A few words on my experiences with my twin brother, Owen, who has GRIN Disorder.

Written by Abigail Pellitteri.

Sometimes when I tell people I have a sibling with extensive disabilities I hear responses such as “I’m so sorry” or “I can’t imagine having a brother like that” or in elementary school I heard from a very educated 3rd grader that I “stole Owen’s nutrients and that’s why he’s disabled.” I was there to see his empty cubby in kindergarten during the school’s open house while every other student had colorful projects overflowing and spilling on the floor. I was there when in middle school his teacher agreed to start a Buddy Club but still made Owen and his classmates eat in the classroom instead of outside with the rest of the school. I’ve witnessed the dirty looks and inappropriate comments. However, as I got older and became more aware of the way Owen was treated,

I realized that as his sister I was born into the role of advocate.

Despite this, my experiences with Owen are extremely similar to that of any pair of siblings.

Owen’s disabilities are not what define him but merely a small aspect of who he is as an individual.

He is the most loving, kind and funny brother I could’ve ever asked for. From him saying “So pretty!” after seeing me in my prom dress to making funny noises to try to cheer me up when I’m upset, he has always been the perfect twin.

It can be overwhelming to think about his future, especially seeing what my parents do for him on a daily basis. The truth is, however, that I know I will do anything I need to in order to make sure that Owen has a happy and healthy life. The knowledge of what to do in every specific situation will come with time and through experience, but advocating for him will never be a burden for me. From keeping track of all the supplies he needs every day to his extensive hospital stays, it can feel like a daunting task but not an impossible one. All this being said, these things make up a very small portion of my time with Owen, it’s just something that comes with having such a great brother.

When I was younger, my biggest concern for Owen was him being treated nicely. Every stare and comment felt so personal that it stayed with me for weeks. I would get embarrassed when Owen would yell or throw things in restaurants. As I got older, however,

I became less concerned with how the world was perceiving Owen and more concerned with how he is perceiving the world.

I realized as I stopped being embarrassed and nervous, people weren’t looking at him badly at all. People only noticed how friendly he was, saying “hi” to everyone passing by or how his laughter was contagious and could fill a space instantly. All I want is for him to be happy and healthy, everything else is secondary in my mind now. As I get older, my concerns for Owen have shifted drastically. The looks from strangers or small comments don’t
get to me in the way they used to. My biggest worry now has more to do with me than him. I think about what my mom does for him every day and worry about if I will be able to take this responsibility and make sure I’m giving Owen the life he deserves. In all reality I know I will be able to take care of him and when the time comes, I’ll do everything I can. No matter how scary and overwhelming it can be sometimes, I will never be concerned about Owen being on his own, because I will always be there for him.