State of Siblings of People with Disabilities
The MSSN has produced a summary brief on current research trends that affect siblings of people with disabilities. Please read State of Siblings of People with Disabilities to learn how research in the field informs the work of the Massachusetts Sibling Support Network.
The Sibling Experience: Understanding and Supporting Our Other Kids with Emily Rubin
Executive Director Emily Rubin was recently featured on Wild Peace’s Podcast Series. In this episode, she explains the many emotions siblings experience when their brother or sister is struggling with mental health issues, and describes the various ways that siblings might respond.
Mental health challenges don’t just affect the child who is struggling, they affect the whole family. For siblings, the experience can be confusing, upsetting, and even traumatic. It can also be rewarding. Emily Rubin is the Director of Sibling Support at the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School, which works with hospitals and other agencies to address the needs of siblings and parents of children with mental health, developmental and special health needs. In our conversation, Emily explains the many emotions siblings experience when their brother or sister is struggling and describes the various ways that siblings might respond. She offers strategies that parents can use to support their other children so they can cope and adjust in the best possible way.
Thank you Wild Peace for the opportunity to talk about this important topic!
Points of Consideration for Families with Typically Developing Children and Children with Disabilities
In this article, we revisit and share a video from Susan Cauley’s cable access show Your Disability Connection. MSSN Board Member, Cynthia Haddad, CPA, and a colleague from the Federation for Children with Special Needs (FCSN) explore how parents can provide an atmosphere of support and love for siblings of people with disabilities.
Strategies To Support Young Siblings
The work of the MSSN focuses on supporting siblings of people with disabilities. At any age, being a sibling can be challenging — and this is especially true for young children who are still learning to navigate the world and their place in it, as well as their own complex emotions.
Parents and caregivers often have hectic schedules. It can be challenging to carve out the space to address each child’s individual needs — despite the deep desire to do so.
If you feel this way, you are not alone. Below are some tips that can help parents and caregivers build resiliency among young siblings of people with disabilities.
Strategies To Support Young Siblings
by Emily Rubin, MA, MSW
1. Talk openly with siblings. The most effective intervention for siblings is for parents/guardians to talk openly with them in age-appropriate language, acknowledging the challenging family life, and the fact that a child’s disability impacts every member of the household.
2. Validate the sibling experience. Listen actively to the sibling, and validate his/her complaints (“I understand you get angry when your brother/sister does such-and-such”). This will let the sibling know that their concerns are important, and that you understand what they are going through.
3. Avoid blame. Try not to blame the child with the disability, and remind siblings that everyone has something he or she struggles with.
4. Help siblings figure out what to say. It can feel uncomfortable for siblings to answer questions about the brother’s/sister’s disability, or to try to explain to friends, relatives, or strangers why the brother/sister is acting differently. Give them language to use that is appropriate to the situation.
5. Encourage siblings to attend sibling support groups. Sibling support groups with adult facilitators provide a safe and welcoming environment for siblings to talk with other sibs who appreciate what they’re going through. Just as parents benefit from talking with other parents of similar children, it can feel both comforting and liberating for siblings to meet others who share their experiences.
6. Try individual or family therapy. Individual and/or family therapy with a trained clinician can be extremely beneficial for siblings, especially for those sibs who don’t want to attend sibling support groups. Siblings shouldn’t have to harbor secrets about their home life.
7. Encourage siblings to have their own lives. Encourage siblings to develop interests and hobbies of their own. This will build their confidence and give them outlets to express themselves outside of the family.
8. Separate siblings frequently. Separating siblings gives them a much-needed break from one another. Spending time apart can be refreshing for siblings and can lead to more positive interactions when they come back together.
9. Help siblings identify “safe buddies.” Safe buddies are understanding friends or relatives they can turn to when home life becomes challenging.
10. Spend one-on-one time. Try to spend one-on-one time with siblings, even if it’s a simple activity like watching television together or walking around the neighborhood. Focusing attention on the sibling conveys the message that the sibling is important, and that you value your time together.
11. Connect with other parents. Parents who struggle with similar issues can provide valuable resources, in addition to advice and support. If a support group for parents of children with disabilities is offered in your community, join it. If one isn’t available, approach your local school or mental health center and suggest starting one.
“A Dialogue with Siblings: ‘Their Story’ of building bridges, strengthening bonds, and advancing community relationships.”
MSSN Executive Director, Emily Rubin, and Board Co-President, Hillary Dunn Stansiz, participated in the Cooperative for Human Services’ event in honor of National Sibling Day. Emily moderated the panel discussion about sibling experiences, challenges, and opportunities to connect individuals with disabilities to our communities.
41st Annual Legislative Reception
The MSSN was honored to co-sponsor the 41st Annual Legislative Reception on March 6, 2019 at the State House! The Arc of Massachusetts and the Massachusetts Developmental Disabilities Council hosted this inspiring event. People with disabilities, family members, advocates, state agency heads and their staff, and legislators gathered to discuss legislative priorities. The MSSN shared information about sibling issues, made great connections and participated in meaningful conversations. Thanks to everyone who participated!
Click here for more information about this inspiring day!
“He Always Kisses and Hugs Me”
This beautiful and honest short video captures the challenges, wonders, and wide range of emotions that siblings of people with Angelman Syndrome experience. Moreover, it brings to light the important role of siblings and the transition to a caretaker role that some siblings assume as they age.
The siblings featured in the video share the importance of an open dialogue with parents about the topic of caregiving and the fine line that many feel between “helping and getting in the way.” Adult siblings expressed gratitude for sibling groups — the opportunity to be in a social environment with others who truly understand the sibling experience.
In this poignant presentation, unconditional love is underscored and an immense appreciation for the sibling with Angelman Syndrome is shown. The challenging parts of the sibling experience are addressed as well. Watch the video here.
The MSSN invites siblings of people with all kinds of disabilities to attend our Adult Sibling Meetups. Get in touch with us here!
Board Member Spotlight: Zachary Rossetti, Ph.D.
Meet Zach Rossetti! Zach joined the MSSN Board in June 2017 and was named Co-President in February of 2019. As an Associate Professor of Special Education in Boston University’s Wheelock College of Education & Human Development, Zach teaches undergraduate and graduate students who will become general education teachers, special education teachers, and related service providers. He conducts research on sibling roles and relationships, family engagement in special education, and friendships between students with and without intellectual and developmental disabilities. Moreover, he contributes to BU Wheelock’s service mission of promoting equity, diversity, and inclusion.
Zach is the oldest of six in his family; his brother Todd, who has a disability, is the fourth of the six. Todd is a huge Boston sports fan (the Red Sox are his favorite), loves chocolate cake (though he can’t eat it anymore because of getting a feeding tube a couple of years ago), and is very social. That he is so outgoing is even more impressive because he does not speak, uses a wheelchair, and needs support throughout his day due to his cerebral palsy. Communicating and connecting with others without speaking is one of many lessons he has taught Zach.
5 Questions with Zach:
1. What does the work of the MSSN mean to you?
First and foremost, the work of the MSSN is incredibly important because it acknowledges the unique roles and relationships siblings may experience in their families. These experiences are often intense, and they can range from beneficial to challenging and everything in between. Raising awareness of these experiences will hopefully result in improved funding and services to better support siblings in their current roles and relationships and to better prepare siblings for their future roles and relationships as their parents age.
Additionally, the MSSN cultivates personal and professional connections among siblings themselves, as well as the organizations and agencies throughout the Commonwealth that support families of individuals with disabilities. Too often, siblings may feel isolated, and families may have needs that are not being met. The MSSN connects siblings and advocates for the support needs of siblings and families. I am proud to be part of this work with the MSSN.
2. How did you become involved with the MSSN?
A couple of years ago, I attended a SibShops training in MA conducted by Don Meyer, which was co-sponsored by the MSSN and Jewish Children’s & Family Service. At the training, Emily Rubin spoke with me about the MSSN. I excitedly joined the Board shortly after.
3. What do you think is the biggest challenge that we face?
Sustaining our efforts and effectiveness over time. This will require funding, of course. Additionally, it seems likely that we will need to grow in order to share responsibilities, especially since, as siblings, many of us may have new roles and responsibilities within our families in the future.
4. What has been the MSSN’s biggest success?
One of the biggest successes of the MSSN is the consistent participation and engagement of the all-volunteer Board. There is an effective structure in place that facilitates regular communication and involvement by Board members. Of course, this is also reflective of the commitment to MSSN held by all Board members. I have been impressed by the Board’s participation and engagement since I joined the MSSN.
5. What mantra do you live by?
Change the world, and have fun while doing it.
Learn more about getting involved with the MSSN by emailing us!
MSSN Volunteer Spotlight: Brittany Bohrer
© Emmybee photography
Meet Brittany Bohrer! She is a wonderful new volunteer at the MSSN, where she is helping to organize adult sibling “meet and greets” and other types of outreach to siblings of people with disabilities. Brittany currently works as a special education science teacher. and enjoys hiking, travel, and reading in her leisure time.
Learn more about Brittany:
What does the work of the MSSN mean to you?
The work of the MSSN, to me, is important in exactly what the name implies. I have found educational, social, and emotional support through my involvement in the Network and have made connections that are incredibly important to me. There is something invaluable about being surrounded by people who understand your experience as a sibling, even if you are not talking about your sibling at every event.
How did you become involved with the MSSN?
I became involved in the MSSN a few months after I moved to the Boston Metro Area. I had previously been involved in the Sibling Leadership Network (SLN) in Washington, DC and wanted to continue my involvement in Boston. I reached out to MSSN Leadership through the website and started meeting people right away.
What do you hope to gain from your volunteer experience with the MSSN?
Through my experience with MSSN, I hope to learn from and feel more connected to siblings in the Boston area. As my sister’s guardian, I am particularly interested in meeting siblings who are also guardians and hope to benefit from some of the many educational opportunities the MSSN offers. I also hope to give back to the sibling community that has given me so much by volunteering in the Boston area and getting more sibs involved.
What mantra do you live by?
There are no bad decisions if you make every decision worth it.
Contact us about our adult sibling events here.
Looking to volunteer?? Reach out today!
The Power of Love: Happy 60th Ron!
By Cynthia Haddad
Originally published by: Special Needs Financial Planning LLC, a specialty practice to Shepherd Financial Partners
For my brother Ron, it has always been about his birthday. Every summer of my adult life, the phone calls would begin with “Are you getting ready for my birthday?”. It would be Ron calling, giddy with excitement, wanting to talk about the plans for his upcoming birthday. The thing is, his birthday is on January 6th.
After telling him how excited I am about plans for his birthday, I remind him that it is my birthday coming up next in August, and then my children in November and then our brother Steve’s is in December, and THEN it will be his birthday, 6 days after the New Year.
Ron has always been, and will always be, “the special one” in our family. This past January was his 60th birthday and we had a big party to celebrate this milestone. It was a surprise party and Ron had a great, great time – especially after he recovered from the shock of it all!
Being with him on his 60th birthday, immersed in the warmth of family and friends and seeing the extraordinary love my parents have for Ron, I am overwhelmed with gratitude.
While they are getting up there in age, their joy and focus on Ron, even after celebrating 60 birthdays together, is so fresh and true; Ron will never grow old in their eyes.
Celebrating Ron’s 60th was also a time for me to reflect back on my parent’s love and devotion to Ron since we were young; a time when there were no entitlements for children with disabilities.
After being told her son was “not educable”, my Mom, as one from a generation of pioneering parents, advocated for her son’s education even though there was no basis for her to do so. She was empowered because she believed in Ron and she knew what he had inside of him.
In 1972, Massachusetts passed landmark legislation, known as Chapter 766, guaranteeing all children the right to a free and appropriate public education. Without this law, coupled with my mother’s advocacy efforts, Ron would have never achieved so much, including:
- Being one of the first people with special needs to graduate from Minute Man Tech.
- Representing Massachusetts in the International Special Olympics.
- Having been gainfully employed after high school throughout his life.
- Living outside the family home, and so much more.
Ron is now a viable part of our society; he works, has friends, goes on trips, lives in an apartment with supports, and is a fully participating member of our family.
We cannot even imagine what it was like for parents of children Ron’s age and older with special needs. At that time, the state’s view was that children with disabilities should be kept in an institution. Parents were told their child would most likely never work or be a part of the community, and other negative stories of a very difficult life ahead. My mother knew parents who literally had their daughter living in a closet in order to protect her from being removed from their family and sent to an institution.
We’ve come a long way. Thanks to the pioneering parents and to the countless parents and advocates who still passionately fight for children to receive needed supports and believe they should be allowed an opportunity to live a full and a meaningful life in the community.
My parents are my heroes. The power of their love for Ron is beyond what I can describe; they have put everything aside to care for and champion him his entire life. As devoted as I am to Ron, I must admit that I do not have the same degree of love for him that my parents do. He is my brother and I am not expected to; I have my husband and children to focus on.
How do I care for him through the ups, downs and every days without losing myself in the middle? How do I honor my parents and pass that intense love forward from generation to generation?
I have found my answer in knowing my limits, what my capacity is and when I need to ask for help from my brothers, my cousins, my friends, my colleagues, and professionals. I know we can never replace our parents’ love but we can surround Ron with a network of family, friends, staff and community who care.
Ron is not just “the special one”, he is the very much loved one by many!
I just came from seeing my brother, Ron, and he is very excited… about turning 61 next January!
A very Happy Valentine’s Day to my loving family!
To my parents, my husband and children, and all three of my brothers…
I thank you for the power of your love.
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