Coalition's Paddy Rossbach Youth Camp is a prime example, bringing 100 kids together each year free of charge, including travel costs.
"Survey data and anecdotal stories from parents show that our youth camp experience changes lives-the kids' and the parents'," Calhoun says. "Mobility is just one area where we have seen an impact, from campers arriving not using their prosthetic legs and going home walking on their legs to kids learning that they can join in on sports and recreational activities like soccer, rock climbing, and zip lines. We consciously develop our camp program to include challenging and new experiences that help build self-confidence and self-esteem.
"Each year, the Amputee Coalition Paddy Rossbach Youth Camp experience includes a variety of activities, including peer discussion groups facilitated by older campers and amputee mentors that help our young campers learn that they are not alone, how to cope with difficult social challenges, and how to manage teenage social relationships," she continues. "We have heard from parents that our camp experience has been positively reflected in their child's level of confidence and even in their grades at school."
In the same vein, Shriners Hospitals for Children-Tampa sponsors an annual No Limits Sports Day, where children with disabilities are exposed to a variety of sports they can try, with or without adaptive equipment.
Likewise, each year, TSRHC takes 14 kids on a week-long ski trip to Colorado-something it has done for the last 30 years. These events give kids the opportunity to develop a new skill and get to know other kids with disabilities, says Herring, who adds that the National Sports Center for the Disabled (NSCD) has a multitude of therapeutic sports and recreation programs.
"We want the kids to think of themselves as totally normal with one particular issue," he notes. "Sports outlets are very good for a person's self-esteem and psyche, not to mention the overall health benefits."
Albuquerque adds that sports are an ideal solution for drawing out kids who are very shy. He recommends Camp No Limits, an organization that has camps all over the country specifically for kids with limb loss; Northeast Passage, an organization that provides recreational activities for all disabled people through the University of New Hampshire, Durham; and AmpSurf, which introduces amputees to the surfing experience.
"There are so many kids who are doing so many wonderful things, and some just being 'normal,' [and] interacting with their friends just like everybody else," Samuels reflects. "They're playing soccer, they're playing violin, they're doing homework, they're doing well in school, they're going to camp. They're doing what kids should be doing. That, to me, is the biggest success story."
Judith Philipps Otto is a freelance writer who has assisted with marketing and public relations for various clients in the O&P profession. She has been a newspaper writer and editor and has won national and international awards as a broadcast writer-producer.