Pediatric Annals

EDITORIAL 

Aiding the Disabled Child

Milton I Levine, MD

Abstract

Some years ago I sat in my office at New York Hospital awaiting my next patient. A nurse opened the door, handed me a chart, and then led in a man, woman, and child. The child, a little girl, appeared to he ahout 9 years of age. She was smiling broadly, her eyes were wide open and expectant. I looked at the child and saw immediately that she was an achondroplastic dwarf.

The family lived in Wyoming and realized that their daughter was different from other children in their small community. The local family doctor told the parents that there was nothing that could he done. The child became unhappy and more selfconscious as she grew older. The father and mother refused to accept the prognosis of the small town physician. Consequently, they saved up enough money for a trip to New York where, they assured their daughter, doctors at the great medical institutions would make her like every other normal girl.

I examined the child very carefully, partly to assure the parents that I had not overlooked a single feature. There was the dwarfism, the short bowed legs, the large skull with prominent frontal region, the depressed nose and receding lower jaw. X-rays ot the bony structure were typical. And so 1 was left with one ot the most difficult decisions in my medical career - breaking the heart ot a smiling, desperately hopeful child. 1 spent a great deal ot time with the disappointed parents in an attempt to direct them in guiding their daughter to her fullest potential by encouraging her skills and talents and fostering her education.

I thought ot this traumatic experience while reading through the articles in this issue ot Pediatric Annals. For one of the most difficult problems of the practicing pediatrician is to aid both the parents and the child in coping with a most difficult chronic problem.

Of course, pediatricians conttont numerous disabilities in their care of children. Cerebral palsy, muscular dystrophy, blindness, deafness, spina bifida, and permanent disability following accidents are but a few of the many disabling conditions. All of these abnormalities demand the closest cooperation between the parents and the physician throughout the years of infancy, childhood, and adolescence. Parents should feel tree to seek advice and guidance from the pediatrician who, in turn, must find adequate time to follow the child closely.

The child's physician must first know the physical and mental capabilities of each patient. As the child grows older these capabilities, and especially talents, should he encouraged. The pediatrician must do everything in his or her power to prevent the youngster from being intantalized by the parents, and should seek ways tor socialization since too many disabled children lead lives of severe isolation and loneliness.

We know there are schools organized tor the care ot the handicapped. Such schools are usually found in the larger urban centers. However, as much as possible, handicapped children should attend conventional schools where they can meet and adjust to normal children ot their own age. In some communities, this is done on a part time basis, the handicapped children returning to their specialized schools for the remainder ot the day. Parents must be encouraged to keep their handicapped children as physically attractive as possible. They should be given every opportunity to be accepted by their peers.

Recently, on national television we were shown an English boy with severe cerebral palsy whose writings have acquired international tame, even though he is unable to speak. I am reminded also of a play written by a playwright from Canada who had cerebral…

Some years ago I sat in my office at New York Hospital awaiting my next patient. A nurse opened the door, handed me a chart, and then led in a man, woman, and child. The child, a little girl, appeared to he ahout 9 years of age. She was smiling broadly, her eyes were wide open and expectant. I looked at the child and saw immediately that she was an achondroplastic dwarf.

The family lived in Wyoming and realized that their daughter was different from other children in their small community. The local family doctor told the parents that there was nothing that could he done. The child became unhappy and more selfconscious as she grew older. The father and mother refused to accept the prognosis of the small town physician. Consequently, they saved up enough money for a trip to New York where, they assured their daughter, doctors at the great medical institutions would make her like every other normal girl.

I examined the child very carefully, partly to assure the parents that I had not overlooked a single feature. There was the dwarfism, the short bowed legs, the large skull with prominent frontal region, the depressed nose and receding lower jaw. X-rays ot the bony structure were typical. And so 1 was left with one ot the most difficult decisions in my medical career - breaking the heart ot a smiling, desperately hopeful child. 1 spent a great deal ot time with the disappointed parents in an attempt to direct them in guiding their daughter to her fullest potential by encouraging her skills and talents and fostering her education.

I thought ot this traumatic experience while reading through the articles in this issue ot Pediatric Annals. For one of the most difficult problems of the practicing pediatrician is to aid both the parents and the child in coping with a most difficult chronic problem.

Of course, pediatricians conttont numerous disabilities in their care of children. Cerebral palsy, muscular dystrophy, blindness, deafness, spina bifida, and permanent disability following accidents are but a few of the many disabling conditions. All of these abnormalities demand the closest cooperation between the parents and the physician throughout the years of infancy, childhood, and adolescence. Parents should feel tree to seek advice and guidance from the pediatrician who, in turn, must find adequate time to follow the child closely.

The child's physician must first know the physical and mental capabilities of each patient. As the child grows older these capabilities, and especially talents, should he encouraged. The pediatrician must do everything in his or her power to prevent the youngster from being intantalized by the parents, and should seek ways tor socialization since too many disabled children lead lives of severe isolation and loneliness.

We know there are schools organized tor the care ot the handicapped. Such schools are usually found in the larger urban centers. However, as much as possible, handicapped children should attend conventional schools where they can meet and adjust to normal children ot their own age. In some communities, this is done on a part time basis, the handicapped children returning to their specialized schools for the remainder ot the day. Parents must be encouraged to keep their handicapped children as physically attractive as possible. They should be given every opportunity to be accepted by their peers.

Recently, on national television we were shown an English boy with severe cerebral palsy whose writings have acquired international tame, even though he is unable to speak. I am reminded also of a play written by a playwright from Canada who had cerebral palsy. The play concerned a group of young men with cerebral palsy who were given very menial jobs in a concern which was organized to give the handicapped an opportunity to make an honest living. The men bitterly resented the uninteresting and unstimulating life offered because they had no special training. Today there are many new opportunities open for disabled children, especially since the advent of the computer age. Depending on the child's disability parents should be referred to the organizations mentioned in this issue tor advice and workshops.

The articles in this issue of Pediatric Annals cover this complicated subject from all angles and clearly present the best modern knowledge on the subject. This symposium on "Selected Issues in Pediatric Rehabilitation" is under the Guest Editorship of Dr. Thomas E. Strax, Medical Director of the Robert Wood Johnson Jr. Rehabilitation Institute, and Professor of Clinical Rehabilitation Medicine at the Robert Wood Johnson Medical School of Medicine and Dentistry of New Jersey. He has selected as contributors men and women of wide experience.

The first paper covers "The Role of the Pediatrician in the Care of the Handicapped Child." It has been written by Dr. Martin Diamond and Dr. liana W. Zarafu. Dr. Diamond is Director of the Outpatient Services and Dr. Zarafu is Medical Director of the Children's Specialized Hospital in Newark. The authors not only offer general advice but give special attention to certain specific problems. The authors also give careful attention to the education of the disabled child, citing the laws that make such education mandatory.

The second contribution discusses the "Rehabilitation of Infants and Children with Neuromuscular Disorders" and is authored by Dr. Gloria Eng and Dr. Helga Binder, both ot the Department of Physical Medicine and Rehabilitation at the Children's Hospital National Medical Center, George Washington University Children's Health Center, Washington, DC. This excellent paper describes in detail the necessary physical examination and diagnostic features and studies to be made. Also covered are the principles of rehabilitation at various age levels. This is an article worth preserving tor present or future reference.

The next paper covers a most important subject - the "Psychological Problems of Disabled Adolescents and Young Adults" and has been written by Dr. Thomas E. Strax, the Guest Editor of this symposium. This superb article covers a most important period in the lives of all disabled individuals. Dr. Strax describes the attempts of disabled adolescents to establish their own identity, to gain as much independence as possible after their protective childhood, and to adjust to and gain acceptance into peer groups. He also discusses the problem ot special education versus mainstreaming handicapped children.

The next article deals with "Controversial Therapies in the Management of Cerebral Palsy." It is contributed by Dr. Dennis J. Matthews, Medical Director oi the Children's Hospital Rehabilitation Center of Denver. This paper describes the numerous attempts at therapy in the challenging complexity presented by cerebral palsy. He notes that rigid adherence to any one system ot treatment is unjustified.

The next contribution is titled "A Developmental Perspective tor the Rehabilitation ot Children with Physical Disability." It is authored by Dr. Gabriella E. Molnar, Director of the Department ot Pediatric Rehabilitation, Children's Hospital Medical Center of Oakland. In this article Dr. Molnar discusses the rehabilitation goals adapted to the developmental stages of children with physical disabilities.

This paper discusses the special needs, activities, and therapy in infancy through puberty and adolescence. The emotional and social development ot the growing child are also considered.

The final article deals with "Enhancing the Coping ot Young Children with Disabilities." It is written by G. Gordon Williamson, PhD, OTR, Director of the Pediatric Rehabilitation Department and by Shirley Zeitlin, EdD, Director-COPING/ Supervising Psychologist of the Pediatric Rehabilitation Department, both at the John F. Kennedy Medical Center, Edison, New Jersey. Aiding the child in coping is obviously one ot the most important aspects to be undertaken by the pediatrician. It greatly affects the well-being and happiness not only ot the child but of the entire family as well. Great emphasis is given to the parent-child interaction and the family's coping resources. The child is encouraged and praised for accomplishments. But it should be remembered, the article states, that effective coping is achieved when there is a balance between the demands and expectations and the ability of the child to meet them.

10.3928/0090-4481-19881201-04

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