We sometimes struggle with how far or how often to push Ryan outside of his comfort zone. We know that some things, like riding a bike, we cannot force upon him, but that he will show us when he is ready. With others, say trying a new food or paying attention to a new sport, he sometimes needs a push.
But being a parent to a child on the autism spectrum has a way of putting the shoe on the other foot — of forcing me to face my comfort zones or making me try to experience something as Ryan does. This can take the form of deciding how to react when Ryan behaves differently from others in a public setting and being forced to consider whether I ask him to change for me, or leave him alone — for him.
It can also take simpler forms, the way it has in dealing with the issues we have faced this week with Ryan’s extreme anxiety over hockey statistics.
It’s not always easy to explain to people outside the autism community the issues and challenges you face as a family. It’s even harder if you’re too embarrassed to explain the cause. I mean, my entire family life has been turned upside-down this week by shots on goal totals in NHL games. Good luck describing that to the uninitiated — or so I thought. I didn’t go to work on Monday, and I had to explain myself. I stumbled over the words to tell what was going on, but just decided to put it all out there. Just because the cause of Ryan’s panic and anxiety is odd doesn’t make it any less real.
I knew I could be honest in this space, where I find incredible comfort in the encouraging feedback from otherwise total strangers who still know exactly what it is like to walk in these shoes. But I also found that the more fully I explained the situation to co-workers and friends, the more compassion I felt in return. Nobody judged my child or his struggles. They simply expressed caring and support. It wasn’t my colleagues I needed to worry about, it was me. And once again I found that being honest and open worked for the best.
I am happy to report that each of the last three nights has gone a little better than the previous one. Ryan willingly limits his checking of the stats to once every 15 minutes. He still can’t bring himself to watch hockey, and that leaves a giant hole in my heart, but I am encouraged that we can get back to the way things were just a few weeks ago. Ryan even told us so. Just before bed last night — at an early hour both because he hasn’t been sleeping but also to avoid having to worry about stats in games that were going on — he told us “I think I might even be able to enjoy hockey again soon!”
We were thrilled to hear it. This episode hasn’t killed his love of the sport or his favorite team, the San Jose Sharks, it has just made watching games live a terrifying experience. He still expresses joy when the Sharks win and watches the highlights every morning.
This week has forced us to alter routines we’ve had for years. We stopped watching hockey while Ryan is awake. Instead he watches Seinfeld reruns and guffaws at jokes he doesn’t quite understand — but that’s a story for another post. Here, too, some progress has been made. Last night I got home before Veronica and the kids. She texted me that Ryan didn’t mind if I watched my favorite team, the Capitals, but only if I did so in the basement. I replied that sounded like a fair arrangement and settled on to the basement couch with my dinner.
I flipped the game on when it was a few minutes old and saw immediate signs of trouble. The shots were 9-0 Carolina and the Hurricanes were on pace to surpass 30 for the period. Not only that, but Washington was also pacing to hit fewer than 10 shots for the game. Both figures are triggers for Ryan’s anxiety.
I looked at my watch as Carolina’s shot total hit 14 less than halfway through the period. Ryan was due home any minute and would race to the computer to check the stats. He has been calmer the last several days, but that is in part because no team threatened to hit one of his triggers. I moved to the edge of the couch. I pulled up the stats on my phone. My anxiety heightened. I did the math in my head as Carolina remained on pace for 30 shots in the period. I thought about texting Veronica to stall, but she gives the phone to Riley to read texts when they are in the car and I feared my text would be read aloud, starting a panic attack on the road.
Instead I stared at that screen, trying to will Carolina shots wide of the net or into the legs of Washington defenders, anything to prevent them from reaching the net. Washington received a power play, giving me hope they could keep the puck in the Carolina end for two minutes. But I still feared Carolina picking up additional shots on the short-handed chances Washington tends to give up.
I was completely unfocused on the outcome of the name. I paid attention only to shots. Carolina’s paced slowed a bit and I allowed myself to exhale, but it was still too close for comfort. Just then, Ryan arrived home. I heard his footsteps race to his room and to the computer to check. I braced for the worst — the pained screams of panic and fear we have heard so many times recently.
Instead — nothing. I emerged from the basement to tell Veronica about the perilous situation. We both stopped to listen for a reaction that never came. Carolina’s pace must have slowed just enough to prevent an issue, or Ryan is getting better at managing his anxiety, or both. The rest of the evening proceeded without incident. He even let me watch the game in the living room, but refused to be in the room while it was on.
He still got up at 3 a.m. to check final stats and never really went back to sleep, as has been the case the last several nights. But it’s progress. We see a light at the end of the tunnel. I am hopeful we can attend a Devils game before the season ends in a few weeks.
While laying awake in bed after Ryan came in to retrieve his iPad to check stats, I thought about my evening. I realized I had experienced the game somewhat as Ryan does, with my focus only on one arbitrary statistic that held the fate of my family’s happiness in its hands. True, I did so with mild annoyance and trepidation, not the abject terror that plagues my son. I have no idea what that experience is like for him.
Still, it was eye-opening. This is somewhat how my son must experience life, breaking down each activity into a bunch of individual aspects, and choosing which of those to focus on — or having the choice made for him. I found it difficult to focus on the whole event, in a way that definitely put me outside of my comfort zone. It’s an uneasy place to exist, and a reminder that I always need to consider Ryan’s feelings when deciding how far to push. I need to try to walk in his shoes — for him, not for me.