The Seeds of Self-Advocacy

shots on goal
Shots on goal totals like these from last spring can make watching a game a trying proposition for Ryan.

Hockey is back. You know how I know?

Saturday night at 7, just as one of the biggest college football games of the year, Alabama-Texas A&M, was winding down, I was forced to surrender the living room TV for a preseason game on NHL Network.

Johnny Football ain’t got nuthin’ on Evander Kane, Alex Ovechkin, the Winnipeg Jets and the Washington Capitals. That’s how our family rolls (at least when Ryan has the remote).

The game was played at a neutral site, Belleville, Ontario, as part of a promotion where small Canadian towns compete for the title of “Hockeyville” and the honor of hosting a preseason game.

When the NHL plays preseason games at neutral sites, NHL.com doesn’t get the full statistical data that it does for games in regular NHL arenas. Just before puck drop I remembered to mention this to Ryan. I didn’t want him to get upset when he realized that the Web site wasn’t tracking shots on goal.

Ahh, yes. Shots on goal. Our old nemesis. We’ve had a summer blissfully free of the fear of 30 shots on goal in a period or 60 in a game.

(Site note: if you’re new here and have no idea what I’m referring to, please see here, here, here, here, here, here, here, here, here or here. Yes, I’ve covered it a lot.)

Ryan said he was OK without the shot totals. And for the most part, he was. His ears perked up when the totals were mentioned by the announcers, and he excitedly pointed out when the camera shot showed the scoreboard and he was able to see the shots. But the game passed without incident.

By Sunday, it was a slightly different story. Ryan spoke repeatedly of how he was convincing himself not to worry, even when games were “on pace” to hit one of his triggers. But he qualified his strategy as being confined to the preseason.

Dispirited, Veronica and I pressed him. What did this mean for the regular season? Was he going to be able to watch games without the fear ruining it for him? Separately, we both feared a return to the dark days of spring, of panic attacks, emergency appointments with the psychiatrist, altered medications and unused hockey tickets.

Ryan’s next remark snapped us back to the present. He was explaining why he gets worried and said something we had never heard from him before.

“You see, I have autism, and it’s hard for me.”

We were perhaps late in telling Ryan about his diagnosis, something we only began within the last two years. I don’t know if that was correct or incorrect, but we told him when the moment felt right. We had always talked about how his brain was a little different, and emphasized his strengths and weaknesses. Putting a label on it was a very big deal for us, but didn’t seem so for him.

Ryan took it in stride to such a degree that we wondered if he had really taken it in at all.

That’s why it was such a revelation to hear him say it for the first time.

And I can’t lie: It hurt to hear. I am 11 years into this autism journey and the process is ongoing. My thoughts about autism have evolved from “how do I fix my son” to “how do I best help him navigate the parts of this world that are hard for him.” Talking about his diagnosis, both with him and in general, may be a natural step in that progression, but it has never, ever come naturally.

Hearing Ryan verbalize it was just another step in the process, but it’s a milestone for sure.

The sting of those words passed very quickly, and it was replaced by pride in Ryan’s emerging self-advocacy. We both recognize how important a step that is.

We have already seen self-awareness emerge this summer. Self-advocacy is equally important to Ryan’s growing understanding of his differences, strengths and challenges.

If I doesn’t come easily for us, that’s OK. We’ll adjust.

Now if you’ll excuse me, I have to gear myself up to battle the shots on goal demons. They’re out there, trying to mess with Ryan’s favorite thing and chip away at the joy we take in an activity that provides our greatest family bond.

Side-by-side with our self-advocate son, I know we can keep them at bay.

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6 thoughts on “The Seeds of Self-Advocacy

  1. I thitnk that his being able to explain his issues in such a manner couldn’t come at a better time than 7th grade. We all know that there are going to bad times in the coming years, but this is a very positive step for him. As long as it is used as a discussion or explanation and not a crutch to get out of things he doesn’t want to do. Which I am sure you won’t allow. But yeah for him!!

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