Monday, March 12, 2018

Losing, Winning & Learning

Everything was going so well at Ethan's last basketball game of the season, only then it wasn't.

They'd been ahead all game, until some kid on the other team made an amazing shot. Ethan had three chances to shoot...and ALMOST got a basket every time. The clock was ticking down. The kid on his team who had almost never made a foul shot got them within one point...and then someone made a dumb play that gave the ball away to the other team. Everyone was screaming. Kids and parents arriving early for the next game were standing on the sidelines yelling. Dan and I looked at each other, knowing where this was going.

At the buzzer Ethan was off on the other side of the gym, refusing to slap hands with the winning team. Then he was gone -- outside -- and Dan was after him with me not far behind. We found him crumpled into the pavement on the side of the building. He would not be consoled: he was screaming, flailing. Ethan was mad at the world, and I couldn't figure out for the life of me how to help him.

I hated that basketball was ending this way. All I could think is for all the time he spends in Social Skills group talking about expected behaviors and identifying emotions and challenges, how I wished in the actual moment he had more specific strategies to actually put to use.

I tried to tell him to take deep breaths. I threatened to take screens away if he didn't calm down. I attempted to give him perspective by asking him to think if a game loss was equivalent to say, someone dying. I told him someone would call the police if he didn't quiet down.

Everyone else on the team was driving to the pizza place for an end of the season party that I hadn't heard about because somehow, I wasn't receiving the coach's texts. That was also why we'd missed the practice the night before. To say we felt out of the loop -- in more ways than one -- wouldn't be lying.

After about 10 minutes we managed to get back to the car. I knew we wouldn't be going anywhere with the team, and not that it really mattered. Ethan didn't have any friends on the team and wasn't particularly attached to the coaches. While not being there wasn't a huge deal, I kept thinking about how many times, in ways much bigger than what we were dealing with, that autism can isolate families. A meltdown means leaving the party...or not making it to the gathering. One little change or "off" day or perceived wrong and suddenly -- poof! Plans disappear. Relationships die off. Connections don't happen.

A side note: if you know a family in a situation like this, don't let it happen. Go to them, if it's easier. Make accommodations. See what you can do to help. To the best of your ability, continue to be welcoming and inviting. Help families to feel a little less alone.

But in our case, I was thinking more about how to help our son -- because what's cute at three is inappropriate at 10 and could become downright dangerous at 15. He's not a violent person. He's a good kid. He just struggles at times with emotional regulation. We just want to know how to help him navigate those waters.

We tried doing a "post mortem" about everything later on, but Ethan wasn't into that. He was wrestling his sisters and dancing to music -- he didn't want to talk about what had triggered his feelings eight hours before. He did tell us one thing -- that everything was so much worse because he thought the whole game that they were going to win. And they lost by one measly point.

My mind flew back to Red Sox/Yankees in the playoffs, Game 7, 2003. The Yankees' Aaron Boone smashed an extra innings homeroom off Tim Wakefield to send the Yankees to the World Series. Gut punch. Utter frustration. Lack of control. I imagined watching that and being autistic, feelings welling up, emotions swirling over. I KNEW what he'd been feeling at the end of the game. I just wish I knew how to help him harness it a bit.

That night, as I was saying good night, I told him despite everything that had happened, we were proud of him, and I was thankful he was able to play. He might have not had a great season, but his skills DID improve -- and maybe he had taught others a few things along the way.

"You're an ambassador, Ethan," I said, before I even realized I was going to say it. "You're an ambassador for autism. Those coaches may have never had a child with autism play for them before. And those guys running the scoreboard? The ones I asked to not let it buzz soooo long and loud if they could because it bothered your ears? Maybe all of these people understand a little better. And the next time they meet someone with autism, maybe they'll be compassionate and have a better idea of the types of things you deal with."

I didn't want to act as if he had the whole world resting on his shoulders, but I thought he needed to know.

"When you tell us what's going on and why you feel the way you feel, it helps us understand autism better," I told him. "And it helps us understand a little bit more about people with autism who can't speak up for themselves, like Uncle Andy."

He liked this idea. I could see him perk up. He was listening intently. "God has an important purpose for your life," I told him. "Don't ever forget it."

And suddenly the sort of a mess of a day we'd had didn't seem so bad, in the grand scheme of things. No, we still don't have all of the answers to help him with controlling himself. As it is I need to check to make sure his social skills group hasn't slipped through the cracks again. But I am trying to follow my own advice. The bigger picture. Maybe he wasn't great at basketball or handling disappointment. Maybe just being there had been the important thing -- for not just him, but the people who coached him. For them to see autism in person -- not a stereotype, but as something that can sometimes simmer under the surface and then rear up at difficult times -- maybe that was invaluable. Maybe he will help other people make fewer assumptions and not just pass autism off as "bad parenting." Maybe he will help paint a clearer picture -- that autism may be Rain Main or someone rocking in a corner or it may be a child who just doesn't look you in the eye and has trouble paying attention if the buzzer's about to go off and melts down at a loss and won't shake the other teams' hands not because he's a brat but because he just feels too much, all at once.

At the end of that game, Ethan's team had a legitimate chance to win. Ethan was the weakest shooter on the team...yet the coaches kept him in the game. They knew how badly he wanted to score just one basket this season. They didn't send the subs in. They let him be out there until the very end. Ethan never scored and they lost and he cried, but most of all, THAT is what I will remember. They gave him a chance. They gambled and lost, but maybe...maybe they didn't lose after all. Maybe none of us did.

Monday, March 5, 2018

Just a Glimmer

We've had our share of fails when it comes to the kids and extra-curricular activities. Actually we've had mostly fails. With Anna alone we tried gymnastics, dance, Brownies, sewing, 4-H and now theatre. Thankfully, theatre has stuck. Ethan has only been interested in sports, and that alone has had its challenges. Until this year he's been fairly adamant about not trying anything else, and we haven't wanted to push it.

Don't get me wrong -- I am not a parent who is overly concerned about signing my kids up for activities. I don't worry so much about them being well-rounded or needing to know now what they want to be when they grow up. In our case, it's really a matter of asking them, at least once they're getting into upper elementary school, to try to do at least ONE thing that gets them out of the house and out from behind a screen.

With Ethan I'll admit there is a little douse of added concern involving areas of interest and how he might find something that would also help him get a job one day. I don't like having to think like this when he's 10, but I feel as if I have to. While we don't always need to be drilling it into his head, he needs to be practicing things like handling disappointment, eye contact, learning to do something that isn't his preferred activity, or just broadening his mind beyond the things he really, really likes and likes to fixate on.

Sports have been great for the emotional aspect and teamwork, but we've also wanted him to get involved with something that would tap into his love of computers. Or music. I've hoped he would take piano lessons for a while but he refuses (clarinet at school is enough). The robotics, STEM-type stuff isn't quite what he likes. But when his school sent a flyer home about an after-school club where the kids would learn how to code and produce some kind of music video, we knew he HAD to do it.

Of course he didn't want to. "That'll cut into my screen time," he protested. He hates having anything happen after school. Getting him to sports practices is always an event.

"The whole club is screen time!" we shot back. After much hemming, hawing, and whining, he said he'd go (which was good, because we were going to make him).

We knew we were onto something the first day. He came out of the school with a big smile on his face and jumped into the car. "I LOVED my class!" he said.

I nearly drove off the road. This never happens. Ethan is not one to be overly enthusiastic about things that don't involve winning a game. When we got home, he wanted to jump on the computer to show us what he'd done and then keep working on it.

And that's what he's been doing now for about the last six weeks. In some ways, we're surprised (we've tried to get him involved with coding before, to no avail). I'm guessing the key has been introducing him to coding through music. He's very musical and especially interested in sound, video game music, electronics, sound effects, and so on. So he's spending a lot of time right now in this coding program looking at other people's projects and finding ways to put his own stamp on them -- things like his own version of Guitar Hero set to songs he likes or scenes from a video game with different sounds. And explosions. Lots of explosions.

Ethan is not a savant and isn't sitting there hunched over a computer programming his own games from scratch. We still don't know at this point exactly what he will end up doing or how or how challenging it will be for him to stay on task and learn in a college setting someday, but we are just excited to see him excited about creating something rather than just consuming.

But more than that, it's especially rewarding to see him excited about something that he's created. I mean, excited enough to talk faster and longer than usual, with a sparkle in his eye. And yeah, as a parent it's immensely satisfying to prod your kid to do something that he actually then ends up loving.

The other night Ethan came across a song he wanted to use for a new project and he began playing it for all of us. But he didn't just play it (via our Alexa) -- he started dancing. This song was full of all sorts of electronic, synthesized sounds (his favorite) and he couldn't get enough of it. Next thing we knew he was dancing all over the TV room.

As I watched him I realized how rare it is to see Ethan dance. It's not normally his thing. And autistic people aren't really known for being dancers. But there he was, bopping around the room, doing utterly ridiculous moves, acting silly and outrageous. I realized than even better than seeing him excited was seeing him happy, full of joy and energy. Without the coding project, we wouldn't have had the song or the dance. We wouldn't have had the moment.

As he danced he looked a little like that feeling you have when you're doing the thing you love to do. You are completely immersed in the moment. And you just can't get enough.

He's only 10 years old, so I don't know. I don't know, but maybe we've seen just a glimmer, just a glimpse of the path he might take. And that's all we really need right now.