The Narrow Path

Ryan at his computer

There’s a look. This is not it.

There’s a look. We know it well. It’s one of anguish, fear, concern, and pain that is just short of physical.

It is the unwelcome face of anxiety. It is accompanied by both physical (a stiffened body) and behavioral (defiant, bordering on manic, activity and trouble sleeping) markers.

We’ve seen this look too much recently — a sign that Ryan’s life is careening up against the walls of the narrow path where he functions best. 

The possible causes are many. Schoolwork. Busy schedules. A San Jose Sharks losing streak. Hormones. Growth spurts. Medication tolerance. The general difficulty of figuring out middle-school life, augmented by a neurology that makes understanding social and non-verbal cues compete for his mental energy as much as studying for a test or quiz.

Some may read that list and think, a favorite team’s losing streak, really? Yes. Prioritization, whether of schoolwork or his emotions, has never come naturally for Ryan. He makes things work for him by applying order and structure to a chaotic world, but when things don’t follow that order (ie, the Sharks always make the playoffs, this year they may not) it’s a problem.

As his parents, we do our best to help Ryan manage is anxiety. We tell him it’s OK to stop studying or take a break from exercise. We go out of our way to not add to the pressure he puts on himself to succeed. We are well aware that managing his anxiety is the key to everything for Ryan, because when it gets to be too much, it becomes all-consuming.

But we’re also his parents, which means we’re familiar. Sometimes, the same message, but from a different voice — that of a doctor, therapist, or counselor — is needed. So it was lucky that we had such an appointment scheduled this week.

I listened as Ryan found the words to explain exactly what is making him worry to the point it affects his sleep. Even in middle of listening to my child describe his anguish, I paused to appreciate his ability to communicate his exact feelings. Getting there was not easy.

Ryan listened attentively to the plan that was laid out — an attempt to modify his daily routines just enough to allow him to restore his proper sleep, since without that the rest becomes exponentially more difficult. He did not question the authority of this voice (although he did later with us before relenting).

I did my best to explain to the voice how we have come to understand Ryan’s approach to life. He doesn’t do anything subtly or halfway. He’s All In, whether it’s studying (schoolwork or statistics), working on his hockey skills or adding strength. I tried to convey that we understand the drive that is a byproduct of this compulsive approach can lead to positive accomplishments in which Ryan takes pride. I was wary not to come off as on over-driven parent pushing a resistant child to academic or athletic achievement for selfish reasons. I’m not sure I succeeded. The voice listened, but reminded me of the need to manage the anxiety before it causes more significant issues.

I get it. With every fiber of my being, I get it.

What I was trying to explain was that narrow path where things work best for Ryan. Using all the skills he has learned to mitigate the challenges presented by autism, and by applying his obsessive drive to that which he wants to do, he has found achievement that brings with it self-esteem. But if he ventures too far towards the obsessive, he risks plunging down the slippery slope of anxiety.

It is our job to help him navigate that narrow path — on both sides. I do not want to stifle his drive and energy, because we have seen the positive effects of accomplishing that which HE sets out to do. At the same time, we understand that we must not add to the pressure that he puts on himself. We need to help him understand that pulling back a bit does not mean giving back that which he has gained. Ryan feels if he doesn’t study every free moment, he’ll forget everything he has learned. Likewise, if he doesn’t work out every chance, he’ll lose all the strength he’s gained.

It’s a fine line to walk, and a tricky one to keep up. There are no easy answers, miracle solutions or instruction manuals.

We will simply do what parents do. Monitor, advise, bring in outside resources when necessary. Do everything in our power to lessen the pressure he feels, while still encouraging him to pursue the things that matter to him and bring him the joy and satisfaction of achievement.

Treacherous on both sides, it is a narrow path, indeed.

A Moment Spent, A Memory Created

Ryan waits for the Sharks

Ryan waits for the Sharks to emerge from their dressing room before their game against Tampa Bay on Feb. 15.

“We could have used you out there tonight,” the man said to my son, calmly and genuinely, grabbing his hands as he did so, to be sure he was capturing Ryan’s attention. “I think you might have gotten us that extra goal we needed.”

A smile crossed Ryan’s face.

“I think I would have,” Ryan answered.

“I like your confidence,” responded the speaker, who just happened to be San Jose Sharks general manager Doug Wilson.

That brief conversation did a lot to ease Ryan’s disappointment over having crossed the country only to see the Sharks lose to Tampa Bay. It also served as another of the many reasons why “hockey people” are awesome.

The Sharks had just lost their fifth straight home game. They are in danger of missing the postseason for the first time in 11 years. And yet, perhaps 30 minutes after a difficult defeat, one in which Wilson had just told us they “did not play very well” and he still took the time to greet Ryan. It was more than that. He engaged with him.

It was the last act in an overwhelming weekend full of kind gestures — locker room tours and pregame fist bumps with the players included — and I stammered a thank you to Wilson as he greeted the rest of us before we headed out into the night air outside SAP Center. There was disappointment, sure, but as I told Ryan that night, it was a weekend he will remember forever, and over time, that the Sharks lost will become a smaller and smaller part of those memories.

I actually saw Wilson again a few days later when the Sharks hosted the Kings outdoors at Levi’s Stadium in Santa Clara. I was there for work, having headed right back to the Bay Area a few days after returning home from our family trip. The crazy travel was a small price to pay for the gift of that weekend.

Sharks-Kings at Levi's

Puck drop between the Sharks and Kings at Levi’s Stadium on Feb. 21

I saw Wilson in the press box between periods of the game, a critical one for the Sharks’ playoff chances that they would end up losing, 2-1. As if to prove the previous weekend was no fluke, when I thanked him for the time he spent with Ryan, his response was to ask how he was doing and offer how much he enjoyed meeting him.

Hockey people, man. Hockey people.

I’m not sure where we go from here, how we top the experience we just had. I know we’ll be back some day — I may or may not have promised Ryan to come back and see the Sharks win (sorry honey). But not even a victory on a later trip can top what we just experienced. Not for me, anyway. Ryan probably feels otherwise (the first draft of his thank you note to Wilson asked what he planned to do about getting the Sharks into the playoffs).

To see the look on Ryan’s face each time it dawned on him — again — where we were and why, was magical. He was in disbelief, and every pinch-yourself moment was a reminder that this trip was a gift from the hockey Gods. That we got to experience it together, as a family, made it that much better.

Making Hockey Hold Still

Ryan watching warmups

Ryan watches the Sharks warm up.

“Hockey won’t hold still for a portrait.”

The words are not mine, but they echo in my head as if they were. I am trying to force myself to take a mental picture of all that we are experiencing, so that I may remember it forever. So that I may capture and describe it later.

But try as I might, the clock keeps racing onward. The game will not pause and allow me to drink it in, every delicious second, every frenetic shift. I check the game clock more often than a nervous coach.

“Hockey won’t hold still to give you a better look,” the voice continues. “You wouldn’t want it to anyway. It’s the action that makes the possibilities endless.”

The words are not in my voice. They are in the voice of Liev Schreiber, the actor and narrator of HBO’s “24/7″ sport documentaries. These words, written by Aaron Cohen, came at the end of the first hockey-themed edition of that series, about the buildup to the Capitals-Penguins NHL Winter Classic on Jan. 1, 2011.

I silently curse Cohen and Schreiber. Why won’t this game hold still? Of the many dozens we have experienced together, why does this one feel like it’s taking place in fast-forward?

I know why. Veronica, to my right, knows why. Her tears say why. Riley, between us, wearing a jersey borrowed from her brother for the day, knows why.

It is because this game, of all those we have experienced, is the first one at SAP Center.

In San Jose.

California.

On my left, Ryan wills his beloved Sharks on, even as they sit on the wrong side of what will become a 5-2 loss. I may have seen him as happy as when we set foot in the arena a few hours before. I know I have never seen him happier.

Sure, we’ve done road trips before. But not like this. Not with this obstacle course of six-hour flights and three-hour time changes and multiple hotel rooms and restaurants for every meal and no weighted blanket and days spent sightseeing so that his sister might have her day on the trip as well.

We’ve been chasing this trip for what, five years? Six?

None of us is quite sure when or why Ryan became a Sharks fan, but it has been at least that long. And in each of those years Ryan asked when we could go see them play a home game in San Jose.

Early on, I would roll my eyes and tell him that San Jose was a six-hour flight away. Neither of us thought that would work very well, and that usually ended the conversation. Truth is, a six-hour flight was simply not an option then — for either of us.

But like a mountaineer acclimatizing on Everest, Ryan built up to this, increasing his stamina with successive journeys. Along the way, he packed his tool kit with the skills that would help him. He became more flexible with his routines. He learned to love sports movies (helpful for the long flight). His sleep patterns became more adaptable. At some point last year, I knew we were ready. And so when the 2014-15 NHL schedule was released, we immediately found our date: a Presidents’ Day weekend trip.

Still, it was with no small amount of anxiety that we headed to the airport. Winter flights in the northeast have a nasty habit of getting delayed or cancelled. That’s traumatic enough when the stakes are a family visit. But a first-ever chance to experience his most favorite thing in the world? We checked the weather and crossed our fingers.

Our fears were unfounded. He was OK on the flight until the final moments. He handled the time change and a few wrinkles in our travel plans. He even enjoyed himself sightseeing in San Francisco. His expanding diet made restaurants a breeze.

All of which lead us to these seats, in this arena, in the third period of this game, with the clock advancing towards zero at rapid pace. Eventually, I give up the hopeless pursuit of stopping time. Try as I might, this evening, this experience will not last forever.

And so I begin to think about how I will document it. I check the pictures on my phone during intermissions. Do I have the perfect shot? Have I adequately recorded this amazing day for posterity? The one that began with a tour of team’s practice facility and family photos in the Sharks locker room? That continued with a private tour of the arena, a meal at the restaurant on the club level, and an ice-side view of pregame warmups? That included fist bumps with the players as they headed to the ice through the famous Sharks’ head for the game? That will end with yet more visits with the players and team management?

How will I remember the weak-in-the-knees-moments the day has already provided? Like when Ryan, during the tour of the arena, announced to us and our guide, “I can’t believe I’m actually HERE!”

Or when Sharks’ forward Patrick Marleau, who addressed Ryan by name the last time we met with the Sharks, shook his hand during the fist-bump line?

Or when we bound up the steps and into the arena bowl just ahead of the opening face-off, pausing to listen to the last words of the national anthem. Veronica placed her hand on my shoulder. I reached back and held it and fought off tears.

As is so often the case in these moments, no words were needed to convey the enormity of that moment. Even Riley remarked at what her brother must have felt.

It was joy.

Joy, and excitement, that was only slightly dampened by the final score.

And when I get back to that question of how to document this day, this weekend, this experience, this trip, this MOMENT, and when I look through my dozens of dimly lit and out-of-focus photos, I find it. I find the one that summed up for me exactly what this experience meant for Ryan.

It was a selfie.

Ryan takes a selfie at the Sharks game

Ryan takes a selfie during pregame warmups.

Well, not exactly. It was a photo of Ryan taking a selfie. I had seen him take one maybe once before. But as we stood by the glass for warmups, and as he called out to his favorite players, and as his smile lit up the arena, he paused. He turned his back to the ice, and held out his arm in the now familiar pose, snapping a picture of himself with the Sharks in the background.

I have speculated before about the rare moments when Ryan takes pictures. I can think of no greater statement on how much the experience meant to him that Ryan chose to document it in this matter.

Maybe Cohen and Schreiber were wrong. Hockey won’t hold still for a portrait?

I beg to differ.

Ryan's selfie

Ryan, making hockey stand still for a portrait.

My sincerest thank you to everyone at the Sharks organization who made our visit so unforgettable.You have given us a memory we will cherish forever.

Triskadekaphobia

It’s Friday the 13th — but I’m excited, not afraid.

You know why?

Here’s a few hints.

Ryan and Joe Thornton

Ryan meets Joe Thornton in Philadelphia last year.

Ryan with Tommy Wingels, Joe Thornton and Patrick Marleau

From left, Tommy Wingels, one super-happy Ryan, Joe Thornton and Patrick Marleau – photo taken in New Jersey last October.

Exciting things are afoot, but I don’t have time to write about them just now. More soon.

Couldn’t Have Said It Better

Couldn't Have Said It BetterThe axiom that advises, “If you’ve met one person with autism, you’ve met one person with autism,” is true. I bring it up to better frame the story I’m about to share. In other words, your mileage may vary.

Disclaimers aside, I know one of the things we struggled with as parents of a child on the spectrum was the issue of when to tell him about his diagnosis. And I also know that hearing what follows when we were in the midst of trying to figure all that out would have been incredibly welcome.

Ryan is having some issues with one boy who, for whatever reason, is not nice to him. It’s fairly typical middle-school stupidity: name-calling, shunning from the group, etc. It is made more complex because Ryan doesn’t understand why this particular boy doesn’t like him, and can’t just let it go no matter how much we advise him to.

He will bring up the conflict at random times, returning to unanswered questions in a way that suggests it is never far from the front of his mind.

Veronica recently relayed one such conversation. Ryan asked her, point-blank, if the boy calls him names because he has autism.

We’ve gotten more used to this as Ryan has grown more comfortable understanding who he is, and both why some things are difficult for him and why others are incredibly easy.

Aside: when discussing his diagnosis with Ryan, we always point out both strengths and struggles. We want to make sure he understands there is nothing wrong with him just because some things — breaking routines, social situations, etc., — can be a challenge. Just the same, we need him to understand some of the amazing qualities — focus, attention to detail, miraculous memory, drive — that come along with his unique brain wiring. We don’t believe understanding one without the other, either way, does him any good.

Despite all this, hearing Ryan casually talk about autism is still a bit jarring and takes some getting used to. It’s the way he talks about it that offers us reassurance that telling him about the diagnosis was the right thing to do.

When Ryan asked Veronica if autism was the reason this particular boy picks on him, she answered, honestly, “I don’t know.”

He responded, “well I’m not ashamed I have autism.”

Her answer (probably after regaining her composure as I know I would have needed to): “Neither are we, nor should you be.”

In that brief exchange is the evidence that telling Ryan about his diagnosis is empowering in exactly the way we hoped.

In telling me this story via text message, Veronica added, “quite a journey.”

Indeed. It has taken us years to get to this place, achieving a comfort level and understanding before we could discuss autism with Ryan honestly without demonizing it. We needed to walk the path, from fear, to wanting to “fix” our child, to realizing he doesn’t need fixing because he’s not broken, to handing him the power to understand why some things are difficult for him. Along the way, we have watched a self-confident young man emerge, and that is the best feeling of all.