Check out the article written by the Maryland Department of Disabilities on Sibling Bond!
Parenting inevitably brings both happiness and worry. There are fresh joys and new challenges with each season of life. As the mother of two teenage girls I see them pushing away from home and each other with an eye toward the wider world. Is this any different when you are a sibling to someone with a developmental disability? This week’s blogger speaks candidly about growing up with a sibling diagnosed with Fragile X and how she encountered the various seasons of growing up alongside her big brother. Sarah Hochbaum currently works as a Supports Planner with home and community based waivers at The Coordinating Center. She is a board member at The Arc Howard County and a staunch disability advocate in her community. She is also a young adult, wife, millennial, daughter, and little sister!
When you think about having an older sibling, you think about all the cool and exciting stuff they’re going to teach you about life. They will be the ones who teach you about music and movies, and what clothes are cool. Therefore, you will be the most fun person to hang out with because everyone will see how amazing and rad your sibling is and want to be your friend too. Woo Hoo!
My experience growing up with a brother with Fragile X encompassed very little of the above listed occurrences. David was a different kind of older brother. At least that’s what I thought as a younger person. When I was a toddler, I remember laying in my bed where I was supposed to be napping. For some reason, though, my brother would sit outside of my door and I distinctly remember hearing him tell anyone who came to the door to leave me be– she needs to rest. As a child, some children in the neighborhood would want to include me in their games, but didn’t want my brother to come along. I would insist, however, that he play an integral part in whatever game we had created. Once I reached middle and high school, I started to invite my brother to every weekend excursion my friends and I would take; especially to the local bowling alley because that was my brother’s favorite activity.
But it was also at that time that I started making new friends. And these friends didn’t understand how to relate to my brother all the time. David would run up to them and excitedly start telling my friends about his day at school, and they would tell him to leave them alone and walk right past him. I really started to feel like my brother maybe was different. My friends’ siblings were all going to college and taking my friends to visit them at their respective campuses. My freshman year of college, I decided maybe it was time to not include him in all my social activities. Friends would call me and I’d go out without him, not caring what he was doing and figuring he’d be better at home with my parents. When I was home for school breaks, I wouldn’t even invite him to do things with me because I wanted to be “cool” now; and being “cool and fun” didn’t include my brother with Fragile X.
This all changed when I graduated with my Masters in Social Work from Adelphi and moved relatively permanently up to New York. Despite having oodles of fun, lively friends, and endless train rides into Manhattan to go to trendy hot spots– all I thought about was my brother back at home. Suddenly I realized he was ALWAYS cool enough for me. He was ALWAYS fun and what was I doing all the way in Long Island so far away from him?!?! Back to Maryland I went. Back to my parents, and my oldest friends who knew us best. Most importantly however, I was back running around town with my big bro in the passenger seat. I would never ever have it any other way. And MAN is my big brother cool.