The One.

At four minutes and 55 seconds into George Yionoulis’s viral video his dad says “Ok, ok, ok. I love you.”

It takes his father less than 5 seconds to sum up exactly what it takes to manage a child on the autism spectrum. More than the words he uses it is the tone of his voice. It resonates with me, because I’ve been there. It resonates, because of that ‘always on’ calming demeanor you need to have even when you’re fucked up from not sleeping.

Always on is not an easy thing to achieve. Being chilled and relaxed doesn’t just happen when you’re faced with a screaming child and you yourself are close to having a meltdown of your very own.

When they are set adrift it’s the only way to bring them back to shore, lest they end up so far away they cant hear your voice over the howling wind. So far away they can no longer see you in the dark arms flailing to get their attention, so they can please just come back. I’ve seen Luke get so far away from me that I wonder whether he can see me when I’m right in-front of him. Right there trying to calm him down. An almost terrified look in his eyes. No fun for either of us.

Sometimes hours pass before I get him back.
“A child with Autism is not ignoring you, they are simply waiting for you to enter their world.” – Unknown
Even under normal circumstances Luke doesn’t always look at me when i speak to him. There’s a good chance he’s not listening to me, but more often than not he’s too busy to look over or he’s heard me and doesn’t see the need to acknowledge what he’s heard and understood.

While I lose my cool here and there or argue with him, I have to be able to submarine my frustration and angst or he picks up on my energy and all it does is push him further down the slope.

Deep breathes…smile…don’t hold him too tightly. Buying my own bullshit then try and sell it to him. I shudder to think what my blood pressure looks like when we have these episodes.

You need the ability to truly change your mood. The Dalai Lama can kiss my ass. Sleep can kiss my ass too. I could stop bullets with this level of zen mastery.

It takes more effort when I’m in public with him though. My nieces birthday party comes to mind. Lu was tired. I was tired. It was weeks after losing his mom. I told my brother we were leaving and made it as far as the restaurant entrance before I started crying. Life is hard when you have to fight to keep your mood in a particular range. A very deliberate effort to stay on the tightrope.

Come June this year, I will be six years past my bedtime.

To have your child screaming and manage your response when all you want to do is reply in caps lock, but you know that will just make things worse. We don’t want that. There are times anything i do makes it worse, but you have to rope yourself in if you have any hope of roping him in and once everyone is roped in you can take a breath.

So to the autism parents out there, be that lighthouse, be their anchor, the voice that pierces through the storm guiding them back home…the one who won’t give up, give in or let them go. You might be their only chance.

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