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 kindergartner, 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 bother or sister: Such thoughts
don't make them bad kids, and you won't reject them because
they have those feelings.
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