An Ongoing Seminar for Parents of Amputee Children
RICHARD A. SULLIVAN, M.D. FELICE CELIKYOL, O.T.R.
Three years ago, in June of 1973, the first seminar for parents of amputee children was held at the Kessler Institute for Rehabilitation. Saturday morning was chosen to allow the greatest amount of parental participation. The seminar idea developed as a result of an increasing parental awareness of the need to join together under staff supervision to discuss their mutual problems. A similar awareness of this need was felt by the staff.
When the senior author became the medical director of the center, he personally discontinued the former amputee-seminar format in which the children were presented before a large auditorium filled with medical, paramedical, and parental observers. He considered this full exposure of these emotionally fragile amputee children to be psychologically unsound. A system of weekly amputee clinics was instituted to provide comprehensive medical and prosthetic services, but these clinics did not provide any forum for parental interaction.
We have long been aware and often have stated in publications1 that the secret of a successful child amputee's use and acceptance of the prosthesis depended for the most part on the acceptance of the parent. Such being the case, we were more than acutely aware of the seriousness of this shortcoming and its negative effect on the successful outcome of our program. The fact that many of the parents also noted this void in service finally stimulated us to action.
The Initial Seminar
The first decision to be made was the selection of a format. A general meeting of the involved department heads was held to discuss this problem. The physician, occupational therapist, prosthetist. social worker, and psychologist, all of whom would be involved in the seminars as group moderators, met and the first seminar was planned. It was decided to build the meeting around a film presentation that would be appropriate and of general interest to the parents. One depicting amputee skiing was obtained. This was to be followed by having the parents disperse into several small discussion groups, each with one or two members of the staff as moderators.
The outcome of the first meeting reaffirmed our feelings that there was indeed a need for such discussions. Experiences were exchanged freely in each of the four discussion groups (Figure 1 ); the parents shared their feelings of initial shock at the birth of a child with an amputation, many describing their feelings of isolation. They discussed the possibility of forming a visiting parents' group to visit new parents and offer support and reassurance; they discussed problems encountered by their children with peers, within the school system, and within the community. They also felt that meetings with the children should be considered. The parents made it clear that they wanted these seminars to continue! This first seminar was attended by parents who had children with congenital amputations of one or all extremities as well as those with acquired single or multiple amputations.
An immediate spirit of mutual concern and interest was evident with several of the parents of younger children listening and eagerly questioning the parents of the older children about the problems of schooling and peer interaction. The roles of teacher and pupil were exchanged around the table. Little monitoring was needed to keep the discussion going. Occasional prompting or redirection was necessary to reduce the input of the more garrulous and allow more participation of the more reserved in the groups. However, there was never a pause for lack of topics to be discussed. The advice offered was surprisingly sound, and when it was felt to be less than correct, it was gently restated by the monitors to avoid any misunderstanding or misdirection.
Other Seminar Programs
The seminars now are held at regular intervals on an average of one every three months. The programs have continued for three years with group discussions alternating with presentations of guest speakers who are themselves amputees. During the summer, family picnics have been held on the Institute grounds, providing another means of interaction. With the recent addition of a Spanish-speaking social worker to the team, we are better able to provide a similar service to Hispanic families2. The language barrier had interfered and was the reason many of them had not returned to later meetings.
The number of families attending has also gradually increased. Much of this increased interest is secondary to the fact that the involved parents began an active telephone campaign to interest others in coming to the seminars, using their positive experiences from the meetings as a selling point to the others. A newsletter was also developed to be sent to absent parents to describe the most recent seminar. These letters were prepared by the parents rather than the staff.
Our first speaker was a distinguished local Protestant minister who was born with bilateral shoulder-disarticulation amputations. He recounted his experiences from childhood through college and seminary. He generally commented on how he was able to cope in a world which at the time of his youth was certainly less considerate and more inflexible toward people with severe disability. He described how his parents understood him, allowing him to be his "own person" and providing positive support while encouraging self-reliance. The speaker's wife also was involved as the ideas of courtship and marriage were discussed. She provided insight from the standpoint of the physically normal and their role in courtship and marriage to a severely disabled individual. The speaker was not a prosthetic user, and he demonstrated graphically the use of the feet for every need, including the handling of change for the subway in New York City. Normal actions such as sipping coffee from a cup held in his right foot dramatically demonstrated his total self-reliance (Figure 2 ). His obvious personal and professional success in the face of such odds was of great interest and resulted in an active and enthusiastic period of discussion following the presentation.
Another guest speaker was a young woman of 22, a congenital triple amputee with bilateral above-elbow and left above-knee amputations. She was wearing three functional prostheses, ambulating without the need for crutch or cane, and was fully functional in all areas of self-care with her upper-limb prostheses. She spoke of her educational background, which has led her to the profession of certified occupational therapy assistant. She told how she lives alone in a New York City apartment and travels to and from work on a city bus. She addressed the group concerning her image of herself as a whole person, her struggles in overcoming problems encountered in living and moving about freely in the community while holding down a responsible position, and the problem of acceptance by her neighbors and fellow workers.
Another speaker was a young woman who had been treated at the Institute since birth. She was a unilateral below-elbow amputee fitted with a functional upper-limb prosthesis. Presently a college student, she told of the problems she had convincing the authorities that she was capable of majoring in physical education. Of all the speakers, this young woman with a relatively minor disability problem appeared to evoke the greatest amount of interest from the parents. The parents asked her to return at a later seminar to speak to the children themselves (Figure 3 ). Apparently more parents could identify with her, since the great majority of the children had similar unilateral amputations. Her method of coping and her future career struck a more personal and responsive chord. The children were equally more interested and involved.
The addition of the children to the seminars has been tried on two occasions to date with good results. Separated from the parental group with the help of staff or guests, they became involved in similar but less serious discussions. The parents seem to favor this involvement of the children.
Parental and Staff Observations
The involved parents were asked to comment on the seminars and their role in them. The responses were positive and concerned. Some reflected on the evolution of the seminars over the three-year period and how this has resulted in a change of viewpoint away from a concentration on their child and the child's individual problem to one of thinking of others who are now facing these problems for the first time. They were more aware of the fact that their problem is not unique but is one shared by many others. They, as parents having shared their experiences and the experiences of others with similar problems, felt more capable of facing the problems and frustrations to come. It was comforting to one of the parents to know that, ". . . there were other parents like us." The group discussions helped them face the problems of the future with the knowledge of how others with similar problems had faced them. As one parent said, "Our parents group fulfilled this need in its first few sessions when we met informally and talked about ourselves, our feelings, and our experiences."
"Being able to hear and listen and talk with other parents in the same boat, you can exchange ideas, learn from each other, and learn what to expect as your child gets older." This was the way another parent put it.
All of the comments were positive about the relaxed atmosphere and feeling of congeniality that permeated the meeting. This helped the participants to overcome their shyness, and they involved themselves more fully in the discussions. The major stress was that, "We all have a common bond that brings us together," and this adds to the need for and the success of the seminars.
Staff observations also were positive and constructive. The feeling was that group discussions for the parents of amputee children were valid and necessary so that each parent would realize he was not alone. They could understand that others were experiencing similar feelings and comparable doubts. The parents were gradually able to ask themselves equally frightening questions. They gained support from the knowledge and awareness that their problems were not unique.
For the parents of children with amputations, the opportunity to share their personal trials and tribulations enabled them to gain a noticeable degree of confidence in themselves as adequate parents and in their ability to cope. Each individual parent has the arduous task of answering the unanswerable question, "Why?". To share with another parent in an open-ended, honestly revealing manner the personally perplexing problems confronting each one individually and each as a family unit, this is the goal of the Parents of Amputee Children Group. Simply bringing together like-minded people with comparable personal problems creates a vehicle for helping each individual cope with his child's disability. By listening, verbalizing, and experiencing the ideas, the feelings, the questions, and the fears of others in similar situations, the parents found group discussions extremely beneficial.
The staff found the group process quite effective in meeting the varied needs of these parents and, tangentially, the complex needs of their children. As a learning experience, each participant takes from the process what he or she needs most, that need being different in each individual. The staff found that each participant feels personally enriched and rewarded by his participation in our Parents Group.
Future Direction of the Group
The major direction of the group seminars is to continue the program of instruction and discussion as before, involving new parents in the discussions as soon as possible. The continued use of guest speakers and appropriate films will also be stressed to continue the program of self-education. The yearly picnic for the entire family and the involvement of the amputee children in the seminars once or twice a year will also be continued.
In addition to the above programs, several of the parents have expressed an interest in developing a visiting parents' service. The idea is to develop such a group from the present parents and, following a psychological screening and a period of education, to make this group available to the physicians of the local area. Under the auspices of the Institute they would meet the parents of children with congenital or acquired amputations as soon as possible to prepare them better to understand and accept the burden that fate has placed upon them. All of the involved parents feel that they could have coped better with their own individual problems had such a service been available to them. They were cautioned that, in spite of a desire to work in such a group, some of them may be found to be psychologically unprepared for such a service, and if so they would have to accept this decision and work in some other capacity.
We are now in the process of program development and screening. We envision the groups to be similar to the Outreach and Stoma Clubs of the American Cancer Society.
We have presented the concept of seminars for the parents of children with congenital and acquired amputations, as the program has developed over the past three years at the Kessler Institute for Rehabilitation. We have discussed the impetus behind the development, the format of the seminars to date, and the reaction of parents and staff to the concept. The future plans propose developing a service of trained visiting parents, properly screened psychologically, to be available to the future parents of similarly disabled children shortly after birth or acquired amputation.
The concept of parents' seminars in addition to the formal amputee clinics should be encouraged so that greater parental education may be achieved through interaction in a forum suited for a relaxed exchange of ideas and experiences.
1. Sullivan, R., and F. Celikyol, Functional rehabilitation of a patient with triple traumatic
amputations. Inter-Clin Inform Bull, 14:7-8:1-8,July-August 1975.
2. Sullivan, R., and F. Celikyol, Deficiencies in the socially disadvantaged. Inter-Clin Inform Bull, 12:2:1-8, November 1972.