A Summer Conference for Young Adult Sibs
Brandeis University, June 20-22, 2014
Many sibs go through periods of closeness with their sibling, caring for them, and sticking up for them, but that many also have more challenging emotions, such as anger, frustration, or anxiety. Sibs long for a safe space to share their experiences but even more than that, they want more information – information about services and opportunities for their siblings as well as advice on how to navigate the system both with the help of their parents and independently.
We realized that college-aged sibs are underserved and need extra support, as most are in a transitionary period in their lives. Most have never spent significant time away from their sibling and are beginning to feel more responsible for their sibling’s care and wellbeing.
This summer, we will leverage our experience and resources to put on a conference for young adult sibs (ages 18-30) to address these specific gaps. From our dozens of conversations, it is clear that this age group receives fewer services than older and younger age groups and these sibs are often struggling with knowing how to best contribute to the care of their sibling while balancing a new life away from home. Our goal is to help sibs learn about resources, ranging from medical to legal to personal, and to explore the possibility of starting a national movement of young adult sibs. We believe that siblings our age have tremendous power to advocate for quality services for their siblings in the midst of budget cuts and shrinkages. Ultimately, we hope to create a community of sibs that can learn from and rely on one another.
Many siblings of people with special needs must contend with serious disruption in their families while they grow and develop. Despite the fact that the longest relationship an individual with a disability will have is with their sibling, sibs are often not thought of when we talk about individuals with disabilities. In addition, they are often not given the resources to have a successful relationship with their sibling and yet they may be expected to take on the majority of caretaking responsibilities once their parents pass. Growing up with a sibling with special needs can lead to feelings of responsibility, resentment, frustration, pride, joy, and fear and yet many sibs do not feel comfortable sharing these emotions. Many believe that they cannot seek out help because they are the “normal” children and they do not want to create more burdens for their already overwhelmed parents. We hope that our conference will give sibs the space to share their experiences with one another but also gather the information and resources to develop the type of relationship that they want to have with their sibling. College-aged sibs often feel that their relationship with their sibling is stagnant and may be unsure of how to take action to improve that relationship. Overall, we want sibs to feel at peace with their sibling and with their role in their sibling’s future.
The conference will be hosted at Brandeis University, which is located in the Boston area, June 20-22. The three day conference will include speakers, breakout sessions, debriefing activities, and networking amongst siblings and professionals. We are going to bring in leaders in the field of sibs research, legal professionals to go over special needs trusts and long-term care opportunities, psychologists with experience with families of children with disabilities and sibs from diverse backgrounds to share their stories. We will gather as many resources as possible for sibs for a weekend filled with community and activism. (If you would like to see a detailed schedule, you can find it here.)
Don Meyer, founder of the Sibling Support Project
Katie Arnold, Executive Director of the Sibling Leadership Network
Ken Shulman, special needs trust attorney at Day Pitney, LLP
KristaRose Popek, communication specialist at the Lurie Center for Autism at Mass General Hospital
Gael Orsmond, sibling researcher at Boston University
The Massachusetts Sibling Support Network and members of their Board of Directors