A Couple of Hockey Lifers

Ryan at MSG

Coming soon to a Sharks game near you.

Back in October, when the NHL season was still ripe with possibility, Ryan and I went to the San Jose Sharks’ morning skate at Prudential Center as guests of the team. We were there so Ryan could attend practice and visit the players for the second time in a matter of months.

While we were watching practice, Dan Rusanowsky, the Sharks’ radio announcer, wandered over. I’ve had some professional interactions with him over the years, and he met Ryan at our visit in Philadelphia last February.

Rusanowsky quizzed Ryan all about his Sharks fan-dom, and I smiled as they engaged in a lively hockey conversation. Ryan is never as comfortable in conversation as when the subject is hockey. Rusanowsky asked Ryan his age, and when he received the answer he told him, “we really need to win a championship in the next few years.” It was his theory that the early teenage years are when sports fans’ memories are the most impressionable, when winning a Stanley Cup would be most meaningful to Ryan.

Sadly, it does not look like this year will be the year. San Jose has had an inconsistent year and currently sits on the far edges of playoff contention. With eight games remaining, the Sharks probably need to win them all, and get some help from teams ahead of them. If not, the NHL’s second-longest streak of consecutive playoff appearances will be broken.

We attended that game in New Jersey in October, and watched the Sharks grind out a 4-2 win over the Devils. The next day, Ryan and I when to Madison Square Garden, where we saw the Sharks lose to the Rangers, 4-0.

Tomorrow, we’ll make the drive down the New Jersey Turnpike to see the Sharks take on the Flyers in Philadelphia. (Aside: It was very nice of the NHL’s schedule-makers to schedule three of the Sharks’ four New York metropolitan-area games this season on weekends). As the Sharks’ playoff fortunes soured on a season-defining road trip, I checked with Ryan if he still wanted to go.

Had this been a few years ago, the answer might have been different. Or I might not have offered. But Ryan continues to answer with an enthusiastic “yes” each time the quetion is asked. I am so proud of how he has handled the disappointment of this season.

Perhaps it’s not suprising from the kid who wore a Sharks t-shirt to school the day after last year’s soul-crushing Game 7 playoff loss to the Los Angeles Kings, but it still marks tremendous maturity and growth from Ryan. Way back when Ryan first got very interested in hockey, he followed the Washington Capitals, like me. When they endured a blowout loss in a Game 7 one year, Ryan absolutely lost it. I had to turn the game off in an effort to console him, and I blamed myself for exposing him to something that caused him such pain.

That wasn’t the last time I felt that way, but those thoughts are always fleeting now. I have learned, and observed up close, the social connections that sports provide. I know there is nothing that brings him as much happiness as watching his favorite team play live. The look on his selfie-taking face when we made our trip to San Jose in February is proof. He loves the wins. He can handle the losses.

More importantly, his connection to hockey is what centers him. It has given him goals to pursue, a sense of belonging with peers, and immense pride in personal achievement. It has provided him with some amazing experiences . It has opened his eyes to the possibility of a career. In fact, his only concern about the trip to Philadelphia is isn’t the notoriously tough Flyers fans. It’s if we can make it home in time for him to play open hockey with his friends.

When this regular-season ends, and with it the likely end of the Sharks’ season, there will be no tears. I no longer worry about what the fall will bring. Ryan’s spring league season is about to start. We’ll watch the playoffs together on TV. We’ll discuss the Sharks’ offseason moves. And next fall, a new season full of possibility will dawn, and we’ll do it all again.

All of which brings me back to that conversation with Rusanowsky. I’m sure in one sense he’s right. As you get older, things like life intervene and tend to interfere with one’s sports passions. Except that I have no relevant experience. I became a fan of the Washington Capitals at age four and I’m still waiting to experience a championship. Should it occur in my lifetime, at any point, I’m sure I’ll cherish it plenty. Along the way, I’ve learned to love the individual moments that fandom provides.

Besides, I know a hockey lifer when I see one, because I was (and am) one. I see so much of myself in Ryan, and after a decade-plus of being forced to pay attention to his differences, that is perhaps the most rewarding aspect of all.

The Art of Not Giving a #!%*

Ryan at open hockey

Somewhere out there is Ryan, playing open hockey on Saturday night.

We always try to balance conversations about autism with Ryan by discussing both strengths and challenges. But the reality is we spend a lot more time talking about the latter. That is also the case here, so today’s post is an attempt to level the scales just a little bit.

Ryan cares what other people think of him. This is a learned behavior, years in the making. But here’s the beautiful part: He doesn’t care enough to let it alter what he wants to do.

And you know what? When I was his age, I couldn’t do that. Heck, I’m still not as good at it in my early 40s as he is at 14.

And I’m jealous.

Yes, jealous.

What a gift to be free to pursue that which interests you without wasting emotional energy on worrying about how your peers might react.

Two examples in just the last week made this crystal clear.

Ryan has been working really hard to get stronger. Push-ups, pull-ups, planks, dips, etc. I joke with him that he does a “prison workout.” But what he really wants to do is lift weights. We cautioned that he is just entering the age where weights are appropriate, so he’s not really behind. Still, when his middle school offered an after-school weightlifting class, he rushed to sign up and was thrilled to secure a spot.

I asked him how the first class went, and he said it went well. He began working the basic exercises, such as the bench press, with very light weights. Ryan’s only hesitation about taking the class was that some kids might be a lot stronger than him. So we asked some gently probing questions to see if anyone had commented on the weights he was using or made him feel bad. If they did, it didn’t affect him.

For me, this conversation was a flashback to when I was his age, struggling to put up low weights on the bench press in the high school weight room. The difference was, I wasn’t there on my own, trying to pursue a goal. I was there because it was required for the sports I played. And I hated every second of it.

Thus began a vicious cycle. I hated lifting weights because I wasn’t very strong so I didn’t lift weights to avoid something I hated. It never changed throughout high school and as soon as I was free of required lifting sessions, I never wanted to do it again.

In retrospect, this was stupid because A) everyone has to start somewhere and B) my peers were far too busy worrying about themselves (or what others thought of them) to spend time thinking about me.

Ryan? He sees a goal, he learns the steps to pursue it, and he goes about his business. It’s an economy of thought that skips all the senseless worrying about what others think. It’s very freeing, and I wish I could do the same.

Saturday night, Ryan wanted to go to “open hockey” at the local rink. It’s a pay-to-play pickup game, and some of his middle school friends attended in recent weeks. I wasn’t sure this was right for him, but he was determined. He started texting his hockey buddies and learned a few of them would be there. Veronica smartly held me to my promise to take him if he found a friend that was going, because my doubts were more about me than him.

It was an all-ages session and I worried about the level of play. What if he wasn’t nearly as good as the other players? Would they make fun of him? Would he be socially awkward n the locker room around a bunch of high school and adult-league players? This was definitely stepping out of his hockey comfort zone — or was it mine?

I saw the look of anticipation on his face as we arrived at the rink and when his friends arrived. I watched him hit the ice with the others, a smile across his face. I know that feeling when I play in my beer-league games now, but if I’m being honest, I didn’t enjoy it as much at that age as he does. He’s not a little boy any more. He’s nearly six feet tall. His skating and stickhandling have improved markedly. He wasn’t the best player out there, but he was good enough to keep up, and besides, he was out there trying to get better. I smiled, realizing he was fine, and left the rink.

Once again, I had a flashback. It was exactly the kind of challenge I avoided at his age, too worried about what others thought of my ability, when the truth is they probably didn’t care about me.

When I picked him up, he was not discouraged at all. He said that most of the players were better than him but that he had fun. He’s planning to make it a regular thing.

And another obstacle is cleared, not with our encouragement, but because Ryan’s unique sense of self, where he simply has no use for concern about what others think, won’t allow it to stand in his way.

I can, and do, learn a lot from my son. But I can’t think of a more valuable lesson than this. Do what you love. Don’t spend two seconds thinking about what others think. The time and energy most of us waste on that pursuit could better be spent enjoying our favorite activities — and not giving a #!%* about anyone else. Do that, and nobody will get the best of you.

The Best of You

Team photo

The team photo. Ryan is at lower-left.

We’ve been here before.

Two years ago, on this same sheet of ice, in fact.

Ryan’s team made the pee wee house league championship game. The contest was tied through regulation and overtime before they fell in a shootout. Ryan’s disappointment was somewhat tempered when he was named the most improved player of the entire league.

Ryan played on street hockey teams that won their division titles, but none of his ice hockey teams got closer than that pee wee team almost two years ago to the day.

It looked as if this day would end the same way. Ryan’s team — our town’s entry in the same middle-school league where he had such a trying season playing for the local rink’s house league last year — fought its tails off but eventually saw a 1-0 lead turn into a 4-2 deficit with just under 10 minutes to play.

Veronica and I exchanged disappointed looks. On the ice, the boys looked defeated after the fourth goal. I saw Coach E. encouraging them from behind the bench. I reminded Veronica that 10 minutes is a lot of time, especially in a youth game.

Dog pile

Game over – time for a dog pile

The scoreboard operator was playing music after every whistle, trying to give the game a big-time atmosphere. It was right around this point in the game when current hits like “Uptown Funk” gave way to one of my favorite songs by one of my favorite bands — “The Best of You” by the Foo Fighters.

The song is probably about a bitter breakup, but it also comes off as a motivational anthem, at no point more than when Dave Grohl sings “I swear I’ll never give in, and I refuse.”

Far from being flattened by the fourth goal, Ryan’s team came out strong, quickly scoring to bring the get within one goal at 4-3.

At that point the game became a stalemate, with the puck sitting in our end for extended stretches, while our team’s chances at the other end were continually thwarted by a bad bounce here and there.

We stood and urged the boys on. A group of players from the high school team, where Ryan and number of the boys plan to play next year, did the same. I kept checking the clock. Five minutes left. Four. Two.


The boys celebrate their achievement

With just over a minute to go, our team’s goalie headed to the bench for an extra attacker. The puck made its way to the offensive zone, where there was a mad scramble in front of the net. It was at the far end of the rink and difficult for us to see, but I saw the referee point at the net to signify a goal before I heard the eruption. The game was tied with 53 seconds left.

There were a few more chances either way before the buzzer sounded. The game would be decided in a five-minute overtime session played at four-on-four to encourage offensive chances.

Veronica and I were fully emotionally invested in this outcome. We wanted this title for Ryan, for the team, for our town. The high-school team, led by the same Coach E, has had low turnout and little success the last few years. The middle-school program was founded in an effort to put some more kids into the pipeline and, as one of the administrators told me at one of the first practices, “save hockey” in our town.

Save hockey? More like this program saved us.

handshake line

The postgame handshake line

As it has so many times, the sport has been a blessing. After his wonderful experience in pee wees, Ryan’s lone year at the middle-school level playing for the rink was very difficult. There were bullying incidents. The team was regularly on the wrong side of lopsided scores. It tested Ryan’s desire to play the sport. In the midst of storm, along came the town team, which has proven to be a wonderful, restorative experience for Ryan. He has rededicated himself to becoming a better player with the goal of making the high school team. He fits in. He feels like he belongs. He proudly wears his team jacket to school.

And now, he is part of a championship team.

It look barely a minute in overtime. A shot hit the back of the net and suddenly everyone was off the bench, gloves, sticks and helmets flying as if it were the Miracle On Ice. There was a trophy. Huge smiles and team photographs.

Ryan didn’t score. He didn’t have an assist. He didn’t get on the ice in the brief overtime. For a moment, he told us he felt undeserving. Nonsense, we told him. He skated a regular shift until deep into the third period.

Ryan exits ice

A jubilant Ryan exits the ice

“How many goals did the other team score while you were on the ice?” I asked.

“Zero,” came the correct answer.

By the time I got to take his picture with the trophy, he was beaming. By the time we got home, the team picture was all over Facebook and we learned the boys would be invited to meet the mayor to receive congratulations. By the time we tucked Ryan into bed, he told us “you may refer to me as ‘champ.'”

You got it, kid.

The last time we were here, I talked about how Ryan was figuratively skating into the unknown. And it was true. It has taken much of those two years for the path to become clear.

There was something else the league administrator told me around the same time he talked of saving hockey in our town. I was explaining Ryan’s diagnosis to him — having always believed it’s best to be upfront with coaches and league officials when it comes to sports. He looked at me and said, “you son is going to be a varsity athlete.”

I never cared if either of my kids excelled at sports. I earned a pile of varsity letters and I was far from a good athlete. But I care about this, because of Ryan’s deep connection to the sport, and the social, emotional and motivational joy it brings him. There was something about this game yesterday that just made it all feel right. Maybe it was the high school players there to cheer on some of their future teammates. Maybe it was the coach, rolling his lines well into the third period of a razor-thin championship game. Maybe it was the look on Ryan’s face when he first put on his team jacket and wore it public skating to hang out with his friends — yes, his actual friends — on the team.

Ryan with the trophy

Ryan with the championship trophy. Representing the Sharks, as always

Perhaps it was no accident we ended up in the town where we are, with an incredible special-ed program and a hockey team in need of saving. Perhaps it was no accident that “The Best of You” was the song that played right as the team was faced with its biggest challenge.

After last year’s test of faith in the sport that means so much to all of us, I can take even more meaning from Dave Grohl’s lyrics. After all, “getting the best of someone” has two meanings. Last year, some of Ryan’s teammates got the better of him. This year, a new team and a new program got the best OUT of him.

Has someone taken your faith?
It’s real, the pain you feel
You trust, you must
Is someone getting the best, the best, the best, the best of you?

Has someone taken your faith?
It’s real, the pain you feel
The life, the love
You die to heal
The hope that starts
The broken hearts
You trust, you must

Is someone getting the best, the best, the best, the best of you?
Is someone getting the best, the best, the best, the best of you?

I’ve got another confession my friend
I’m no fool
I’m getting tired of starting again
Somewhere new

Were you born to resist or be abused?
I swear I’ll never give in
I refuse

Handling the Curve

Nuke LaLoosh and Crash Davis

Nuke LaLoosh accepts some baseball (and life) advice from Crash Davis

In the Show, everybody can hit the fastball.”
Crash Davis in Bull Durham

The classic 1980s baseball movie Bull Durham is full of witty one-liners. When issued by the main character, Kevin Costner’s career minor-league catcher Crash Davis, they usually arrive in the form of life advice disguised as a sports quip.

So it is with the above quote, which Crash delivers to the pitching phenom Nuke LaLoosh, trying to get him to understand that to advance to the big leagues, he will have to develop a curveball because all major league hitters can handle the fastball.

It’s good advice for Nuke’s career. But taken another way, it has deeper meaning. Life is simple when you know what’s coming. For Ryan in particular, when life falls within the bounds of his preferred patterns, things tend to go smoothly. 

It’s when life veers off the rails — delivers a proverbial curveball — that things become difficult. 

A recent incident reinforced that point, while also showing us just how much more introspective he has become, which helps him find his calm.

Ryan’s weekend routine is to go to public skating at local rink. He has developed a group of friends from school and hockey who are regular attendees like he is. 

For us, these outings have gone, over the course of a couple of years, from taking him to the rink, paying for him, and waiting in the lobby for the entire session, to dropping him off at the front door with money and picking him up at the curb at the end.

Skating is one of his favorite activities. He proved he has no trouble navigating paying his admission, getting his skates on, and following the rules. It has become, dare I say, routine.

Until Saturday. I could tell as soon as I pulled up to the pickup spot that something was wrong. Ryan was very angry when he got in the car. On the ride home, the story came out: The rink cut off the session 15 minutes earlier than the online schedule suggested, and Ryan was hot. That was obvious. He told me how he refused to get off the ice when the session ended, instead staying out for several minutes before the skate guards finally chased him off.

I explained that defying the rules was unacceptable, and that if it happened again we wouldn’t be able to drop him off at skating any longer. In the past, that would have likely fueled an explosive meltdown. Instead, Ryan accepted my admonishment. 

I next acknowledged he had every right to be annoyed, because the rink was wrong. But I told him that he had to match his reaction to the level of the issue. If an early end to the session was a three on the annoyance scale, his reaction was an eight. These are lessons Ryan has heard from us, teachers, therapists and social group leaders since he was a small child. 

Ryan did not protest. He defended his right to be upset, which I agreed with, but realized he went too far in his reaction. By the time we got home — no more than 10 minutes — he was calm. He did not allow a small incident to boil over into something larger, which is a not-so-small, really important step. 

Because as much as we try to apply structure to life — in baseball terms, an endless stream of belt-high fastballs — it will not always coöperate. The world will continue to throw him the  occasional curve.

Ryan may not yet be able to hit a curveball out of the park, but it’s no longer the knee-buckling moment of terror on which so many promising baseball careers have died. 

A Window in Time

Phoenix Coyotes v Washington Capitals

The Washington Capitals battle the (then) Phoenix Coyotes on Jan. 23, 2010.

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. 

Here goes:

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.