Growing up with a brother with special needs is, for lack of a better term, a unique experience. The best way to explain growing up in a home with special needs is that it is like a roller coaster. You don’t always know what to expect, and even if you’ve ridden the same ride a thousand times, it can still be a little scary. Roller coasters are where screaming is normal, you can be terrified and excited at the same time, and it’s ten times more fun if you love the people you’re riding with. Without excitement and discovery, you can’t enjoy a roller coaster. But when you let it, those rides can give you the thrill of your life. (Read 20 Perks of Having a Sibling With Special Needs)
This is how I look back on my time growing up with my brother with special needs. I went through times when I didn’t understand why I had to go through what I went through with my family. I hated the ups and downs, the unexpected, and especially the screaming. I got more dizziness and stomach aches from the roller coaster of my home than I got thrill or excitement. I saw other kids in “normal” families, and was jealous of the level ground they got to walk on, that they didn’t have the up and down experience I felt every day. I know that so many other kids feel exactly the way I felt with their siblings with disabilities. If you or your child has a sibling with special needs, here are three ways that can help you enjoy the ride, no matter how bumpy it gets.
- Try to Understand
I didn’t understand my brother. I didn’t understand what it meant when my brother would experience a full-blown meltdown over a small thing like a haircut. I didn’t understand why we couldn’t be in crowded spaces long or why my brother had to be tightly wrapped in a blanket to be calm. But once I decided to step out of my world and into his, I realized that he was hurting as much as I was.
Through my brother’s eyes, I could see the constant fear that something could go wrong or that the whole world was against me. I felt the shame that I couldn’t control my body and fear that people wouldn’t accept me. And as I continued to watch him struggle and fight to manage his anxiety every day, I realized that he went through even more than I could ever imagine.
- See the Good
After finally understanding everything my brother went through, my bitterness toward what I felt he put me through turned into admiration. Despite everything he experienced, my brother was the most empathetic, most insightful kid you would ever meet. Honestly, I think it wasn’t despite, but rather because of everything he experienced was he capable of being such an incredibly kind and understanding human being. I saw so much good in him, and wanted to help that shine through every difficulty that might stifle it. I saw that I needed to change the world’s mind about what my brother was capable of.
- Do Something About It
Since I realized this, I’ve fought to drive this change. For the past thirteen years, I have been a leading coach at E-Soccer, where I help kids like me understand and value kids like my brother. E-Soccer was a place where my brother and I played soccer together and it became a place where we were able to have fun and build memories together.
In high school, I founded and was the president of E-Club, a club to transform the culture of my high school from being exclusive to being one that included and accepted our disabled fellow classmates. I and some friends also wrote and published an online children’s book for siblings of kids with special needs to give them a character to relate to and a way to understand their siblings (“XCED Presents: Better Together”). “Better Together” is available today on the Apple bookstore for iOS devices.
I have fought to do everything in my power to help kids like my brother be understood and admired.
As siblings of kids with special needs, we make a huge influence. But you don’t have to start a club or write a book to make an impact on your sibling. All you have to do is try to make their ride just a little more enjoyable, and their black hole just a little bit smaller, and that is more than they could ever ask for.