Austen "Always By My Side"

(featuring her big brother, Connor)

Photography by    Randy Bacon

Photography by Randy Bacon

As a little girl, I was always the kid who got in trouble for talking in class. I once had an elementary teacher ask me “Ausy, why do you talk so much?” I said,“Because, I have a brother who's deaf and has trouble talking to people so I have to speak for two people at all times!” My sassy response quickly landed me a seat in the principal’s office.

My older brother Connor is an artist, volunteer, and activist who just happens to be deaf and autistic. Having a sibling on the spectrum comes with its own challenges. Siblings of those with disabilities have different stories than those of their parents, siblings, or other family members, and yet we don’t get to tell those stories very often. No, we aren’t the ones raising them, but we are the ones who go to school with them and hear classmates whisper about their “weird” actions and snicker. We’re the ones who stand by them at every occasion and watch others stare as our sibling reacts to a sensory overload. We’re the ones who watch our communities not understand our sibling and instead of educate themselves and attempt to include our siblings, make fun of them instead. As siblings, it’s not only our role to protect our brothers and sisters - we also must use our experience to help educate others about what our sibling experiences.

My mom always tells people that I was the best therapy she could’ve ever had for Connor. She tells me stories of how I was the only one who understood my brother early on, even before he was diagnosed with autism. When we were little, I didn’t recognize that my brother was “different” by any standard. When teachers would come to my Sunday School class and make me go to my brother’s class instead, I didn’t understand why the teachers needed my help. Connor was being himself. Even if that meant he was yelling while acting out a scene from Power Rangers dressed as Steve from Blue’s Clues, that was just Connor being Connor. In my mind, that shouldn’t have bothered anyone. I haven’t lost that childlike view of my brother’s disabilities. Connor is just Connor, but I still find myself asking the question, “Why is that hard for some people to understand?”.

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Having a sibling with a disability changes a lot of things in a family’s life. As a sibling though, there’s a few extra things we think about. In my daily actions and thoughts, Connor is there. Whom I decide to spend my time with, in what ways I spend my free time, how my actions involve others, any of these things have an involvement (conscious or not) to do with my brother. Any time I think about the future and my plans for it, I have to keep Connor in said-plans. If I buy a house, it needs to have a space for my brother to live. If I get married, my future husband must be just as accepting and loving towards my brother as I am. If I decide to move cities, will my brother like it in that city and have resources like he does in this town? From these thoughts also comes an idea of helping my brother to find his independence. I want my brother to do things that “normal” 20 year olds would do. For my brother to do these things would maybe require some extra help. Whether it be because of his friends not knowing sign language or because of Connor’s troubles in social situations, I would still need to be there to help. Imagine helping your older brother ask out a girl by being his interpreter-it’s not fun. I want to help my brother as much as possible, but Connor also needs to have life/social skills that he can maneuver on his own. These are the kind of ideas I have rolling around in my head. He’s never not going to be by my side, so I can never not plan to have him involved in my life.

Disabilities don’t just change life in the ways that include our siblings, but also changes the way we are as individuals. I’m a registered nurse and work with individuals who are sometimes in the midst of tragedies. These families and patients can have many different emotions and behaviors that they are fully allowed to have because people should feel free to express themselves in hard times. These behaviors and emotions, though, can sometimes leave us nurses in hard-to-handle situations. Having Connor as a brother has made me a better nurse in these times of tragedy. I’m able to meet people where they’re at and wholeheartedly accept them. I’m able to adapt easily to my patient’s needs. I’m able to work with many different types of people and know that I can handle what is thrown at me because I have the knowledge, but also the life skills to do so all because of a great big brother whose diagnosis has helped to make me the woman I am today.

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I tease people and say that my brother will be right next to me on my wedding day as my maid of honor. It’s not so much a joke as it is a reality and everyone else will just have to deal with it because he’s my brother and best friend. We siblings have stories too. Yes, my brother is deaf and autistic but he’s still my big brother. Connor and I are like other siblings: we fight, we tease, we love, we protect one another, and we argue over who gets to control the remote. My role as a little sister has a few differences from typical siblings. Siblings of those with disabilities are advocates. Not only in ways of posting of social media or raising money for awareness, but through our actions. Through the way we include people, through the way we accept others, through the way we plan for ourselves and our sibling’s future. It doesn’t matter the diagnosis, all of us siblings fight for our brothers and sisters the same way. There’s an unspoken bond between us and our siblings that not everyone understands. Everyone doesn’t have to understand our relationship; the important thing is that Connor and I do and we love each other for it. And in the end, that’s all that matters.

April 2018

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You can also check out another story featuring Connor, 'Redefine Success' written by their mom, Jamie - HERE.