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The MA Sibling Exploratory Committee: Building Supports for Siblings of Children with Special Needs
By Emily Rubin, Director of Sibling Support, Eunice Kennedy Shriver Center,
UMass Medical School

Siblings of children with special needs face unique concerns. While these siblings have unusual opportunities for growth, they often encounter daily challenges, which their parents may overlook and their peers may misunderstand. As siblings get older, their issues shift: young siblings are trying to make sense of why and how their families are different, older siblings are stepping into care-giving responsibilities that parents managed previously. Siblings tend to become primary advocates for their brothers and sisters with disabilities, but are often unprepared to assume this role. Without adequate information and support, young siblings can grow up resenting the attention given to their brother or sister with disabilities; others can grow into adults who feel overwhelmed by the social, emotional, physical and health care needs of their brother or sister with disabilities. It is increasingly clear that siblings are a critical part of the inclusion model, yet are an underserved population.

Many siblings don’t self-identify as needing help, but they often struggle with powerful feelings of guilt, worry, over-protectiveness and embarrassment. Siblings need opportunities to express their feelings in safe and nurturing settings. The most effective intervention is for parents or guardians to talk openly with siblings at an early age, acknowledging their complicated family lives in age-appropriate language. Parents and guardians can help siblings figure out what to say to friends and relatives about a brother or sister’s special needs. Individual and/or family therapy with a trained clinician can be extremely beneficial for siblings. Sibling support groups with adult facilitators can also provide a welcoming environment where siblings can talk with other sibs who appreciate what they’re going through. SibShops are one model of recreational support group, where siblings have an opportunity to play games with children who share the common experience of growing up with a brother or sister with special needs.

Sibling support services, which range from therapeutic discussion groups to practical information on guardianship, are expanding to meet the needs of siblings across the lifespan. Adult siblings actively involved in the lives of their brothers and sisters with disabilities often participate in professional workshops on future planning, as they navigate complex systems of healthcare, housing, employment and state benefits.

An early and solid foundation of support for young siblings helps them develop into well-adjusted adults who can acquire the skills and knowledge to – should they so choose – advocate effectively alongside their adult brothers and sisters with disabilities. Recently, a group of sibling service providers, mental health professionals, parents and adult siblings within Massachusetts joined forces to create the Massachusetts Sibling Exploratory Committee (MA-SEC). We are committed to developing a statewide network of sibling providers as well as a comprehensive array of services for siblings of people with all types of disabilities. We welcome those who are interested in sibling issues to join us in our efforts.

Resources

  • Sibling Support Project - The Sibling Support Project offers recreational support groups called SibShops for young children and adolescents. Visit www.siblingsupport.org for the SibShop nearest you. The Arc of Massachusetts - Some local chapters of the Arc of Massachusetts offer programming for siblings across the lifespan. Visit www.arcmass.org to contact your local ARC.

  • Think Kids: Rethinking Challenging Kids - Think Kids is an innovative program at Massachusetts General Hospital that provides support groups for siblings of children with behavioral challenges. Learn more at www.thinkkids.org/parents/next.aspx.

  • Wayside Youth & Family Support Network - Wayside Youth & Family Support Network (www.waysideyouth.org) offers support groups for parents and siblings of children with behavioral challenges.

Emily Rubin, the 2009 Gopen Fellow, focused on siblings of children with behavioral challenges. She wrote a parent guide called “Supporting Siblings of Explosive Children,” which can be downloaded at www.communityinclusion.org/sibsupport. For more information about the Massachusetts Sibling Exploratory Committee or sibling services, call Emily at 781-642-0272 or e-mail emily.rubin@umassmed.edu.