Postgraduate Medicine
ISSN: 0032-5481 (Print) 1941-9260 (Online) Journal homepage: http://www.tandfonline.com/loi/ipgm20
Counseling the parents of birth-defective children McCay Vernon To cite this article: McCay Vernon (1979) Counseling the parents of birth-defective children, Postgraduate Medicine, 65:3, 197-200, DOI: 10.1080/00325481.1979.11715093 To link to this article: http://dx.doi.org/10.1080/00325481.1979.11715093
Published online: 07 Jul 2016.
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Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ipgm20 Download by: [Australian Catholic University]
Date: 24 August 2017, At: 15:16
Counseling the parents of birth-defective children
McCay Vernon, PhD
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
Consider What are two needs ofparents ofa child with a recent/y diagnosed handicap? What is an effective resource for physicians in counseling the parents ofa handicapped child? What alternative may be used when self-help counseling programs are not available?
Parental reactions to the diagnosis of a birth defect were discussed Iast month (page 183). This article gives some suggestions on how the physician can offer parents meaningful help in coping with this stressful situation. In most cases, parents of a birthdefective child desperately need counseling and education about how to cope with their child's handicap. Inevitably, they tum to their physician. This article provides sorne suggestions for aiding the parents of handicapped children in a manner that is effective and compassionate but that is also economical oftime. Counseling needs Parents of a child with a recently diagnosed handicap have two counseling needs. The first is to receive information, not just from a professional but from those living with a handicapped child and from those who themselves are handicapped. The second is to be able to express and work through the grief, fear, depression, anger, and other feelings connected with having a defective child. To meet these needs, the ideal arrangement is to have working together a sensitive person trained in group therapy, parents ofhandicapped children of widely varying ages, and successful handicapped adults. This combines the best of self-help approaches with the skills of conventional group therapy. Self-help groups Research concerning familles with birth-defective children, as weil as
experience from other areas of rehabilitation, clearly shows the effectiveness of self-help groups in providingparents withcounseling. For example, the organized group-therapy program of Alcoholics Anonymous is usually far more effective atrehabilitationfor alcoholism than is expensive individual psychotherapy. The same is true for other self-help organizations. The ideal time for parents to become involved with a self-help group is when they first fmd out that their child is handicapped. The opportunity to discuss feelings in an accepting, understanding environmentis crucial. Suchgroupsforparents ofhandicapped children alreadyexistin many areas. For example, mostcommunities of 10,000 or more population have an organization of parents of mentally retarded children. Placing the family in contact with such a group maximizes the chance that helpful counseling will be provided by intimately involved and concemed persons. The physician can be reasonably certain that the parents will receive excellent information on educational progra,ms that are available, as weil as other community resources. For parents of children with uncommon handicaps orthose living in rural areas, such groups may not be
continued
VOL 65/NO 3/MAACH 1979/POSTGAADUATE MEDICINE
197
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
Parents of a child with a recently diagnosed handicap have two counseling needs-information and t.,• abillty to express and work through the feelings connected with havlng a defective child.
available. In this situation, an alternative is to put parents in touch with a family that is effectively raising a chlld with the same handicap or an adult who bas successfully coped with it. Sorne ~elf-help groups have been formed and function as part of the comprehensive health service provided by large hospitals or clinics. Under these conditions, they come under medical direction. In other instances, self-help groups seek the counsel of a physician. As indicated earlier, establishment of self-help groups is not a major problem in larger urban areas. In rural areas or small towns, one solution is to have parent institutes where parents from a wide geographie area are brought in on a residential basis for a week of intensive counseling. This can often be done at state facilities serving handicapped children. Public health physicians in charge of children's services or special education professionals may be useful in sponsoring these institutes. For the physician who directs or serves as a consultant for parent
groups, comment regarding two co mm on mistakes is in order. First, the groups often have been composed only of parents of very young children whose defect bas been recently diagnosed. Thus, the experience and knowledge that could be provided by parents with older handicapped children bas been lacking. In a sense, this situation would be a little like Alcoholics Anonymous excluding those who have already been rehabilitated. It is far better to involve one or two parents who have successfully raised a handicapped child. Second, handicapped adults often have been excluded from these groups. For example, sorne counseling centers for parents of deaf children either have specifically excluded deaf parents or else have failed to provide sign language interpretation. The value is obvious of having in the counseling groups adults who have successfully coped with their handicap, yet they are almost always excluded from fullfledged membership. Instead, they are brought in only for brief inspirational testimonials. The physician's reaction
McCay Vernon Dr Vernon is professor ofpsychology, Western Maryland College, Westminster, a fellow in the American Psychology Association, editor of American Annals of the Deaf, and a member of numero us professional organizations. He bas authored over 200 books and articles. His interest in handicaps bas grown, in part, from his wife's childhood-onset deafness.
198
In discussing psychologie reactions to birth-defective children, the focus is often exclusively on parents. This approach ignores the physician's feelings in making the diagnosis of an irreversible handicap and in confronting the parents with this fact. Most physicians find this situa-
tion traumatic. A person who is committed to healing is understandably threatened when a disorder is found to be irreversible. While the physician's reaction may not be as intense or apparent as the parents' reaction, it should not be minimized if the total process of what happens at the time of diagnosis is to be understood. The physician may "let the parent down" at a time of great need as a consequence of his or ber feelings and lack of knowledge of behavioral consequences of a specifie handicap. The physician who cannot face the failure symbolized by an irreversible defect, or who does not have the facts or experience needed to discuss the behavioral consequences of the problem, may fail to tell the parents the implications of the child's handicap or what can be done. Or, out of misguided kindness and lack of knowledge, he or she may even extend false hopes. As a substitute for a frank, honest sharing of the full facts, the physician may imply that research will come forth with miraculous cures or may engender unrealistic expectations concerning prostheses or the outcome of compensatory training. Occasionally, the feelings aroused by the handicap may trigger authoritarian behavior or an omnipotent posture, with effects that are negative rather than supportive. These judgments may seem harsh, but they are based on years of clinical work and extensive study of parcontinued
VOL 65/NO 3/MARCH 1979/POSTGRADUATE MEDICINE
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
The physician who cannot face the ta il ure symbolized by an irreversible defect, or who does not have the tacts or experience needed to discuss the behavioral consequences of the problem, may ta il to tell the parents the implications of the child's handicap or what can be done.
ents of handicapped children. Physicians need to be aware of these problems to deal with them constructively. Summary Parents of a child who is diagnosed as defective face a crisis for which they are usually unprepared. They need an opportunity to work
through their intense feelings. In addition, they need specifie information about how to be of use to their child. Self-help groups composed of parents of children with a similar handicap can be a resource of great value during this crisis as weil as in the years that follow. When such groups are not available, parents can be placed in contact with a family that is effectively raising a
child with the same handicap or an adult who has successfully coped with it. Physicians should be aware of their own feelings regarding handicaps and of the effect these may have on efforts to hèlp parents. Address reprint requests to McCay Vernon, PhD, Department of Psychology, Western Maryland College, Westminster, MD 21157.
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
Bibliography Chodoff P, Friedman SB, Hamburg DA: Stress, defenses and coping behavior: Observations in parents of children with malignant disease. Am J Psychiatry 120:743-749, 1964 Gardner RA: The guilt reaction of parents of children with severe physical disease. Am J Psychiatry 126:636-644, 1969 Graham AB: Counseling parent and teacher regarding the effects of mild hearing loss. Trans Am Acad Ophthalmol Otolaryngol 80:71-78, 1975 Mindel ED, Vernon M: Out of the shadows and the silence. JAMA 220:1127-1128, 1972
Mindel ED, Vernon M: They Grow in Silence. Silver Spring, MD, National Association of the Deaf, 1971 Smith AG, Schneider LT: The dying child: Helping the family cope with impending death. Clin Pediatr 8: 13 1-134, 1969 V M: Psychological aspects of the diagnosis of deafness in a child. Ear Nose Throat J 52:60-65, 1973
emoo
ISSN: 0032-5481 (Print) 1941-9260 (Online) Journal homepage: http://www.tandfonline.com/loi/ipgm20
Counseling the parents of birth-defective children McCay Vernon To cite this article: McCay Vernon (1979) Counseling the parents of birth-defective children, Postgraduate Medicine, 65:3, 197-200, DOI: 10.1080/00325481.1979.11715093 To link to this article: http://dx.doi.org/10.1080/00325481.1979.11715093
Published online: 07 Jul 2016.
Submit your article to this journal
View related articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ipgm20 Download by: [Australian Catholic University]
Date: 24 August 2017, At: 15:16
Counseling the parents of birth-defective children
McCay Vernon, PhD
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
Consider What are two needs ofparents ofa child with a recent/y diagnosed handicap? What is an effective resource for physicians in counseling the parents ofa handicapped child? What alternative may be used when self-help counseling programs are not available?
Parental reactions to the diagnosis of a birth defect were discussed Iast month (page 183). This article gives some suggestions on how the physician can offer parents meaningful help in coping with this stressful situation. In most cases, parents of a birthdefective child desperately need counseling and education about how to cope with their child's handicap. Inevitably, they tum to their physician. This article provides sorne suggestions for aiding the parents of handicapped children in a manner that is effective and compassionate but that is also economical oftime. Counseling needs Parents of a child with a recently diagnosed handicap have two counseling needs. The first is to receive information, not just from a professional but from those living with a handicapped child and from those who themselves are handicapped. The second is to be able to express and work through the grief, fear, depression, anger, and other feelings connected with having a defective child. To meet these needs, the ideal arrangement is to have working together a sensitive person trained in group therapy, parents ofhandicapped children of widely varying ages, and successful handicapped adults. This combines the best of self-help approaches with the skills of conventional group therapy. Self-help groups Research concerning familles with birth-defective children, as weil as
experience from other areas of rehabilitation, clearly shows the effectiveness of self-help groups in providingparents withcounseling. For example, the organized group-therapy program of Alcoholics Anonymous is usually far more effective atrehabilitationfor alcoholism than is expensive individual psychotherapy. The same is true for other self-help organizations. The ideal time for parents to become involved with a self-help group is when they first fmd out that their child is handicapped. The opportunity to discuss feelings in an accepting, understanding environmentis crucial. Suchgroupsforparents ofhandicapped children alreadyexistin many areas. For example, mostcommunities of 10,000 or more population have an organization of parents of mentally retarded children. Placing the family in contact with such a group maximizes the chance that helpful counseling will be provided by intimately involved and concemed persons. The physician can be reasonably certain that the parents will receive excellent information on educational progra,ms that are available, as weil as other community resources. For parents of children with uncommon handicaps orthose living in rural areas, such groups may not be
continued
VOL 65/NO 3/MAACH 1979/POSTGAADUATE MEDICINE
197
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
Parents of a child with a recently diagnosed handicap have two counseling needs-information and t.,• abillty to express and work through the feelings connected with havlng a defective child.
available. In this situation, an alternative is to put parents in touch with a family that is effectively raising a chlld with the same handicap or an adult who bas successfully coped with it. Sorne ~elf-help groups have been formed and function as part of the comprehensive health service provided by large hospitals or clinics. Under these conditions, they come under medical direction. In other instances, self-help groups seek the counsel of a physician. As indicated earlier, establishment of self-help groups is not a major problem in larger urban areas. In rural areas or small towns, one solution is to have parent institutes where parents from a wide geographie area are brought in on a residential basis for a week of intensive counseling. This can often be done at state facilities serving handicapped children. Public health physicians in charge of children's services or special education professionals may be useful in sponsoring these institutes. For the physician who directs or serves as a consultant for parent
groups, comment regarding two co mm on mistakes is in order. First, the groups often have been composed only of parents of very young children whose defect bas been recently diagnosed. Thus, the experience and knowledge that could be provided by parents with older handicapped children bas been lacking. In a sense, this situation would be a little like Alcoholics Anonymous excluding those who have already been rehabilitated. It is far better to involve one or two parents who have successfully raised a handicapped child. Second, handicapped adults often have been excluded from these groups. For example, sorne counseling centers for parents of deaf children either have specifically excluded deaf parents or else have failed to provide sign language interpretation. The value is obvious of having in the counseling groups adults who have successfully coped with their handicap, yet they are almost always excluded from fullfledged membership. Instead, they are brought in only for brief inspirational testimonials. The physician's reaction
McCay Vernon Dr Vernon is professor ofpsychology, Western Maryland College, Westminster, a fellow in the American Psychology Association, editor of American Annals of the Deaf, and a member of numero us professional organizations. He bas authored over 200 books and articles. His interest in handicaps bas grown, in part, from his wife's childhood-onset deafness.
198
In discussing psychologie reactions to birth-defective children, the focus is often exclusively on parents. This approach ignores the physician's feelings in making the diagnosis of an irreversible handicap and in confronting the parents with this fact. Most physicians find this situa-
tion traumatic. A person who is committed to healing is understandably threatened when a disorder is found to be irreversible. While the physician's reaction may not be as intense or apparent as the parents' reaction, it should not be minimized if the total process of what happens at the time of diagnosis is to be understood. The physician may "let the parent down" at a time of great need as a consequence of his or ber feelings and lack of knowledge of behavioral consequences of a specifie handicap. The physician who cannot face the failure symbolized by an irreversible defect, or who does not have the facts or experience needed to discuss the behavioral consequences of the problem, may fail to tell the parents the implications of the child's handicap or what can be done. Or, out of misguided kindness and lack of knowledge, he or she may even extend false hopes. As a substitute for a frank, honest sharing of the full facts, the physician may imply that research will come forth with miraculous cures or may engender unrealistic expectations concerning prostheses or the outcome of compensatory training. Occasionally, the feelings aroused by the handicap may trigger authoritarian behavior or an omnipotent posture, with effects that are negative rather than supportive. These judgments may seem harsh, but they are based on years of clinical work and extensive study of parcontinued
VOL 65/NO 3/MARCH 1979/POSTGRADUATE MEDICINE
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
The physician who cannot face the ta il ure symbolized by an irreversible defect, or who does not have the tacts or experience needed to discuss the behavioral consequences of the problem, may ta il to tell the parents the implications of the child's handicap or what can be done.
ents of handicapped children. Physicians need to be aware of these problems to deal with them constructively. Summary Parents of a child who is diagnosed as defective face a crisis for which they are usually unprepared. They need an opportunity to work
through their intense feelings. In addition, they need specifie information about how to be of use to their child. Self-help groups composed of parents of children with a similar handicap can be a resource of great value during this crisis as weil as in the years that follow. When such groups are not available, parents can be placed in contact with a family that is effectively raising a
child with the same handicap or an adult who has successfully coped with it. Physicians should be aware of their own feelings regarding handicaps and of the effect these may have on efforts to hèlp parents. Address reprint requests to McCay Vernon, PhD, Department of Psychology, Western Maryland College, Westminster, MD 21157.
Downloaded by [Australian Catholic University] at 15:16 24 August 2017
Bibliography Chodoff P, Friedman SB, Hamburg DA: Stress, defenses and coping behavior: Observations in parents of children with malignant disease. Am J Psychiatry 120:743-749, 1964 Gardner RA: The guilt reaction of parents of children with severe physical disease. Am J Psychiatry 126:636-644, 1969 Graham AB: Counseling parent and teacher regarding the effects of mild hearing loss. Trans Am Acad Ophthalmol Otolaryngol 80:71-78, 1975 Mindel ED, Vernon M: Out of the shadows and the silence. JAMA 220:1127-1128, 1972
Mindel ED, Vernon M: They Grow in Silence. Silver Spring, MD, National Association of the Deaf, 1971 Smith AG, Schneider LT: The dying child: Helping the family cope with impending death. Clin Pediatr 8: 13 1-134, 1969 V M: Psychological aspects of the diagnosis of deafness in a child. Ear Nose Throat J 52:60-65, 1973
emoo
