Milo B. Brooks, M.D. Yoshio Setoguchi, M.D. Joan Thue, O.T.R. Lila L. Beal, M.S.W. Doris Tom, M.S.W.
This article originally appeared in the Tenth Annual Report (1964) of the Child Amputee Prosthetics Project of the University of California at Los Angeles. Because of its cogency, it is reprinted here with the permission of the authors.
A successful prosthetics program for the limb-deficient child is dependent upon a number of factors. It would be difficult to classify these in order of importance, for each is essential. An adequately fitted, comfortable, and well-functioning prosthesis is, of course, indispensable. The amount and kind of training the child receives is also of great importance. The age at which the child is first fitted is highly significant: even a five-year-old has developed neuromuscular patterns which he has to unlearn, or they will interfere with prosthesis wearing.
Primary Importance of Parents' Attitude
But perhaps the most essential single consideration is the attitude of the parents and the child toward his disability and the idea of a prosthesis. If that attitude is not positive, not wholesome and constructive, then the prospects of failure are greatly increased and perhaps inevitable.
Very often the failure of a prosthetics program is attributed to the prosthesis, or to the therapy the child has received. While these can be and sometimes are the causes, most often the failure can be traced to the emotional climate which has resulted from the attempts of the parents to cope with the shocks and stresses engendered by the birth of a disabled child.
For this child and his family there will continue to be crises and stress periods of varying intensity and importance. Undeniably the most important - and the most far-reaching in its effect - was the crisis that occurred at the child's birth. But there are others, not so apparent, perhaps, and whose effects may be more subtle, but which nevertheless profoundly affect the child's ability to adjust to his physical difference and to society. Entering school is one of these; the period of adolescence is another.
At the Child Amputee Prosthetics Project, University of California, Los Angeles, the term crisis intervention is used to refer to the kind of assistance that qualified professional personnel can give to the child and his family during or prior to such crucial periods. Some of these crises and periods of stress are predictable; some are not.
The First Crisis - The Birth
The shock that accompanies the birth of a limb-deficient child is predictable, inevitable, and of great intensity. It is during this first and most crucial period of stress that professional assistance is most urgently needed.
The birth of a normal, healthy child is a time of happiness for everyone concerned - particularly the parents, of course, although the obstetrician and the nurses also respond to the general atmosphere of triumph.
Birth of Malformed Child Traumatic Experience to Parents
The birth of a malformed child is quite a different matter. The parents are almost certain to be overwhelmed by feelings of deep grief, bewilderment, rejection, and isolation. The Child Amputee Prosthetics Project staff has learned much about this period from parents who have later brought their child to the Project, and attempted to relate the events that took place at the time of the child's birth. It was through conversations with these parents that we first began to perceive the real depth of the shock and trauma of this period. These parents have revealed that during that crucial time they felt entirely alone with their problem, and that the situation was hopeless. In trying to discover why the parents felt precisely this way, we had them describe the sequence of events as they remembered them. It soon became evident that they had been acutely aware of (although frequently misinterpreting) the reactions of the people around them: the obstetrician at the time of delivery, the pediatrician who came to examine the child, and the nursing staff.
Many mothers have said, "The doctor was angry with me."
He was not angry with her; he was frustrated and upset because he had expected to deliver a normal, healthy baby. He had cared for the mother during her pregnancy, and this was a traumatic moment for him also. And so, out of his own shock, and perhaps also his inexperience with this situation, his reaction was unguarded.
The obstetrician may give the baby over, sometimes very quickly, to the pediatrician, and have no further contact with the mother or the child.
The pediatrician examines the child, and there is nothing he can do: it is a healthy baby in all other respects. Sometimes, out of desperation, he has it put in an incubator, but of course this is seldom necessary.
An orthopedist may be called in, but this specialist is equally helpless, although he may recommend that any vestigial appendages be removed.
The baby may not be shown to the mother by a member of the medical staff: this unpleasant duty may be delegated to the nurse, or even to a student nurse. And sometimes the baby isn't shown at all. One mother said, "How could I believe that only a hand was missing, when I didn't see my baby until the day I left the hospital, and he was wrapped up and handed to me? The first thing my husband and I did after leaving the hospital was to go around the corner, sit on a bench, and unwrap and look at our child."
Statements like this are clues to the intensity of the feelings which the parents experience at this time.
Immediate Assistance Available
Members of the medical profession really cannot be blamed if, out of their own shock and inexperience, they handle the situation ineptly. It is most important, however, that the parents receive some reassurance and help from qualified personnel who have had experience in dealing with similar problems. And this help should be supplied without delay: if possible, during the first twenty-four hours of the shock period, when the parents are in deepest conflict.
This may he difficult. The first problem for the physician and medical social worker who are prepared to render this service is in finding out that this child exists. Many members of the medical profession are still not aware that such emergency assistance is available, even though they may know of the existence of child prosthetics clinics and may, at some later date, mention this to the parents.
The CAPP staff has used several means to inform medical and paramedical personnel in this area that such assistance is available from the Child Amputee Prosthetics Project, and now more and more frequently we are notified immediately when a child with a congenital limb deficiency is born. This enables members of the Project staff to visit the child and his parents at the hospital within days, and sometimes even hours, after the child's birth.
Effects of Team's First Visit
It is customary for a pediatrician and a medical social worker from the Project to work as a team on this first visit to the hospital (or, if it is too late for a hospital visit, to the home). Usually this service is rendered at the request of the attending physician - and in any case he is contacted, to make certain that he desires this assistance. The Project pediatrician makes a point of examining the child in the presence of his mother, and, if possible, the father also. A physician can create a climate for positive change in the parents' attitude simply by the way in which he handles their child: if they can observe their baby being treated as something not merely acceptable, but even beautiful and valuable, even though incomplete, a kind of communication, nonverbal but highly effective, may be established.
These first few hours are crucial. It is during this period that parental attitudes are beginning to be formed, and defenses raised to deal with this shattering problem. If, at this time, they can receive support and some kind of comfort, and an assurance that something can be done for their child, a hopeful beginning has been made. The parents at this time are bewildered, and are not likely to comprehend fully what is said to them, or remember much of it; but this is of less importance than the strength they gain from the fact that - as more than one mother has said - "Somebody cared, and somebody came."
How much and what kind of help can be given at this time?
Establishing Communication with Parents
The physician-social worker team attempts to strengthen the lines of communication between the attending physician and the parents. The mother and father need to be able to talk about their problem, and they need an opportunity and a means of expressing their grief. Comforting platitudes are worse than useless: they close the doors of communication, because the parents' immediate reaction is: You obviously don't understand how I feel, so why even try to communicate my feelings to you?
Also, they will undoubtedly be struggling with emotions which are very frightening to them: death wishes for the child are often present at this time (and not only in the parents, but also among the attending staff). Such death wishes are inevitably accompanied by strong feelings of guilt, and the parents may be completely unable to talk about these feelings. Members of the Project staff have had occasion to witness the really deep-seated neurotic patterns in some parents as a result of denials that they have ever had these feelings.
One of the things the physician and social worker attempt to do is to convey to the parents that this is a natural way to feel at this time, and that to experience these feelings is not something to be ashamed of. If the parents can accept this concept, and if they can be encouraged to verbalize their feelings, they can then begin to move toward a realistic acceptance of their problem.
It may appear that this problem of communication has been over-emphasized; but the child himself, later on, is going to need to be able to talk with his parents about his disability. ("Why did this happen? Why am I different?") And it frequently happens that if the parents have not been able previously to discuss this between themselves, when the time comes they are unable to answer or even consider the child's questions.
The Homecoming Crisis
The child's birth is only the first of many crises which the parents will be required to meet. A second is imminent - for in a few days they will take the baby home from the hospital, to face a whole new group of people: the immediate family, other relatives, and friends. Questions will have to be answered, and explanations given. Therefore help is often urgently needed at this time.
Even though the physician-social worker team may have already seen the parents and the baby in the hospital, it is important that they also have an opportunity to observe and evaluate the home environment. Many things can be learned from a home visit: for example, the physical structure of the family, and an idea of the way in which the parents handle themselves in their own environment. Ideally, the family should be seen within at least a few days after the return from the hospital. More often than not, a chaotic atmosphere prevails in the household; everyone is upset. To have someone come in bringing reassurance, support, and information almost invariably results in a lessening of the tension and a more orderly domestic atmosphere.
It may be that at this time the parents are capable of listening more attentively to the explanations of the physician and social worker. The parents usually have questions concerning their immediate problems such as the inquiries being made by siblings, relatives, and neighbors. The parents may even have begun to discuss the baby's future, and perhaps can be encouraged to verbalize their hopes and fears.
First Clinic Visit
Another crisis occurs when the parents come to the child amputee clinic for the first time. This first visit is certain to arouse anxieties in the parents, for it brings to them the reality of their situation - the fact that they are actually seeking prosthetic replacement for their child's deficiency. They may have denied, until this moment, that the problem really exists; but now some of the anxieties which may have subsided temporarily are reawakened.
The Project staff has observed a perceptible difference in attitude between those parents whom we have contacted in the hospital or at home, and those who come to the Project for the very first time with no prior contact. It is much easier for the former, for they are entering a situation in which at least some of the personnel are familiar, even though the physical surroundings are strange. They have already learned, in part, what they can expect to find at the Project, and they are reassured by this and by the fact that the staff knows them and is sympathetic to their problems; consequently, the tension is eased, and they have already begun to identify with the staff and with the Project goals.
Films Offer Encouragement
In this first interview at the Project, motion picture films have been a highly useful tool, for although one can talk at length with these new parents, and assure them: "Yes, you child willbe able to participate in these kinds of activities", "Yes, you can expect certain things to happen", no amount of verbal explanation can equal the reassurance the parents experience when they see films of a young patient who has a disability similar to their own child's, and who is actually engaged in all the purposeful activities they want their own child to be able to accomplish.
An alternative aid is to enable the parents to observe a child with a similar disability while the child is receiving therapy. However, it has been found that due to variables (such as the child's behavior or level of accomplishment), the films are a much more reliable tool.
Stress Periods During Infancy And The Preschool Age
Infancy, as it is defined at this Project, encompasses the first two years of life. Preschool is that period between infancy and the child's entry into school. During these two periods there is likely to occur a series of stress situations which may interfere with the child's normal pattern of development.
The question may arise as to why the amputee child should have more problems, or more severe problems, during these early years than the normal child does. Can he not be treated as a normal child, and should this not be a relatively normal period, since he has not yet been exposed to the stresses of school and society?
If the parents are emotionally stable, and if they have been able to make a realistic adjustment to the problem of their child's disability, the youngster's preschool years may well be relatively normal and happy ones. A child's basic behavior traits (according to Gesell) are fairly well determined by the time he is a year old. By this age he will already have developed some personality traits that are going to be evident throughout his life. Some of these traits almost certainly are hereditary, but many are absorbed from the attitudes and feelings of the family. (This can be observed in adopted children, who quickly assume many of the patterns and mannerisms of their new family.)
The First Prosthesis
The infant and preschool years of a limb-deficient child are certain to bring some predictable and fairly severe periods of stress. Getting the first prosthesis is one of these: it is a new experience, and a strange one; but a very young child is used to having strange things happen to him all the time, and if he is fitted properly and at the proper time, he is likely to identify with his prosthesis very early and without too much difficulty. (The parents may need more assistance in accepting the idea of prosthetic replacement than the child does.)
The parents may also benefit from professional assistance during the child's second year - "the Terrible Two's" --when he goes through the usual period of negativism. At this age he wants to resist everything that is done for him, and some parents find it difficult to understand that this is a normal reaction; that the child is simply trying to establish some of his own personality, and achieve a little independence. It is particularly difficult to let limb-deficient children be independent - to realize that they, like normal children, want to do things for themselves, and that they should be permitted and encouraged to become as self-sufficient as their deficiency allows.
The Inevitable Questions
Another period of stress, which occurs almost simultaneously with this, is the child's development of language: the time when they begin to think and ask questions. They observe the unimpaired limbs of their siblings or playmates, and ask why they do not have two hands.
If the parents have not realized that this question was inevitable, and are not prepared for it, their confusion may make communication on this crucial subject very difficult or even impossible. Some parents reply, "God wanted you like that". This answer often requires even more difficult explanations later on. In this situation, a simple but truthful answer has proven to be the most satisfactory. "You were born that way" is enough to satisfy them in the beginning, and can be expanded upon as the child grows older and demands more information.
The Amputee's Siblings
The preschool years are a period of sibling rivalry, when the "pecking process" becomes an inevitable part of the family pattern. The child just older than the amputee child is in a precarious position, because he or she has not only to relinquish his position as the baby of the family, but also to step aside for someone who requires a great deal more attention and time and concern from the parents. This older child may find it very difficult to compete in this situation, and as a result may develop unhealthy compensatory behavior. This in turn makes it difficult for the amputee child. But if the parents can be made aware that this situation could develop, they can then be helped to find ways either to prevent this from happening, or be better prepared to handle it when it does occur.
During the preschool years the prosthetic program begins to assume more importance, and this will involve the child in some potentially stressful situations: the child will attend therapy sessions, be fitted for a new prosthesis, and must learn to operate and take care of it. All these challenges will require some sort of adjustment. The use and care of a prosthesis is quite an addition to the child's life activities - and he is going to have to take care of it all his life.
But during the time he is making these various adjustments, and acquiring all the necessary skills for prosthesis use, he is also approaching another major period of crisis: his entry into school life.
The School-Age Child
When the limb-deficient child enters school, not only does he face many problems of social adjustment which he must attempt to solve, but he poses problems for others: his fellow students, for example; and, especially, his teacher.
If a teacher has not dealt with an amputee child before, there will be many questions for which she must find answers: What kind of experiences will this child bring into the classroom with him? Has he had considerable surgery and been in hospitals much of his life? Has he been over-protected at home? What should be my attitude toward him? Will he be abnormally sensitive about his prosthesis? What will be the other children's reactions? What extra work will be required from me? Can he take care of his toileting, and tie his shoelaces? Can he hold a tray? Is the prosthesis dangerous?
The Teacher's Contribution
The conscientious teacher can find several good sources of information and assistance. Informed parents will have many of the answers for her, and will probably make a point of talking with her before school begins, to discuss their child's capabilities with his prosthesis. However, there are parents who are unable to do this, and in such cases some active participation by the child amputee clinic staff will be necessary. The child's therapist can be very helpful, for she is perhaps the person most aware of the child's current status as far as his activities and capabilities are concerned.
The limb-deficient child entering the classroom will have some fear of meeting new people, just like all other children, but he will also have to cope with the initial reaction of other children to his prosthesis. There are ways in which the teacher can handle this situation: an introduction of the child and his prosthesis to the other students in a controlled classroom situation, with the teacher ready to support the child by her acceptance and matter-of-fact attitude, is usually most effective. Some teachers have used the "Share and Tell" period to let the child introduce his prosthesis to his classmates. If the parents and the therapist have anticipated this difficult moment, they may have suggested to the child that he demonstrate, by some small activity, how the prosthesis works. Usually a brief demonstration and a simple explanation will satisfy the curiosity of the other children.
Relationships With Other Children
Problems also arise on the playground and in the cafeteria, and these problems usually involve the older children. Amputees often complain that they are teased and called "Captain Hook" or "Mrs. Hook". This hazing is usually perpetrated by the older children, rather than by the amputee's own classmates. Much of this appears to be motivated partially by curiosity, and the children who are able to cope with this teasing, and use it as an opportunity to explain how the prosthesis works and give a demonstration of it in action, are the ones who have been most successful in alleviating this problem - although it is not always a solution.
Major problems may arise if the amputee child discovers that he can use his deficiency to manipulate his teacher and his classmates. Unless the teacher knows exactly what the child can and cannot do, she will find it difficult to control this situation. The bilateral amputee, although he does have to make many reasonable requests for assistance from his classmates and his teacher, will very often try to get them to work for him unnecessarily. The teacher must be very alert and perceptive properly to evaluate such situations.
Encouragement to Compete
Sometimes the amputee child will deny an interest in an activity because he is afraid of failure. Boys refuse to play baseball, and feign indifference. One young girl with an upper and lower involvement insisted that she wasn't interested in roller-skating or jump-rope, but with encouragement from the teacher and some help from the therapist and her parents she did learn to participate, became quite skillful, and took pride in her accomplishments.
Nevertheless, the amputee child does find it difficult to compete in recreational activities involving motor skills, and the parents and teacher need to be aware of this. It is helpful if the child can be given the opportunity to experiment with the different kinds of playground equipment before he is placed in a group situation where he is forced to compete -- and possibly not succeed.
The Period Of Latency
The term latency is used in this context to refer to the pre-adolescent, or pre-teen period: that is, approximately between the ages of six and eleven. Unlike infancy, early childhood, or adolescence, latency represents a stage of calm and steady growth. This is particularly true if the problems of the previous periods have been adequately met. Although intervals of stress are certain to occur, in general the latency period does not present severe crises. In latency, preventive measures can be employed to better effect, for during this period it is relatively easy to establish communication, and the youngster is responsive to remedial treatments. Those working with the child should take advantage of this fertile period of communication to help him express his feelings.
Receptive to Treatment
There are some aspects of the latency period which make this comparatively serene interlude a good time for preventive or remedial assistance, through which the ego can be strengthened, and interpersonal relationships and social development encouraged.
In latency the youngster enjoys several relatively stress-free years during which he has the opportunity to discover his place in the social world. By the time the child is six years old, his world has expanded to include the school and the community; he now has the opportunity to relate to a variety of individuals of different ages and social levels. His interpersonal relationships, and his means of handling them, are beginning to develop.
Behavior Patterns Relatively Clear
The child has learned about adults primarily through his parents, and the way in which he handles or deals with the problems that he meets at home is directly related to the way he will handle himself in other social situations. The child who has been given an adequate amount of security, affection, and support by his family members will look to outsiders for the same type of relationship, and will approach extra-familial social contacts with spontaneity and enthusiasm. But if timidity and a reluctance to experience social contacts are apparent during this period, it may very well be due to the experiences of uncertainty he has had with his parents. If he exhibits hostility to other adults -- his teacher, the physician, or group leaders -- this may indicate a possible resentment toward his parents. But whatever his approach, it is almost certain to be less guarded than it will be later on, when he enters the closed world of adolescence.
During latency the child develops and pursues individual interests, and begins to develop a sense of duty and a feeling of accomplishment. He begins to attain a balance between the controlling influences of his parents (or the other adult figures in his life) and the satisfaction that he gains from his independent efforts. If the child cannot be helped to develop such a balance, he becomes confused and unhappy; his behavior becomes random and unpredictable, and if this continues into adolescence he has much less stability and security to aid him in withstanding the severe emotional and physical stresses of this highly crucial period.
The difficulties involved in communicating with the adolescent are well-known to every parent, physician, social worker, and teacher. The adult world finds the teen-ager quite impervious to rationality, and the establishment of even the most tenuous kind of rapport often seems impossible.
The adolescent lives in a closed, esoteric society; he rarely tolerates the company of anyone but another adolescent, and will engage in only those activities which interest other adolescents. As an added barrier to communication, he frequently exhibits many of the negativistic attitudes of the two-year-old.
It is a very difficult period for him, and a long one. In our society, adolescence now begins earlier and lasts longer. Today's teen-ager becomes socially independent earlier, but economically independent much later. In our child-rearing practices we condone independence at an earlier age, so the baffled adolescent experiences a long period of outer pressures to intensify the multitude of inner conflicts inherent in this period.
Special Problems of Amputee Teen-agers
The amputee child will have, in addition to all the predictable problems of the normal adolescent, some special problems which are likely to require professional assistance. Just as it was important for the parents to discuss their feelings at the time of the birth of their limb-deficient child, it is very important for the child himself to be able to discuss his own feelings about his deficiency, and to ask questions.
The adolescent amputee is very much preoccupied with his personal appearance. At this time cosmetic considerations become very important to him, and he needs sympathetic and understanding professional guidance in making decisions about the future of his prosthetic program.
Choice of a Career
By the time the adolescent is seventeen or eighteen, he usually begins to become more receptive to adults. His own life as a young adult is imminent, and he has begun to think rationally about his future. He is again approachable, for he has begun to turn to the adult world for social guidance and assistance in his choice of an occupation or profession. Professional assistance is urgently needed at this time, for there are very realistic limitations to the choice of occupation for the amputee - for example, the medical profession and the armed services, which are very popular choices among today's teen-agers.
In the life of the limb-deficient child, crises and periods of stress, often very severe, occur from birth onward. The child and his parents will often require skilled professional help to assist them in solving their problems and alleviating the tensions that accompany these periods of stress. The success of a prosthetics program is dependent upon the child's ability to surmount these obstacles, and it is the responsibility of those concerned with his welfare to provide him with this necessary support and assistance in his efforts to function successfully.
It is the goal of all the members of the Child Amputee Prosthetics Project staff, secretarial as well as professional, to convince each patient that he is a person of real worth; on every visit to the Project, the child and his parents are made to feel important. Every child, but especially a disabled child, needs to be wanted, to know that he is wanted, and to know that he is worth wanting. It is essential to make the limb-deficient child not only a good prosthesis wearer, but a productive citizen, of value to his community and satisfaction to himself.
Milo B. Brooks, M.D., Yoshio Setoguchi, M.D., Joan Thue, O.T.R., Lila L. Beal, M.S.W., Doris Tom, M.S.W. are associated with the Child Amputee Prosthetics Project University of California at Los Angeles Los Angeles, California