I remember watching you line objects all around the house, down every hallway. Didn’t matter what it was—trains, a hairbrush, remote, kitchen utensils anything that was within reach, you would grab barely glancing up. Little to no eye contact, then your eye contact seemingly disappearing more and more as I watched you slip away from our world to yours.
You never actually played with your brother, just alongside him.
You had no words then only grunts and lots of pointing, using my hand to do the work.
You would scream if I turned a different direction while driving. You obviously wanted to go in a different direction, but how would I know that? I would circle the same direction trying to get from point A to point B with only going the direction that wouldn’t trigger you because certain directions gave you hysteria.
I wish I knew what was happening then.
We knew there must be a reason you were struggling so but we had no answers.
We found ourselves asking questions, then suddenly there it was, “Your son has autism.” You were 17 months old and so beautiful and chubby, but you struggled so much.
I had no words for your diagnosis because I hadn’t heard of it before and knew no one with this diagnosis.
We were told you would never speak or be able to learn things. What does that mean really? You’re growing—what does that mean?
What does a parent do with this?
It was heartbreaking to know I would get a front-row seat at the viewing of your life and your daily struggles. The painful reality of all the fails.
We forged ahead and through the years you had amazing growth and still today growth.
You developed speech at nine years of age!
You can prepare your breakfast, load and unload the dishwasher, make your bed, get dressed, perform ADLs, talk about the love of videos and the mail, and you’re learning to read!!!!
They were wrong, so very wrong. You are amazing.
I refused to believe in the reality of what I was being told. When I looked into your eyes, I could see you and all that you know, but you struggled to get the words out.
You could look at me and I knew your words . . . every. single. time. I knew and still do.
We’ve been working ever since—helping you through life and watching you do things and learn all the while. Yes, learning and growing and finding more words.
Yes, you now have words I knew you did. I never gave up and you work so hard. I’m so proud.
Some still believe those on the spectrum can’t learn or participate in life.
What I do know about our autism, or the hard autism, is simply the fact you won’t find our autism in news headlines or on billboards. Hollywood only talks about the ones with autism who go on to become doctors, motivational speakers, or perhaps the ones who lead more productive lives.
There will never be talk about how it takes sometimes years to master one, single, solitary life skill then to only lose it once again, starting the cycle of relearning this skill once more.
They don’t know about all the families who put their desires for their life on hold to give everything to caring for one with this different ability so their life will be the most and best life.
You’ll never hear of the severe, aggressive autism simply because of the sheer fact that it’s simply not that interesting that it took your child an entire year to tie his shoe, and frankly, it’s just too sad. Just a hard fact.
I decided to share your story, and together, it’s really our story because you helped me see my reason for being your mom and all the things you have brought to my life and what really mattered in life.
Your story has touched so many all over the world. I am so very proud to tell it.
Awareness and acceptance mean sharing journeys until all understand how being different is the way it’s always been. We’ve always been different, but for some, it’s taken longer to understand and embrace.
Our autism journey is shared to help others understand, accept, and become aware of this different way of being.
We are each uniquely different—it doesn’t matter what you call it.
My hope is that one day, the world will truly know that autism is a huge spectrum. Some are only affected to a small degree and will go on to lead full, productive lives, and others are more severely impacted with the future being unknown and bleak.
I hope I see huge gains in autism awareness in my lifetime and when the world views my son and others, they truly see beautiful souls and understand they see the world differently.
It’s time to join and celebrate these differences.
Originally published on the author’s Facebook page