“Spreading awareness at swim lessons.  Move along.  Nothing to see here.” – my message to some friends

“Spread awareness at the public library.  And at the baseball clinic today.” – my friend wrote back

Sometimes I don’t see it.

It is so part of our every day, woven into every minute of every activity we do.  And we “manage” it, using the language and strategies and skills we’ve been given by our son’s teachers and therapists.

It’s not until I watch my son through someone else’s eyes that I see it so clearly.

It was all right there at swim lessons.

We’ve had two sessions so far.  Saturday was our third.  Walking in, I noticed our usual instructor wasn’t there.  Before our sessions started, I had informed them at the front desk that Howie had autism and that there were going to be parts of the lessons that would be challenging for him, but our goal was to get him comfortable in the water and have a good experience so he’d return to learn more.  It’s why we were paying the big bucks for the private one-on-one lessons.

Seeing the new teacher, I went up to her while Howie was taking off his shoes on the bench.  She looked all of sixteen.  Maybe eighteen.

“Hi, nice to meet you.  Just wanted to let you know that Howie has autism, so he might have a hard time in the pool.  I’ll be happy if he’s just in the pool.  You can remind him that he’s earning something from the vending machine.”

She looked at me and said “Okay.”

Um, yeah.

Those words mean a whole lot to me, and to others who work with kids with autism.  To a eighteen year old substitute swim instructor?

I’ll give her credit for trying.

She coaxed Howie into the pool but couldn’t get him to sit down.  For ten minutes of a 30 minute lesson, they worked on sitting down.  She had the toy fish sit down.  He picked it up and squirted water in her face.  She took that away and tried something else.  He responded with nonsense babbling and stuck his tongue out at her.

I walked over and tapped his shoulder. “Remember, you’re earning.  You need to make green choices.”

He sat.

The instructor tried to get him to put his face in the water to blow bubbles.  He blew at the water but not in it.  She took the fish out again and had the fish blow bubbles.  Again, he grabbed the fish and squirted her in the face.

She asked him to sit on the “safety step” – the second step into the shallow end.  He refused.  I could see the lifeguard getting agitated.  I could see the instructor’s confusion knowing that he’s had two lessons already and he wasn’t past the safety step.

I closed my eyes for just a moment.  I opened them and looked over at Gerry, having his lesson on the other side of the pool.  Floating, kicking, swimming.  Quietly.  Easily.

Twenty minutes into the lesson, she got Howie in the pool.  I watched her try to get him to kick his feet and “ice cream scoop” his hands.  He got silly.  At this same point in the lesson last week, something about his hands being ice cream scoops made him laugh.  And once again, here we were.

She had him crawl like a spider along the wall and climb out.  The lesson was over.

Howie was shivering like he had just been swimming in the Arctic.  He had to pee.

As we walked over to the changing rooms, I saw the instructor and the lifeguard share a look.  I know that look.  It wasn’t a mean look.  More of a “that was a hard one” look.

I get it. And it’s important for me to be reminded of it.

At our last appointment with our developmental pediatrician, she said that our long term goal was for Howie to be able to walk down the street and for no one to know that he has autism.  I’m not sure that should be our goal.  The autism – the quirks and challenges that he has – are part of him.

Would I like to have those challenges not be there?  Of course.  Will we do whatever it takes to help him learn life skills and coping strategies to make his life easier?  Absolutely.

But it’s also my job to help the world understand him.  That he’s not being a brat or just a difficult kid, but that he’s processing the world around him differently.  I have to say more than just “he has autism“.  I can’t expect that to mean anything more than a word to an eighteen year old who has never worked with special needs kids.

We’re spreading awareness at swim lessons and everywhere else we go.  But don’t move along.  Take a moment to look and understand.

If someone knows the name of this stroke, please let me know.

Listening to you, I get the music
Gazing at you, I get the heat
Following you, I climb the mountain
I get excitement at your feet

Right behind you, I see the millions
On you, I see the glory
From you, I get opinion
From you, I get the story” – See Me, Feel Me by The Who