The college-age daughter of a friend of mine once told me how, when she was growing up, she was jealous of the extra attention that her twin brother got from their parents. She was angry that she would be punished for misbehavior that he could get away with.
But she couldn’t express those feelings directly to her parents. She was healthy; her brother was mentally retarded and had cerebral palsy and other neurological problems.
Only recently have health-care and child development professionals looked closely at what it’s like to be the sibling of a child who is emotionally, mentally, or physically disabled. They have found that the relationship is far more complex than they had anticipated, but that a few simple things can help both the children and the parents make the most of the situation.
Psychologists used to assume that having a child with a disability at home was damaging to the other members of the family. Recent research has shown that while it adds to stress, it doesn’t necessarily lead to damage. It can lead instead to creative problem solving and personal growth. Children who have disabled siblings can gain a greater appreciation of the value of different kinds of people and become more understanding of human differences.
To handle the stress successfully, children need increasing amounts of information about their disabled siblings and other family issues. This information has to be presented in ways that match their own developmental needs and abilities. A kindergartener, for example, may require reassurance that he didn’t cause the sibling’s problem, especially if the disabled child is younger. He may also need to know that he can’t catch a disability the way he can catch a cold from a brother or sister.
Older school-age children often have to explain their sibling’s disability to friends and classmates. They need to practice and master the social skills that will allow them to answer children’s and adults’ questions, even when they’re unspoken. Adolescents, who are struggling with their own wishes for independence, need to know what the family’s long-term plans are.
This may be the first generation in which people with disabilities are routinely outliving their parents. Brothers and sisters sometimes feel that they will not be able to leave home or even go away to college because they may wrongfully assume that they’ll spend the rest of their lives caring for the sibling who has special needs.
Having a disabled sibling can distort the natural rivalry between brothers and sisters. Competition for attention and individual recognition takes on a different tone, not only at home but also at school.
Siblings of disabled children are often asked to assume responsibilities years before their classmates are. Some requests are made by their parents, like asking them to baby-sit for their brother or their sister every day after school. Other duties are self-imposed and based, in part, on how they view their roles within the family.
Many of these children feel a strong pressure to achieve. They need to be the scholar, the athlete, or the prom queen because they feel that their parents are disappointed by what their other child cannot achieve. This added responsibility can breed resentment, at least temporarily. My friend’s daughter remembered being upset at her parents because spending time with her brother after school meant that she could participate in only a few extracurricular activities. She felt they were taking away her rights as a child. As she grew older, however, she began to see that her parents were the ones who stayed with him during the weekend and got up with him in the middle of the night. She had only seen what she was giving up.
Helping the Healthy Child
A child who has an emotionally, mentally, or physically disabled brother or sister often feels isolated, especially in preadolescence, when fitting in with a peer group is of growing importance. Although social service agencies have long provided support groups for parents, only recently have such groups been available to siblings.
Unlike adult groups, children’s groups tend to focus more on social activities than on talk. Sibling support groups help those children’s self-esteem and give them a forum for sharing feelings that they may be uncomfortable telling their parents. They’re well worth looking into.
Here are a few other things that parents should keep in mind:
- Arrange to spend time alone with each of your children. This is important for all families, but especially for those in which one child has some special needs. It guarantees some time, even if it’s only five minutes a day, during which your children don’t have to compete with each other for your attention and love.
- Talk to all your children about the perceived unfairness of the disabled child’s getting more time and attention. This lets all your children know that you recognize and respect their needs.
- Acknowledge your children’s feelings and fears even if they’re not directly expressed. Many children worry that there’s something wrong with them if they’re jealous or angry at their brother or sister. Let your children know that it’s OK to have negative feelings toward the disabled brother or sister: Such thoughts don’t make them bad kids, and you won’t reject them because they have those feelings.