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.