On World Autism Awareness Day on April 2 in a previous year, my wife posted on Facebook, “Autism is a journey we never planned, but we sure do love our tour guide.”
Although she doesn’t claim to be the writer in the family, her words were incredibly poignant.
Through a display of the color blue, whether it’s donning clothing or lighting up the Empire State Building in New York City, the concept through Autism Awareness Month is to recognize people living with Autism and those impacted by it. The goal is to increase understanding and acceptance through education.
The ironic part is the last thing most individuals with Autism have any interest in is the limelight. Nonetheless, it’s important for neuro-typical people to be aware and realize there are many different types of individuals in this world.
Prior to becoming a parent to a special needs child, I admit to knowing little about Autism. I hadn’t invested time in researching because I had no connection to it in my life.
Soon after Carson was born in 2009, we knew something was different. When he was 3 years old, we learned through genetic testing he had a duplication of chromosome 7. It’s an abnormality with no cure resulting in major developmental delays, anxiety, social phobias, speech and language delays, ADHD, psychological impairments and cardiac and renal defects. A few years later, after we realized his therapies and care would not be covered by insurance, we were advised to seek an Autism diagnosis. I remember it like it was yesterday. The doctor walked into the room, observed Carson and tried to connect with him, summing up in 10 minutes the diagnoses was warranted.
It’s oftentimes easier to explain our child as autistic. It doesn’t matter to me. I could care less about labels. I just want the best for him. If having a diagnosis of Autism will allow him access to more services, it’s fine.
All I know is our family is on an uncomfortable roller coaster ride of a journey. We have incredible highs and disturbing lows. We have tremendous anxiety caused by hourly distractions over doctor’s appointments, therapy sessions, insurance conference calls to ensure a service gets covered and random behaviors only special needs parents can fathom.
National Autism Association posted on its social media this message, “Even if a person with Autism cannot speak or respond, they still hear your words and feel your attitude. So be kind, compassionate and uplifting … always.”
In my world, thanks largely to the school system, Carson faces much more acceptance than ignorance. It’s not something to be taken for granted. It might not always be that way. He is different. Though he never wants to be the center of attention, he often makes himself so because of his own actions and uniqueness.
On one hand, I admire him for doing his own thing. Though I wish he didn’t need them to feel secure and manage his anxiety, I am impressed he is comfortable enough with him to carry in three stuffed animals from home every day to school. He gets a few looks from schoolmates, and I understand why. He’s 12 years old after all.
Most of all I worry about his future as well as our own. I hope we are on a path of eventual independence for him. It will look much different than his big brother’s life, but my dream is for him one day to be able to manage his own life. He will realistically always need his parents and assistance. We read stories of special needs kids being able to live in assisted facilities and in apartments near their families while holding down jobs. We hear other accounts where the kids remain always with their parents.
The key to life is patience. It’s difficult, but critical to wading through the daily challenges with our guy. Accepting and having an awareness of our reality – rather than trying to change and fix him — is important because it’s the only way to ensure he lives his best life today and tomorrow. He’s awesome in many ways, but struggles to get through life without a ton of help.
There have been many incredible online posts and graphics about Autism this month. Many are worthy of sharing, but here’s one I found online that hits home.
Neurodiversity is more than just a term – it’s both a fact and a movement. It’s the concept that all “brain wiring” – or neurological difference – is, and should be recognized, respected and celebrated as part of what is considered a normal variation in humanity.
Labels such as dyslexia, dyspraxia, Autism, ADHD, Tourette Syndrome and many more neurodevelopmental differences would come under this banner, helping us understand their individuality and overlap, but removing the stigma of deficits and disorders and with it the notion that such things can or should be cured.
Embracing neurodiversity is a journey towards finding new language, new understanding and new acceptance for thousands of people in our region and millions more across the globe. It’s a movement that will nurture, celebrate and advocate for all forms of communication and expression, promoting any support that allows autistic people – and any others – to live life fulfilled, happy and on their own terms.”