Excerpted with permission from "Sibshops, Revised Edition" by Don Meyer and Patricia Vadasy. (Published by Paul H. Brookes Publishing Co.; 978-1-55766-783-0. Copyright © 2008 by Paul H. Brookes Publishing Co., Inc.; all rights reserved.) Sibshop and Sibshops are service marks and trademarks owned by Donald J. Meyer on behalf of the Sibling Support Project.
In the United States, there are more than six million people who have special health, developmental, and mental health concerns. Most of these people have typically developing brothers and sisters. Brothers and sisters are too important to ignore, if for only the following reasons:
- These brothers and sisters will be in the lives of family members with special needs longer than anyone else. Brothers and sisters will be there after parents are gone and special education services are a distant memory. If these brothers and sisters are provided with support and information, they can help their siblings live dignified lives from childhood to their senior years.
- Throughout their lives, brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future, and caregiving demands. Brothers and sisters also face issues that are uniquely theirs, including resentment, peer issues, embarrassment, and pressure to achieve.
Despite the important and lifelong roles they will play in the lives of their siblings who have special needs, even the most family-friendly agencies often overlook brothers and sisters. Brothers and sisters, often left in the literal and figurative waiting rooms of service delivery systems, deserve better. True family-centered care and services will be achieved when siblings are actively included in agencies’ functional definition of ‘‘family.’’
The Sibling Support Project facilitated a discussion on SibNet, its listserv for adult siblings of people with disabilities, regarding the considerations that siblings want from parents, other family members, and service providers. Following are themes discussed by SibNet members and recommendations from the Sibling Support Project:
1. The Right to One’s Own Life
Throughout their lives, brothers and sisters may play many different roles in the lives of their siblings with special needs. Regardless of the contributions they may make, the basic right of siblings to their own lives must always be remembered. Parents and service providers should not make assumptions about responsibilities that typically developing siblings may assume 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 -- including brothers and sisters.
2. Acknowledging Siblings’ Concerns
Like parents, brothers and sisters will experience a wide array of often ambivalent emotions regarding the effect their siblings’ special needs has on them and the family as a whole. These feelings should be both expected and acknowledged by parents and other family members and service providers. Because most siblings will have the longest-lasting relationship with the family member who has a disability, these concerns will change over time. Parents and providers would be wise to learn more about siblings’ lifelong and ever-changing concerns.
3. Expectations for Typically Developing SiblingsFamilies need to set high expectations for all of their children. Some typically developing 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 SiblingsAlthough 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. Although parents may be appalled at siblings’ harshness toward one another, much of this conflict can be a beneficial part of normal social development. A child with Down syndrome who grows up with siblings with whom he sometimes fights will likely be better prepared to face life in the community as an adult than a child with Down syndrome who grows up as an only child. Regardless of how adaptive or developmentally appropriate it might be, however, typical sibling conflict is more likely to result in feelings of guilt when one sibling has special health or developmental needs. When conflict arises, 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. As adults, typically developing brothers and sisters will likely play important roles in the lives of their siblings with disabilities. Parents can help siblings now by assisting their children with special needs acquire skills that will allow them to be as independent as possible as adults. 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 expressed by siblings when there are two sets of rules -- one for them and another for their sibs who have special needs.