Siblings of children with disabilities tell us what we need to know
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Download these two sample activities, featuring one enduring favorite and one of the 30 new activities from the revised edition of Sibshops |
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The Sibling Support Project, directed by Don Meyer, creator of Sibshops and co-author of Sibshops: Workshops for Siblings of Children with Special Needs, Revised Edition, facilitated a discussion on SibNet, a listserv especially for adult siblings of people with disabilities, to find out what brothers and sisters would like others to understand about what it means to be the sibling of someone with special needs. Here are 20 key points they advise parents and service providers to bear in mind:
1. The Right to One's Own Life
Parents and service providers should not make assumptions about responsibilities that affect siblings without a frank and open discussion. "Nothing about us without us"—a phrase popular with self-advocates who have disabilities—applies to siblings as well. Self-determination, after all, is for everyone.
2. Acknowledging Siblings' Concerns
Like parents, brothers and sisters will experience a wide array of emotions related to their siblings with special needs. These feelings should be both expected and acknowledged. Because brothers and sisters will most likely have the longest-lasting relationship with the person who has a disability, parents and providers should make a point of understanding their concerns as they evolve over time.
3. Expectations for Typically Developing Siblings
Families need to set high expectations for all of their children. Some brothers and sisters, however, react to their siblings' disability by setting unrealistically high expectations for themselves, and some feel that they must somehow compensate for their siblings' special needs. Parents can help their typically developing children by conveying clear expectations and unconditional support.
4. Expect Typical Behavior from Typically Developing Siblings
Although difficult for parents to watch, teasing, name calling, arguing, and other forms of conflict are common among most brothers and sisters—even when one has special needs. Regardless of how typical sibling conflict might be, the message sent to many brothers and sisters is, "Leave your sibling alone. You are bigger, you are stronger, you should know better. It is your job to compromise." Typically developing siblings deserve a life where they, like other children, sometimes misbehave, get angry, and fight with their siblings.
5. Expectations for the Family Member with Special Needs
When families have high expectations for their children with special needs, everyone will benefit. To the extent possible, parents should have the same expectations for the child with special needs regarding chores and personal responsibility as they do for their typically developing children. Not only will similar expectations foster independence, they will also minimize the resentment experienced by siblings when there are two sets of rules—one for them and another for their sibs who have special needs.
6. The Right to a Safe Environment
Some siblings live with brothers and sisters who have challenging behaviors. Other siblings assume responsibilities for themselves and their siblings that go beyond their age level and place all parties in vulnerable situations. Siblings deserve to have their own personal safety given as much importance as the family member with special needs.
7. Opportunities to Meet Peers
For most parents, the thought of "going it alone"—raising a child with special needs without the benefit of knowing another parent in a similar situation—would be unthinkable. Yet, this routinely happens to brothers and sisters. Sibshops, listservs such as SibNet and SibKids, and similar efforts offer siblings the common-sense support and validation that parents get from Parent-to-Parent programs and similar programs. Brothers and sisters—like parents—like to know that they are not alone with their particular joys and concerns.
8. Opportunities to Obtain Information
Throughout their lives, brothers and sisters have an ever-changing need for information about their sibling's disability—and its treatment and implications. Siblings experience a more secure footing when parents and service providers proactively provide helpful information. Any agency that represents a specific disability or illness and prepares materials for parents and other adults should prepare materials for siblings and young readers as well.
9. Siblings' Concerns About the Future
Brothers and sisters should have a say in whether and how they will be involved in the lives of their siblings with disabilities as adults and the level, type, and duration of that involvement. As parents make plans for the future of their children with special needs, they can reassure siblings by listening to their suggestions, considering back-up plans, and realizing that their children's availability may change over time. When brothers and sisters are brought into the loop and given the message early on that they have their parents' blessing to pursue their own dreams, their future involvement will be a choice instead of an obligation.
10. Including Both Sons and Daughters
Just as daughters are usually the family members who care for aging parents, adult sisters are usually the family members who look after the family member with special needs when parents no longer can. Serious exploration of sharing responsibilities among sisters and brothers should be considered.
11. Communication
Although good communication is always important, it is especially important in families where there is a child who has special needs. An evening course in active listening can help improve communication among all family members, and books such as How to Talk So Kids Will Listen and Listen So Kids Will Talk (2004) and Siblings without Rivalry (1999) (both by Adele Faber and Elaine Mazlish) provide helpful tips on communicating with children.
12. One-on-One Time with Parents
Children need to know from their parents' deeds and words that their parents care about them as individuals. When parents carve time out of a busy schedule to grab a bite at a local burger joint or window shop at the mall with their children individually, it conveys a message that parents are there for them as well and provides an excellent opportunity to talk about a wide range of topics.
13. Celebrate Every Child's Achievements and Milestones
Over the years, we've met siblings whose parents did not attend their high school graduation— even when their children were valedictorians—because the parents were unable to leave their child with special needs. We've also met siblings whose wedding plans were dictated by the needs of their sibling. One child's special needs should not overshadow another's achievements and milestones. Families who seek respite resources and creative solutions and strive for flexibility can help ensure that the accomplishments of all family members are celebrated.
14. Parents' Perspective Is More Important than the Actual Disability
Parents would be wise to remember that the parents' interpretation of their child's disability will be a greater influence on the adaptation of their typically developing sibling than the actual disability itself. When parents seek support, information, and respite for themselves, they model resilience and healthy attitudes and behaviors for their typically developing children.
15. Include Siblings in the Definition of "Family"
Many educational, health care, and social service agencies profess a commitment to "family-centered services" but continue to overlook the family members who will have the longest-lasting relationship with the person who has special needs. When brothers and sisters receive the considerations they need, agencies can legitimately claim to offer family-centered services.
16. Actively Reach Out to Brothers and Sisters
Parents and agency personnel should consider inviting (but not requiring) brothers and sisters to attend informational, individualized education program (IEP), individualized family service plans (IFSP), and transition planning meetings and clinic visits. Siblings frequently have legitimate questions that can be answered by service providers. Brothers and sisters also have informed opinions and perspectives and can make positive contributions to the child's team.
17. Learn More About Life as a Sibling
Anyone interested in families ought to be interested in siblings and their concerns. Parents and providers can learn more about life as a sib by facilitating a Sibshop, hosting a sibling panel, or reading books by and about brothers and sisters. Guidelines for conducting a sibling panel are available from the Sibling Support Project and in the Sibshop curriculum. Visit the Sibling Support Project's web site for a bibliography of sibling-related books.
18. Create Local Programs Specifically for Brothers and Sisters
If your community has a Parent-to-Parent program or a similar parent support effort, a fair question to ask is: Why isn't there a similar effort for the brothers and sisters? Like their parents, brothers and sisters benefit from talking with others who "get it." Sibshops and other programs for preschool, school-age, teen, and adult siblings are growing in number. The Sibling Support Project, which maintains a database of more than 200 Sibshops and other sibling programs, provides training and technical assistance on how to create local programs for siblings.
19. Include Brothers and Sisters on Advisory Boards and in Policies Regarding Families
Reserving board seats for siblings will give the board a unique, important perspective and reflect the agency's concern for the well-being of brothers and sisters. Developing policies based on the important roles played by brothers and sisters will help ensure that their concerns and contributions are part of the agency's commitment to families.
20. Fund Services for Brothers and Sisters
Brothers and sisters will likely have the greatest impact on the social development of their siblings; they will be their sibling's lifelong "typically developing role model." They will likely be in the lives of their siblings longer than anyone else—longer than their parents and certainly longer than any service provider. Despite this, there is little funding to support projects that will help brothers and sisters get the information, skills, and support they need. Governmental agencies would be wise to invest in these family members likely to play the most critical role in the lasting well-being of people with disabilities.
*Adapted from Sibshops: Workshops for Siblings of Children with Special Needs, Revised Edition by Don Meyer & Patricia Vadasy.
