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What’s Needed by Siblings of Special-Needs Children?

What happens to siblings when there’s a child with special needs? Family life changes dramatically and the needs of the siblings are overshadowed by the intensive focus on the child with the most obvious physical, mental, or emotional needs.

Whether you work with parents, with special needs children or with the healthy (or “typically developing”) siblings, you can help families recognize and meet the needs of all their children.

As a professional, you can provide valuable guidance to parents who may be so overwhelmed with daily crises that they find it difficult to make time for anyone other than the special-needs child. You can also suggest resources that provide respite so that healthy children are not overburdened and have a chance to be kids.

This article provides an overview of sibling relationships in families with children who have special needs or life-threatening illnesses. Our goal: to help parent educators, counselors, medical professionals and others help parents understand the concerns of the other children, both when families are young and as the children all become adolescents. We will discuss how siblings need:

* Accurate, age-appropriate information regarding the special need;

* Attention to their developmental and emotional needs;

* Recognition of their accomplishments and time alone with their parents; and

* Help with peer relationships.

We will conclude with a comment on how you as a professional can help the entire family.

A family with a special-needs child faces intense time and emotional demands. This is particularly true when a special-needs child is at home full-time. Even if this child is enrolled in school or another daytime program and there is extra support from extended family or friends, the care is substantial and impacts every aspect of family life.

In Siblings of Children with Autism: A Guide for Families (Woodbine House, 2003), Sandra L. Harris and Beth A. Glasberg stress that siblings must have adequate information about a disability or illness. Without it, they warn, children will create their own explanations, or worry needlessly about whether they harmed their sibling.

Kids who aren’t given accurate information about siblings’ health issues may overly identify with the sibling. Children who misunderstand the health issue or its cause may also feel guilty that they were “spared.” And, says Don Meyer, who heads Seattle’s Sibshop Project, without adequate information, siblings may believe they share—or will develop—the problem.

When parents discuss the health condition with their other children, it is imperative that they be calm. If necessary, says Mary McHugh in Special Siblings: Growing Up with Someone with a Disability (Paul H. Brookes Publishing Co., 2003), parents should rehearse until they can talk without becoming upset.

It is also important that this information be age-appropriate. Just as we provide sex education with increasingly more sophisticated and more detailed terms as children mature, so should special needs be discussed with increasingly more complex language. These conversations need to be repeated as kids’ ability to understand and retain information improves—and parents need to initiate these discussions. This is especially true if families are separated even for short periods; the healthy child who is left when parents accompany a sick child to a medical facility needs honest answers about how treatment is progressing.

Parents need to be reminded that children may be afraid to ask questions or report problems they are having with or because of the special needs child: they may not want to upset their parents or they may be ashamed of their own feelings of anger, jealousy or resentment.

The siblings’ need to grieve must also be recognized, as McHugh points out. Not only did she and others like her miss out on the love and attention they craved as children, “We weren’t allowed to grieve for our siblings who were born with a disability. The brothers and sisters who can’t hear us or see us or play games with us. We were told, ‘Think how lucky you are . . .’

Long-term, being unable to discuss a special-needs situation may cause several problems. The siblings may grow up denying their emotions. Their actions may be inconsistent with their feelings: for example, a child might act as if he wants no affection, when he actually aches to have his emotions recognized. Or, as McHugh notes, siblings may never get over the hunger for love. “How I wish that my parents had picked me up, hugged me, and said, ‘We’re worried about Jackie right now, but we love you very much . . .’ Because they didn’t know how to do this, I crave love now. I need people to like me. I keep looking for that love and approval, the attention and understanding that I wanted from my parents.”

Kids who are not allowed to demonstrate grief, anger or jealousy may have difficulty in their relationships with others, including the sibling with the disability; be vulnerable to depression and even suicide; and may express their anger with anorexia, bulimia or other inappropriate ways, McHugh adds.

Besides discussing health issues and grief, parents need to acknowledge the legitimacy of every child’s need. Meeting these needs may mean that the entire family does not participate in every family activity or trip.

Harris and Glasberg point out that some parents are determined to always include a special needs child, determined to signal that this is a full member of the family. In practice, this doesn’t always work. If one child cannot attend summer camp, the other children shouldn’t be denied the opportunity to go. Just as a toddler might be left home when the family attends a concert, so might parents select which activities a special-needs child can participate in appropriately. This is especially true when the activity—say, the concert or a ceremony—involves another child. These events also require parents to plan ahead, to ensure that trustworthy respite care is available. Meyer tells of situations in which parents never attended a healthy child’s activities—even a high school graduation—because no caregiver had been arranged.

Finally, parents must ensure that a healthy child is pursuing his or her interests, not striving to achieve in areas that are important primarily to the parents. Some kids, reminds Meyer, feel compelled to excel to compensate for what the special-needs child cannot achieve. As McHugh recalls, “We could never complain. We could never cause any trouble . . . We had to be good. Our parents had enough problems. Think how monstrous it would be to add to their constant worry, to their infinite sorrow because they had a child who was not ‘perfect.’

Experts also emphasize the importance of each child—in every family—having separate time with each parent and with the parents together. This might be as simple as a bedtime chat with a different parent each night or an occasional outing alone with both parents. Healthy kids who don’t get enough attention may end up discipline problems, because they learn that acting out is one sure way to get noticed.

Especially when children are young, parents need to be prepared to handle fear, anger and possibly aggressive behavior. They have what may seem to be the overwhelming challenge of dealing with a special-needs child at the same time they are comforting or protecting a sibling who has been frightened or hurt. If the special-needs child has grabbed toys or destroyed belongings, the parent needs to know how to help the victimized sibling describe his anger. The parent also needs to empathize with the wronged child and, to the extent possible, impose consequences on the other child. This might mean a time-out, cleaning up a mess or paying for the replacement of an item. Whenever possible, special-needs children should be subject to the same rules as the other children.

As healthy children grow toward adolescence, they should be able to join clubs, attend sleepovers and develop friendships of their own. Parents need to ensure that these kids don’t have so many chores or child-care tasks that they cannot explore interests outside the home. When they graduate from high school, they should be encouraged to pursue their own dreams. Parents should be sensitive to the possibility that teenagers may feel obliged to stay at or near home to provide emotional or physical support for parents and the special-needs child.

Another issue is fitting in with friends. As kids near adolescence and rely more on peers, they become vulnerable to the comments others make. Comments about health conditions can be particularly hurtful. Parents need to be aware of how easily young people are embarrassed in front of their friends. They may want to practice how kids can respond to such comments as, “Your brother’s a dummy” or “Your sister looks really weird bald.”

Besides sensitizing parents to these issues, you can be a resource. Even though you cannot solve problems that often accompany a challenging health issue—including marriages breaking up and serious financial concerns—you may be able to help a parent improve daily family life. Whether your responsibility is the healthy child or the special-needs child, you as the parent educator, school counselor or other professional can suggest sources of respite and counseling.

Louise Felton Tracy, a social worker and retired middle-school counselor, points out that a counselor can refer a child with mental, physical or behavioral problems to services such as after-school care. Help may also be available through the county health department, groups affiliated with the child’s illness or disability, parent support groups, church groups, friends or extended family. Perhaps most important, because the counselor is not overwrought as the parent may be, the counselor may be able to more effectively communicate with teachers and advocate for both the special-needs child and the siblings.

If you work in a school, you may be able to arrange for either or both children to see a district psychologist or counselor. This professional may be able to help the special-needs child modify his behavior and provide the typically developing child with information, advice—or a safe place to vent.

You can also refer parents and healthy children to programs such as Meyer’s Sibshop Project (www.thearc.org/siblingsupport, 206-297-6368), which has been used as a model for hundreds of sibling support groups across the U.S. Originally developed for siblings of children with developmental disabilities, Sibshop has been adapted for use with brothers and sisters of children with other special needs, including cancer, hearing impairments, epilepsy, emotional disturbances and HIV-positive status. It is also used with children who have lost family members.

Most of all, says Tracy, you as the professional can listen. The occasional hour you spend with an overwhelmed parent may make a significant difference in how she can help her children.

Written by Linda Carlson and first published in PEP Talk. Copyright Parenting Press 2004. Reprinted here courtesy of Parenting Press, www.ParentingPress.com/peptalk.html

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Last updated March 20, 2015