Breaking Ground 104 - Supporting Siblings During Challenging Times

Emma Shouse Garton, in addition to her role as Council Public Information Specialist, helps lead TN Adult Brothers and Sisters – “TABS.” She has two younger brothers, Evan and Brendan. Evan has autism and other disabilities.

For most of us, our sibling relationships are our longest-lasting ones. We know our siblings long before we meet our partners or have children. Often, our siblings are in our lives after our parents pass on. For siblings of people with disabilities, these relationships have a lifelong impact. Many siblings eventually take on some level of caregiving for their brother or sister. Some siblings find themselves providing support to aging parents, siblings with disabilities, and their own children – all at once.

For more than a decade, the Council and Vanderbilt Kennedy Center have supported Tennessee Adult Brothers and Sisters (TABS). TABS is a statewide support and information network of siblings of people with different types of disabilities. For many years, TABS hosted conferences for adult siblings. TABS also promoted “Sibshops,” events that offer fun and peer support for siblings ages 8-13.

At TABS events, we hear over and over from participants what a big relief it is to be around other people who “get it.” We’re often meeting people who never knew that a network for siblings of people with disabilities existed. They finally feel like they found people who understand some of the unique joys and challenges of growing up with and supporting a brother or sister (or multiple siblings!) with disabilities. It’s also a safe space to tell all the funny stories that can come with growing up as the brother or sister to someone with a disability. (My go-to story is that time a very young Evan yelled out “Kill the beast!” during a solemn prayer at church – a reference to his Beauty and the Beast phase!)

TABS had a few activities planned for the spring. Then the pandemic began and turned life upside down. Many siblings were thrown into new support roles for our brothers and sisters with disabilities. Some TABS members moved their sibling into their own home due to worries about the health risks of living with older parents or in group settings. Some members were unable to see their siblings due to provider agency or group home visitor rules. Other siblings were overwhelmed with worry as they were unable to travel to brothers and sisters living many states away.

Many TABS members expressed concern and heartache at how the change in routine led to increased anxiety, depression, loneliness and behavioral concerns for their siblings. As with all people with disabilities and family members, we worried about our siblings’ extra health concerns. We wondered what would happen if our brother or sister had to be hospitalized.

We know we can’t “pour from an empty cup.” If we are needed to provide support to our siblings, parents, and our own families, we must take care of ourselves, too. So, TABS decided to begin offering informal virtual meetings every month as a safe place for siblings to gather to comfort and connect with one another, share fears and frustrations about our families and lives, and learn about resources that can help us.

We’ve held meetings monthly since May, and the response has been wonderful. Each meeting has attracted about a dozen or so siblings. Those include familiar faces, folks that TABS had lost touch with in recent years, and many brand new people we’ve been delighted to meet and befriend. We’re also reaching some younger siblings in their late teens and early twenties, who may feel more comfortable connecting to a new group from the comfort of their home instead of at a conference or meet-up.

Each meeting begins with a presentation or discussion on a specific topic. So far, we’ve held panel discussions or hosted presentations on:

• Supporting your sibling’s healthcare and medical needs, and resources for your sibling’s doctors (https://iddtoolkit.vkcsites.org/)
• Person-centered planning and the Charting the LifeCourse framework and tools (https://lifecoursetools.com/)
• Public policy issues related to COVID-19 and disability
• Emotional health, self-care, setting healthy boundaries, and managing family conflict

Then, we go around the virtual “room” and check in with one another. How’s your week going? What’s been the biggest recent challenge? What’s been a bright spot? How can we help? What do you need?

My favorite part of these meetings – and most sibling gatherings in general – is how siblings who are further along in their life journey are eager to give lots of reassurance, wisdom and advice to younger siblings. The younger siblings are often uncertain about how their role as a sibling to someone with a disability fits into their plan for the future. The siblings who have been supporting and caring for their brother or sister for decades constantly remind these younger folks that they need to live their own lives and take care of their own wellbeing, in addition to providing love and support to their siblings.

TABS welcomes anyone who identifies as a “sib” or is interested in learning more about sibling issues. We have participants whose siblings have passed away, those whose siblings were born with their disabilities, those whose siblings acquired disabilities later in life, and with a whole spectrum of different needs and diagnoses. We’re sometimes joined by “siblings-in-law” (partners of siblings), who often become key supporters of our siblings.

If you are interested in connecting to TABS, you can email emma.shouse@tn.gov or follow TABS on Facebook. Look for ongoing posts with resources for siblings and information about future gatherings.

Tennessee Adult Brothers and Sisters (“TABS”) is a statewide network that aims to empower and educate siblings of individuals with all types of disabilities by providing information and peer support. TABS is led and supported by the Council, Vanderbilt Kennedy Center and sibling volunteers across the state. For more information on Tennessee Adult Brothers and Sisters, visit the TABS webpage or follow TABS on Facebook. TABS is the Tennessee state chapter of the national Sibling Leadership Network. Learn more at siblingleadership.org.