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.

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