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Why you can't overlook the importance of siblings

Know the worries peculiar to siblings of children with special needs

When I first translated this content, I asked Mr. Hisako Kaneko, a friend of Yasuko Arima, to check and correct the translation. I am deeply grateful to you here.

The base of the Kyodai Support Project has changed from the Children's Hospital / Community Medical Center to the NPO Kinderling Center in Seattle after passing through the United States Association for the Intellectually Handicapped, and the homepage has also moved (2009.07.25). ..

Donald Meyer retired in the fall of 2018 and the current director of the sibling support project is Emily Hall. (Added 2021.11.13)

Donald Meyer, Director of Sibling Support Project
United States / Washington / Seattle / Kindering Center

In the United States, more than 5.8 million children have disabilities. Most of them have siblings. Throughout their lives, these siblings share the worries of parents of children with special needs and, if not most, many, and also have other sibling-specific problems. These worries are well known among parents and have been written in research and clinical literature. The worries that the authors, parents, and siblings of the literature talk about are as follows.

[Necessity of information]
Information about disability and illness is needed for life, and the need for information is constantly changing. (Lobato, 1990; Schorr-Ribera, 1992; Powell & Gallagher, 1993)  


Siblings often have mixed emotions when family information is kept secret (Bendor, 1990) and ignored by service providers (Doherty, 1992). , I feel lonely when I am deprived of the opportunity to get to know my friends who share this. (Meyer & Vadasy, 1994)


【Sense of guilt】
Guilt of causing illness or disability, guilt of being spared from disability. (Koch-Hattem, 1986)  


When a child with special needs gets the attention of the family, the child is spoiled, overprotected, or the child is allowed to do something that is not allowed by other members of the family (Podeanu-Czehotsky, 1975). ; Bendor, 1990), I'm dissatisfied.  


I feel the pressure to get good grades in school and sports and to be a good child. (Coleman, 1990)


[Long-term care burden]
The burden of long-term care is heavy, especially for older siblings (Seligman, 1979).
[Future anxiety] 
Anxiety about their role in the future of brothers and sisters (Fish & Fitzgerald, 1980; Powell & Gallagher, 1993) 

On the other hand, there is an increasing awareness that these siblings have a good experience (Meyer & Vadasy, 1994; Powell & Gallagher, 1993; Turnbull & Turnbull, 1993). Below is a brief list of the good things that parents and siblings have experienced.

As a result of growing up with brothers and sisters who have special needs, the siblings gain insight into humanity.
"She taught me how to love unconditionally without expecting love in return. She also taught me that everyone has strengths and weaknesses. Martha is no exception. Human value is an IQ test. He taught me that it is not measurable. "(Westra, 1992, p.4)

Many siblings mature as a result of successfully coping with the special needs of their siblings.
"I have a different outlook on life than most people of my age. Don't take anything for granted. And if you can't see the good side of things ... I hate Jennifer. There are some, but there are more good ones. "(Andrea, 19 years old, in Binkard et al., 1987, p.19)


When you are proud of your brothers and sisters' abilities, you talk.
"Jennifer probably did more than I did. I've overcome so many things. I couldn't even talk when I started going to school, but now I can and understand what others say. I can. I'm fully demonstrating my potential. I wonder if we can do it. "(Cassie, 18 years old, in Binkard et al., 1987, p. 17)
Your siblings show loyalty to your siblings and family.
"I've always been kind to my brothers and sisters, so I'm kind to everyone else. But if someone throws a fight, I'll take it. I can't forgive anyone who makes fun of Wade or Jolene." (Morrow, 1992, p.4)


Many siblings are grateful for their health and their families. 
"People tend to think in an extremely simplistic way, rather than looking straight at the truth. For example, my mother is not a saint. Some have not yet accepted the obstacles of my sister (sister). Still, she relies on me. I don't know if I have that strength. ”(Julie, in Remsberg, 1989, p. 3) 
"When I'm dealing with Melissa's disability, I know how blessed I am. She always reminds me of how my life would have been if I were the eldest daughter of my parents. Thanks to that, I I want to take good care of my healthy body by making the best use of my intellectual ability. "(Watson, 1991 p.108) 

It is true that there are many good experiences unique to siblings, but this is different from the optimistic view of siblings' experiences. Many of these positives are the result of hard work. In other words, the experience of siblings is very similar to that of parents.

Within the family, siblings other than the mother will spend the longest time with children with special needs. And since sibling relationships are usually the longest-lasting relationships in the family, siblings are likely to experience the above-mentioned problems over the long term. The sibling problem is a lifelong problem. Since kindergarten, siblings have had problems that children of the same age in the community would not face. The same is true for older siblings. Nevertheless, many siblings grow without knowing their resources. Resources are the participation and sources of information in support programs, which are natural for parents and should help their siblings to play a role.


Here are some tips for parents and service providers to minimize their siblings' worries and increase their good experiences as much as possible.


Give siblings age-appropriate information.

Most siblings need information for life, and their needs for information are constantly changing. Parents and service providers have a responsibility to proactively provide useful information to their siblings. The task of public institutions to represent the interests of people with certain disabilities and illnesses is to create materials specifically for young people.

To provide an opportunity for siblings of children with special needs to meet. For most parents, it's hard to imagine "doing it alone" without the help of parents in the same position. However, such a situation is a daily occurrence for siblings. The Sibshop and similar activities provide just the right amount of support that parents value. It tells you that you are not the only one who has the joys and worries peculiar to your siblings.

Encourage close communication with healthy children.

Adequate communication between parents and children is especially important for families with children with special needs. Learning to "listen actively" in the evening course will help improve communication with the whole family. In addition, "How children listen and how children speak" and "How to deal with genka with no hate" (both co-authored by Adele Faber and Elaine Mazlich, the title of the book is translated into Japanese. Books such as (things) provide advice to help you communicate with your child.

Encourage parents to spend time with healthy children.

It is necessary for children to feel from their parents' behavior and words that they are valued as a person. If parents manage their busy schedules, such as eating hamburgers at their favorite hamburger shop with a healthy child or window shopping in a shopping district, the message that parents "exist" for their children will be transmitted. ..

Parents and service providers need to learn more about their sibling experiences.

Siblings' public debates, books, newsletters, and videos are all good media for learning about sibling issues. The sibling support project has a list of books.

Encourage parents to reassure healthy children by designing the future for children with special needs.

Since I was a child, I have been worried about what kind of responsibility my siblings will have for my brothers and sisters in the future. I encourage parents to plan for the future and share it with their children. Knowing that the siblings are "welcome into the circle" and that parents agree to pursue their dreams, future relationships with siblings will be a result of choice rather than obligation.

Many agencies began to realize that the importance of siblings could not be overlooked, and began to change policies and procedures to recognize the important role that siblings play. The points that related organizations should consider are as follows.

[Is my sibling included in the definition of "family"]
Many education and health institutions target expanded family definitions (eg, IFSPs (= Individualized Family Service Plans) and family-centered care (= family-centered care, "family" rather than "individual"). However, service providers must remember that there are other family members besides the child with special needs and their parents. They say "family" or "family member". When the word "parents" is used by institutions when the wording is appropriate, it conveys the message that brothers and sisters, grandparents, and other family members are irrelevant to the program. No one can be excluded from the definition of family, as the role played by grandparents as a primary caregiver is becoming more and more active.

[Are related organizations reaching out to their siblings]
Parents and staff of various institutions are welcome to attend IEP (= Individualized Education Plans), IFSP (= Individualized Family Service Plans), transitional design seminars, and hospital consultations that provide a lot of information. Should be considered (without forcing) to participate. Siblings often ask serious questions, but service providers can answer them. In addition, siblings have informed opinions and views that can have a positive impact on the children's team.


Are related organizations educating staff about the problems they face?]
Sibling public debates are a valuable way for staff to better understand the life of siblings of people with disabilities and chronic illnesses. The guidebook for holding public discussions on siblings is provided by the Sibling Support Project (SSP). Other useful methods for institutional staff education include videos, books and newsletters. The book is also from SSP.

[Are there programs dedicated to siblings in related organizations]
Like parents, siblings can gain a lot from talking to people who can understand each other. The number of Shibu Shops and programs for childhood, school age, adolescence and adulthood is increasing. The sibling support project maintains a database of more than 200 sibling shops and other sibling programs, helping with methods for launching sibling programs in the community.

[Does the advisory board of the relevant organization include siblings, and is there a policy that reflects the importance of including siblings? ]
The participation of siblings in the committee means that a unique and important perspective is added to the committee, and that the institution is interested in the welfare of the siblings. If the idea that the role played by the siblings is important in formulating a policy, then the family efforts of the institution will surely include the concerns and contributions of the siblings.

(This article is taken from "Sibshops: Workshops for siblings of children with special needs." (Donald Meyer & Patrica Vadasy, 1994, published by Paul H. Brooks, copyrighted).


Bendor, SJ (1990). Anxiety and isolation in siblings of pediatric cancer patients: The need for prevention. Social Work in Health Care, 14, 17-35. 

Binkard, B., Goldberg, M., & Goldberg, PF (Eds.). (1987). Brothers and sisters talk with PACER. Minneapolis: PACER Center, Inc. 

Coleman, SV (1990). The sibling of the retarded child: Self-concept, deficit compensation motivation, and perceived parental behavior (Doctoral dissertation, California School of Professional Psychology, San Diego, 1990). Dissertation Abstracts International, 51 (10-) B), 5023. (University Microfilms No. 01147421-AAD91-07868)

Doherty, J. (1992). A sibling remembers. Candlelighters Childhood Cancer Foundation Quarterly Newsletter, 16 (2), 4-6.

Fish, T. & Fitzgerald, GM (1980, November). A transdisciplinary approach to working with adolescent siblings of the mentally retarded: A group experience. Paper presented to Social Work with Groups Symposium, Arlington, Texas. Available from T. Fish, The Nisonger Center, The Ohio State University, 1580 Canon Dr. Columbus, Ohio, 43210.

Koch-Hattem, A. (1986). Siblings' experience of pediatric cancer: Interviews with children. Health and Social Work, 107-117.

Lobato, DJ (1990). Brothers, sisters, and special needs: Information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore: Paul H. Brookes.

Meyer, DJ & Vadasy, PF (1994). Sibshops: Workshops for siblings of children with special needs. Baltimore: Paul H. Brookes Publishing Company.

Morrow, J. (1992). Lucky Robert--An interview with Justin Smock. Parents and Friends Together for People with Deaf-Blindness News. Vol.1, Issue 5, March 1992, p.1.

Podeanu-Czehotsky, I. (1975). Is it only the child's guilt? Some aspects of family life of cerebral palsied children. Rehabilitation Literature, 36, 308-311.

Powell, TH & Gallagher, PA (1993). Brothers & sisters: A special part of exceptional families (2nd ed.). Baltimore, MD: Paul H. Brookes.

Remsberg, B. (1989). What it means to have a handicapped brother or sister. Unpublished manuscript.

Schorr-Ribera, H. (1992). Caring for siblings during diagnosis and treatment. Candlelighters Childhood Cancer Foundation Quarterly Newsletter, 16 (2). 1-3.

Seligman, M. (1979). Strategies for helping parents of exceptional children. New York: The Free Press. Turnbull, AP & Turnbull, HR (1993). Participatory research on cognitive coping: From concepts to research planning. In AP

Turnbull, JM Patterson, SK Behr, DL Murphy, JG Marquis & MJ Blue-Banning (eds.), Cognitive coping, families & disability, Baltimore, MD: Paul H. Brookes.

Watson, J. (1991). The Queen. Down Syndrome News, Vol. 15, No. 8, p.108.

Westra, M. (1992). An open letter to my parents. Sibling Information Network Newsletter, Vol. 8, No. 1, p.4

What you want parents and service providers to know
Why you can't overlook its importance
To siblings
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