How Do Siblings Feel?

From LIFELINE, Winter 1997/98, a publication of the
National Tay-Sachs & Allied Diseases Association
This page is not intended as medical advice.
Consult with your physician before undertaking any treatment or therapy.

All brothers and sisters have a wide range of feelings towards their sibling. The feelings of siblings of a child with special needs are also varied. They are in response to the adjustments families have to make, when one child requires a large portion of family time, attention and support. These may include: fear, guilt, embarrassment, loss and isolation. The information these children have to process, the feelings they have to deal with and the changes in the family structure can be overwhelming.

While it is difficult to make generalizations, there are recurring themes. Each child’s personality and temperament will play an important role in their response to changes within the family. No one brother or sister will experience all of the concerns discussed, but all will share some of them. Donald Meyer and Patricia Vadasy address the following themes in the book Sibshops, Workshops for Siblings of Children with Special Needs (1994).

A child may wonder whether he or she shares, or will share a sibling’s disease. The younger the child, the more difficult it may be to interpret events realistically. Preschoolers may need extra reassurances that they did not cause the disease. They also need to know that they can’t catch the disease the way they can catch a cold from a brother or sister. The younger child may become concerned that if they become sick with a common illness they will become like their sibling with special needs.

Siblings of children with special needs are more likely to experience guilt. They may feel they caused the disease by something they said, did or thought: they may experience survivor’s guilt; that is they may feel guilty about their own abilities and good health. They may feel guilty for having less than charitable feelings about their sibling and family. All children should be given an age-appropriate explanation about the disease so that they will not make incorrect assumptions. Parents need to acknowledge that having a brother or sister with such a disease may produce all kinds of feelings. Acknowledging that living with a sibling with profound special needs I sometimes difficult and stressful reflects reality and sends a message to the children that they can feel free to talk about their feelings with their parents.

There may also be guilt around care giving. Adolescents struggle with their own wishes for independence. Some may assume that they will not be able to leave home or go away to school because they have to help take care of their sibling. They need to know that their lives do not revolve around their siblings, and that they should be attentive to their own needs. At the same time, they need to know that in any family, members share some responsibility for each other and their household. A reasonable amount of responsibility can help develop a sibling sense of maturity; excessive demands can cost a sibling his or her childhood. While most children like to feel useful, the major burden for care giving should not fall onto their shoulders. These issues should be openly discussed in the family.

School-age children may feel embarrassed and confused as they recognize differences between their sibling and someone else’s brother or sister. They may get embarrassed by the unwanted attention the child, and consequently, the family receives. This is especially apparent when they are asked questions by friends, classmate and even strangers. Parents need to help them master and practice the social skills that will allow them to answer questions. Remember, most children go through stages when they are easily embarrassed by any difference in the family. During this time of raging conformity, especially in adolescence, the best strategy may be to give the child “space”, psychological and otherwise. Also, it is important to acknowledge their feelings. Luckily, for most siblings, embarrassment is transitory. They have a remarkable ability to reframe difficult situations in a more positive, empathic light.

A child’s disability or illness can cause siblings to experience feelings of loss and isolation. When there are only two children in the family, siblings may miss having a brother or sister with whom they can seek advice, share thoughts with, their hopes and their dreams. They may also long for the arguing! While it’s important to acknowledge this loss, it can also be helpful to reframe the relationship that does exist between the sibling and child with the disease and focus on what that offers.

When parents are consumed with a child’s disability or medical condition, brothers and sisters may feel neglected and isolated from their parents. Meyer and Vadasy describe that from the siblings’ perspective, the child with special needs becomes the sun in the family’s solar system. Although many children are realistic about the need for that child to have more attention, there can be some degree of envy about this. These feelings may cause some anger and then guilt about feeling that anger. Parents, overwhelmed by a child’s many needs, may be too exhausted or unable to recognize a siblings’ calls for attention. Young children may lack the capabilities to appreciate that their parents’ behavior is a response to the genuine needs of the child with the disease, rather than a lack of love for their other children. They may regress or exhibit negative behaviors to get attention. The use of respite care and other supportive services is helpful to both the parents and the other children in the family. The daily challenges in caring for an ell child can inhibit time to respond to the needs of other children in the home or for family fun. Using respite care, set aside special time with each child and provide opportunities for family activities.

Siblings often feel isolated from their peers. Like their parents, they need to connect to other siblings with similar challenges. For most parents, the thought of going it alone, without the benefit of knowing another parent in similar situation is unthinkable. Yet, this happens routinely to brothers and sisters. Research shows that peer-support programs reduces a child’s sense of isolation, and provides them with support and insight with the problems they face. To determine if there is a Sibshop, peer-support program in the locality, contact the Sibling Support Project at Seattle Children’s Hospital and Medical Center (206-368-4911), or your local children’s hospital or hospice program. In addition, libraries provide books and newsletters for siblings of children with special needs. The NNPDF Family Directory or the annual NNPDF Family conference are excellent resources for connecting the siblings in our families.

Siblings also need to perceive their home as a welcoming environment for the friends in their life. Children may vacillate between conflicting loyalties to friends and family. They should be encouraged to participate in extracurricular and social activities that pertain to their unique interests and skills.

Some siblings may feel that they need to compensate by being a “perfect” child. While parents may be the source of some of the pressure they experience, it may be that siblings place much of the pressure on themselves. The motivation may be survivors guilt, positive parental attention or a way for the well child to counteract the profound loss a parent has experienced with their special needs child. Some siblings report that they would never want to contribute to anymore disappointment and worry for their parents.

While siblings of children with special needs have unique concerns, the current research literature does not describe them as an at-risk population. Like their parents, the vast majority do well despite the challenges they face. Helen Featherstone (1980) asserts that siblings need support and understanding for their feeling, freedom to work the family’s difference into their lives in ways acceptable to them, and a chance to talk to other children who share some of the same problems.

Meyer and Vadasy stresses that how a family handles the dissemination of information about the disability or illness will greatly influence a sibling’s adjustment to the disease. Information and communication within the family can promote understanding and prevent misconceptions. All children will have age specific questions and concerns. Some children will keep their concerns to themselves even if parents communicate they are open to answering them. Some are reluctant to ask questions for they worry it will cause their parents more distress and sadness. If your child does not ask questions, don’t assume they have no interest. They recommend that parents be proactive, and offer information frequently, preferable in small doses. Parents can provide children with written materials and include siblings in visits with service providers. Mostly, parents need to ensure they make time for all their children.

While siblings of children with special medical and developmental needs have unique concerns, research indicates they have often developed unique strengths. Many of the insights gained and qualities developed are invaluable, even if they were hard-earned. Brothers and sisters are often well-adjusted and characterized by greater maturity and responsibility than typical of their peers. Even with their increased responsibilities, their successful handling of talks assigned them can increase their sense of maturity and pride. They learn from their families determination, patience, resourcefulness and other qualities that can benefit their lives. Brothers and sisters frequently mention how their siblings and families have influenced their perceptions, philosophies and values. They appreciate aspects of life that their peers may take for granted. They value compassion, loyalty and unconditional love. They appear to have a greater tolerance and acceptance of differences and a dedication toward altruistic goals.

All of us who have children with a degenerative disease should remember that we are ordinary people dealing with extraordinary challenges. Looking at ourselves, we may reflect that despite all the pain we can survive and eventually thrive. In each of our families, our children’s resilience will mirror our own.


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