Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

My younger brother, Kevin, and I are almost exactly two years apart. It was evident that Kevin was getting sick by the time he turned one year old. Therefore, I don’t have any memories of life before Kevin with cerebral palsy. From the earliest days I have always felt I was given a special gift when Kevin became my brother.

As Kevin grew, his disabilities and needs grew more complex. He needs 24/7 assistance, including help with the most basic tasks of daily life. Growing up in that environment taught me to be grateful for my abilities and view life with the “glass half full” mentality. I said from a very young age that having Kevin as my brother made me a better person; always convinced that without him I would be selfish, dissatisfied, and insensitive. The gift of Kevin has always felt special and made me feel different amongst my peers. In school, teachers called me the “old soul.” I was always looking out for other classmates and I never got into trouble because in my mind, “my parents had enough to worry about.”

When I was eight years old, I was introduced to Sibshops , an extension of the Sibling Support Project. Once a quarter for the next few years I would get together with the local Sibshops group and do fun activities with other young people who have siblings with special needs. At this group, I learned that my characteristics were very similar to those of the other participants. We were resilient, hardworking, compassionate, and had optimistic outlooks about life. We were a group of superheroes in my mind. As gatherings went on, I started to notice that some of the older siblings were starting to discuss some challenges they were facing and worries that they had about the future. I remember thinking to myself, “I won’t have those troubles because as long as I have my extraordinary outlook on life, my superpower, I will be fine.”

As a teenager, my family moved from Tennessee to Montana. I learned that Montana didn’t have a Sibshops program, so I vowed to help bring it to my new home state. I was able to attend the national conference for the Sibling Support Project this past year, complete the Sibshops facilitator training, and start the journey in partnership with a local organization. Activities commenced this past summer with kayaking the Madison River and camping. I listened to many stories from other siblings about their experiences and it brought me back to my youth as a participant. I could sense that connecting with other siblings is as cathartic for them as it continues to be for me. I found myself starting to talk about challenges and worries that I have about the future, however. I was that sibling I thought I would never become.

After looking back through my years as a member of the Sibshops family, I realized that my perspective as a “superhero sib” evolved. Vulnerability, self-compassion, and acceptance for the imperfect are new qualities I have learned to adopt that I may not have learned as quickly had I not connected with other siblings like me. For instance, I now know that it’s okay to be sad sometimes that my brother’s life is hard and he will not have the same opportunities as I do. This vulnerability teaches me that we cannot be invincible superheroes all the time. Through storytelling, I am inspired and learn new perspectives constantly from other sibs. The Sibling Support Project brings us all together and it gives us the chance to connect and learn from one another’s experiences. My new saying is that without Kevin and the Sibling Support Project, my life would be far different and I would not be the person I am today.