Children with Disabilities: Understanding Sibling Issues

Introduction

The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has a profound effect on a family. Children suddenly must adjust to a brother or sister who, because of their condition, may require a large portion of family time, attention, money, and psychological support. Yet it is an important concern to any family that the non-disabled sibling adjust to the sibling with a disability. It is important because the non-disabled child’s reactions to a sibling with a disability can affect the overall adjustment and development of self-esteem in both children.

In any family, each sibling, and each relationship that siblings have, is unique, important, and special. Brothers and sisters influence each other and play important roles in each other’s lives. Indeed, sibling relationships make up a child’s first social network and are the basis for his or her interactions with people outside the family (Powell & Ogle, 1985). Brothers and sisters are playmates first; as they mature, they take on new roles with each other. They may, over the years, be many things to each other — teacher, friend, companion, follower, protector, enemy, competitor, confidant, role model. When this relationship is affected by a sibling’s disability or chronic illness, the long-term benefits of the relationship may be altered (Crnic & Leconte, 1986). For example, the child with a disability may have limited opportunities to interact with other children outside the family; thus, social interaction between siblings often takes on increasing importance.

Each child’s personality and temperament play an important role in their response toward a sibling, including one with a disability. Although both positive and negative feelings exist in all sibling relationships, McHale and Gamble (1987) conclude, “…for school-age children and young adolescents, these relationships tend to be more positive than negative in their feeling tone. Furthermore, children with disabled siblings appear to have more positive and fewer negative behavioral interactions than do those with non-disabled siblings…” (p. 141). These positive aspects include higher levels of empathy and altruism, increased tolerance for differences, increased sense of maturity and responsibility, and pride in the sibling’s accomplishments (Powell & Ogle, 1985).

Today, many areas have yet to be explored concerning siblings. Parents and professionals, for instance, need more information about sibling adjustment from the perspective of different family systems (Skrtic, Summers, Brotherson, & Turnbull, 1984). For example, how do different family compositions — the single parent, adopted children, foster children, and families of different cultures — affect sibling relationships? Powell and Ogle (1985) summarize the importance of studying siblings when they state: “Siblings have much to share; they have much to teach those who wish to help them. They can guide the actions of parents and professionals so that their needs can best be met.” (p. 5).

Non-disabled sibling reactions and the family environment

Living with a brother or sister, including one with a disability, can be rewarding, confusing, instructive, and stressful. Siblings of a child with a disabling condition express a range of emotions and responses to that sibling, similar in most ways to the range of emotions experienced toward siblings who have no disability (Powell & Ogle, 1985). Children react toward a sibling with a disability with feelings of love, empathy, pride, guilt, anger, and support; the predominance and prevalence of these reactions have great impact on the levels of stress and coping ability of the sibling with a disability. The positive or negative nature of the relationships between siblings and among family members may be influenced by factors such as these:

• the family’s resources;
• the family’s lifestyle;
• the family’s child-rearing practices;
• the kind and severity of the disability;
• the number of children in the family;
• the age differences between children in the family;
• the other stress-producing conditions that exist in the family;
• the kinds of coping mechanisms and interaction patterns that exist within the family; and
• the kind and quality of the support services available in the community.

Each child’s reaction to having a sibling with a disability will vary depending on his or her age and developmental level. The responses and feelings of the non-disabled sibling toward the sibling with a disability are not likely to be static, but rather tend to change over time as the sibling adapts to having a brother or sister with a disability and copes with day-to-day realities. Preschool-aged siblings, for example, may feel confused, afraid, anxious, and angry about a brother or sister’s disability or illness. All children are different; the intensity of a child’s concerns, needs, and experiences will vary from sibling to sibling, as will a child’s reaction to and interpretation of events. The younger the child the more difficult it may be for him or her to understand the situation and to interpret events realistically. Non-disabled siblings may resent the time their parents give to the sibling with a handicap and perceive it as rejection. They may wonder what is wrong with them that their parents love their sister or brother with a disability more. During the early years the non-disabled sibling may mimic the physical or behavioral actions of the child with a disability, or the non-disabled sibling may regress in behavioral development. Later on, he or she may be prone to extremes of behavior such as “acting out” or becoming the “perfect” child

Elementary school-aged children may feel embarrassed or ashamed as they recognize differences between their sibling and someone else’s brother or sister. They may worry about “catching” or developing the problem, and they may feel guilt because they themselves do not have a disability. They may also feel protective and supportive of their sibling, and this may trigger conflicts with peers.

Young adults may have future-oriented concerns. They may wonder what will become of their brother or sister with a disability. They may also be concerned about how the people they socialize with, date, and later marry will accept the brother or sister with a disability. Additional issues faced by young adults may include genetic counseling when planning their own families, and coping with anxiety about future responsibilities for the brother or sister with a disability or illness.

Family stress factors

The birth of a child with a disability, or the discovery that a child has a disability, can produce stress among family members. Stress can also be caused by a number of ongoing factors, or by special circumstances. Siblings need an explanation for the tensions within the family and the cause of the tensions.

Some families are stressed by the amount of financial resources required to meet the needs of the child who has a disability. Some parents may expect non-disabled siblings to accept the brother or sister with a disability as “normal.” This expectation can lead to internalized feelings of anxiety and jealousy which the non-disabled sibling may be reluctant to voice. The parents, in turn, may fail to recognize the child’s unhappiness and may deny that a problem exists. During an interview with the Parent Advocacy Coalition for Educational Rights Center, Inc. (PACER), Beth, a young sibling, offered parents some sage advice:

“I think… I’d want them to understand that sometimes siblings are going to get jealous of the extra help and attention that a brother or sister who’s handicapped receives. Parents shouldn’t get mad about the jealousy or make the kids without a handicap feel too guilty about it if sometimes they resent the extra attention. Parents have to sit down and talk to the brothers and sisters who are non-handicapped about what the handicap really means. Kids don’t automatically understand it by themselves” (Binkard, 1987, p.5).

Non-disabled siblings may feel obligated to compensate for the child with the disability, to make up for that child’s limitations. They may be acting as a surrogate parent, assuming more responsibility than would be usual in the care of a family by providing their parents with assistance and support, which they otherwise might not have, in the care of the child with a disability. The non-disabled child may experience jealousy because he or she may be required to do family chores, whereas, the sibling with a disability is not required to do them — despite the fact that the sibling with a disability may be unable to do them, or would have great difficulty doing them. The non-disabled sibling may resent having to integrate the sibling with a disability into the neighborhood peer group, and may experience or perceive peer rejection because of having a sibling with a disability. Finally, the non-disabled sibling may feel embarrassment because of a sibling’s physical characteristics or inappropriate behavior. Essentially, parents, other adult family members, and professionals should realize that non-disabled siblings need special understanding, attention, support and recognition of their unique contributions to the family system (Powell & Ogle, 1985).

Siblings with disabilities, on the other hand, also experience stress as family members. These common stresses include frustration at not being able to make themselves understood; unhappiness at being left to play alone; irritation over constant reminders about everything; withdrawal because of lack of social skills; low self-esteem; and anger resulting from an inability to do things as easily and quickly as their non-disabled brothers and sisters. Through it all, with understanding and support, there are usually many positive interactions and normal sibling give-and-take situations from which each learns and matures.

When parents have a double standard for disabled and non-disabled children, conflicts can arise. Even though the child with the disability, in fact, may need and receive more parental attention, the amount given may be perceived as unfair by non-disabled siblings. Some parents, on the other hand, may tend to overindulge the normal sibling in an effort to compensate for a brother or sister with a disability. The normal rivalry between all siblings may cause the non-disabled sibling to perceive incorrectly that the parents favor or love best the sibling with a disability. Mary expressed the resentment she feels when her brother is dealt with lightly in comparison to her punishments:

“Non-handicapped kids can get pushed aside when their brothers or sisters have handicaps. Andrew seems to get help naturally — it’s like attention to his needs is “built into the system.” I’m the bad one, but he can do no wrong. He makes all the messes, but I get into trouble if I don’t empty the dishwasher.” (Binkard, 1987, p.10)

The importance of information

Unlike their parents, siblings may have no knowledge of life without a brother or sister with a disability (Featherstone, 1980). McKeever (1983) tells us that siblings generally are poorly informed about disabilities. Yet siblings’ needs for information may be as great, or greater than those of parents, because of their identification with their brother or sister with a disability. It is important to bear in mind that they have limited life experiences to assist them in putting a disability into perspective (Featherstone, 1980). Parents should respect the non-disabled siblings’ need to be recognized as an individual who has concerns and questions as well as his or her right to know about the disability. Non-disabled siblings may require information throughout their lives in a manner and form appropriate to their maturity.

For many siblings, anxiety-producing feelings often are not expressed in day-to-day family interactions and discussions, and are shared even less at school. These internalized feelings complicate sibling relationships, for children need to vent their emotions. Children should be given an explanation for their sibling’s problems so that they will not make incorrect assumptions.

Parents and professionals need to be aware that there may be a gap between the non-disabled sibling’s knowledge and actions. A non-disabled sibling may be able to rationally explain a brother’s or sister’s disability to inquiring friends or neighbors, but may still exhibit temper tantrums over the same sibling’s actions in the home.

Most importantly, the need for information and understanding does not have to be addressed solely by the parents. A child’s disability is a concern which should be shared by parents, helping professionals, and society. For example, some progressive clinics and hospitals have designed programs that include siblings from the beginning. These programs offer Family Support Groups which bring entire families together as a means of sharing information and mutual support.

It is important for educators to be sensitive to non-disabled siblings’ feelings and needs. Educators can do much to promote positive sibling interactions as well as acceptance of disabilities in all children. During the school years, especially the early years, teachers can help to promote sibling awareness and interaction by providing opportunities for siblings to learn about disabilities. For example, conducting a “sibling day” or a sibling workshop can be an excellent way of introducing siblings to a variety of disabilities. A “sibling day” can be held on a school day or on a weekend.

On this day, activities can include a presentation by “Kids on the Block,” disability simulation games, sign language instruction, and sharing positive experiences about having a sibling with a disability. Siblings who are not disabled might be interested in seeing and/or participating in some of the unique activities in which their brothers or sisters with disabilities participate while in school. For example, siblings of students with orthopedic impairments might see a physical therapy room and go through activities a student might perform in physical therapy. Siblings of students with hearing impairments might learn a song or poem in sign language.

Information puts fears into perspective. In most instances, simply knowing the facts about a disability or chronic illness takes away the sting of embarrassment, as well as uncertainty and fear. While embarrassment can and does occur in many situations over the years, knowledge can help one cope.

Ask parent groups, social workers, therapists, doctors, teachers, or counselors about the availability of support groups and other sibling resources in your area.

The impact on a sibling with a disability or chronic illness

Most of the sibling research has focused on the effects of a child with a disability or chronic illness on non-disabled siblings. Also important is the influence of the non-disabled sibling on the child with a disability or chronic illness. Crnic and Leconte (1986) report that the non-disabled sibling’s impact upon the child with a disability may vary across the family’s life. While very little work has been done in this area, researchers do stress the reciprocity of sibling relationships.

Planning for the future: Sibling concerns

Planning for the future raises many important issues for the family of a child with a disability. Powell and Ogle (1985) note that the most challenging of these dilemmas is the care of the adult sibling who has a disability. Even though non-disabled adult siblings have lives (and often families) of their own, they face unusual, additional responsibilities because of their unique relationship with their brother or sister with a disability.

The amount of responsibility that adult non-disabled siblings assume for their adult sibling with a disability varies with individuals and with circumstances. It is dictated by a consideration of family and job responsibilities, personal choice, and available community support.

Perhaps the most challenging issue families face is, on the one hand, encouraging and fostering the independence and self-determination of the person with a disability and, on the other hand, facing the reality that, at some level, assistance may be necessary.

Suggestions for families

When planning for the future of the sibling with a disability, you should consider such things as mobility, social and communication skills, education, and the individual’s own ideas about where to live and work. Even after careful planning and the appointment of a guardian or co-guardians, plans should be made for emergencies. A file should be kept in a safe place, known to all family members. The following ideas should be addressed when making future plans and the information should be included in this accessible file:

1. Develop financial plans for future care. If the family is considering establishing a trust for the family member with the disability, it should consider the incomes of the children in the family, including the sibling with a disability. Make a will only with an attorney experienced in devising wills for those who have an heir with a disability. Inheritances must be treated with caution. It is especially important to investigate the continued eligibility for certain social services if assets from an estate, pension, or life insurance are left to the child with a disability.
2. Know your state’s laws regarding guardianship and independence. Do not assume that you as parents will automatically remain your child’s guardian when he or she reaches the age of majority in your state. Establish whether the sibling with a disability requires no, partial, or full guardianship. This information should be in writing, and, if possible, make contingency plans in case the first-choice guardian is unable to assume that role. Be aware of the consequences in your state of not having a guardian appointed.
3. Non-disabled siblings should know where to access the needed educational, vocational, and medical records of the disabled sibling, and be ready to anticipate his or her changing future needs.
4. Families should consider the future health and care of the disabled child. Parents should document where he or she can receive medical care and the financial resources and arrangements necessary for this care.
5. Families should gain an understanding of the legal and eligibility requirements of programs available to the family member with a disability. Investigate resources through government programs, such as Supplemental Security Income (SSI), Vocational Rehabilitation, Independent Living Centers, employment services, parent and disability groups.
6. Families should discover the types of community resources available. The range of services and resources varies considerably according to place of residence. Keep abreast of any changes in the availability of these services. Consider the sibling’s need for long-term care, as well as for employment and companionship.
7. Be aware that, as families grow and develop, the members within it change. Living with and caring for a child with a disability is different from living with and caring for an adult with a disability. Family members should continually ask themselves the following questions:
   • What are the needs of the sibling with a disability?
   • How will these needs change?
   • What can be expected from local support groups in the community?
   • What is and will be my level of involvement?
   • Is the involvement financially, emotionally and psychologically realistic for me?
   • How will the responsibility be shared with other family members?
   • Are my career plans compatible with my responsibilities for my brother or sister with a disability?
   • Will my future spouse accept my brother or sister?

The care of a sibling with a disability or chronic illness is, in large part, a family affair and a responsibility that should be shared as evenly as possible. By planning effectively for the future, parents can help ease the responsibility and the feelings of stress that uncertainty about the future can bring.

Suggestions to parents

Parents set the tone for sibling interactions and attitudes by example and by direct communications. In any family, children should be treated fairly and valued as individuals, praised as well as disciplined, and each child should have special times with parents. Thus, parents should periodically assess the home situation. Although important goals for a child with special needs are to develop feelings of self-worth and self-trust, to become as independent as possible, to develop trust in others, and to develop to the fullest of his or her abilities, these goals are also important to non-disabled siblings.

To every extent possible, parents should require their children with disabilities to do as much as possible for themselves. Families should provide every opportunity for a normal family life by doing things together, such as cleaning the house or yard; or going on family outings to the movies, the playground, museums, or restaurants. Always, the child with the disability should be allowed to participate as much as possible in family chores, and should have specific chores assigned as do the other children.

Care giving responsibilities for the child with a disability or chronic illness should be shared by all family members. It is especially important that the burden for care giving does not fall onto the shoulders of an older sibling. If there is an older sister, there is a tendency in some families to give her the primary responsibility, or an excessive amount of it. Today, however, more communities are providing resources to ease the family’s care giving burdens. Examples include recreation activities, respite care, and parent support groups.

Powell and Ogle (1985) present several strategies suggested by non-disabled siblings themselves for parents to consider in their interactions with their non-disabled children. These siblings suggest that parents should:

• Be open and honest.
• Limit the care giving responsibilities of siblings.
• Use respite care and other supportive services.
• Accept the disability.
• Schedule special time with the non-disabled sibling
• Let siblings settle their own differences.
• Welcome other children and friends into the home.
• Praise all siblings.
• Recognize that they are the most important, most powerful teachers of their children.
• Listen to siblings.
• Involve all siblings in family events and decisions.
• Require the disabled child to do as much for himself or herself as possible.
• Recognize each child’s unique qualities and family contribution.
• Recognize special stress times for siblings and plan to minimize negative effects.
• Use professionals when indicated to help siblings.
• Teach siblings to interact.
• Provide opportunities for a normal family life and normal family activities.
• Join sibling-related organizations.

Children with special needs, disabilities, or chronic illness may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters, disabled and non-disabled, is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family.

A final word

It is important for parents, siblings, and professionals to utilize the positive resources discussed here in order to cope with a variety of special circumstances, and to adapt them to meet individual needs as they change. Together, family members, as well as professionals, must strive to accent the “abilities” of disabilities, not only for a brother or sister with a disability, but for the entire family.