Three years ago, when I left for college, my biggest fear was that Sammy wouldn't understand and would think I was abandoning him. I also was afraid of losing touch with my family, especially him since he and I don't have the ability to text like Jack and I do or to talk on the phone my mom and me. This is another thing that breaks my heart, that Sammy is missing out on -- texting, using the phone, visiting me in my apartment, etc.
I have noticed throughout the past few years, especially since I moved to Maryland, that I don't talk to my family as much as I did during my first two years of school. I also feel like I am unable to come home as much and I miss out on little things that I wouldn't miss if I was still living at home. I know this is part of growing up and I've learned to kind of deal with it.
However, my last trip home, my mom sat Jack and me down to talk about Sammy's latest appointments. I had known he had been going to appointments for his bad headaches, but I had no idea they were attending as many as they were. This is what I was afraid of. Those of you who know, I don't just talk to my mom once a day, everyday, but its usually multiple times a day -- in a row. I had no idea what was going on with Sammy and this freaks me out, I talk to my mom so much, why wasn't I picking up on it? If I had been home, I would've noticed that her and Sammy had way more appointments than usual. I would have witnessed and experienced how much his headaches had increased. I would know that it wasn't just a once and awhile occurrence anymore, it was reeking havoc on SAmmy's life, my mom's life, my brother's, his school life, his sleeping, etc.
My biggest fear has come true. I have always made it my main focus to be a part of Sammy's life and what is going on in it. I try to attend as many meetings, therapies, appointments, IEPS as I can. I was to be as informed as my mom and I want to be there for him. Even though I physically couldn't be there for all of these appointments that he'd recently had, I felt like I had failed him because I wasn't catching on to how many appointments he had and how serious the headaches were becoming.
So, my mom informed my brother and me that Sammy would be having brain surgery to relieve him of his headaches. But, that's a story for another day.
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, 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.