Still - A memo from the autistic
Every now and again I meet someone who reminds me of my old self. Someone who gets really uncomfortable around my autistic child
Today I saw someone I have not seen in years. I introduced them to my guy. When they noticed that he was different I saw their entire expression change. I saw their brain stamping my little guy with a tag that reads “out of order”. Once I explained what my son’s diagnosis was they looked at Noah who was playing nearby and said “I don’t know what to say, except I’m sorry for you.” They gave me a quick pity hug and moved along.
Am I angry at their reaction. No. Because that is how I would have been. I used to be afraid of people who were different. I am ashamed to admit that I used to think of people with handicaps as people who needing fixing.
Yep. I was a ultra once in a generation kind of super jackass.
Now I know better. Because I have seen first hand children who have been labeled as disabled do things that can only be described as miraculous. I have been a witness to my own child defy the expectations that the world has laid out for him. I know that despite what some people think of children with autism there is STILL A BRIGHT LIGHT SHINING WITHIN.
So on behalf of my son. I decided to channel his consciousness and come up with what he would say to someone who felt like he was something less than perfect. I think this is what he would say.
From Noah. To the world. You are on notice. I am still here.
I am not broken. I am not ruined. Please don’t look at me like I am. Just because I am autistic it does not mean I can’t recognize someone who has given up on me before they even know me. Keep your false praise secured safely somewhere behind your social filter. I am not contagious. I will not bite you and give you the “Autism Flu”. Yes, there is times when I need help. Who doesn’t? For those of you who help me find my footing…thank you. For those of you who think I am less than you, then please kindly get the holy hell out of my way. I am just like you.
I have a definite purpose. Just like you do…
I have imagination. Just like you do….
I have dreams. Just like you do…
I have a soul. Just like you do…
I have weaknesses . Just like you…
I need people to fulfill my potential. Just like you do…..
I feel sad when people refuse to understand me. Just like you do…..
I have the ability to make this world a better place. Just like you do….
I have a life story that deserves to be written. Just like you do….
I deserve a chance to figure out who the heck I am. Just like you do….
If you get to know me then I promise you will find something amazing. You will find a person is totally engulfed in the moment. I don’t worry about three days from now. I worry about right now. I am here while other people are borrowing trouble from the future. Once you spend time with me you will realize that I am a reminder that we are meant to celebrate the present. To drink in each moment and to not be afraid to be intoxicated by it. If you take the chance and look past my label of autism you will find a boy who loves unconditionally.
I know that there will be people who will never understand me. These are the people who will avoid me because I scare them. They will put me in a nice little box and write me off for a while. Someday though, they will figure it out. It will dawn on them that under my quirks, and my seemingly odd behaviors, and difference is a treasure trove of talent that the world has never seen. I am the kind of light that cannot be eclipsed for long. It is only a matter of time until they figure out that they have to give everyone a chance.
Just like I do…..
So I have autism. So what? I am still alive. My body is not a captain-less ship. There is someone at the helm…there is still a light on inside me! I am still a note that will be played. I am still searching for answers. I am still in side this body that acts differently than yours!
I am still in here!!!!!!
STILL - GREAT LAKE SWIMMERS
I'm still turning myself on to the great key, I'm still, I'm still
I'm still mining for light in dark wells, I'm still, I'm still
I'm still a frequency swaying, a leaf in the wind, I'm still, I'm still
I'm still searching for whispers in between yells, I'm still, I'm still
I'm still
I'm still lost in the waves, night after night
I'm still an arrow unshot, fixed in a bow, I'm still, I'm still
I'm still a fire unlit, ready to go, I'm still, I'm still
I'm still loaded and waiting, with anticipation to fly
I'm still studying the patterns in the night sky
I'm still a note that's unplayed, ink on a page, I'm still, I'm still
I'm still a cry in the night, lonesome and high, I'm still, I'm still
I'm still tuned to an instrument of greater and unknown design
I'm still looking for direction, some kind of sign
I'm still tuning myself to the great key, I'm still, I'm still
Categories: Autism
Tags: comedy ozymandian theater john roedel autism advocacy humor
Holy cow John!!! I was going to admit that I cried when I read this, but that would be a lie. More like I bawled. I think you are wonderful. I think that Noah is so blessed to have such loving, hard-working, fighting parents. If anyone can prove the world and their labels wrong, its YOU!!!! I am blessed to know you, and I am eternally grateful to know Noah!
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This was like opening a lovely gift, thank you so much for posting it. I have missed you! God Bless you and your "Bright Light" and know that I am a huge fan of you both!
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