I have had the opportunity of working as manager of the Area Child Amputee Center (ACAC) in Grand Rapids, Michigan, which provides services to families and children with limb differences. During the past 10 years, I have talked with many families who have children with limb differences and have learned what type of information and support is most helpful to families.
Most new parents have planned for months, awaiting the arrival of the new baby, and thinking about the future. When a child with a limb difference is born, suddenly the child’s future seems clouded and parents have many questions, such as: “Will my child be successful in school?” “Will my child be able to ride a bike and run like other children?” “Will my child have a good self image?” “Will my child have friends, grow up, get married and have children?”
These questions and concerns are normal as are feelings of sadness. It is important for families to take time to adjust and be with their new baby. This will help alleviate some of the feelings of sadness; however, this is also the time parents need to seek out information, get the support necessary to make adjustments and begin understanding what the future might hold for their child.
One mother, who came to the Center for an initial visit, told me how shocked she was when her baby was born with a missing limb. She would go to her son’s crib and check his body several times during the night, hoping that there would be an arm where there was none. It took her a while to accept that the limb loss was real and permanent. But holding, caring for and loving her son made some of her grief disappear and allowed her to take the necessary steps toward setting up his evaluation and begin planning for his future.
As soon as possible after birth a child with limb loss should be seen by a team of professionals at a child amputee center. This team should consist of a physician, such as an orthopedic surgeon or physiatrist, a pediatric nurse, physical and/or occupational therapist, social worker, psychologist, dietitian and recreational therapist. A prosthetist should be part of the team for those children who will need prosthetic devices for functional and cosmetic purposes. These professionals should have experience working with children with limb loss, and should provide parents with information on what to expect regarding medical needs, future surgeries, therapies, and use of adaptive equipment and/or prostheses.
An important role for the team at ACAC is to listen to the family’s concerns and fears, and to answer questions about growth and development. Our goal is to work closely with the family and provide input that enables the child to parallel normal growth and development.
Two questions families often ask is, “Will my child be accepted by family and friends? And how can I raise my child to have a healthy self-image?” All parents want their child to be accepted by friends, relatives, classmates and teachers. This process of acceptance begins with parents learning how to comfortably respond to questions about their child’s physical difference. This can be difficult at first. But brief answers to others is usually enough and, though it may be hard at first, in time it usually becomes easier.
Childhood experiences are the primary influences that will determine the child’s self-esteem. The parents, guardian and other family members send verbal and nonverbal messages to the child, on the basis of which feelings of self-worth are formed. If a child is told to cover up the limb difference and not talk about it to others, a negative self-image can develop. Conversely, if the family members encourage open discussions about the limb difference, and maybe even see some humor in the situation at times, the child will begin to feel accepted.
The mother of a young girl shared with me her experience of dealing with her daughter’s limb difference in a grocery store. The young girl’s lower limb prosthesis fell off while she was sitting in a shopping cart. Concerned about how her daughter might experience the stares and “wide-eyed” glances aimed at her, the mother turned what could have been a negative experience for her daughter into a positive experience. She smiled at those near her, picked up her daughter’s prosthetic leg, put it back on her, and resumed shopping. She laughs about that experience now and admits that it helped her become more open in sharing her daughter’s limb loss. She also sent a nonverbal message to her daughter that was positive.
Self-concept continues to develop in the toddler years as children explore their limits, their abilities and understand how they impact others. During these years and later, setting realistic goals is an important aspect of assisting a child in developing good self-esteem. For example, if a child is interested in pursuing specific sports or physical activities, the parents can assist the child in choosing what to do. It should be an activity or sport that the child has some natural aptitude for and interest in, and there is a good chance that the child might be able to do it well.
It may take a lot of work and time to learn to do the activity well. Special techniques or even assistive devices may be needed. Input from therapists, the prosthetist and other members of the child amputee center team can be useful to parents and child deciding which adaptive devices or techniques to use.
Because school-age children are even more aware of differences among people and experience a great deal of peer pressure, they can become preoccupied with self-evaluation. Teasing can be especially troublesome for a child with a limb difference. Dealing with teasing by peers is an issue for children 5 to 10 years of age when relationships with friends and being “one of the gang” is important. The ACAC team recommends that parents explain to their child that everyone is different in some way and point out that most children get teased about something. It may be helpful to share some of the parent’s own experiences. Families can role-play on how to respond to teasing. It is also a good idea for parents to support the child’s attempt to handle the problem himself. It is best if the child has the opportunity to feel competent by handling these types of situations on his own.
Peer acceptance is especially an issue in early adolescence. Often there is no other child in the school with a limb difference; in fact, a child may never have met another child with a limb difference. Families and children have reported that meeting other families with children with limb differences is helpful.
Each year ACAC has a family picnic with the intention of providing an opportunity for families and children to meet one another and interact in a nonmedical setting. This is held in late August before school begins for the year. One child told his family that going to the picnic and seeing other children with limb differences helps him feel better about starting a new year in school. He realized that he was not the only child who looked “different” and that others were facing similar situations with fears about meeting new classmates and teachers. It is also helpful for a child to have one or two very close friends who will stand by him, especially in difficult situations. As children develop meaningful relationships with peers, self-esteem rises.
Again, a team of professionals who work with families with children with limb differences can provide support and information based on their experiences and interactions with these families. Although families with children with limb differences may have some rough roads to travel, and some serious issues to anticipate, these children can grow and develop as other children.
Everyone has strengths and weaknesses, but acceptance of one’s self comes from early experiences of care and love from one’s family and support from the community and health care team.
About the Authors
Char Greer, MPH, is manager of the Area Child Amputee Center in Grand Rapids, Michigan, an outpatient center treating children with limb differences.
