Most brothers and sisters have problems at times. They disagree, they argue, and sometimes they don't even like each other. But at other times they enjoy sharing experiences and take pride in each other's accomplishments. Is it any different when one sibling has a disability? Here's what some kids have said:
I never get to do my own thing. I always have to keep quiet so I don't disturb my sister.
Sometimes I'm embarrassed when people stare at us when my brother has a meltdown in the supermarket.
Some kids on our block don't know my name. They know me as Suzy's sister.
I get mad when my brother gets all the attention. Sometimes I need help too.
On the other hand:
Sometimes I really feel sad when I think my sister isn't getting better. But then I think I'm lucky to have her.
My sister has times when she cries a lot and doesn't want to get out of bed. But then she's the best one on the debate team.
My brother always used to wreck my things, even though he didn't mean to. But Dad and I made a plan together for him to help me put stuff away when I ask him to.
All siblings experience rivalry off and on, but having a sibling with special needs is a special challenge. Parents and kids, however, report that it's manageable and even has some benefits.
Siblings of children with special needs may have special feelings.
Many parents have to spend a great deal of their time attending to a child with special needs. As a result, the other children in the family may feel that their own needs have lower priority or they may have other worries. These reactions may be expressed in various ways. Some children and adolescents may
- Feel alone or neglected or jealous about the extra attention given to a child with special needs
- Wish that they too had problems to get more attention
- Worry that the disability is contagious and that they might catch it
- Become overly helpful or noncompliant in an effort to gain approval
- Try to ease their parents' burden by not making demands or feeling guilty
- Feel guilty about their own good health
- Feel embarrassed or resent having to involve their sibling with neighborhood friends
- Be afraid to express negative feelings to avoid adding stress to the family
- Worry about the care and future of their sibling
How can parents help?
Parents should demystify the diability and explain it to their children in appropriate language. Do it early and do it often, since children's understanding and reactions change over time. They need to know what the disability is and what to expect. They also need to know the weaknesses as well as the strengths of their sibling. As children grow their understanding and their reactions change.
What kids can understand:
- Preschoolers, before age 5
Children of this age, unable to adequately express their feelings verbally, are likely to express them through behavior. They are not able to understand the special needs of their sibling, but they will start to notice differences.
- Elementary school age children
At this age children become acutely aware of differences. They can understand explanations in proper terms. They might worry that the disability is contagious or if something is wrong with them too. They may feel guilty for having negative thoughts or feelings about the sibling as well as guilty for being not disabled. Some become overly helpful and well-behaved, and some become non-compliant to get attention. As in all sibling relationships, they experience conflicting feelings.
Teenagers are capable of understanding more in-depth explanations of the disability and may ask detailed and searching questions. They may wonder about how their social life is affected and where they fit in. Since conformity with the group is important, they may feel embarrassed about having a sibling who is different. Some may resent responsibility and worry about their sibling's future as well as their own.
Parents, focused on including their child with special needs as a full member of the family, may tend to give less attention to the needs of their other children. It is important, however, to try to give each a regularly scheduled special time with each parent alone and together.
When planning family activities, remember that not everything has to be done with the whole family. When an activity is too taxing for the special child, arrangements can be made for his care while the family is out.
Encourage each child to pursue own his/her own interests and give each one a special space for personal things.
Recognize each child's unique strengths and accomplishments and make sure they develop friendships outside the family. If a child is concerned about how a friend might react to his sibling, role play some possible conversations and explanations.
Have the special needs child do as much as she can for herself and any other chores she is able to do. In this way everyone has some responsibility, and children don't feel overburdened. The child with special needs should be subject to the same rules as the others whenever possible and appropriate consequences should to be imposed.
Find opportunities to compliment each child for being helpful and for being a team player.
Parents should consider enlisting the help of relatives when feasible. For example, siblings might spend time with other family members.
Parents should initiate periodic family discussions at a quiet time with no distractions. Providing a designated time would enable everyone to air feelings, positive and negative, and a way of talking about stresses such as peers, reactions of public, extra responsibilities and other accommodations. Kids should know it's okay to ask questions, and discussion should clarify any misinformation they may have picked up. Parents should try to maintain calm, modeling an attitude of coping, communicating and actively seeking ways to solve problems. Research shows that avoidance of these issues may lead to children's difficulties as adults in expressing emotions, in establishing relationships and vulnerability to depression.
Growing up with a sibling with special needs has benefits
Parents and children report that, compared to other families, they face more situations that demand flexibility and problem-solving. They also get more lessons in the components of character building—sensitivity, insight, ability to get along with others, tolerance of differences, compassion and patience, characteristics which will serve them well in other situations.
When to seek psychological help
Sometimes a peer group can be helpful for siblings. If a child feels isolated, angry, depressed or out of step with his peers, consider enrolling him in a group consisting of children in the same boat. In this way children gain the support of others with similar feelings and questions, and it may free them to ask questions and discuss feelings which are difficult to relate in the family.
If a child shows the warning signs of anxiety or depression, such as changes in eating or sleeping patterns, poor concentration, hopelessness, low self esteem, talk of hurting self, loss of interests, fear of separation, headaches or stomach aches, consultation with a mental health professional is indicated.
Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, edited by Donald Meyer, Woodbine House, 1997