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Living with difference: families with dwarf children.

Living with Difference: Families with Dwarf Children

The following excerpt from Appendix B: Impact of Child Disability and Physical Difference on the Family has been reprinted with permission from the publisher, Praeger Publishers. Although written for professionals, this book has valuable information for parents.

Cummings et al. (1966) noted that most parents are profoundly affected by the attributes of their children. Variations in physical or mental characteristics that are considered "deficiencies" or "handicapping" conditions may seriously influence parents' perceptions of their own identity and self-worth, bringing forth expressions of anxiety, loss, and depression. Parents' own fulfillment and evaluations of themselves thus may be at stake in the persons of their children and the normalcy for the family.

[I]n a remarkable study of the mothering of thalidomide children, Roskies (1972) presented a psychosocial working model for the presentation and analysis of her data. Stated Roskies:

We formulated, then, a working model in which, basically, we hypothesized that the birth of an obviously defective child could create a very specific type of crisis. The essence of the crisis lies not only in the narcissistic injury to the parent, or the need to mourn the wished-for normal child (Solnit and Stark, 1961), but also in the fact that the existing child embodies a basic contradiction. To put it in its crudest terms, living children are taken home, caredfor, loved, and identified with, while dead children are buried. The child who is living but defective is an unknown combination of the two. Thus, immediately, the mother is confronted by the dilemma of deciding whether her child is normal enough to induce the mutuality of mother and child, or whether he is so defective that he no longer arouses the emotions and responses habitually aroused by a child....

In common with mothers of all children, the course of development exacts a continuous process of adaptation and readaptation of a changing mother to a changing child. In this sense the rearing of a disabled child resembles the rearing of a normal child. But for the mother of the disabled child, the normal developmental crises are intermingled with an additional continuous crisis. The unclear and constantly changing amount of normality and abnormality embodied in the handicapped child makes the mothering of such a child an adventure in two different cultures. At times, the rules of the culture of normality are more relevant, while at other times the rules have to be taken from the culture of abnormality. Often it is difficult to predict in advance which would be most relevant. And frequently the choice involves an overt conflict between two equally valid but incongruent possibilities.
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Title Annotation:excerpt
Author:Ablon, Joan
Publication:The Exceptional Parent
Date:Apr 1, 1989
Words:439
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