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Children With Disabilities: Understanding Sibling Issues

NICHCY NEWS DIGEST
Number 11, 1988



Credits


Source

National Information Center
for Children and Youth with Disabilities



Contents

Abstract

Let the Good Times Roll

Family Stress Factors

"I Never Figured You Were Disabled"

Planning For The Future

Suggestions for Families

"Where is Marianne?"

Bibliographic Note


Forums

Learning and Other Disabilities


Related Articles

Having a Daughter With a Disability: Is it Different For Girls?

A Guide to Children's Literature and Disability


Abstract

For many families, raising a child with a disability or chronic illness poses many challenges. Some of these challenges focus on the relationship between the siblings in the family which influences the social, psychological, and emotional development of each child. The relationship between brothers and sisters in families that have a child with a disability or chronic illness is examined in this issue of NEWS DIGEST.

Many factors which affect sibling relationships are described, and research findings concerning siblings, one of whom has a disability or chronic illness, are reviewed. Guidelines and suggestions for parents and siblings, and siblings' suggestions for parents are discussed. Additionally, several different viewpoints about sibling relationships are presented from a sibling with a disability; two nondisabled, adult siblings who have a sister with a disability; and a parent of several children, the youngest with a disability. A support section concludes this issue, listing suggested readings and sibling support resources.

The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has a profound effect on a family. Children suddenly must adjust to a brother or sister who, because of their condition, may require a large portion of family time, attention, money, and psychological support. Yet it is an important concern to any family that the nondisabled sibling adjust to the sibling with a disability. It is important because the nondisabled child's reactions to a sibling with a disability can affect the overall adjustment and development of self-esteem in both children.

In any family, each sibling, and each relationship that siblings have, is unique, important, and special. Brothers and sisters influence each other and play important roles in each other's lives. Indeed, sibling relationships make up a child's first social network and are the basis for his or her interactions with people outside the family (Powell & Ogle, 1985). Brothers and sisters are playmates first; as they mature, they take on new roles with each other. They may, over the years, be many things to each other -- teacher, friend, companion, follower, protector, enemy, competitor, confidant, role model. When this relationship is affected by a sibling's disability or chronic illness, the long-term benefits of the relationship may be altered (Crnic & Leconte, 1986). For example, the child with a disability may have limited opportunities to interact with other children outside the family; thus, social interaction between siblings often takes on increasing importance.

Each child's personality and temperament play an important role in their response toward a sibling, including one with a disability. Although both positive and negative feelings exist in all sibling relationships, McHale and Gamble (1987) conclude, "...for school-age children and young adolescents, these relationships tend to be more positive than negative in their feeling tone. Furthermore, children with disabled siblings appear to have more positive and fewer negative behavioral interactions than do those with nondisabled siblings..." (p. 141). These positive aspects include higher levels of empathy and altruism, increased tolerance for differences, increased sense of maturity and responsibility, and pride in the sibling's accomplishments (Powell & Ogle, 1985).

Today, many areas have yet to be explored concerning siblings. Parents and professionals, for instance, need more information about sibling adjustment from the perspective of different family systems (Skrtic, Summers, Brotherson, & Turnbull, 1984). For example, how do different family compositions -- the single parent, adopted children, foster children, and families of different cultures -- affect sibling relationships? Powell and Ogle (1985) summarize the importance of studying siblings when they state: "Siblings have much to share; they have much to teach those who wish to help them. They can guide the actions of parents and professionals so that their needs can best be met." (p. 5).

Nondisabled Sibling Reactions and the Family Environment

Living with a brother or sister, including one with a disability, can be rewarding, confusing, instructive, and stressful. Siblings of a child with a disabling condition express a range of emotions and responses to that sibling, similar in most ways to the range of emotions experienced toward siblings who have no disability (Powell & Ogle, 1985). Children react toward a sibling with a disability with feelings of love, empathy, pride, guilt, anger, and support; the predominance and prevalence of these reactions have great impact on the levels of stress and coping ability of the sibling with a disability. The positive or negative nature of the relationships between siblings and among family members may be influenced by factors such as these:

  • the family's resources;
  • the family's lifestyle;
  • the family's childrearing practices;
  • the kind and severity of the disability;
  • the number of children in the family;
  • the age differences between children in the family;
  • the other stressproducing conditions that exist in the family;
  • the kinds of coping mechanisms and interaction patterns that exist within the family; and
  • the kind and quality of the support services available in the community.

Each child's reaction to having a sibling with a disability will vary depending on his or her age and developmental level. The responses and feelings of the nondisabled sibling toward the sibling with a disability are not likely to be static, but rather tend to change over time as the sibling adapts to having a brother or sister with a disability and copes with day-to-day realities. Preschool-aged siblings, for example, may feel confused, afraid, anxious, and angry about a brother or sister's ability or illness. All children are different; the intensity of a child's concerns, needs, and experiences will vary from sibling to sibling, as will a child's reaction to and interpretation of events. The younger the child the more difficult it may be for him or her to understand the situation and to interpret events realistically. Nondisabled siblings may resent the time their parents give to the sibling with a handicap and perceive it as rejection. They may wonder what is wrong with them that their parents love their sister or brother with a disability more. During the early years the nondisabled sibling may mimic the physical or behavioral actions of the child with a disability, or the nondisabled sibling may regress in behavioral development. Later on, he or she may be prone to extremes of behavior such as "acting out" or becoming the "perfect" child.

Elementary school-aged children may feel embarrassed or ashamed as they recognize differences between their sibling and someone else's brother or sister. They may worry about "catching" or developing the problem, and they may feel guilt because they themselves do not have a disability. They may also feel protective and supportive of their sibling, and this may trigger conflicts with peers.

Young adults may have future-oriented concerns. They may wonder what will become of their brother or sister with a disability. They may also be concerned about how the people they socialize with, date, and later marry will accept the brother or sister with a disability. Additional issues faced by young adults may include genetic counseling when planning their own families, and coping with anxiety about future responsibilities for the brother or sister with a disability or illness.

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Credits

NEWS DIGEST is published and disseminated three times a year. In addition, NICHCY disseminates other materials, and responds to individual inquiries. NICHCY materials and information services are provided free of charge. For further information and assistance, or to receive a NICHCY Publications List, contact NICHCY, P.O. Box 1492, Washington, DC 20013, or call 1-800-695-0285.

NICHCY would like to thank our Project Officer, Dr. Sara Conlon, at the Office of Special Education Programs, Office of Special Education and Rehabilitative Services, U.S. Department of Education, for her time in reading and reviewing this document. We also would like to thank Betsy Trombino, Florence Poyadue, Paula Goldberg, Dr. Patricia Place, Dr. Peggy Ahrenhold Ogle, and Dr. Patricia F. Vadasy for their valuable comments and suggestions. Finally, we would like to express our appreciation to Beverly Long, and Apple Computers, Inc., for their generous donation to the Project of the Macintosh SE and LaserWriter II NT used in the production of this document.

PROJECT STAFF
Project Director: Carol Valdivieso
Acting Deputy Director: Suzanne Ripley
Editor: Lana Ambler
CONTRIBUTING AUTHORS: Richard Horne, Patricia Schmieg, Patricia Place, Patricia McGill Smith, Jeanne Prickett, and Carol Valdivieso

This document is made possible through Cooperative Agreement #H030A30003 between the Academy for Educational Development (AED) and the Office of Special Education Programs, U.S. Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

The Academy for Educational Development, founded in 1961, is an independent, nonprofit service organization committed to addressing human development needs in the United States and throughout the world. In partnership with its clients, the Academy seeks to meet today's social, economic, and environmental challenges through education and human resource development; to apply state-of-the-art education, training, research, technology, management, behavioral analysis, and social marketing techniques to solve problems; and to improve knowledge and skills throughout the world as the most effective means for stimulating growth, reducing poverty, and promoting democratic and humanitarian ideals.

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