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

Since 2011, the Sibling Support Project in Seattle and Siblings Australia have co-facilitated a closed Facebook group for teen siblings, SibTeen, to share the joys and challenges of growing up alongside a brother or sister with disability. To lend insight on the experiences of teen sibs, we asked members to share their thoughts on three questions for this article in late 2019. Below are some of their responses.

What is one thing you would like people to know about being a sibling of someone with disability?

• I have always been considered the "mature" kid, the good kid, the one who holds it all together, and sometimes I feel like I have to be not only this but also a therapist for my sibling. Consequently, I tend to keep my own emotions and thoughts to myself so as not to bother anyone, or I share them all at once to friends because I’ve kept quiet for so long. It’s lonely and it’s exhausting. Olivia, 16
• I want people to know that being a sibling in general has its challenges, and being a sibling of someone with disabilities is no different. There are ups and downs, but I don’t know any sibling of someone with special needs who would change a single thing. I want people to know that our siblings are just like theirs – they make us laugh and they drive us crazy, but we love them with everything we have. Maddie, 20
• Siblings of kids with disabilities often keep their problems to themselves because they don’t think their friends or anyone around them will be able to understand what their family life is like. A lot of the time we keep things to ourselves and show a brave face on the outside. Tara, 17
• Being a sibling of someone with disability can be challenging, but at the same time rewarding. It gives you a new perspective to look at in life, allowing you to look at things in a whole new way. Hannah, 17

What has been one helpful thing that someone has said/done to support you as a sibling? Who was that person?

• One time at a church youth retreat, I was talking to a college student chaperone. I told her I had a brother with bipolar [disorder] and autism and a special needs sister, and she said, "That must be really tough." So many people try to relate when they don’t have any idea what it’s like to have special needs siblings, and even when they mean well, they belittle my circumstances. It’s nice when people just accept that I live with something that is hard and they don’t have to understand it. Olivia, 16
• I feel a lot of guilt as a sibling, and my parents have been very helpful in reminding me that I still deserve to have fun and be a young adult, too. I often feel guilty hanging out with friends, going back to college, etc. because those are experiences that I wish for my brother too. My parents always remind me that my brother is loved, cared for, and happy. This reassurance has been the most helpful thing for me as a sibling during this past year. Maddie, 20
• My friend Amy told me one night, “It’s ok to let it out and cry,” This meant so much to me because she didn’t lecture me or try and tell me not to dwell on my sister’s disability, she was just there to support me. I hadn’t realised that my friends really appreciated the grief I experience, even though we don’t talk about it much. Tara, 17
• My parents have listened to my side, my point of view, of how it was growing up with my older brother, who has Asperger syndrome. And they’ve understood me better by listening. Danielle, 19
• Something I have been told that has helped me is "I don’t understand but I’m here for you" by one of my friends. It’s admitting that they don’t get it, but still caring anyways that means the most. Josie, 17
• One helpful thing someone has said to support me is that my brother is lucky to have me as a sister, which made me feel very proud. Hannah, 17

How has SibTeen affected your experience as a sibling?

• SibTeen allows me to talk about the stuff going on in my life that regular people would be confused by and the feelings normal people would judge me for. It’s the only community I’ve found where people have gone through the same things I’m going through. Olivia, 16
• SibTeen has been very helpful to me as a sibling. I love seeing all of the stories that people share – both positive and negative – because it makes me realize that I am not alone. With SibTeen, I am able to connect with people all over the world and talk about struggles, questions, and exciting times in our lives and the lives of our siblings. Maddie, 20
• SibTeen has been a great place to connect with, and feel supported by, other kids in similar situations. Often, being a “SibTeen” it is hard to connect face to face with people facing the same issues. Social media has made it easier for me to seek out mates going through the same stuff. Tara, 17
• SibTeen has been a great resource for me. On SibTeen I found a lot of people who get it and have gone through the same or similar. Together we get to share all parts of the special needs life: the good, happy, sad, frustrating, emotional, messy and adventures. They were there to encourage me when I did a sibling panel at a conference, give me advice on friends and school. I don’t know what being a sibling would be like without SibTeen but I am confident that it would be harder. Josie, 17
• SibTeen provides an outlet to hear about other siblings in situations similar to mine, and reminds us we are not alone. Hannah, 17

SibTeen on Facebook is a closed group for any teenaged siblings of young people with disability or developmental delay.