If you kids out there that have a brother or sister with a disability ever feel alone, just know that you’re not, because there are millions of kids that are like us. It’s easy to feel alone, but there are lots of kids out there that are just like us—we just need to connect with each other.
When my sister Addie was first diagnosed with Rubinstein-Taybi syndrome (RTS for short), I felt like I was alone and that no one knew what I was going through. I was wrong, there were a bunch of kids for me to connect with that I am now friends with who have a brother or sister with RTS. It’s great to meet kids that feel the same way that I feel or have gone through the same things I have.
I am glad I am not alone and I get to see many of them every year at something we call the Midwest RTS Reunion. This is a weekend where we meet up with RTS families from across the Midwest, really from across the country, and get together at a waterpark to have fun and spend time sharing our experiences. It’s a great time and a weekend I look forward to all year long!
Then in April we get to go to a hotel for the Circles of Life Conference (for families, teachers and professionals focused on disabilities) to meet kids with all sorts of different disabilities and their families. It’s loads of fun! I do sib shops, which is a workshop just for siblings of kids with disabilities. We talk about hard times and good times and everything in between, but I can’t tell you those stories because the number one rule in sib shops is what happens in sib shops stays in sib shops.
People who don’t have anyone in their family with a disability will never truly understand what our family is like. They can try and try and try but they won’t. Sometimes I think they feel bad for me because my sister can’t talk but they shouldn’t. I like having a sister who is nonverbal because I can always wonder what goes on in her head, and I like that. We have other ways to communicate, such as sign language or using her Dynavox (communication device). We know each other so well, sometimes I think we are closer than a lot of sisters ever get to be.
The best thing about having a sister with a disability is getting to see the world through different eyes because before her diagnosis I didn’t really understand people with disabilities. Before Addie, I was pretty much just like any other kid. I’d often look or just stare when I saw someone with a disability and didn’t really know what to do or say. When I see someone stare at my sister like, “Oh she’s weird,” I just look at them and say, “Do have a question?” Or, “It may not look like it but she really doesn’t like it when you stare at her. How would you feel if someone stared at you like that?” That normally gets them to stop so it’s clearly effective. I’d rather have them ask me or Addie questions if they’re curious rather than just stare.
No matter how many times you feel like no one understands or that you’re alone, remember that there are lots of kids out there like you. They may not look or act like you, but they do know what you’re going through.
Having a sibling with a disability can be pretty hard sometimes, but that makes the good times even that much better. Growing up with Addie and watching her personality blossom has been one exciting ride, but it’s not even close to being over.
I love my sister Addie. And she loves me.