NEW YORK TIMES COLUMN: FAMILIES TODAY:
SIBLINGS OF CHILDREN WITH SPECIAL NEEDS
By: T. Berry Brazelton, M.D., and Joshua Sparrow, M.D.
(This column is adapted from an article by Don Meyer, director of the Sibling Support Project, affiliated with the non-profit Kindering Center in Bellevue, Wash.)
The Sibling Support Project is a national effort dedicated to the brothers and sisters of people with special needs. The project’s network now includes more than 300 “Sibshops” in the United States and 10 other countries.
Sibshops, sponsored by family-service agencies, are places where young siblings of children with special needs can get together for education and mutual support. In the United States, more than 6 million people have special health, developmental or mental health needs. Most have typically developing brothers and sisters who deserve attention, too.
These siblings will remain a part of the lives of family members with special needs longer than anyone – after parents are gone and special-education services have ended. With information and support, these brothers and sisters can help their siblings live dignified lives from childhood to their senior years.
Typically developing brothers and sisters of children with special needs experience some of the same feelings as their parents: isolation, guilt and concerns about the future demands of caregiving. They also face issues uniquely theirs: resentment, peer reactions and pressure to achieve.
These brothers and sisters need the understanding and support of friends, family members and professionals. They also have lessons to share:
1. Brothers and sisters may play many different roles in the lives of their siblings with special needs. Siblings may not be caregivers in any obvious way, and yet their sense of a right to their own lives may still be eroded by the effects of a child with special needs in the family. Regardless of what roles they play, siblings have a right to their own lives, too.
2. These brothers and sisters often have ambivalent emotions about their siblings’ special needs. Family members and service providers should expect and acknowledge those feelings.
3. When families have high expectations for all their children, everyone benefits. Typically developing children as well as those with special needs are more likely to reach their full potential when encouraged to reach just a little further.
4. Some brothers and sisters react to their siblings’ disability by setting unrealistic goals for themselves – and some of them feel they must somehow compensate for their siblings’ special needs.
5. Teasing, name-calling, arguing and other forms of conflict are common among most brothers and sisters – even when one of them has special needs. While parents may be appalled at siblings’ harshness toward one another, much of this conflict can benefit social development. Children learn each other’s limits – and their own – when they are not overly protected from the rough-and-tumble of everyday family life.
6. Some siblings live with brothers and sisters whose behavior is challenging – and sometimes even threatening. All siblings deserve respect for their personal safety.
7. 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 brothers and sisters often face such a gap. Like parents, they want to know that they are not alone with their unique joys and concerns. Many hospitals and clinics that serve children with special needs now offer groups for their siblings where they can share their experiences.
8. Throughout their lives, brothers and sisters have an ever-changing need for information about their sibling’s disability, its treatment and implications. Parents and service providers can help.
9. Early in life, many brothers and sisters worry about their future obligations to their siblings. Parents may not have all the answers, but they can welcome the concerns, begin making plans and share their knowledge of services beyond the family.
10. Good communication between parents and their children is always important – especially in families who have a child with special needs. Typically-developing children in these families need to know – by deeds and words – that their parents care about them as individuals.
For more information: www.siblingsupport.org.
Responses to questions are not intended to constitute or to take the place of medical or psychiatric evaluation, diagnosis or treatment. If you have a question about your child’s health or well-being, consult your child’s health-care provider.
Prior to his passing, Dr. Brazelton was the founder and head of the Brazelton Touchpoints Center, which promotes and supports community initiatives that are collaborative, strength-based, prevention-focused sources of support for families raising children in our increasingly stressful world. Dr. Sparrow, a child psychiatrist, is currently the Director of the Brazelton Touchpoints Center. Learn more about the Center at www.touchpoints.org.
Reprinted with permission from the authors.