My Incredible Family Who Made Me Who I Am Today
Updated: Jul 21, 2021
Stars of the entire universe tell stories that we can only try to understand. We autistics are similar in this way of only having a small bit of what we are understood by others. The small bits come to neurotypicals through the stories spelled out by those who give their time and energy to work tirelessly in order to provide a really small window into our chaotic world. Although our world is chaotic it is also beautiful in its own way. Waves of familiar memories rush over me, bringing intense emotions with them. Living in this volatile world that is so unforgiving at times is made even harder by the endless hardships that come with my severe sensory and motor challenges. Things are not made easier by my inability to communicate my needs to my family. Laughter is the best thing for those moments when I feel lower than low. My laughter grows life when there is love all around me.
Late in life I realized that my happiness comes in the form of love from others who rigidly change their perceptions of my abilities. So many instances I wanted to give up hope but my family stood by me, so I walked through the tough times and they carried me through. When nobody gives a care about my always-changing regulation it calls for inner abilities of channeling energy to self regulate so I don’t lose my cool in public. Your typical brain tells your body what it's supposed to do like it's systematically wired to and it listens to it. For those of us with autism it does not function properly and part of the message gets scrambled along the way. To amplify this challenging malfunction, our sensory system is so messed up that nothing feels like it is where it is in time and space. When whirling thoughts come in to my mind, it further complicates motor functions. These thoughts interrupt the processing that allows me to be purposeful, causing me to have loops replace what I really want to do. This makes many things so incredibly difficult that they seem impossible. Without playing it up, making this story has been literally exhausting in every sense of the word but putting my thoughts out into the universe is worth every calorie used.
Working towards independence has always been a pipe dream of mine. Laughing to myself when I was a lot younger, I never challenged thoughts of what I was capable of. My mind was glued to the thought of never maintaining a connection with anyone based on my true thoughts without words being put into my mouth. Tons of presumptions were made about me that were way off. They were doing their best to understand me through my behavior, which was my uncooperative body performing the worst things I could imagine. Placing some blame on myself forced me to have a really hacked self-esteem. My thoughts that provided what I perceived as my own intelligence came from professionals willing to confirm I had intellectual disabilities. Making anyone aware of my real intelligence was not possible because of my motor challenges. What was I going to do in this prison before spelling to communicate gave me a voice? Tiny moments where my mind raced through what might happen if I never found communication haunted me.
As I became older my general outlook on life became more worldly. I changed my personal thoughts about my life with Autism to more positive, intentional ones. My favorite happy memories were when I shared quality time working with my little brother on puzzles. He took pieces and handed them to me and I would connect them. Having a brother that made me feel deserving of one-to-one was the most special part of my childhood. I will never forget those moments of complete connection with zero judgment. My unconditional love for my brother is unfathomable. When life got hard it was him who made worldly things seem far less large in my life. So many times, he really was my inspiration to live. My father was always happy to watch us play and laugh with us adding his love when he could. He is one of the smartest men I know and I am forever learning from him. Mom is the glue that holds us all together. Without her love and persistence I wouldn't be where I am today. Laying the groundwork for my path to communication is something I am most thankful for in my entire life.
Something lost in translation may be my love for family as a love unit. What warrants love at home is knowing they have regard for my well being. In life there are many things that change the way we think about the hand we have been dealt. For me, many things have made me happy despite my challenges. Put happiness over everything else and all the small things will fade to nothing. Living with Autism is sort of like winning the lottery but all the money is fake.
Communication and Regulation Partner (CRP): Joey Otero