Autism Awareness: Stuck in a Moment

Luke’s gotten much better at answering questions about ‘right now’. If you ask him what he’s doing or watching or wants…he’ll usually answer.

But the future is anxiety ridden. If you tell him he’s going to Chuck E Cheese tomorrow he might freak out (who doesn’t?!). Mostly, he wants to know what he’s in for and because his concept of the future is hazy, we need to be careful. You can’t say ‘Are you excited to go to Ocean City?’…cause he’ll grab his suntan lotion and beach towel and is ready to go NOW. Right this second. If you talk about School tomorrow, he’ll get nervous and think the school bus is pulling around the corner at 9pm on a Sunday.

This winter he was having a hard time with school, snow days were throwing him into a panic. He needed to know exactly what his schedule was every day. He got out of it by a morning ritual of reading his daily schedule every morning. He still does. He reads it to me as if I’m the one worried about it. It’s the same every school day pretty much but somehow this puts him at ease.

The past is even worse. If you ask him what happened at school or what he ate for breakfast, he really has no clue what you’re after and it can be very frustrating for him. He’ll do whatever he can to escape your badgering.

This means when we send him to school or somewhere, it’s a complete mystery-box. I know this is somewhat the case for most kids…but with Luke…he really is living a different life when we put him on the bus. One that we’ll never really know about. Does he like it? What does he do? Who are his friends? What was fun? What was said? Did he eat? Did he play? Did he cry? Was he happy?

No clue.

We get a quickly written report, but otherwise 5 days a week nearly 8 hours a day is a black hole.

Truth is, he has a lot of ‘the past’ bottled up in his head — but communicating it is something he hasn’t quite figured out yet. Outside of manifestations of fear and anxiety…the past is gone. Talk of the future confuses him.

He lives right now. This second.

There’s something to living in the moment for parents too. When kids are first diagnosed with autism, you go into the whole mourning process (I’ve talked about this in previous posts)— you lose the goofy dreams you had when the baby was born. Watching your kid be a NBA all-star or starring in the high-school play or winning a scholarship to Harvard or even simple things like teaching them to throw a ball in the backyyard or introducing them to your favorite movies or something. Things are different. Life needs an IEP.

Sometimes you hang on to the past, not only when they were different, but when you were. A time when you imagined Birthday Parties and Disney World trips and Weddings and forging a adult relationship…like you had with your parents. You hang on to that imagined future.

At the same time, you spend a significant amount of sleepless nights mulling over ‘what happens in the future’? When he gets bigger and is still having tantrums? When he’s 30 or 50? When you’re too old to chase? When you’re not around? When there’s no one left that understands…?

Or even the near future, what happens when he changes schools? What about when he gets that shot at the doctor? What about tomorrow at the dentist?

Living in the past is just self-pity, living in the future is unproductive and fuel for anxiety. We spend our lives traveling into alternative futures that will never happen or past versions of ourselves.

The sweet present is where it’s at. A place you can live, love and laugh. Enjoy what’s in front of you. The present something you can actively fix or break or make better or worse. It’s real. It’s here. We can do something with it.

Another lesson Luke is teaching us — deal with Today, deal with right now. Why worry too much about what is already done? Or what could have been? Or what might be?

It’s an old cliche…but one we never really seem to learn.

Today is good. Enjoy that. Tackle that.

Luke knows.




Jamie Nash is the screenwriter of several films. He writes about pop-culture, writing, and being a dad of a cool kid with Autism. Follow him — @Jamie_Nash

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Jamie Nash

Jamie Nash

Jamie Nash is the screenwriter of several films. He writes about pop-culture, writing, and being a dad of a cool kid with Autism. Follow him — @Jamie_Nash

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