For many teenagers, life is not always a walk in the park. Hormonal changes, mood swings, and peer pressure present difficulties as young people try to decide just who they are and where they want to go in their lives. Sensitivity about their appearance and "fitting in" with their group can be very important. Add to this mix the absence of a limb or limbs, and the normal challenges young people face is heightened.
"Tenagers don't want to be different; they want to look the same, dress the same, and do the same things as all their friends," noted Paddy Rossbach, RN, president and CEO of the Amputee Coalition of America (ACA). "Being without a limb and using a prosthesis or other assistive device does not fit that image."
Speaking at the 2005 Annual Meeting and Scientific Symposium of the American Academy of Orthotists and Prosthetists (the Academy) in Orlando, Florida, Rossbach noted that, when an adult amputee visits a teenager undergoing amputation, the most common question the young person asks is, "Are you married?"
"Even today this seems to be their gauge of whether you, and therefore they, are 'normal,'" Rossbach said. "Answering, 'No, but I date a lot,' doesn't seem to be enough!"
Rossbach cited the inspiring case of a young man who underwent a bilateral Symes amputation as an infant, due to fibular hemimelia. He hated his artificial feet and legs, but as he got older, it was discovered that he was a natural athlete who excelled at ice and roller hockey. He was even named MVP of his able-bodied team!
"Suddenly he knew he could conquer the world, and to this day this teenager wears navy blue legs decorated with the Rangers logo," Rossbach said. He's no longer called "tin man" by his peers and is admired for his athletic prowess, she added. Thus, being encouraged to develop and use their abilities helps the self-esteem and confidence of young people with limb loss. Even though this young man deals with the usual teenage concerns, his worries are no longer about his limb differences, Rossbach noted.
Insurance Coverage: An Issue
Besides the emotional issues, there are the physical difficulties of dealing with prostheses and assistive devices while still growing, Rossbach pointed out. The problem of adequate insurance coverage looms huge."Comfort is the number-one priority, whether it be the socket of a prosthesis, the seat of a wheelchair, or the type of crutch, and yet increasingly these days unrealistic lifetime or yearly caps are being placed on reimbursement, even, in some cases, elimination altogether. The result is poorly fitting or broken devices that are not only uncomfortable, but put these individuals at risk of further skeletal abnormalities," she warned.
So, how can parents, siblings, friends, teachers, and society in general help these teenagers? "As with adults, at the time of amputation, the most significant intervention is a visit from a peer--someone with an active and productive life," Rossbach said.She cited Ted Kennedy Jr., who lost a leg at the age of 12, due to cancer, in his keynote speech at an ACA conference. Kennedy described how a hospital visit from another young amputee with a prosthesis helped him. "That's all I needed to give me the personal strength to go on," she quoted Kennedy as saying.
Often teen amputees are the only ones they know in their circumstances, and they feel alone. "Consequently, when the opportunity arises for them to meet others in a camp, ski clinic, or other sports event, it is a tremendous and visible relief," Rossbach observed.
"Probably the most important thing parents can instill in their child is that it is not the hand one is dealt that is important; it is how one plays it," Rossbach said. "Life will be different, but it doesn't have to be diminished. In fact, many amputees will say that they believe they have achieved more because they have been challenged."
Helpful Strategies
How can parents help their teens who have limb loss? Rossbach gave these strategies:
- Treat this child the same way you do your other children;
- Encourage independence--trying to do everything for teens makes them feel as if they are incapable; self-esteem plummets and depression can set in;
- Encourage them to participate in activities, sports, camps, etc., with other amputees, where they will be part of the majority and can compete on a more nearly equal level, as well as with non-amputees;
- Be knowledgeable about prosthetic services and devices to ensure the best possible care;
- Teach teens to be knowledgeable and advocate for themselves;
- Know the rights of individuals with disabilities and where to turn in the event of discrimination;
- Be aware of devotees and how to recognize them, and ensure that teens know of their existence and what to do if approached inappropriately; and
- Ensure that teens are comfortable with their healthcare providers.
