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What siblings want parents and service providers to know

Original / Copyright: The Sibling Support Project
First edition of the original text: June 18, 2002 Derivative work / copyright: Society to spread support for today

You may reprint this text in printed matter before using it, but be sure to meet the following conditions before using it.
1) Be sure to specify the copyright of both the original text and the translated text.
2) Send one copy each of the reprinted publications to Emily Hall of the US Sibling Support Project and to the "Meeting to Spread Sibling Support".
If you have any questions, please contact siblingjapan_contact at sign (please change the at sign to @) by e-mail to the meeting to spread support for siblings.
In March 2019, the management of derivative works (translated booklets) of materials related to the US sibling support project was transferred from the "sibling support group" to the "sibling support promotion group", and this page is also 2020. In May of the year, it was transferred to a society to spread sibling support.

There are more than 6 million people in the United States with health, developmental, or mental problems. Most of these people have healthy siblings. Siblings are too important to ignore, just for the following reasons:

1) Siblings live with families who have special needs longer than anyone else. My siblings are still there even after my parents have died and special education services have become a distant memory. With support and information, siblings can help siblings lead a dignified life from early childhood to old age.

2) Throughout life, siblings also experience many of the anxieties and problems experienced by parents of children with special needs. Loneliness, need for information, guilt, anxiety about the future, long-term care burden, etc. Siblings also face problems specific to their siblings. Indignation (grudge), problems with people of the same generation, embarrassment (embarrassment), pressure to get good grades, etc.


Even though siblings play an important and lifelong role in the lives of siblings with special needs, even institutions that claim family support often ignore them. Siblings are often left behind in the waiting room, either literally or figuratively, in the service delivery system, but it is natural to receive better treatment. The care and service of a genuine "family support" agency will succeed when the sibling is included in the definition of "family".

The sibling support project is Sibnet (a mailing list for adult siblings of people with disabilities run by the project) that siblings want parents, other family members, and service providers to know. I led the discussion on what I thought. Below are the themes discussed by the members of Sibnet and what the sibling support project recommends.

1. 1. The right to have your own life.
Throughout your life, your siblings will play many different roles in the lives of siblings with special needs. Whether or not the siblings contribute to the care of their brothers and sisters, the fundamental rights of the siblings to their own lives must always be forgotten. Without open and open discussions, parents and service providers should not rely on the responsibilities of a healthy sibling. "I can't decide about us without us (a popular phrase in the self-defense of people with disabilities)" applies equally to our siblings. Self-determination is, after all, for everyone, including siblings.

2. Be aware of your siblings' worries.
Like parents, siblings have a wide range of emotions-often conflicting emotions with respect to the effects of the special needs of their siblings. Parents, other family members, and service providers must anticipate and recognize these feelings. Most siblings have the longest relationship with family members with disabilities, so these worries change over time. Parents and service providers should learn more about their siblings' lifelong and ever-changing worries.

3. Expectations for a healthy sibling.
Families need to have high expectations for all their children. However, some healthy siblings respond to their siblings' disabilities by setting unrealistic high expectations themselves. And some feel that they must somehow compensate for the special needs of their brothers and sisters. Parents will be able to help healthy children by clearly stating what they expect and providing unconditional support.

4. Predicting the normal behavior of a healthy sibling.
It's hard for parents to keep an eye on, but teasing, slander, fights, and other forms of conflict are common among most siblings-even if one of them has a special need. Parents may be horrified by the ruthlessness of their siblings, but many of these conflicts can be a beneficial part of normal social growth. Children with Down Syndrome who grow up with their siblings who sometimes fight are more prepared to face community life as adults than children with Down Syndrome who probably grow up as only children. When one of the siblings has special health or developmental needs, regardless of how adaptable or developmentally appropriate, the typical sibling conflict is (for a healthy sibling). It tends to end as a feeling of guilt. When a dispute arises, the message sent to many siblings is, "Stop. You are bigger, you are stronger, you have to know the right thing. You should walk up." Thing. It's only natural that a healthy sibling, like any other child, sometimes has a rough look, gets angry with his siblings, and fights with his siblings.

5. Expectations for families with special needs.
It is good for everyone if the family has high expectations for children with special needs. As an adult, a healthy sibling will play an important role in the lives of siblings with disabilities. Parents can help their siblings by helping them acquire skills now so that children with special needs can become as independent as possible as adults. To the extent possible, parents should expect children with special needs regarding household chores and self-responsibility, just as they would let healthy children do. Equal expectations not only encouraged independence, but there were two types of rules-one for siblings and one for siblings with special needs-as stated by the indignation. Minimize your resentment.

6. Right to a safe environment.
Some siblings live with siblings with behavioral disabilities. You may also be responsible for yourself and your siblings, regardless of your age level or position, in situations where all parties are vulnerable. Just as family members with special needs are as important, siblings deserve their own personal safety.

7. Opportunity to meet people in the same position.
For most parents, it's hard to imagine raising a child with special needs "alone" without the benefit of getting to know a parent in the same position. However, this happens quite normally. Shiv shops, mailing lists (eg Sibnet and Shib Kids), and similar activities provide the same support and confirmation that parents get from parent-to-parent programs (programs for parents) and similar programs. am. Like parents, siblings want to know that they are not the only ones who have their own joys and worries.

8. Opportunity to get information.
Throughout his life, siblings need information about their siblings' disabilities, their treatments, and the many things that go with them-although they are constantly changing. Parents and service providers are obliged to proactively provide useful information to their siblings. Any agency that provides materials for parents and other adults on a particular disability or illness must also provide materials for siblings and young people.

9. Siblings' anxiety about the future.
From early in life, many siblings are worried about what obligations they have to their siblings in the coming days. Parents can reassure a healthy child in the following ways: Design the future of children with special needs. When making the plan, involve healthy children and listen to their opinions. Consider a preliminary plan. Understand that your attitude toward how much you are involved with your siblings as an adult can change over time. If you know early on that your siblings will be "welcome into the circle" and that your parents will agree to pursue your dreams, future relationships with your siblings will be a result of your choice rather than an obligation. .. For the well-being of oneself and the well-being of siblings with disabilities, siblings must be given the right to their own lives. This includes the right to speak about whether, as an adult, a brother or sister with a disability is involved in the life, how, how much, in what form, and how long.

10. Engage both son and daughter.
A family member who takes care of a family member when the parent can no longer care for a family member with special needs, just as a daughter is usually a family member who cares for an aging parent. Is also usually a daughter. However, we should seriously seek whether the responsibility can be shared among siblings, including siblings.

11. Communication.
Adequate communication between parents and children is especially important for families with children with special needs. Learning "active listening" in the evening course will help improve communication for the whole family. In addition, "How to speak with children and how to listen with children" (* 1) and "How to deal with genka with no hate-Psychology for raising children" (* 2) (both are Adele Faber). And books such as Elaine Mazurish) provide advice to help you communicate with your child.

* 1
Original title: How to Talk So Kids Will Listen & Listen So Kids Will Talk
Adele Faber, Elaine Mazlish Japanese translation: "How children listen and how children listen"
Written by Adele Faber & Elaine Mazurish, Translated by Reedy Mitsuno & Sanae Nakano
1995.10.4 First edition published 1996.11.18 Second edition published, Kiko Shobo

* 2
Original title: Siblings Without Rivalry: How to Help Your Children Live Together  So You Can Live Too
Adele Faber, Elaine Mazlish
Japanese translation: "How to deal with genka with no hate-Psychology of raising children"
Written by Adele Faber & Elaine Mazurish, Translated by Mitsuno Reedy
1998, Kiko Shobo, ISBN: 4877715029

12. One-on-one time with parents.
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, sip hamburgers at their favorite hamburger shop with healthy children, or window shop in the shopping district, parents will get the message that they "exist" for their children as well. It will also be a good opportunity to talk about a wide range of topics.

13. For every child, celebrate what he or she has achieved and the important events of life.
Over the years, I've met many siblings-even when they were presidents-when their parents didn't come to high school graduation because they couldn't leave their children with special needs. I also met siblings who had a wedding plan for the needs of their siblings with disabilities. The special needs of one child must not obscure the achievements of another child or the important events of life. Looking for respite services, striving for flexibility, and seeking creative solutions will ensure that the family celebrates the achievements of all family members.

14. Parental thinking is more important than actual disability.
Parents should remember that how parents perceive their child's disability has a greater impact on their ability to adapt to a healthy sibling than on the actual disability. When parents seek help, information, and respite on their own, they provide a model for healthy children with the ability to adapt well to difficult situations, healthy attitudes, and behavior.

15. Include siblings in the definition of "family."
Many educational institutions, health care institutions, and social welfare institutions have stated that they want to provide services for their families, but ignore the family members who have the longest relationships with people with special needs. Continue to do. When providing siblings with the care and services they should receive, it can be professed that the agencies are providing services for the "family" rather than for the "parents".

16. Actively reach out to your siblings.
Parents and staff of various institutions can provide a lot of information on individual education plans (IEP * 1), individual family service plans (IFSP * 2), meetings on plans for transition (* 3), and hospitals. You should consider having your siblings (without compulsion) participate in the examination. Siblings often ask serious questions, but service providers will be able to answer them. In addition, siblings have informed opinions and views that can have a positive impact on the children's team.

IEP (Individualized Education Plans) A program related to the Individuals with Disabilities Education Act in the United States. For children with disabilities, teachers, parents, therapists, etc. will come together to discuss the optimal educational conditions.

IFSP (Individualized Family Service Plans).

* 3) Meeting to decide after graduating from high school

17. Learn a lot about life as a sibling.
Those who are interested in their families should also be interested in their siblings and their worries. Parents and service providers can "as a sibling" by holding a sibling shop, hosting a public debate by siblings, reading books written by siblings, reading books about siblings, and so on. You can learn more about "life". Guidelines for hosting open discussions by siblings are provided by the Sibling Support Project and can be found in the Sibshops curriculum. A bibliography of books related to siblings can be found on the homepage of the sibling support project.

18. Create a regional program for your siblings.
If your area has a parent-to-parent program (a program for parents) or similar activities to support parents, ask why there is no such thing for siblings. Is fair. 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 (in the United States). The Sibling Support Project maintains a database of more than 200 sibling shops and other sibling programs, and provides training and professional assistance to launch sibling programs in the community.

19. Put your siblings on the advisory board of the relevant body and also in your family policy.
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, the institution's family efforts will surely include the siblings' worries and contributions.

20. Funding services for siblings.
Classmates in integrated classes will not affect the social development of children with disabilities as much as the impact of siblings. Siblings will be a lifelong developmental role model for people with disabilities. As mentioned earlier, siblings will live their lives with their siblings longer than anyone else. -More than parents, and arguably longer than any service provider-. For most siblings, their future and the future of their siblings with special needs are inevitably entwined. Nonetheless, there is little funding for projects that help siblings get the information, technology, and support they need throughout their lives. Relevants should take a personal interest in the well-being of people with disabilities and invest in family members who will defend their siblings when parents can no longer defend them. As one woman wrote, "When parents can't take care of us, we take care of our siblings. Anyone who is interested in the welfare of people with disabilities, We should also be interested. "

Sibling Support Project
Emily Holl, Director
A Kindering Program
16120 NE 8th Street
Bellevue, WA 98008
emilyholl @

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