“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
July 20, 2011 at 1:15 pm
Sometimes it’s just a bit more difficult to move things along. I so often think about your Laid-back Mom vs Autism-Mom post and try to take deep breaths, reminding myself that our own pace is ok.
I think the dev ped has it wrong. IMO, the goal would be better aimed at having him be able to walk down the street and process things in such a way that he feels ok and can continue to function. Who cares what it “looks like” to others. (Again, just MY opinion.)
July 20, 2011 at 1:33 pm
our own pace is definitely okay. I’ll take him in the water at all.
I agree that she has it wrong. Or that she said it wrong. I agree with what you said completely. It’s about his ability to cope. You are one smart lady
August 3, 2011 at 10:00 am
We’ve had therapists use similar sentiments with regard to “losing the diagnosis” and “looking different”. I agree with you that that is not the ultimate goal. Being able to learn to the best of her ability, process her environment and feelings, cope in the world… and with people… that’s more my hope for her.
July 20, 2011 at 1:16 pm
I’d call it the Dancing Bear, but that is just me. Give that young girl a few more lessons, and she’ll get it. I had to be a mother for two years to a kid with autism before awareness was mine. I’m just impressed Howie let a complete stranger get so close!
July 20, 2011 at 1:34 pm
Dancing bear? I like that. Not sure it will get him very far…
I’m sure she’ll get it someday. He can’t be the first or last kid with autism that she’ll teach there.
And as long as she wasn’t hugging him, he doesn’t care who is touching him.
July 20, 2011 at 2:00 pm
As both a mom of a kiddo on the spectrum and a swim teacher, I really appreciated your post! I take so much for granted that sometimes I forget to give folks credit for at least trying to understand. I assume that the teacher in the pic was just trying to get your son to put his ears in the water? (can be scary with a new teacher!)
It is great that Howie even got into the pool.
July 20, 2011 at 6:20 pm
thanks for your perspective! They were trying to do a back float, but he was long gone at that point. Still focused on the scoops.
July 20, 2011 at 2:14 pm
I have to say that some times, with our 11 year old, our goal is for him to walk down the street and no one notice that he is autistic. We don’t want him to behave “normally”, just what would be typical for an 11 year old. He has a constant stream of information running through his head and it often bubbles to the surface in the form of very random words that he just spits out at a fairly loud volume. They aren’t bad or inappropriate–just random and loud. At 11 he manages very well in school and with many new situations–no thanks to my unwillingness to “give in” to the autism. What we have been trying to convey at this point is that those words don’t really have the same impact or meaning on a random stranger that he interrupts on the street or in a restaurant. We are trying to teach him that not everyone will “get it” when he says the name of a location in a video game. We are not expecting perfection–especially not at home…but I want him to succeed and not get the snot beat out of him when he reaches middle school. For the first time in 11 years, my husband told me that he was embarrassed by our child. In all the tantrums/fits/outbursts, it took 11 years. Unfortunately, we were bowling with my husbands co-workers, and my son had never been bowling before. We had to explain all the little nuances of bowling like you don’t throw the ball, but roll it, and you don’t roll your ball while the person in the next lane is rolling theirs. It made me sad to know that my husband was embarrassed, but it also made me a little happy that it took 11 years for that to happen. I guess what I am saying is that I love my son’s differences, but I don’t want his life to be any harder than it has to be already. If he can make it through the world without bringing any undue ridicule upon himself (especially when I am not there, and we all know middle school kids are really mean), he will be a happy man!
July 20, 2011 at 5:07 pm
Jennifer, this is perfect. I think you just explained exactly what the doctor was trying to say. That it wasn’t about taking away the autism, because she can’t, but about coping with it so that he’s able to be with others without them noticing. I totally get that.
My son does the same random words now. Sometimes it’s nonsense words – just outbursts – and sometimes it’s real words at the wrong time. It’s the most noticeable issue.
What you said was my goal too. I want him to be happy in his skin and help him understand why his skin is that way so that others understand him without dismissing him. I also want others to understand that we’re not all the same too.
(and really – way to go with your husband actually expressing that)
July 20, 2011 at 2:14 pm
Sorry that was so long!
July 20, 2011 at 6:03 pm
never be sorry! I want to hear your thoughts – helps me a lot
July 20, 2011 at 2:16 pm
I thought it looked more like the Karate Kid stroke.
Raising awareness one bewildered 18 year old at a time. You did so well. I might have been the one freaking out about the change in anticipation of a freak-out that may or may not actually happen. 
July 20, 2011 at 6:04 pm
I was worried too about the change in instructor, but I didn’t say anything and I’m not really sure my son even noticed to be honest
July 20, 2011 at 2:19 pm
I can so relate to this. I think it’s one reason I still have not signed Danny up for swim lessons–and he’s 8! Some things just seem so difficult. But you’re right–we have to keep spreading awareness and helping people understand.
July 20, 2011 at 6:05 pm
There are many things I haven’t signed up for because I’m afraid. Swim lessons just seemed like something I thought he HAD to do – life skill. Plus it would take me so long to just get him in the water when we went anywhere with a pool. Baby steps, Patty. You have to do what you’re comfortable with.
July 20, 2011 at 5:43 pm
I’d say that’s DEFINITELY the “dead cockroach floating in the bathtub” stroke. I’m from NYC, and we calls ‘em like we sees ‘em.
*Sigh* to the other stuff.
Jake is going around talking to EVERYONE these days, which means I get lots of quizzical looks and lots of explaining to do. Like this afternoon, walking to his group therapy session, when he yelled: “Hello, Man! You’re walking your dog!” to… a man walking his dog. People generally smile and are pleasant about it. But I get that “Isn’t that kid a bit old to be talking like a toddler?” look. A lot. *Sigh*
July 20, 2011 at 6:06 pm
the dead cockroach! that’s it!
As I said above to Jennifer, it’s the nonsense talking that gets me the most and it’s the one that seems the most…out of place. I don’t know what it is or what it does for him. Sigh here too.
July 21, 2011 at 8:49 am
I think “ice cream scoop hands” are pretty funny too
I could see getting into a total giggle fest over that one right along with Howie!
For all the bumper stickers, license plates, and rubber bracelets I see out there, I am constantly surprised by how many people don’t understand — or who aren’t even aware. I guess we have our work cut out for us.
July 21, 2011 at 5:11 pm
I know the “look” all too well. It reminds us that we’re different and it hurts us way more than it hurts our kids. My kid is oblivious to the look. I’m grateful for that.
I’m all about spreading awareness but at the same I want to live our lives. And I’m getting to the point when I meet people who have no idea what autism is – I kind of want to shake them and say “what planet do you live on?”
And that’s one of our “goals” too – “looking normal.” But I feel like a hypocrite. How can I talk about acceptance and teach self-confidence and then at the same time expect my child to conform to societies expectations of “normal.”
Life would be so much easier if there was a halfway meeting point.
July 23, 2011 at 9:11 pm
Loved this one! Yes spreading awareness every day in every way!