Interpersonal Problems Of The Handicapped Child
Newton C. McCollough, M.D.
A Review of *
"Caring for Your Disabled Child" by
Benjamin Spock, M.D. and Marion 0. Lerrigo, Ph.D. Published by The Macmillan Company, New York, New York, 1905. 373 pages; Illustrated.
When Mr. Hector Kay requested that I review this hook for publication in the Inter-Clinic Information Bulletin, it seemed that much of the information included in such a review would be repetitious to those already deeply involved in treating the disabled child. However, as I read the book, many of the things that I have long been aware of as an individual who faced the problems of the disabled child from a physician's standpoint, became more firmly crystallized, both with regard to these children and their parents. I felt quite sure that this clarification of my attitudes toward child and parents will be to our mutual benefit. Perhaps this review will serve a similar purpose for others.
Even those of us who fortunately do not have disabled children of our own find that the interactions between our children and ourselves are often quite complicated. Nevertheless we usually fail to realize the multiplicity of emotional derangements which can develop in a family with a seriously disabled child. In the introduction to their book the authors stress that the basic needs of a disabled child do not differ from the normal, and that he has to have the affection and guidance that any child should have. Providing too much attention, or too little, either of which may be a reflection of guilt feelings on the part of the parent, creates an atmosphere of confusion.
The relationship of the disabled child to the family unit, including the other children, requires careful consideration by the physician. He not only has to treat the disability in the child, but also must provide gentle guidance to the parents in managing this extremely complicated situation.
It is pointed out that in the New York Institute for the Crippled and Disabled 97 percent of all handicapped persons can be rehabilitated to the degree that they can lead productive lives, and that the earlier rehabilitation begins the more effective it is likely to be. We who have treated amputees, both traumatic and the congenitally deficient, have appreciated this principle and for many years have urged that the management of these patients begin at a very early age. This procedure involves great expense, but we have gradually come to the conclusion that we have no other alternative but to let State and Federal agencies assume some of the financial burden. Certainly very few families can afford it.
Potential of the Handicapped
It is interesting to note that, stimulated by Dr. Ludwig Guttmann, the Stoke Mandeville Hospital in England has been remarkably successful in the management of paraplegics. These non-ambulatory individuals now engage in competitive sports which were attended by competitors from eighteen countries in 1955. The types of sports included archery, javelin-throwing, table tennis, wheelchair polo, and basketball. The first competition took place in 1948 and it is continuing on an annual basis.
On the tenth anniversary of the Stokes Mandeville Center's establishment, a study was made of the first one-thousand patients Fewer than nine percent had died. Most of them were living at home and had regular jobs. Some had married and had children of their own,and others had adopted children. I am quite sure that in our area, and many other areas of the United States, the success achieved in the management of paraplegics is far below this standard and the standards established in other countries.
This book places great stress on the attitude of the parents toward the child because, after all, the parental attitude molds the child. In our Amputee Clinics I am quite sure that we spend eighty percent of our time fitting a prosthesis, discussing its merits and considering such matters as the terminal device and its function; ten percent talking to the child and perhaps less than ten percent talking to the parents. Probably the most valuable part of the Clinic operation as far as the parents are concerned is the informal group therapy they give each other in the waiting room during the prolonged periods when they sit with their children, discussing handicaps and adaptations, and possibly even their own feelings concerning the child. It is pointed out in this book that group therapy is of tremendous value, not only for the children but also for the parents, and that this is the one aspect of treating the family with a handicapped child that we have most neglected. It is, I am quite sure, due to the fact that we physicians lack time. However, suitably trained District Nurses, Social Service workers, and psychologists could be of invaluable assistance in directing this type of therapy.
The book emphasizes that the feeling of the parents toward the handicapped child may be one of over-affection or one of deep resentment which originates from feelings of guilt. The parents feel that they are alone with their problem and that they are isolated from the parents of non-handicapped children. They react violently to suggestions by physicians regarding institutional or surgical care, many with scorn, because of the physician's inability to produce the miraculous result that they have hoped for, "a perfect restoration". It seems to me that one of the most important points made in the book is that parents need the satisfaction that comes from achieving their ambitions for the child. They usually feel that their children are their most worthwhile contributions and look to them to reach goals that they themselves had hoped for and not achieved. In a sense, their children are still a part of themselves and the handicapped child gives the parents an extremely deep sense of inadequacy. A mother may feel that her in-laws look down on her if her child has a birth defect. A father who is a teacher may feel that his own status is somehow lowered because his child is mentally retarded. This applies to all types of disabilities including limb deficiencies. The feeling that their children will not be able to fulfill the goal they have set for them, or set for themselves actually, hurts the pride of the parents and the emotional reactions are carried through to the child, the other children in the family, and frequently may be the cause of marital collapse.
Two sentences which reflect typical parental attitudes are quoted verbatim: "Are my child and I not worthwhile people?" "Am I being punished for something I've done?" As physicians we must give more careful consideration to these feelings when we sit down with the handicapped child and the parents.
It is recommended that discussions with the parents should be conducted in the presence of the child because these children understand and they want clarification of the problem to an extent equal to that of the parents. Ambivalent and guilt feelings are distributed between parents and child on almost an equal basis. The authors point out that especially in the early stages of learning sociability, most handicapped children find themselves more at ease when they are a part of a group with disability problems similar to their own. A day school is greatly preferable to institutional care if this advantage can be obtained in the community. The need for play and recreation periods, for learning fair play, for obeying the rules of the game, and learning to get along with others, is stressed very strongly. These considerations are just as important for the handicapped child as for any other. In fact, more important.
The handicapped individual can achieve independence by the slow and painful process of learning to perform the activities of daily living under careful Clinic Team supervision. The need for progress in this respect is stressed. Moreover, performance of the activities of daily living should lead to a feeling of responsibility for some other duties around the home, thus making the handicapped child a more important individual in the family integration.
Parents' apprehension regarding the child's handicaps will make him fear that his condition is more serious than it really is, and the importance of frank discussions regarding every point of his disability, with reassurance, will give him more confidence and reduce his anxiety.
The difficulties in undertaking new experiences may seem almost insurmountable, but patience and encouragement of the child's determination in confronting these experiences has been stressed by these understanding authors as important items in parental education and management.
Dealing with Pity
Another portion of the book stresses the education of the handicapped child with respect to the pity that is generated by his deformity or disability. A self-respecting child resents pity because it makes him feel inferior. If the handicapped child can learn to put the other person at ease with a courteous remark or explanation, he will be doing someone else a favor and aiding his own adjustment. It is pointed out that the handicapped child should receive only his fair share of consideration in family life, not the lion's share. The results are then far better for everyone, including himself. If his needs are always put first he is apt to become self-centered, overly dependent, and even tyrannical. The other children almost inevitably feel resentment toward the favored child. Insofar as the handicapped child is able, he should be included in all family activities.
Relationships with neighbors in the community are stressed. This is an extremely complicated problem because it also involves the siblings, who may receive criticism from children in the community because a member of their family is handicapped or disabled. Involving the parents in group therapy and reassuring them that if each family had 100 children, at least one or two would be handicapped, and that this could happen in the first, the twenty-fifth, or the hundredth child, will help dissolve their guilt feelings regarding the child. There is no question that there are certain instances where genetic trends are so strong toward the production of handicapped children that parents should be so informed, if this is their misfortune.
In our area we have found parents who have transferred their residence here merely to obtain advantages in schooling and training for their handicapped child which they did not have elsewhere. Frequently, in a frantic search for medical aid, parents will seek the help of charlatans and a great deal of the educational value of this book, which is meant primarily for the laity, should be to direct their attention to reputable and qualified sources of assistance.
The latter part of this most interesting volume discusses things that our Clinics deal with daily, concerning early training. Attitudes regarding ADL, the activities of daily living, are stressed, but these are usually handled satisfactorily by the therapist and the family of the handicapped child. Regarding the child with braces, the discussion on care and the attitudes of the family with respect to orthotic devices is extremely interesting and certainly matches our ideas regarding them. I need not go into the care of the child on crutches or in a wheelchair, both of which are very well covered in the book. The prosthetic care of a traumatic, surgical, or congenitally deficient child amputee is interesting and the authors cover this subject in a manner that should be extremely informative to the parents. It would be repetitious for me to offer this information since it conforms to our regular Clinic practice. I want to compliment the authors on extending this type of knowledge to those who have children with such handicaps. In the paragraph on artificial limbs they leave no doubt on the extremely important point that early fitting of children is indicated.
I disagree with the authors that the passive hand or mitt is applicable to most children and rely myself, as I think most of us do, on the P10 or P12 hook; even though it is not activated initially, it soon will be. I know that most of us would agree that the use of the hook will pre-train the child to harnessing and activation by scapular motion. In the lower extremity fittings no problem occurs. They learn to walk.
The chapter on bowel and bladder control is important and most informative, but has no orthopaedic significance, and I think should be relegated to the realm of physical and occupational therapy.
Sources of Help
One of the last subjects covered in the book, "Where to look for help", may be informative to the family with a handicapped child. While those of us who are in the practice of medicine are not particularly anxious to assume these guidance and educational responsibilities, we have done so in past years, and will continue to do so, under the auspices of the Bureau of Crippled Children's Agencies or the Crippled Children's Commission. We all realize that none of these children should be denied all the help we can give them and this has been one of the bases of our training, one of the bases of our experience, and also forms one of the foundations of our teaching of the residents in orthopaedic surgery.
In summation, this volume, "Caring for Your Disabled Child", should certainly be in the hands of all parents who are faced with the problem of obtaining the best and most logical treatment and providing the proper emotional care for their crippled child. I trust that its circulation will be encouraged by all of us in our Clinics and strongly recommend that it be read carefully by other Clinic Chiefs.
It is of interest that the Clinic in Grand Rapids, Michigan, under the direction of Dr. Charles Frantz and Dr. Tom Aitken, is given credit as the original Juvenile Amputee Clinic in this country.
Newton C. McCollough, M.D. is Chief, Child Amputee Clinic Orlando, Florida