The Short Bus Diaries » Confessions About Life With an Autistic Son

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The Gift of His Smile

Every evening, when my son has reached his apex of energy for the day (read: screeching, opening and slamming the doors on his sister’s play kitchen, repeatedly pushing the buttons on all three of those damned refrigerator musical toys at the same time, begging/obsessing over food), we open up the doors of our kitchen and let him escape to the cramped but blessedly functional back “yard” of our home. The word “yard” is more of a wish than a reality. It’s a loose concept of a place that is fenced in and that sits behind our house, but in no way resembles a stretch of grass with trees and room for sprinklers, patios, flower patches, swing sets and summer parties. We have, however, managed to jam a very large, top-of-the-line trampoline back there.

I love this trampoline. And my son loves it even more. He can jump for two hours straight on this, while we cook dinner, file insurance paperwork, spend time with our daughter, and just generally reacquaint ourselves with a bit of mental space necessary to make it through the end of the day. When he’s out there, I can hear him happily screeching, jumping above the top of our wooden fence so that the entire neighborhood can see (and hear) just how damned happy that trampoline makes him.

But what fills my son with even greater joy is to jump “in tandem” with me. He constantly comes back into the kitchen to check on me, attempting to pull me back to the trampoline with him, saying something like “juuuhh” to approximate “jump”. Reluctantly and exhaustedly, I climb up onto the trampoline (the word “awkwardly” should also probably be thrown into the mix) and start jumping.  My son then immediately comes in close to wrap his arms around my hips. This is the signal for me to start jumping for the two of us. So I begin. Our bodies are locked together so that, despite our height and weight differences, my son and I can hit the trampoline with our feet at the same time, followed by a leap into the sky at the same rate. It’s this beautiful little dance that I’ve perfected during the past six months.

And you should see the smile on this kid’s face. He loves it. And he loves me. Even though he may have turned his face away from mine 10 minutes earlier, inside the house, when I demanded a kiss, and even though I may have yelled at him five minutes before that to stop screeching at that brain-piercing pitch, my son still wants to be with me, experiencing the wonders of gravity in sync with me.

At this moment, when my son is fully engaged with me and the world, his smile looks just like it did when he was eight months old. It hasn’t changed a bit, save for the full set of teeth in his mouth.

After my son was diagnosed with autism, I remember being told by several people to remember that this boy — now living with this new label — was still the same boy I had known and loved only the day before receiving the diagnosis. He hadn’t changed, and I needed to remember that. This is one of those quickly proffered, pat-on-the-back, atta-girl kind of phrases that come from well-meaning people who don’t know what else to say. But the truth is, no matter how hard I tried see things that way, I couldn’t shake free of the new lens I would be looking through for the rest of my life. That label does make a difference. And once those autism glasses were sitting on my nose, they started to bring the short history of my son’s life into a different kind of focus. That label — in addition to shifting the entire course of my family’s lives — explained stuff. It warned me about stuff. It symbolized everything that had led up to and would follow that moment of diagnosis. And even though my son didn’t possess that label in the beginning of life, that fate was still dangling over his head, just waiting for the perfect moment to steal him away from us and rob us of a normal life.

But when my son smiles like that on a trampoline, as our bodies bounce together in that synchronized, blissful, utterly simple way, those glasses fall off of my nose for a few minutes, and I can look into my son’s sparkling eyes and see the world as I once did, up until October 22nd, 2010. I feel light and full of hope, and can believe that everything is going to be OK in the end.

Although my son can’t give me much in the way of gifts, I need to remember that he does offer me this one, every evening. I just need to gather up the energy needed to go outside and accept it.

Lacey R - April 26, 2013 - 12:41 pm

Your BEST. POST. EVER!!! Loved this story and peek into your life, Maya.

Ginny - April 26, 2013 - 12:59 pm

Our autistic son – loves his trampoline too! He is 8, and has a typical sister – I so relate to your post….we spend alot of time and resources on our son, and have to make sure we don’t ignore her needs – especially an 11 year old girl! Our life changed as well when our son was diagnosed at 4….it is not an easy journey…thanks for your post!

Maya - April 26, 2013 - 1:01 pm

Thanks Lacey!

Jennie B - April 26, 2013 - 3:32 pm

“…screeching, opening and slamming the doors on his sister’s play kitchen, repeatedly pushing the buttons on all three of those damned refrigerator musical toys at the same time, begging/obsessing over food”

This is my son too.

And his smile is also perfect.

Lizbeth - April 26, 2013 - 11:10 pm

Sometimes the smile I get from my son is all it takes, when things are hard, to turn things around. Hat smile changes everything.

Sarah - April 27, 2013 - 10:22 am

such a sweet post! Smiling is magic!! PEACE

Sallie - May 7, 2013 - 10:45 pm

I’m sure you’ve probably heard of it, but on the off chance that you haven’t I wanted to pass it along — the Aid For Autistic Children Foundation, which offers debt relief for debt **already** incurred treating an autistic family member (up to $150k, I think):
http://www.aacfinc.org/understanding_autism.html

As a disclaimer, I have no link whatsoever to this foundation — and heard of it only recently, when a dear friend received literally life-changing assistance from them and thought of your blog.

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