September 18, 2024
The Reality of Autism: Hard, Beautiful, and Everything in Between
When my son was diagnosed with autism eleven years ago, I knew nothing of the diagnosis. Not a thing.
I researched of course.
I found Rain Man. And dark grainy videos on YouTube of individuals on the spectrum struggling.
I wondered where my son would land.
The savant side? The hard to watch side from those videos? Or somewhere in between?
As time went on Hollywood brought us Love on the Spectrum and The Good Doctor. Eventually other shows too.
Our autism looked nothing like those shows.
I worried and I wondered. About everything.
Recently we visited a train depot. Just the two of us. It was a really big deal. He counted down from 20 sleeps.
He put on his own shoes and found his coat. He buckled his seatbelt. He brought a blanket. And his cell phone.
He rode safely the whole entire way.
He didn’t say much. Besides my commentary there wasn’t much conversation.
We couldn’t stop at a store, so we packed snacks. He gasped when he found them as if finding a treasure.
He hyperfixated on the map and counting down the miles and minutes.
He waited patiently while I paid for parking. He went in his own stall in the bathroom and washed his hands all by himself.
We stayed for 45 whole minutes which is 15 minutes longer than we’ve ever stayed before. Then he signed ‘eat’ and off we went to the gift shop. Then a drive thru.
There was no conversation on the ride home. But he did gasp at every train track.
This isn’t the autism I imagined because honestly, I had no idea what to expect.
Hearing severe nonverbal autism about your first born, a three-year-old with blonde hair and hazel eyes, felt impossible.
I’ll tell you so many parts are better than I imagined. And some are harder.
The day to day is confusing and normal to us and wonderful and hard all at the same time.
I feel so lucky to have him in my life.
I worry every single day.
He is the hardest working person I know.
I wish I could make life easier for him.
I pray for a break from the day to day at times.
He is the greatest gift.
I’m lonely a lot.
I need to live forever.
Truthfully, this isn’t the autism I imagined. And in so many ways it’s better.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook.
