This week I’m going to be completely honest talk about some of the hardest aspects about having a sibling with special needs.

I love my brother to death and would do anything for him, but there are times where I just wish I was never put in this situation. There have been some times in my life where having him be a part of my life is embarrassing, leads to more work and adds extra stress on our family.

Having a sibling with special needs can be embarrassing. I’m at a point in my life where I’m very open about what it’s like to have a brother with special needs, but I used to not tell anyone and tried to hide it from the world. I would never talk about it to my friends and I would rarely invite people over to my house because I felt ashamed. Looking back I realize how dumb it was to feel ashamed, but that’s where I was in my life. I was ashamed because he was slower at life, took longer to understand simple things and was just awkward in public. We would get strange and judgemental looks from people, and during those times I just wish life could be “normal." Now I realize that this is my “normal” and there is nothing I can change about it, so I learned to embrace it. He has so many great qualities that I can be joyful of. If I just accept him for who he is I can be proud of all he can do, and not be ashamed and embarrassed about what he can’t do.

One of the other embarrassments that I have no control over is his seizures. When he had seizures in public I just felt awkward, scared and even a little self-conscious because everyone was staring at us. One of the worst parts about his seizures is we have no idea when and where they are going to happen because he has had them literally everywhere. He has had seizures at church, Disney World, school, movie theaters, in swimming pools, on trampolines and the list goes on and on.

My first full memory of one of his seizures was when I was about 7 years old. Joel and I were alone working in the front yard sweeping up grass clippings on the sidewalk when he started having a seizure. I knew I needed to first get him to a safe spot, so I rotated his body so that at least his head was on the soft grass. Once I did that, I ran inside and yelled for my parents to get outside as fast as possible. I then ran back to him and attempted to keep him safe till my parents came out with his medical equipment to take over the situation. The worst part of his seizures is just having to sit there helplessly and watch him as his body is convulsing, his face is turning blue and blood may be coming from his mouth because he is biting his tongue so hard.

It sucked because he tended to have seizures when he was having a lot of fun. At Disney World he was meeting some of his favorite characters. On the trampoline he was spending time with the cousin that means the world to him. In the swimming pool he was at a weekend camp with all his best friends. His seizures always put a damper on some of the most fun and memorable times of his life and mine. Going to fun events became extremely stressful for our family because we knew Joel was probably going to have a seizure and there was very little we could do about it.

For me it was hard because there was no one I could relate to about Joel’s seizures. No other kid I knew had a sibling that had to go through such traumatic experiences, thus I felt alone. I think I felt so ashamed and embarrassed because I knew no one else would understand my pain and the struggles our family went through. It was just easier to hide it from the world and not talk about it.

Now I am a lot more open about my experiences with my brother. As I have grown up, I have realized that I can’t control my brother’s seizures or any of his other medical conditions. When we are in public and he does something that I find to be embarrassing, I now just accept it and am not ashamed of it because I realize that is his natural personality and condition. Even though life never has been (and never will be) smooth sailing because I have a brother with special needs, I have learned to make the most out of the hand that has been dealt and will love my brother no matter what.