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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.
This page is an excerpt from: NICHCY NEWS DIGEST #ND11, 1988 which is a copyright free publication.
Strategies to Promote Healthy Family Relationships
Be open and honest - explain issues related to Down syndrome as early as possible.
Brothers and sisters often prefer to avoid a single "big" conversation and instead have a continuing dialogue as new questions and concerns emerge. If children shy away from bringing up the topic, parents can help by periodically asking them if they have any questions.
Allow siblings to express negative feelings.
Like siblings of any child, brothers and sisters of children with Down syndrome will experience frustrations and negative emotions; parents should know these feelings are generally temporary and allow children the space for expression.
Recognize that siblings may experience difficult moments.
Parents can help prepare siblings to handle embarrassing or upsetting situations, such as scenarios during which people stare at or make fun of their sibling. They should honor a child’s need to establish distance from a sibling with a disability when out in public. This especially comes into play during the preteen years when the need to "fit in" peaks.
Limit caregiving responsibilities.
While assigned duties make siblings feel helpful and capable, most siblings want those responsibilities to be limited. Siblings often say they don't always want to be available for babysitting, for example. Nurses should remind parents that siblings are children first, not substitute parents. Limit responsibilities to help avoid feelings of pressure, resentment, and guilt.
Recognize that each child in the family is unique.
Brothers and sisters of children with Down syndrome are quick to point out that they also need attention and that they want their accomplishments to be acknowledged. Encourage children to reach
their full potential without feeling the need to "compensate"' for a sibling with Down syndrome.
Be fair.
Children often say parents allow children with Down syndrome to "get away with more." They want to see their parents consistently set and enforce limits for acceptable behavior. Parents also should allow brothers and sisters to have their own friends and interests and to do so without guilt.
Take advantage of support for siblings.
Brothers and sisters of children with Down syndrome often are relieved to talk to peers with whom they can share their experiences, and to voice both positive and negative feelings. There are many books for children and teens about sibling and disability issues; the National Down Syndrome Congress has a list available and also the downsyn.com site.
Recognize that parents need support, too.
During workshops, many siblings comment that their parents should talk with other parents of children with Down syndrome and learn to "relax more and worry less." When parents cope effectively, their children benefit, too.
Source: Children's Hospital Boston
Additional Articles:
What’s Needed by Siblings of Special-Needs Children
When Special Needs Spark Sibling Rivalry
Help For Siblings Of Children With Special Needs
Siblings of Children with Disabilities Have Special Needs Too
What the Other Children are Thinking
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