Wednesday, September 17, 2014

Part Four: The Great Divide

Sorry for the fuzziness. Not easy to get an action shot!
My last post could really be summed up in a single sentence: Sky didn't do what he was told, so he had to sit out for part of trampoline class.

So, what? 

Exactly! So what.

See, when you have a non-typically developing kid, it's all the little stuff that trips you up. On the surface, Sky got what he deserved for being silly and not listening. But, on the other hand, he got put into a (very public) time out simply because he didn't properly follow John's instructions!

This is the part we have struggled with, still struggle with, and will probably, at least on some level, always struggle with. We want Sky to be typical in his interactions with his peers. We want him to be held to the same standards of behavior and to be treated in similar ways to his peers. After all, these things are necessary for him to make his way in the world without us. But, sometimes, he just can't bridge the gap between where he is and where his peers are. Sometimes the gap is like a crack in the sidewalk, easy to navigate and no big deal. But other times, it as big as the Grand Canyon. And there's really no guidebook for bridging a divide like that.

So, last Monday, I found myself standing in front of the parents' bleachers with a tearful Sky and no good idea of what to do. I couldn't send him back out to the floor to wither under the silent criticism of John, but I also didn't want him to quit doing something he loved just because he couldn't figure out how to get along with the instructor. Then again, I didn't want to talk to the gym manager, either, because I figured doing so would only escalate the problem. For a good 2 minutes, I just stood there contemplating the options while Sky cried silently beside me.

I decided the least bad choice was to talk to the gym manager. 

"Look," I said, "I'm sure John is a good coach, but if I can't at least give him a head's up when Sky is having a more challenging day, then I'm not sure what to do. I mean, I'd love it if Sky could come in every time and demonstrate consistently good behavior. But, if he could do that, he probably wouldn't have an autism diagnosis. I don't want to use autism as an excuse, but I also want to recognize there are still some areas that need work and punishing him for those seems unfair."  

I didn't say much else, because then she turned her attention to hearing and understanding Sky. He told her he was trying his best and he understood that sometimes he didn't do things the right way. He told her it was hard to wait so long for turns, and that sometimes he felt like the other kids laughed at him. He told her he wished John would believe him when he says he really is trying. She asked him if he liked trampoline, and he said, "Yes, I just wish I could do it by myself so people wouldn't misunderstand me so much."

It was kind of amazing and kind of heartbreaking all at the same time. All the joy, all the sorrow.

We left with a promise that she would talk to John and get back to me soon. A few days later, I got this:

After speaking with John, he and I feel that perhaps the best option for Sky is to find another class time or private lessons. I am willing to open up a class to teach Sky myself if we can find a time that works for both your family and my schedule. I know that you also have Pink in a class at the same time, so if you could give me a call, we can try and find something that works.
I would like Sky to feel confident and successful at the end of his class. While John is a wonderful teacher and I think he has been good for Sky, I'm just not sure we are all able to come to an agreement on the best way to work with Sky when he is having a bad day. 

So, we talked, and we set up a time for her to teach an "invitation only" trampoline class. Apparently, there are other boys who need the same kind of support Sky does. The first lesson, it was just Sky and his new teacher. She kept him bouncing and engaged the entire time, and he came off the floor excited and proud. "Did you see how awesome I did, Mom?" he asked When I asked him if he liked his new lesson, he said, "I loved it. It was the best ever!"

So, all's well that ends well, I guess. I mean, on the one hand, I'm really glad (and extremely grateful) that the gym manager recognized the need and was (finally) willingly made changes so that Sky could continue on with trampoline lessons. But, on the other hand, he's in a class by himself, separated again by the sometimes seemingly untraversable canyon between himself and his peers.

Tuesday, September 16, 2014

Apparently, There's a Part 3 (and Maybe Even a Part 4)

Remember back a few weeks ago when I wrote a letter to the manager of the gym where Sky and Pink do gymnastics/trampoline? Even though I thought the solutions we'd come to were imperfect, I was encouraged by my discussion with the gym managers and the coach's introduction of a visual schedule for class.

And, for a couple of weeks, things went well, but then Ren had another spine surgery and chaos found its way back into our lives. With the chaos came behavior regression, which impacted Sky across the board. He got into more trouble at school and spent quite a bit of time in his room chilling out with a book in his swing. Not surprisingly, the chaos impacted Sky in trampoline class, too.

The thing is, if it was possible for me to have a conversation with Sky's teacher John, I'm sure we could have worked through these bumps. Unfortunately, open communication is not really John's style. John's style is my way or the highway, even in his interaction with parents. I was a competitive athlete, so I get it, I really do. And, in an ideal world where my kid isn't on the autism spectrum and doesn't have to work his tail off just to appear "normal," I would want a hard-nosed coach like John pushing him to achieve his goals as an athlete.

But, that's not where we are right now. Right now our goals are much more mundane. We're working on helping Sky figure out how to wait his turn and how to keep from having verbal outbursts even with the sensory assault that comes with a gym full of kids doing a hundred different things.

Pairing sensory overload with Sky's unquenchable desire to jump can sometimes be a recipe for disaster. On good days, Sky can keep it together and do exactly what he's supposed to do when he's supposed to do it. Sure his social skills are a bit rough around the edges, and he can perseverate just a tad too much on Star Wars, but he actually does quite well. On other days, when all our ducks are not in a row for any of a myriad of reasons, trampoline is HARD. I suppose, on those days, I could just keep Sky home. Goodness knows I'd love to shelter him from all those things that are so much harder for him than for his peers. But, he won't learn anything from that, and he sure as heck won't figure out how to adjust and fit in.

I knew that trampoline class would be challenging the week after Ren's surgery, so we did what we could to prepare. We talked about Sky's nervous energy and brainstormed ways to manage it in the gym setting. We read through the list of rules John had given him. We discussed John's expectations, and gave Sky time to make sure he was ready.

Unfortunately, as soon as his feet hit the tumble floor, Sky became a ball of poorly-managed nervous energy; his voice volume was too high and his ability to hear, process, and properly carry out various trampoline-related tasks, too low. As much as I tried to will Sky into settling down and making the best choices, I couldn't help him get a handle on his increasingly out-of-control physical self. (When Sky is really out-of-sync, his body doesn't quite do what he wants it to do, and he looks a lot like a boy who's being disrespectful or goofy.) I saw all of this coming (indeed, I could have predicted it), but it was impossible to talk to John, much less strategize with him about how to head it off.

About 20 minutes into the 45 minute session, John sat Sky out for what looked like silly behavior on the trampoline. I actually think that having Sky sit out for a few minutes is appropriate and can serve to remind him to keep control of all of the conflicting impulses he experiences. But, John didn't just sit him out for a couple of turns. He had Sky sit through three full rotations of his classmates, about 15 minutes in all. At the start of the fourth rotation, when John still refused to hear Sky or to take a minute to talk to him about what had happened, Sky started to freak out. Sitting in the bleachers what felt like light years away from Sky, I knew what he was thinking--he needed John to know he didn't do the wrong thing on purpose.** But, John didn't care why Sky didn't do what he was told; he only cared that he seemed to be defying his authority.

When it became clear that there was no end to Sky's timeoutin sight, and when it also became clear that Sky was about to lose it FOR REAL, I relented and waved him off the gym floor. I probably shouldn't have, but I didn't see what another power struggle with John was going to achieve. This was one of the (many, many, many, many) moments in our lives with autism when there really was no good choice.

Once he had permission to leave the floor, Sky ran to me with tears in his eyes, and said what he'd been wanting to say to John, "I know he thinks I did the exact opposite of what he told me, but I really was trying. I wish he'd believe in me."

To be continued....

** If I had a dollar for all the hours of my life I've spent explaining to Sky the difference between intention and resultant action, I could take a first-class trip around the world. Twice.