Massachusetts Sibling Support Network, 2011

NO SIBLINGS LEFT BEHIND: SUPPORTING SIBLINGS OF PEOPLE WITH DISABILITIES

INTRODUCING THE PRESENTER

Janet Thibeau Vice President of Strategic Operations at the Massachusetts Sibling Support Network (MSSN) where she provides guidance to the Executive Committee on operational and logistical aspects of all strategic initiatives. Principal of Barlow Thibeau Associates, which offers educational advocacy, conflict mediation and coaching services. Adult sibling of an older brother with learning disabilities. Mother of 5 children who have learning and developmental disabilities.

Massachusetts Sibling Support Network, 2011

AGENDA
The Sibling Experience Supporting Siblings Throughout their Life The Sibling Movement Questions and Answers

Massachusetts Sibling Support Network, 2011

WHY SIBLINGS?
People with disabilities are living longer than before Many people with disabilities now live at home until their parents can no longer provide care Funding options at the state and government level are decreasing

Massachusetts Sibling Support Network, 2011

FACTORS THAT IMPACT THE SIBLING EXPERIENCE

Massachusetts Sibling Support Network, 2011

UNUSUAL CHALLENGES, UNUSUAL OPPORTUNITIES

Challenges Over-identification with their sibling Embarrassment Guilt Isolation, loneliness, and loss Resentment Increased responsibilities Increased maturity Increased sense of self and independence Wisdom and insight Tolerance Pride Vocational opportunities Opportunities

Pressure to achieve
Parentification

Well developed advocacy skills

Social skills Massachusetts Sibling Support Network, 2011

Meyer, D.J., & Vadasy, P. F. (1994). Sibshops: workshops for siblingsof children with special needs .Baltimore: Paul H. Brookes

DIVERSE FINDINGS

Massachusetts Sibling Support Network, 2011

AGENDA
The Sibling Experience Supporting Siblings Throughout their Life As Children As Adults As Caregivers The Sibling Movement Questions and Answers

Massachusetts Sibling Support Network, 2011

LOOKING BACK: WHAT SIBLINGS SAY

In some ways, my childhood was completely typical I had friends, I joined activities, I was my own person. In other ways, it was completely atypical. I never talked about my brother, never brought friends home, and never wanted his life to intersect with mine outside of our house. DM

I learned very early how to judge people. Most of my friends never came to my house. Only my closest friends were welcome because I knew I wouldnt have to explain the locks on everything, and all the other things we had in the house to keep my brother safe. MP
One day when I was 14, my 10 year old brother streaked through the house when some friends were over. I made a joke about it but inside, I was mortified. RE

Massachusetts Sibling Support Network, 2011

PROACTIVE PLANNING: GIVING SIBLINGS A VOICE

Massachusetts Sibling Support Network, 2011

YOUNG SIBLINGS: HOW PARENTS CAN HELP

Massachusetts Sibling Support Network, 2011

COLLEGE, CAREER, LIFE

College

Career

Life

How did I spend my teens? Helping my mom and dad take care of my sister. Where did I go to college? As far away as possible. -CR

Massachusetts Sibling Support Network, 2011

20 SOMETHING AND BEYOND

Massachusetts Sibling Support Network, 2011

TAKING ON THE CAREGIVING ROLE

Research shows that siblings who take on parentaltype roles make very different choices than parents regarding their brothers and sisters needs. When my mom dies, my brothers assume I will take over caring for our sister. I cant say no, but how will I do that? HR My parents were very protective of my brother. As I took over caring for him, I did some things very differently. He and I got closer as his world expanded and blended into mine. ES
Massachusetts Sibling Support Network, 2011

SIBLINGS AS CAREGIVERS

Massachusetts Sibling Support Network, 2011

AGENDA
The Sibling Experience Supporting Siblings Throughout their Life The Sibling Movement Nationally Locally What You can do Questions and Answers

Massachusetts Sibling Support Network, 2011

NATIONAL LEVEL: SIBLING LEADERSHIP NETWORK

Support siblings Encourage leadership Promote family policy initiatives

Massachusetts Sibling Support Network, 2011

LOCALLY: MASSACHUSETTS SIBLING SUPPORT NETWORK (MSSN)

The goal of The Massachusetts Sibling Support Network (MSSN) is to support siblings of people with disabilities in Massachusetts. This support is offered across the siblings lifespan and includes providing information, creating welcoming communities for siblings, and improving access to sibling services.

Massachusetts Sibling Support Network, 2011

WHAT CAN YOU DO?

Massachusetts Sibling Support Network, 2011

RESOURCES
Massachusetts Sibling Support Network www.masiblingsupport.org, info@masiblingsupport.org 617 807 0558 Sibparent siblingsupport.org/connect/sibparent-a-listserv-just-forparents Sibling Support Project www.siblingsupport.org Sibling Leadership Network siblingleadership.org

Massachusetts Sibling Support Network, 2011

AGENDA
The Sibling Experience Supporting Siblings Throughout their Life The Sibling Movement Questions and Answers

Massachusetts Sibling Support Network, 2011