For my first blog post, I wanted to share why I’m here and why it’s so important to me. Here is my story.
I have two nineteen-year-old sisters with moderate to severe autism, Emma and Olivia. They are my absolute life and there is nothing in this world that I would not do for them, but let’s just say I’ve had my fair share of trials and tribulations for the last 20 years, give or take.
When I was younger, it was a lot easier for me to shrug off the idea of autism and just categorize it as something my sisters had and I had to deal with it. I never thought about it often or made any kind of reference to my friends because it was so normal to me that it didn’t seem like I needed to explain. My sisters’ behavior were such a natural flow in my life that I almost believed that everyone’s siblings were like mine.
As I grew older, I started to realize the enormity of the difference between my life and my friends’ lives. It became evident to me that I struggle with something everyday that no one else I knew did. As this came to light, I started to wonder how others perceived my difference and if it was good or bad. I struggled with this for some time, trying to figure out how to deal with coming to this realization. I would find people staring at Emma and Olivia to be horrifying and all I wanted to do was to go over and tell them how ignorant and blind to reality they were.
Comments from older generations while out in public would sometimes bring me to tears, and I needed comfort from my parents who were equally as shaken. This happened once when my family and I were out to dinner at a fancy hotel. An older gentleman went up to my sister Emma and said “Young lady! Why are you being so loud? You need to quiet down in here, that is inappropriate.”
I broke down. My dad got angry with him and let him know he upset my family, and he eventually, reluctantly, apologized. I didn’t understand how there were so many people in this world that had no idea what was going on with Emma and Olivia, and how they could be so offensive and arrogant.
It hasn’t been until recent years that I embrace my sister’s differences and enjoy sharing them with the world. If I find someone staring or making a comment, and I’m in close enough proximity, I’ll try my best to explain my situation in a polite manner. To this day, in some situations, I still struggle with the polite aspect. But since autism is so widely known today, it has become less common for people to make comments, yet the staring is still something that is extremely prevalent. I’ve come to terms with the idea that in most cases it’s curiosity, not condescension.
As this came to light for me, I was in high school and it was time to think about college. Everyone was extremely concerned with what they wanted to do with their lives. It seemed to be something that young people my age had much difficulty with, and I didn’t quite understand. I knew exactly what I wanted to do. There was no doubt in my mind that a career with autism and/or other mental disorders was my calling. I am interning with The Autism Research Foundation to give myself a well-rounded understanding of autism outside of my family, and to share my personal experiences and resources with the autism community I have grown up a part of.
I consider myself so lucky that my sisters were brought into my life because I’m one of the only people I know my age that has a clear motive for schooling and life itself. Emma and Olivia have brought me an incredible amount of purpose that I might not have had otherwise. They better me and I wouldn’t be who I am today without them. They’ve touched not only mine but so many others lives that I can’t help but wonder if that is their purpose. I think of them always, every aspect of my days remind me of them, and I couldn’t be happier.
While I spend so much time and energy dedicated to being their ‘guardian’ angel, they’ve equipped me with life skills, emotions, and first-hand experience that would earn THEM the title of ‘guardian angels’ all on their own.
After a Daddy-Daughter bonding nail party, Scarlett proudly displayed her glowing toes for us all to see. Hours later, completely out of the blue, Lilly spoke the most beautiful sentence we have ever heard.
Cue nail polish party: part two. The happy hands, dimple bearing grin and ear covering humming ensued, and we cheered with delight right along. When nighttime came, I pressed her weighted blanket over her in bed, she leaned over and presented her hands, dainty as can be.
