(My Step-Son and I. His identity is concealed to protect him.)
It is one thing to say that we all know what Autism is but you could not truly know what Autism Spectrum Disorder (ASD) truly is unless you live with Autism.
Sure, I am just Step-Dad but I am the one who is here with my Step-Son who has Autism. everyday. In my family, we call him our Super Hero.
Every day is a different day. Some are amazing yet some are heartbreaking. It’s always a step forward then two steps backward. Everyday my Wife and I are back at the drawing board contemplating and bouncing ideas to help our Super Hero strive in life. What always amazes me and truly humbling is that no matter what is thrown in his way is the fact that he is always smiling and laughing. How can someone have the ability to be so happy through tough times. It’s beautiful to me.
Our Super Hero is now Ten years old. His progress in the past year has been so astounding it bestows hope. His history of changing schools and one of the schools treating him awfully. It was not until a series of setbacks of behavioral actions and reactions the mom and I caught on that something was wrong with the school. His new school has been very good to him. For awhile before this new school, things seemed to be going backwards with him. His medication was helpful for awhile then it seemed to stop or reverse his symptoms.
Most parents can put their child to bed at bedtime but those whom parent a child of autism know that doesn not go very smoothly. Most parents get their space after their child goes to bed. Most children of Autism struggle with sleep cycles. The Circadian which is responsible for our sleep cycles in the brain is usually out of wack with Autism. Sometimes our Super Hero did not fall asleep until after midnight. Sometimes no sleep at all. Which meant I was up with him trying to prevent him from disturbing other’s slumbers. Our Super Hero can repeat just about anything we say but not associate the meanings, unless he is ordering food. He would holler all night, stomp and throw things. Everyone was sleep deprived. He also was not potty trained until this previous Christmas.
It’s not like you can say “Hey man, you need to use the potty, no more pull ups. “ or “Hey Super Hero, it’s bedtime. Quiet down, sleep time.” because he just does not comprehend it. One day he will. It’s the repetition that helps him but it takes time and devotion. Many nights I just sit there and wonder how his mom, my wife did it all alone for so long. Can you imagine? Doing all this every single day, 24/7, 365 days a year? For eight years? God bless her. I am proud to call her my wife and our Super Hero my son.
This little guy was not my first experience with Autism. I grew up always having a special place for them in my heart from school. Growing up myself as a deaf and legally blind kid in special education classes helped me bond with them. Now living with my Super Hero, even with the many years I spent around my friends with Autism but I had no idea what it truly was like. A real eye opener, especially for a legally blind guy. It has changed me in so many ways I never imagined. Showed me how to be happy no matter how bad it is.
The problem is that there is not enough being done for Autism. A seldom few stores will host an Autism Sensory Friendly night but it only happens rarely. Our Super Hero is a fun and friendly guy. He loves to get out and socialize but faces difficulties trying to fit in. When I see that, I see myself as a kid trying to fit in too when I couldn’t see the soccer ball to play. Most places are too crowded and loud for most with Autism. A sort of sensory overload. It’s overwhelming and usually leads to meltdowns. As a parent, this is soul crushing not being able to let him explore things, meet people, make friends and have a normal childhood. His only friends is his family. I was blessed to grow up with deaf friends of my age as we all grew up together and still in touch. That was a special bond to us. I cannot seem to find that for our Super Hero. I have cried at night trying to contemplate a solution. A way to ensure he has friends and places he can grow up with. To form memories. Birthday parties from classmates are often declined since usually it is too much for him.
An Autism Sensory Friendly place typically dims the lights, turns down the volumes, add blue calming lights, to mellow it out. So it isn’t a sensory overload. These Sensory Friendly events are not as common as the Autism community wishes.
Once when CBD oil was legalized federally in the New Farm Deal, we decided to try CBD oil treatment with him. After months and months of YouTube videos and reading articles on Autism with CBD oil, we just could not afford to not try. CBD oil is a non-Psychoactive medical Mariuana substance used by many today for many medicinal purposes. The first day of his CBD oil treatment, he was much more calm, logical, and communicative. I will never forget the first hour of the treatment when he blurted out “I Love You guys!” That NEVER happened before. He was doing great then Ohio announced that it is still illegal. So we stopped the treatment. We never heard that sweet “I Love You guys” again. Yes, I still wait for it.
So when you see us out there, us Autism families: don’t be afraid to say hello. Don’t be afraid of hugs, laughter, and giggles. Autism always has a way to make you smile.