Special Needs of Siblings

Mature, Informed Parents

Siblings need parents who can be positive role models and who can make them feel loved and cared for. They need to feel they have their own place in the family and are not an afterthought. Parents need to make a conscious effort to include them when planning family events and take the sibling's needs into account. Siblings need to know that they are not responsible for their brother or sister who has a disability and should feel free to decline to care for them or to be involved if they wish (Turnbull & Turnbull, 1990).

Parents who take care of their own needs model a valuable lesson to siblings. Also they need to explain stresses and tensions in the family so that siblings know the sources of them and how to deal with them. Siblings may be confused by parents' changing reactions to the child with a disability as they try to adjust to different issues. Sibling needs can be met as demonstrated by 90 siblings of adults who are mentally retarded, most of whom reported that their adult life was not adversely affected by their sibling because of a positive adaptation to the sibling, supportive parents, and coping strategies (Cleveland & Miller, 1977).

What is especially difficult for siblings is how they fit into the family in relationship to the child who has a disability. Parents may treat that child differently and make certain allowances for him or her. Siblings notice this and may wonder about how fair that is. Parents need to explain special rules and arrangements for the child with a disability and help the sibling put them into perspective so they do not feel cheated or overlooked. See Box 4-1 for questions siblings may need to have answered about parenting of children who have disabilities and issues of equity. As a sister of an older person with mental retardation explains:

One person's disability can change almost everything about a family. 1 think families have to talk about it and acknowledge what's occurring.

Also, I think parents will have to create communication opportunities between themselves and their children. Parents will probably have to ask some leading questions, too, because kids won't initiate telling their folks about some of the bad things they feel. Their feelings can include a lot of guilt and shame—not the kind of things that children feel very proud of themselves for feeling. But I think its important that the emotions be brought into the open and discussed. (PACER Center, 1987, pp. 30-31)

Box 4-1 · Questions Siblings Have for Parents Will you help me understand more about the exceptionality? What does it really mean? Will you share with me your feelings/strategies regarding my brother or sister? Will I have the same problems as my brother or sister? How do I explain the exceptionality to my friends? Why is so much time given to my sibling? Why do you have different expectations for me? Is it fair? What is my responsibility? Why? Is it fair? What is the best way to communicate with my sibling? How do I deal with unacceptable behavior? How do I deal with my roller coaster emotions-showing love and understanding at times and shame, fear, hatred, jealousy, etc. at other times? Will I be punished for these feelings? Why do I feel guilty when I am successful in school? What will happen in the future?

Information, Skills, and Support Groups

Siblings who lack information and experience have a hard time putting things into the proper perspective (Featherstone, 1980). Parents need to provide information about the exceptional child's condition, its etiology, and what can be done about it, as indicated by this sibling:

My Mom and Dad had told us right away when they realized something was wrong with John's hearing. They helped us to understand that there was nothing that could be done to make his deafness go away and that we would need to help him and be especially kind.

They explained right away what they would need to do to help John. I think it's really important to include other kids in the family right away. One of my friends didn't know for a long time what was wrong with her sister, and it was really confusing for her. If kids are in on it from the beginning, they can start adjusting along with their parents and learn how to live with it. Even if you don't know exactly what's wrong for awhile, it's still better that everyone understand there may be something wrong than to go through a long period of seeing that one kid is different but never talking about why. (PACER Center, 1987, p. 14)

Siblings need to know what it means for them. Will they get the condition? Will their children? Is it· contagious? However, siblings need only so much information at one time so parents and professionals must regard this need as an ongoing one. Meyer, Vadasy, and Fewell (1985) have composed an excellent book for siblings with this need in mind.

Siblings also need some guidance on how to deal with predictable situations. Other children and adults may ask them what is wrong with their brother or sister. They need to be taught what to say and how to say it in their own words; also they should learn to be comfortable saying "I don't know" or "Ask my mother."

Siblings need basic skills in communications and behavior management so they can relate with their brother or sister. They need to know sign language, how the hearing aid works, how to use the wheelchair, proper lifting and feeding techniques, remedial reading approaches, and others depending upon the nature of the exceptionality. It is appropriate to prepare them for emergency situations when the safety and life of the child with a disability might depend on swift, effective action. Such background supports the development of a meaningful sibling relationship.

PL 99-457's initiative means greater involvement of siblings in the services for the child who has a disability. Siblings need to know about the assessment and planning process and something about the services given their brother or sister. If they are given a role in the program, their tasks should be clearly laid out and expectations well defined. Schools and therapists can hold special training for siblings in these areas. Siblings have been successfully taught to use behavior management techniques with their exceptional brothers and sisters and, in the process, begin making more positive statements about them (Schreibman, O'Neill, & Koegel, 1983).

Siblings definitely need support groups of their own to provide a forum to learn new information and to share their experiences with one another. Parent organization, clinics, and therapists often organize groups of siblings to discuss their feelings and deal with mutual issues. Siblings can work out their negative feelings in a supportive environment and without the fear of offending parents and the brother and sister who has a disability. The sharing of experiences and resources can do much for the sibling's self-confidence. See the suggestions in Box 4-2 for organizing such a support group.

Self-Identity

Siblings need special understanding, attention, support, and recognition for their unique contributions to the family system (Powell & Ogle, 1985). With the proper instruction and support, there is every likelihood that siblings will benefit immeasurably from living with the child who has a disability. Without it, the opposite can occur. It is critical that the sibling's self-identity not be confused with that of the child who has a disability. Also it must be nurtured in spite of the attention needed by the exceptional child.

Siblings need to be recognized and affirmed for themselves, independent of achievements and deeds. Their accomplishments should be recognized and applauded, and not overlooked because of the attention the child with a disability receives. They should be encouraged to have their own friends, games and hobbies and time to themselves. While it is reasonable to expect siblings to play with and otherwise take care of the child with a disability sometimes, it should not be a full-time occupation. As one sibling recommends:

In my experience, and from discussions with other siblings of people with disabilities, I have learned that the best way to foster a positive relationship among family members and a strong commitment to each other is to let them choose the levels and intensity of involvement with each other. I have noted that for me, these levels have fluctuated over time and during various circumstances. My relationship with Karen was strengthened when I came to view my involvement with her as a collaboration. Collaboration can be encouraged, but never coerced. (Horne et al., 1988, p. 7)

Planned Involvement

Siblings need to be included in the family assessment mandated by PL 94-457 (Bailey & Simeonsson, 1988). Questions about siblings should be inserted regularly into family needs assessment instruments. Siblings should be interviewed themselves about their needs and feelings and observed in their interactions with the child with the disability. See Box 4-4 for interview questions that might be addressed to siblings or, if they are too young, to parents. They can be observed while they play, tutor or assist, or interact socially with their brother or sister: see Box 4-5 for some factors to be mindful of. It is important to take into account normal sibling rivalries and interactions and not assume everything that occurs is related to the exceptionality.

When the individualized family service plan is being developed, it may be appropriate to include siblings in the discussion if for no other reason than that they know what is going on. Their needs should be incorporated into the IFSP and appropriate services provided, perhaps in the areas mentioned before. Parents should also periodically assess the family environment to see how the needs of family members are being met and what adjustments are needed.

It is important to include siblings in interventions to increase their knowledge and give them a chance to discuss their own needs (Turnbull & Turnbull, 1990). There are many ways for siblings to encourage their brothers or sisters to move, speak, or behave correctly. Since siblings associate with the child who has a disability in a variety of settings, they can encourage the use of skills learned in one type of setting in another one.

Box 4-4 · Interview Questions for Siblings Do you understand your brother/sister? Have reasons for his/her behavior been explained to you? How do you feel about your brother/sister? Do you resent the amount of time/resources that your parents spend on your brother/sister? Do you have an opportunity to express/discuss these feelings with your family? Do you have the opportunity to help make decisions about your sister/brother? Do you belong to a group for siblings? If not, would you like to join a group to share your feelings? How do your friends react to your brother/ sister? What responsibilities do you have for your brother/sister? Do you think it is fair? Do you think about your brother/sister's future? If you had a chance to talk with parents who have children with and without disabilities, what would you tell them about the sibling experience?

Future Plans

For their own peace of mind, siblings need to know about future plans for the child with a disability, as explained by this sibling:

I know it is easier to say that siblings should be involved in planning for the future care of the brother and sister with disabilities than it is to involve them. I also know that the emotional ramifications of this are sometimes subtle and not always easily recognized. With respect to financial planning, Moms and Dads don't usually sit down with their kids and say, 'OK, folks, I want to let you know the details of our finances now and our financial prospects for the future.' This topic is difficult for parents and children alike. But you must attend to this in some way if the family members are going to be prepared to take over the care of or responsibility for, a person with disabilities. I remember all too well the day I finally got the courage to ask my Mom about her insurance provisions for my sister. Her answers were anticlimactic compared to the effort and energy I had spent getting the courage to ask the question (Horne et al., 1988, p. 7).

It is inaccurate to assume that siblings perceive things as their parents do. When parents and their sons and daughters without disabilities were asked about the children's future involvement, only 41 percent of the parents thought their children would assume partial care for the child with a disability, while over two-thirds of the children anticipated having such a role (McCullough, 1981). It is considerably less stressful for siblings to have the details worked out in advance (Skrtic et al., 1984).

When planning for the future of a child who has a disability, parents and siblings should consider such things as mobility, social and communication skills, education, and the individual's own ideas about where to live and work. Here is information the National Information Center for Children and Youth with Handicaps (Horne et al., 1988) suggests be developed and stored in a place accessible to siblings:

1. Develop financial plans for future care. It is important to consult an attorney with experience in devising wills for those who have an heir with a disability. The exceptional person may become ineligible for certain social services if he or she receives an inheritance.
2. Know your state's laws regarding guardianship and independence. Parents cannot assume they will remain the child's guardian after he or she reaches the age of majority. They need to determine how much supervision the exceptional person will need and put in writing the first and second choice guardians.
3. Siblings should know where all educational, vocational, and medical records are kept.
4. Document where the person who has a disability can receive medical care and the financial resources and arrangements made for this care.
5. Parents and siblings need to investigate the eligibility requirements for governmental programs like Supplemental Security Income, vocational rehabilitation, independent living centers, employment services, parent and disability groups.
6. Parents and siblings need to find out about the range of available community services.
7. Since the needs of the person who has a disability change over time, parents and siblings should regularly address questions regarding the future.

Close and Meaningful Relationships

The greatest need that siblings have and the outcome of all the other needs is to have a close, intimate relationship with their brother or sister. Like all relationships, it has to be established on the basis of mutual trust and understanding. That requires a lot of work on the part of the sibling and the devotion of much time with their brother or sister. Parents and professionals have to provide guidance along the way and encourage the relationship. Barriers to sound, sight, movement, speech, and other natural functions make the attainment of the goal all the more difficult. However there are many siblings who can testify to the rewards to both themselves and the person who has a disability.