NEED FOR ACCURATE INFORMATION
Siblings need to have age-appropriate information about their brother/sister’s disability. If the information is not available or accurate, siblings may attempt to create their own explanations. Children’s magical thinking may lead them to believe that they caused the disability. They may be concerned that the problem is contagious or hereditary and need information that will accurately address their concerns. If families do not discuss the disability, children may also get the impression that the subject is taboo, limiting their ability to ask important questions.
Siblings may begin to feel embarrassed about how their brother/sister looks or behaves. As peer acceptance becomes increasingly important, siblings may feel self-conscious about having a family member who is “different.” They may feel ashamed and disloyal about this reaction, compounding their discomfort. Children need to be reassured that their feelings are normal. Families need to develop support systems within the community to promote acceptance and inclusion of the disabled child.
Siblings often have feelings of guilt that they are able to do things that their brother/sister cannot. They may limit their activities or deprive themselves for the sake of their disabled brother/sister. In addition, siblings often feel guilty when they feel or express anger towards their disabled brother/sister.
Feeling different, having a secret, being unable to find the words to describe their disabled brother/sister to friends can result in a sense of isolation. Children are helped when they have permission to be open about their brother/sister and have a ready language to explain the disability. Spending time with other families similar to their own decreases the sense of isolation.
All children seek their parents’ attention. When the disabled child requires more intensive parental involvement, siblings may feel neglected or less loved than their brother/sister. Resentment may also emerge because others make a huge fuss over the small accomplishments of a child with disabilities but have high expectations and demands on the nondisabled child. Children may seek their share of attention by acting out in school or at home.
PRESSURE TO ACHIEVE
Sometimes parents transfer their hopes and expectations from the disabled child to the nondisabled child. Siblings may feel strong pressure to achieve and fulfill their parents’ wishes. They may attempt to compensate for their brother/sister, which can become an additional stress factor for the sibling. Parents need to be aware of this possibility and work towards establishing realistic expectations for all the children in the family.
All members of a family need to participate in, and share the caretaking responsibilities for a disabled child. If the level of responsibility a sibling has conflicts with his/her own needs, feelings of anger and resentment may result. Siblings need time away from babysitting and other responsibilities in order to develop their own interests and social life. Offering siblings a choice about which roles they take on may give them a sense of control and is an opportunity to be part of the decision-making process.
CONCERNS ABOUT THE FUTURE
Siblings may have questions about what the future may bring for their disabled brother or sister and themselves. Some of their common questions include: What will my brother/sister be like as he/she grows up? Will the disability get worse? Will I be responsible for his/her care? Where will I get the money to pay the expenses? Will he/she need to live with me? Will I have to put him/her in a residential facility? Will I have a child with a disability when I have a family? As parents begin to struggle with these questions themselves, they need to be aware that their children share these concerns. When appropriate, children need to be included in discussions about the future, even if there are not definitive answers.