Looking Past Autism

Funny how in 2005, the word hope became the name of our beautiful baby girl. The simple 4-letter word was selected by my husband. He thought “we hope she sleeps,” after our first-born son loved to dance the night fandango and keep us up throughout his 18-month existence prior to his sister being born.

Hope back then was based on the fact we were both working parents and how would we survive on very little sleep and get through our days?

Four children later and the word dope has many other meanings.

Never has the word been used so desperately, so regularly, and so passionately than after the diagnosis of our fourth child, Samson. Our now 4 year old non-verbal autistic wonder!

Initially the A-word consumed our every thought, our every breath, our every encounter. Like most families, life becomes a series of researching, of trial and error, of therapies, of excuses and fear. We hoped that Samson would talk by age two. We hoped that Samson would talk at age three, and age four and eventually someday.

Our hope that if he could talk to us, then he would be OK. No one would judge him, he wouldn’t stand out, he wouldn’t be left behind, and there would be hope for his future.

This constant hoping became a ritual of sleepless nights, anxiety, over-eating/drinking, chest pain, stress and hiding. Hiding him away from certain social encounters, daily experiences, behavioral expectations.

Autism ruled our roost and eventually took over.

But day by day, the autism began to fade.  At times just for seconds. Then for minutes and hours. And now, sometimes for days!

Reason being…Samson!

He wouldn’t let us forget who he is, why he is here, why he is an important part of our family and why we need him so much!!

The A-ha moment of “Seeing Samson” has finally brought a sense of peace, of acceptance, of joy, understanding and most certainly hope. Samson is an electrolyte beam of energy, inspiration and love. He shows us love every day through smiles, though gestures, through his flapping, his quirks, his uniqueness and through just being around us.

Don’t get me wrong, there are many days when that beam of energy pushes our buttons, pushes us to our last ounce of sanity and we crawl into bed at night hopeful of uninterrupted sleep to recharge.

Yet as daylight approaches and the day starts again, Samson beams through the household at a frantic pace of exploration, of discovery and of necessity.

He can’t use language in its traditional sense to tell us how he feels, what he wants or needs but he lets us know through other ways what he requires. What was once a lost “tourist” in our foreign household is now a huge part of its structure. We see Samson! We see our son.

Our earlier hopes of him being able to speak are still there but shine less bright. Communication is universal. Communication can be non-verbal. In fact, it can be so much more powerful. When we stop, observe, listen and accept, we see the true individual and we can walk through life alongside this wonderful electrolyte beam.

We know he is loved as we stop, observe and listen to his daily encounters with his siblings. The joy they demonstrate when they see Samson; they can’t go to bed at night until they know he is asleep, they won’t go about their day until baby bro has been given his hugs, tickles, acknowledgment, love.

As a parent seeing your children interact in this way is beautiful. They don’t see autism as a barrier, they see their brother. Their one of a kind “ginger” dude brother! And from this connection I know Samson will always be loved, have someone to hold his hand, follow his lead, protect him and have forever friends in his family.

My only hope now is that the outside world will look past the A-word and truly stop to see Samson. To understand his ways, his reality, his way of the world and let him contribute to this world somehow, someway. This understanding of humanity, that every life has a purpose, a place, a possibility to belong should be the right for every child, every citizen of this world.

As Samson’s parents, we are not asking for power, for wealth, for rights above anyone else but ask for understanding and acceptance that “no two coins are the same”.

Hope, that simple 4 letter word is possible for us all!

Written by, Emer O’Hara

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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 and subscribe to our newsletter.