Down syndrome and Siblings

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.

Parents set the tone for sibling interactions and attitudes by example and by direct communications. In any family, children should be treated fairly and valued as individuals, praised as well as disciplined, and each child should have special times with parents. Thus, parents should periodically assess the home situation. Although important goals for a child with special needs are to develop feelings of self-worth and self-trust, to become as independent as possible, to develop trust in others, and to develop to the fullest of his or her abilities, these goals are also important to nondisabled siblings.

To every extent possible, parents should require their children with disabilities to do as much as possible for themselves. Families should provide every opportunity for a normal family life by doing things together, such as cleaning the house or yard; or going on family outings to the movies, the playground, museums, or restaurants. Always, the child with the disability should be allowed to participate as much as possible in family chores, and should have specific chores assigned as do the other children.

Caregiving responsibilities for the child with a disability or chronic illness should be shared by all family members. It is especially important that the burden for caregiving does not fall onto the shoulders of an older sibling. If there is an older sister, there is a tendency in some families to give her the primary responsibility, or an excessive amount of it. Today, however, more communities are providing resources to ease the family's caregiving burdens. Examples include recreation activities, respite care, and parent support groups.

Powell and Ogle (1985) present several strategies suggested by nondisabled siblings themselves for parents to consider in their interactions with their nondisabled children. These siblings suggest that parents should:

  • Be open and honest
  • Limit the caregiving responsibilities of siblings
  • Use respite care and other supportive services
  • Accept the disability
  • Schedule special time with the nondisabled sibling
  • Let siblings settle their own differences
  • Welcome other children and friends into the home
  • Praise all siblings
  • Recognize that they are the most important, most powerful teachers of their children
  • Listen to siblings
  • Involve all siblings in family events and decisions
  • Require the disabled child to do as much for himself or herself as possible
  • Recognize each child's unique qualities and family contribution
  • Recognize special stress times for siblings and plan to minimize negative effects
  • Use professionals when indicated to help siblings
  • Teach siblings to interact
  • Provide opportunities for a normal family life and normal family activities
  • Join sibling-related organizations

Children with special needs, disabilities, or chronic illness may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters, disabled and nondisabled, is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family.

This page is an excerpt from :NICHCY NEWS DIGEST #ND11, 1988 which is a copyright free publication.


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