Ed. Note: I’m one of those people who has 50,000 emails in their work inbox at any given time, going back about five years. I was searching for something from that time period the other day, when I stumbled upon the following.
It was a blog post I wrote, but never published (nor quite finished) after a family road trip to Washington to see the Capitals play turned into an unexpected disaster.
There are many reasons I blog, but among the ones I value most is this: I want a historical record of our family’s journey — good, bad or indifferent.
I started to read this mostly written post and, even though I remember the trip well, I was still shocked at what it stirred in me. Was this really us? I feel like things would be SO different if this happened today. I recoil at some of the things I wrote, and how we reacted. We’ve seen plenty of anxiety “events” since this one, and I’m happy to see we’ve gotten better at handling them.
History will record it as nothing more than a 4-2 regular-season win.
I will always remember it as something much more. My family was but four of the 18,277 patrons at Washington’s Verizon Center Saturday night. We were in town for what has become an annual tradition in our house — a family trip from our New Jersey home to see the Capitals play in their home arena. We have come so far — SO far — since our first trip, to a February game two years ago (ed. note: in 2008).
The motivation then was as much about attending the Capitals’ Autism Awareness Day as it was about the game itself. I have a son on the autism spectrum, and I had written about the awareness efforts of the Capitals’ then-goalie, Olie Kolzig, himself the parent of a child with autism.
That trip began poorly and ended spectacularly, with my son fully engaged in the proceedings much to his parents’ shock and delight. It eventually became an “In Their Own Words” piece at the Autism Speaks site.
More importantly for my relationship with my son, it sparked something in him: an intense interest in hockey that refuses to fade as all his other obsessive interests have over time. Since that day, my son has done some things I would not have thought possible. He has learned to skate. He has taken part in team sports. We took a successful road trip to Detroit to see one of his other favorite teams play. He has watched games with me, start to finish, discussing the each contest’s minutia — always the minutia — along the way.
In many ways, his life has come to revolve around hockey. For though this interest is obsessive in the way that is so common for children on the autism spectrum, it is also one that we have able to constructively build upon. Play dates with other boys who like hockey are infinitely more successful as there is a common basis for social interaction. It is much easier to find boys who would rather talk about hockey than his previous obsessive interest, garages.
Oh, and about the garages? That interest has completely faded.
In our house, schedules revolve around hockey. Homework is done and baths are taken before games begin at 7 p.m. so that my son may watch and play along with his “hockey guys” an hour or so before bedtime. In many ways, he is at his happiest when hockey is involved. He studies the standings, he watches the highlights. He knows the players, their teams, and which teams they will play for in the upcoming Olympics.
He has found mistakes on NHL.com, the league web site. His room has become a shrine to the sport he loves. All in all, not that different from many a “typical” nine-year old boy. He often proclaims that he loves all the teams, but the Capitals and their star player, Alex Ovechkin, are his number one. He relishes the chance to see them play locally or on one of our trips to Washington. All of which made the trying nature of this trip so puzzling.
It had been in the planning for weeks — subject to my ability to get tickets. When they didn’t come through, we initially had to cancel, only to hastily reschedule when tickets game through just the night before the game.
Perhaps that was the first mistake.
Children on the autism spectrum are notoriously inflexible and typically don’t do well with surprises. Ours is no different, which is why we left the option up to him and his sister when the last-minute tickets came through. Both excitedly said yes, and we were off to D.C. in the morning with a plan to stay at our favorite hotel and swim in the pool before heading to dinner and the game.
Dinner is another tricky subject when traveling. My son has a very limited palette and is completely inflexible as far as eating goes, so we always make sure to plan dinner destinations in advance. There is a restaurant at the Verizon Center with a menu that worked. it advertises on all the Capitals games so my son knew of it well.
Unfortunately, it doesn’t take reservations on game nights. I called and was advised to be there by 5 p.m. In order to have enough time to eat before the 7 p.m. game.
We arrived at 5 only to find the place overflowing with a minimum hour wait and no guarantee of a table, so we quickly left knowing the wait would be unbearable for our child. This sparked some anxiety in our son, but we figured we could quickly find him some other acceptable option.
It was a bad assumption.
Other nearby options either had an incompatible menu, interminable waits, or both. All the while my son’s anxiety was growing. By the time we talked (OK, begged) the kids to agree to a nearby sandwich shop, he was on high alert.
Even though the place met his two critical criteria (it had pizza and quick service) it was too late. My son was so worked up he barely ate. Worse, he started saying that he did not want to go to the game because he was too nervous that the Capitals would lose, and a new complaint: that the noise bothered him.
Anxiety is something we are familiar with. My son gets very agitated when schedules do not go according to plan. A traffic jam, a need to run a sudden errand, any sort of unexpected event all have the ability to take a pleasant day and run it off the rails.
Most parents of kids on the spectrum are familiar with this. You put on your amateur psychologist cap, mix in your best Middle East peace process negotiator imitation, buckle up and hope for the best. A tricky part of these waters is knowing when to push and when to adjust, and when to throw in the towel and do anything you can to comfort your child.
I was less concerned about the noise complaint. My child does not have typical sensory issues. He doesn’t like the movies not because of the excessive noise, because he can’t stay focused and follow the story and gets bored. He’s been to many loud arenas and never been fazed by it; meanwhile my “typical” daughter often covers her ears when the goal horn goes off.
I just think he got himself so worked up about the change in dinner plans that his brain went on high alert and he was throwing anything that he could think of at us to protest going to the arena.
My wife and shared several concerned looks at the dinner table, but we both believed he would be okay once we got to the game. After all, hockey is his favorite thing in the world and the Capitals are his favorite team. But his anxiety over the game showed no signs of letting up. Over and over he told me he wanted to leave because he was worried about the outcome.
Still, we opted to push him to stay rather than pull the rip cord and bail out. I tried every psychology trick I could think of to calm his frayed nerves.
None of it was working.
By the time we got to our seats during warm-ups, he was sobbing and asking to leave. I suggested we take a walk around the arena and he agreed. Someone sitting near us kindly asked if he was all right and I muttered something about anxiety issues. We took a couple of laps around the building while I tried to distract him with games of counting the Ovechkin jerseys and seeing if we could spot any fans of the visiting team, the Phoenix Coyotes.
At one point on our walk we paused to look for the bathroom, and just happened to find ourselves standing in front of a sign with a huge autism awareness ribbon, an ad for a pretzel company that donates to the cause. I shook my head at the coincidence and continued on our way.
He agreed to go back in the stands for the star of the game. But this was a level of anxiety I’ve never seen, at least not while he was engaged in one of his favorite activities. It was the stomach-punch moment. Hockey has brought so much good into our lives and yet I felt like I was torturing my son to take him to a game featuring his favorite team.
My blogger friend Jess, who writes more elegantly about parenting a child with autism than anyone I’ve ever read, often talks about how her little girl tenses up when she goes into sensory overload. I hadn’t seen that in my son before. Anxiety, sure, but not the type that manifested in a physical response. But I was seeing that and more.
Every time Phoenix got anywhere the Washington goal, he scrunched himself up, tensed his entire body and let out audible moans of fear. I just put my arm around him and continued to whisper assurances that it would be okay. God knows what the people around me thought. I have never wanted my team to score a goal more in my life.
That’s it — the post ends there, unfinished. From memory, I recall that the Capitals held off a Phoenix rally in the third period, finally scoring a empty-net goal to seal the outcome. Ryan relaxed a bit at that point.
That night was five years ago, and I am struck by several things from this little window into our past.
Hockey is still the axle around which our family’s life turns. Things have changed. Ryan has moved on from the Capitals to the San Jose Sharks (a transition that was already underway, since we had already taken a road trip to see the Sharks play in Detroit when this post was written). Heck, the Coyotes aren’t even called “Phoenix” anymore, having switched to “Arizona” before last season. But Ryan still schedules his days around watching hockey. He still cares about the stats. The Hockey Guys have been shelved, but almost everything about his hockey watching routine remains the same.
Physical responses to anxiety may have been unfamiliar then, but they have become more so over the years. We’ve also learned to better navigate these episodes when they occur. Looking back at this post, I think we would react much differently today. Five years ago, my mindset was more of “this is his favorite activity, I just need to help him through it and he’ll be fine.” Today, I’d like to think that I would recognize my son was in distress, and keeping him in that arena only prolonged his misery.
The broad assumptions I made about my family, other families, and the autism spectrum in general, make me uncomfortable. It’s clear to me, that then five years into our family’s autism journey, I didn’t know enough to know what I didn’t know, you know?
Still, that evening was an important one for us. I recall being back at the hotel after the kids had gone to sleep, trying to figure out what went wrong. We settled on anxiety over the change in dinner plans after some debate, but I recall that we were uncertain. Clarity has only emerged with later experiences and knowledge. That evening reinforced for us the need to mitigate and manage (as best we could) Ryan’s anxiety. Over the intervening years, that understanding has grown, to the point where “anxiety” was the key point of discussion at Ryan’s most recent IEP meeting.
Something else about that night standings out for me — Ryan’s attempts to communicate his needs, and my failure to understand them. In retrospect, he was telling us, quite clearly, “I don’t want to be here and this experience is unpleasant for me.” But that’s not what I heard five years ago. I saw an obstacle between my son and his favorite thing and figured I could easily remove it. I don’t think I gave much consideration to Ryan telling me what amounted to “get me the %&*$ out of here,” and that is a painful realization.
I did not do right by my son that night. He was telling me what he needed, but I heard something different, and I thought I knew better. I think I would do better today.
I’m glad I have this historical record. It helps me put our experience in context, and appreciate how far we’ve come — all of us.