So much of our lives is flooded with what someone thinks of us. If its not the petty cool and uncool game we all played in high school, its what did that employer think of me in that interview? We are all that kid we were in high school, sitting at the lunch table looking around at everybody else laughing or glaring. Is he laughing at what I’m wearing? Did she tell him I like him? Does she really like me? Why aren’t they sitting with me today?
They say high school is the worst and best time of your life. But, we never leave high school… Literally, the only thing that changes is bills. I still find myself questioning if my co-worker really means they like my outfit? I still find myself questioning if my friends are keeping my secrets? I still find myself questioning if he’ll ever really like me, or is he just using me?
Unconsciously or not. Regardless if we think we don’t care what other people think. We all have to admit – out loud or just in our heads – we care to some degree. So, I start to wonder, what would it be like to be free of that thought? I sometimes think (and hope) Sammy is free of these thoughts. Could you imagine being so different and struggling every day and then having to feel like everyone is looking at you like you are wearing the most ridiculous outfit or everyone is snickering about what you just did? Enough people already make comments, but to forever be trapped in that endless questioning? On top of everything else he’s got going on.
I hope he’s free of that, and I’m envious if he is.
But then I start to think – isn’t that life? We may claim it’s only apart of high school but really its everyday life. A job interview, a potential mate, a new friend, a landlord, a loan agency, etc. Is it right to hope he is free of that thought? That’s a thought that we all go through, constantly. It’s what makes us humans. It’s what makes us think and feel. It’s what makes us change our behavior.
I’m not saying its right to change the way we act depending on who we are around. But we do. Unconsciously or consciously. I absolutely see this change in my brother, but not because (to my knowledge) he is worried about what they are thinking about him. It just seems to be what he thinks of you and his behavior shows it.
One thing Sammy, Jack, and I have in common is that if we don’t like you or value you – for whatever reason that may be – we don’t give you a second look. Which is something I love, because it shows one quality that all of us have in common as siblings. Regardless of female vs. male or Autism vs. not Autism, we all have that same trait. Which I love.
But is it because Sammy is free of that heart wrenching thought of what everyone thinks of him? Or is it because that’s how he feels and doesn’t know how to “fake it?” And should I be happy he is free of that thought or sad he doesn’t experience an everyday human feeling?
About two weeks ago, Sammy came for a visit. My mom was visiting her friend and we decided to see how he would do overnight somewhere other than his home. We didn't realize until half way through his stay that this was really the first time he had been away from home without my mom.
Typical Sammy wanted nothing to do with any of the cool things I had planned... I thought I'd take him swimming or to the aquarium or to dinner but every time I tried to guide him out of my house he would redirect me to continue his routine he had built within the first few minutes of being here.
He walked up my steps, all the way to my bed, turned around and turned on/off the light a few times, walked down stairs and would walk all the way to the back of my house and turn on/off those lights a few times. He did this over and over. And over. The entire night - he did not even sleep! But seriously, he did not sleep a single minute. I was constantly waking up throughout the night to a light being turned on and shined in my face or just because I was on edge and worried about what he could possibly get into.
Im sure he was like "what the hell?" He had only been to my house once and this was definitely out of his norm. He's used to chilling out in his room on his bed with all of his toys. Here, I had an air mattress for him which he didn't seem like he wanted anything to do with other than to stack all of the pillows and blankets I own on top of it.
On one hand, I was so proud of him for being super calm and adaptive to his new atmosphere for 14 hours but then I felt so bad as well. He had no way of telling me that he missed mom or wanted to go home. Even with his iPad, the most he can ask for is my car or his room - but he so rarely uses those items, does he even know that they're there? Or what they mean?
It was absolutely clear that he was somewhat nervous or stressed with the change considering the fact that he walked the same route for 14 hours straight. The kid never really sits still but when he is walking, there is something usually ritualistic about it. But then I get to thinking - was he just pacing? A "typical, normal" behavior that most of us do when we are lost in thought or stressed? Was this Autism or just a part of being human? The only thing different from him pacing and me pacing when I'm stressed is the fact that he did it for 14 hours straight without sleeping.
Things like this show me a tiny little window that I can peer into and see Sammy in the same world as me. We are doing something so little alike that everyone does. The bridge between me and Autism isn't that big and tough to cross. Why can't we just cross it? But at the same time, am I just looking for ANYTHING? Is he even pacing or is he just enjoying this activity? And even though he might be showing me he's stressed through his pacing, it kills me that he still can't communicate that he wants to go home - if that is even what he wanted.
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.