My life as his sister: the early years

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I know what you’re gonna say. Most of the world says it. An autistic person’s perspective is more important than the sibling or parent. I get it. Unfortunately, my brother can’t talk so my perspective is as good as we’re gonna get. Besides, I think my perspective is important too.

My brother was born in July of 1992. Back then (according to my mom) people didn’t really know a lot about autism. My mom said when she thought of autism, she thought of Rain Man. But from the moment my brother was born, my mom knew something was off. He wasn’t developing as babies normally do. And yeah, every baby is different. But it was a noticeable difference.

My parents went to so many doctors trying to figure out what was going on with him. One doctor finally told them that my brother had autism. They gave my parents all the information they would need (which is A LOT by the way)

I don’t really remember when or if my parents actually explained to me what autism was or why my brother was different. In all honesty, he was never different to me. This was all I knew. This was what I was born into. I probably never even questioned it. But, when I was little, I used to suspect that my brother was faking it. Well, that was probably more what I hoped than what I believed. My brother is severely autistic. He can’t speak, he can’t even use a toilet. He’s basically a one year old in a twenty-four year old’s body…if that one year old was self abusive. He hits himself, he scratches himself, he opens up his forehead so he’s left bloody all the time. Sometimes, his meltdowns get so bad, the air is thick with the smell of his blood and he would get blood spatter on his walls and it dried under his fingernails.

Life when I was young was exhausting. And I don’t mean that my brother was a burden in any way because he wasn’t as severe as he is now. It was exhausting because it felt like my brother had such a small group backing him. It was just me, my parents, and my step-dad. It felt like the entire world shunned him and was disgusted by him and I felt like he needed to always be protected. We didn’t go to the same school when we were little but the kids at my school still made fun of him because of the few times they’d seen him. And I was furious. Every joke I took seriously, every insult I took to heart. My brother didn’t know he was being insulted so I took all the pain for him. And it’s a lot to take in sometimes. People used to avoid him like the plague. They’d see him rock back and forth and make his noises and people would swerve in such an obvious way to get away from him. And I took that all in.

Funny enough, my best friend of almost eleven years went to his elementary school. She didn’t remember him but still a small world though, right?

Despite all that, things were actually better for him. He was still so happy, so pure. It must’ve been nice to not give two shits about what people said about him or if people made fun of him. He was always smiling, always with his headphones in listening to his music. His favorite at the time was Witchfinder General (believe me, you’re not the only one who has no idea who that band is) which according to my dad was the only band that could ever calm my brother down.

There was such love in my brother’s eyes, the perfect combination of our mom’s green eyes and our dad’s brown eyes. They were so bright and wide and he had freckles across his nose. And sometimes it seemed like he was trying to understand. He looked at you like he was listening. He looked like a normal little boy. But those things are gone now.

The brightness in his eyes is gone. I rarely see my brother smile anymore. The freckles have faded and are replaced by scars, scratches, and open wounds. He’s so disconnected now, barely ever looking up from his CD player. It’s almost like he lost hope or he gave up. Or maybe it’s all his medication that he takes for his rage that by the way, doesn’t work. And why did I suddenly think of this? Why am I deciding to talk about my brother? I don’t know, maybe because it’s autism awareness day today and also autism awareness month. Or maybe it’s because his medication is working so badly right now that his meltdowns have been absolutely horrendous lately and it reminds me of when times were better. Regardless, I feel that my brother’s story should be heard, as well as every other kid like him. And since he can’t speak, I’m gonna have to tell it for him if you all don’t mind.

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