I remember so clearly my son’s 6-year-old year. It, like many, was a noisy year. That year his obsession with baseball came to life. If a year could be summarized in a sound, the sound of 2018 was the repetitive tongue clicking imitating a baseball bat hitting a ball. I swore that clicking sound and the exaggerated swinging of his arms would be the death of me.

He clicked and swung first thing in the morning; long before mommy’s first sip of coffee. He clicked and swung during breakfast. He clicked and swung all day at school; so much so that his teaching staff designated a safe swinging zone for him. He clicked and swung in the shower, in restaurants, in ABA therapy, in the car, and in his bed. Click. Swing. Over and over and over.

I sit here today, 3 years later, dreaming of the click and swing days. At the time I remember feeling so annoyed by the obsession. By the repetitive and distracting noises that filled our house. At times I would throw my hands up in frustration and say “JUST STOP SWINGING”. To which he would coyly smile in my direction just before letting out another click and a swing. Yes, it was annoying. But, it was also harmless.

Today the sounds and gestures that fill our house are not playful. They are not silly. They aren’t even annoying. Today the sounds and gestures that fill our house are scary.

No one told me what the innocent clicks and swings of a 6-year-old could become. No one warned me that noises and gestures and obsessions would grow with age. No one told me that annoyance and silliness could become something so much bigger. So much scarier. And, it makes sense. Maybe no one needed to tell me. Maybe I should of just known. But I didn’t.

I didn’t know that the sound of my son’s voice screaming and yelling would bring me to tears. Would bring me to my knees. I didn’t know that someone so filled with love and joy and laugher; could also be filled with so much anger.

And now, autism is no longer clicks and swings. Now autism is screams and hits.

Autism is holes in walls. Autism is rage filled threats. Autism is a constant longing for something else. Autism is a million little pieces of our lives cast all over the floor. And, autism is a million little pieces of my heart; shattered and put back together each day.  

I am not afraid of my son. I am afraid of what is happening inside of him. I am afraid of what he is feeling that he is not able to communicate to me. I am afraid that the screaming and hitting are an effort to get my attention. And, I am afraid that even when I am standing in front of him waving the white flag, arms wide open to hold him, that he still does not feel seen and heard. Not the way he needs to be seen and heard.

I am afraid that he knows what I know. He knows that I will never understand. That I will never feel things the way he feels them. I will never see things the way he sees them. He knows that despite my white flag and my big hug; I cannot help. I cannot take away his pain.

So, we spend our days tiptoeing from one meltdown to the next. Trying to clear the path. Trying to stay safely in the shadows of the next autism meltdown.

And, I feel silly. Silly for having ever been annoyed with the clicks and swings of my son’s childhood obsession. Those feelings of annoyance have long been replaced with feelings of fear and sadness. Feelings of desperation. A deep yearning for survival.

After 18 months it is getting harder with each passing day to call this a phase. I know that behaviors ebb and flow. I know that diagnosis is filled with ups and downs. Highs and lows. Wins and losses. Hopes and fears. I know that we are still in the very early leg of a life-time race. A journey that has no end.

Today, I feel uncomfortably settled in the friction of day to day survival. We are learning to live in the permanency of autism; and the long-term impact on our family is felt a little more every day.

So just for a moment I close my eyes. I see a silly boy with a coy smile. I hear a click. I see a swing. I remember that it wasn’t always this hard.

And then I open my eyes.

JS