For one reason or another, I stopped writing over the past year or so. I feel like I may have let my brother down in that aspect and prior to beginning this post, I tried to pinpoint why I stopped writing. I could give many reasons like I was too tired from work or just didn't have the time or didn't feel like I was getting what I used to out of writing. But to be completely honest, I'm really not sure why. Maybe it was a combination of those things.
I recently moved to Florida to get my Master's degree in Applied Behavior Analysis. Since getting here, I have thought about this very blog post but I could never find myself to write it. It may be the hardest post I've ever had to write.
I am interested in this career path because of my brother, that is never going to change. Moving here was an opportunity that I am especially grateful for and hope that it will benefit Sammy in the future. But everyday, I feel guilty for leaving him behind. Jack has also gone off to school and I wonder if Sammy thinks, where did my brother and sister go? We've been around for everything with Sammy. Just last week, Jack visited and I thought about how much I missed just goofing around with him in the house. I wonder if Sammy misses just sitting on the couch next to us fighting over what TV show to watch or laughing over stupid YouTube videos.
It bugs me to no end that I am so far away from not only Sammy, but also Jack and my mom. The only difference is, it's easy to shoot them a quick text to check in, send Jack a 228th snapchat, or call my mom on the way home from work. Sammy doesn't have social media or a phone. He doesn't know how to text. Staying in touch with Sammy is exactly what I feared it would be. Not to mention, what does he think about still being at home while Jack and I are off living different and new lives? I wish Sammy could have the same opportunities as Jack and I do. Jack is off at college having the time of his life, being independent, starting his career - Sammy is supposed to be starting that chapter of his life right now too.
Unfortunately, going home once a month like I had planned has become impossible for one reason or another. Even though when I went home for Christmas, he was clearly happy to see me - smiling when I got in the car - which absolutely made my year, I still wonder if he resents me or even forgets me a little. Let's be honest, when we lose touch with friends or family, we never forget them - but they do slip our minds a little. The importance and relevance of people in our lives changes all the time. That's not saying any of us value people any less, its just life. We're not best friends with the same person we were best friends 10 years ago. I guess siblings, and especially my relationship with both my brothers, is completely different than losing touch with your middle school friend, but is it really?
Sammy is months away from turning 21 which means his whole world is about to change. He is also becoming more aggressive and self-injurious. It drives me crazy being so far away because I feel like if I was closer I could help with all of this craziness. I know my end goal is ultimately going to help him in the future, but is being so far not only jeopardizing our relationship but also hurting his progress now? Was moving more selfish than it was helpful? Will I ever be totally satisfied or happy if I am always feeling guilty?
I know that almost everyone says at one point in their life that they are not where they expected to be at whatever age. I had this idea in my head that I would always be right down the street from Sammy and by now, I would have this incredible program created to change his life and others like him. But I'm not down the street, I'm a plane ride away. I tell myself everyday that I shouldn't feel bad for doing what I need to do to help his and my own future, but I do. I feel awful.
Autism from a sibling's point of view...
My name is Paige and I am 26 years old. I graduated from Towson University with a Psychology Bachelors Degree and from Johns Hopkins with a Post-Bacc Certificate in Education of Autism and other Pervasive Disorders at . I recently left my job at Kennedy Krieger Institute and began my Master's Degree in Applied Behavior Analysis at University of South Florida. My younger brother, Sammy, is 20 and has Autism. He is non-vocal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.