This Post Brought To You by Snowpocalypse 2015

Image

The weather and I don’t agree on my need to get home from the NHL All-Star Game, so this post is brought to you from somewhere on the Pennsylvania Turnpike.

As a result, we’ll be keeping this one short and sweet.

Sorry, kids, no souvenirs from this trip unless you count these photos. These are the all-star celebs my kids are most interested in: SJ Sharkie and Fall Out Boy. I bet you can figure out which kid cares about which.

2015/01/img_0022.jpg

2015/01/img_0023.jpg

For The Mighty: If I Could Go Back

The Victors

Of the thousands of pictures I’ve taken of Ryan, this one — barely in focus, poorly lit — might be my favorite. For the reason why, keep reading.

Veronica has been bugging me to write this post for a while, and I’ve been avoiding it for just as long.

She recently began reading The Mighty — a sort of one-stop inspirational site for those facing challenges of all kinds — and came across a post titled “If I Could Go Back to the Moment We Got The Diagnosis, This Is What I’d Do.”

The author described learning of a cerebral palsy diagnosis for her child, and her thoughts about it then, and now. But really, the specific diagnosis does not matter. At the end, the site invites others to share similar stories.

I have read many such posts, and part of my hesitation about writing one is fear of having something original to say. In fact, The Mighty had to pull one such post after it was discovered to have been heavily “borrowed’ from Diary of a Mom.

But I am also reminded of the autism mantra “if you’ve met one person with autism, you’ve met one person with autism.” All our stories, all our journeys, are unique. No two paths are exactly the same.

If I could go back to that day in 2002 when we received a diagnosis of PDD-NOS for Ryan, I would have a lot to tell myself. Here goes:

You are on the first step of a path. So is your child. Your spouse or partner and the people closest to you are also on one. But you’re not on the same paths, even though you’re all headed in the same direction.

The destination is uncertain, vague. Or rather, where you think you’re going will change over time. It will remain unclear, nebulous. You will learn to stop looking way down the road and start looking for the next mile marker, because by the time you get to it, you may be looking for a different destination altogether.

You will learn that even though you and your spouse’s paths sometimes diverge, that’s OK. You will learn the pointlessness of arguing over this fact.

You will go through a process. Fear, anger, depression. Mourning, even. Your process will be different from your spouse. Again, this is OK, and not worth arguing over. Just as no two people on the spectrum are exactly alike, neither are the life experiences we bring into the journey as autism parents. And your life experience will color how you perceive that journey.

A lot.

You will learn that process is for you, not your child, and that it is a prerequisite to the real work of parenting that sits ahead.

You will learn that there are no guarantees in parenting, whether your child has any sort of diagnosis or faces any particular challenges.

You will learn that autism is not something your child has, but a part of who your child is.

You will start by trying to teach your child to act like everyone else. You will uphold “normal” as the end-all-be-all goal.

You will learn the folly of both those things. In fact, your beliefs about autism will change so much over time that you will hardly recognize how you once felt. But you will realize that this process, too, is part of the journey.

At some point, you’ll find yourself apologizing for your child. You will hate how this makes you feel and resolve never to do it again.

You will realize that parenting a child on the spectrum involves a mix of teaching your child to bend to the expectations of the world, and trying to teach the world to bend to your child.

As time goes on, you will do less of the former and more of the latter, and you won’t spend two seconds wondering if that’s the right thing to do.

You will learn to recognize — and celebrate — difference. In your child. In your other children, whether or not they carry a diagnosis. In the people around you. In yourself. That co-worker/friend/acquaintance who keeps to himself and who everyone whispers about? You’ll stop joining in, and regret that you ever did. You’ll wonder instead what makes them the way they are. You’ll begin a search to discover what over-developed strengths they have to counter-balance their social awkwardness.

You will have conversations with your child about topics you never imagined. You’ll get over it and learn that these are things you probably should be discussing anyway, and not letting them “figure it out for themselves.”

You’ll spend a lot of time looking for, celebrating, being ambivalent about, and finally reveling in, your child’s strengths.

Somewhere along that path, you’ll understand the need for your child to recognize his strengths and take pride in them. It will hit you. This is the right time to tell him about his diagnosis.

You will learn that you were wrong to forget about, or set aside, whatever dreams you had for your child the day you got the diagnosis. You will do this because you learn that those dreams are no more accurate for you child on the spectrum as they are for your “neuro-typical” one. You will do this because different dreams take shape, and they get realized, one painstaking step at a time, and when they do they will mean more to you than you ever could have understood were it not for the journey to get there.

The journey will not be without difficult, frustrating moments and periods. You will wish for a manual and hate that there isn’t one. You will recognize the importance of advocating for your child, and learn where to seek the proper support. The trial-and-error nature of some of the things you try will exacerbate you to no end, but from those trials you will discover go-to strategies that work, over and over.

Routine will become your best friend, and occasionally your mortal enemy. You will learn to safeguard your child’s routines the way a mother hen guards her chicks. And then one day, you’ll recognize that old routines have been discarded while you weren’t paying attention. And then you’ll recognize that you need to let go of some of those routines, because your child already has.

You will learn to think as (you think your) child does. You will try to see the world from their perspective, and this, too, will change how you parent.

You will find an incredible, supportive online community. Otherwise strangers, who understand exactly what you are going through in a way people who are closest to you in your real life cannot, no matter how well-meaning. You will find strength and encouragement in this community, and a desire to share your own experience. It will help you become more comfortable with the journey you’re on. It will inspire you to create a written memoir of your journey that you hope to share with your children one day.

You will learn to celebrate tiny moments, and small victories. The items we refer to as “Not Little Things” around here. At first you will wonder if these small things are really important? Then you will learn that they are, no debate needed. You’ll learn that this makes you a better parent, and you will seek the same with your other children and in other aspects of your life. You will come to recognize that this is a gift, one you would not have experienced had your child never received that diagnosis.

Each time one of these moments occurs, it will be indelibly burned into your brain in a way that makes you both smile and cry at the same time.

Oh, and you, Mr. Obsessed Michigan Fan: You will not have to let go of your dream of sharing Michigan football with your son. It will take you a few years longer than you thought, but it will be incredible. And in the midst of one of the worst seasons in the worst period in the history of Michigan football, you will take your son to the Big House. You will watch Michigan lose in a way that used to send you into a funk for several days. And late in that game, with Michigan’s fate all but settled, you will turn to your right, and your son, the one who you wondered if you would ever get to share this experience with, the one who you wondered if he was really taking this all in, will be singing “The Victors” and throwing his arm up with every “hail.” You will snap a photo of it that will become one of the most cherished you will ever take. You will call your wife, unable to speak as the tears flow. She will understand anyway, as she always does.

You will be OK.

All on His Own

Ryan wrestling

Ryan prepares for his first wrestling match.

There is a natural parental pride when a child pursues a parent’s interest, be it a line of study, a hobby, or a sport. Ryan didn’t exactly come by his love of hockey by himself, and that’s OK. I am proud that he has found the same love of the sport that I have, and I hope it will give him the same lifetime of fulfillment that it has for me.

But there is also great pride in watching your kids branch out on their own — whether it’s a different interest, activity, or sport.

“I need you to sign this,” Ryan said, shoving some sort of permission form into our faces. “I joined the wrestling team.”

I could barely contain my incredulity.

“You did what?” I stammered in reply.

“I went to the interest meeting after school and I want to join the team. You need to sign this slip,” he said.

Veronica and I exchanged one of those many wordless exchanges that have happened over the years. Without saying anything, we knew that a) we needed to support him in this moment, and b) we would definitely be discussing this with each other that night.

We told him how proud we were of him for branching out into a new interest. He kept stats for the team last year, and activity his case manager felt would combine his love of sports and statistics. Little did we know a greater interest was born.

Ryan told us why he wanted to wrestle. Since he wasn’t playing on a travel hockey team, he thought wrestling would help him stay in shape and get stronger. Adding strength has been a goal of his since the summer, one he has pursued with his typical single-minded, bordering-on-obsession, focus.

Later, Veronica and I discussed the pros and cons. The more I thought about it, the more I thought the sport might be a really good fit for Ryan. It’s a team sport, but individual at the same time. It requires discipline, focus, strong will. It requires participants to learn precise maneuvers by repeating them over and over. There is no doubt it would help him get stronger and stay in excellent physical condition during the hockey season.

The cons came down to one — we worried about his self-confidence. Entering a new sport, one in which he had zero experience, we worried that he would struggle and suffer a blow to his new-found, and hard-earned, self-esteem. What if we worked his butt off in practice, only to get crushed in actual competition?

We decided it was a risk worth taking. We consulted with his coach, who knew Ryan from last year and has special-ed teaching experience. We consulted with his case manager. We felt comfortable with his decision. We were thrilled that it was just that: his decision.

Ryan has had more of his life directed for him than most people his age, as we sought to create structure and support that would allow him to fit in and achieve alongside his peers. I think that effort was both necessary and largely successful.

At the same time, it is incredible to watch him grow into his own person, one who is comfortable with who he is and who can make his own decisions.

The wrestling season started and Ryan told us how much he enjoyed practice. Feedback from his coach was all positive. He has only wrestled twice (several opponents did not have a match in his weight class) and is 0-2. But far from being crushed by the losses, he is encouraged by his progress. After getting pinned in his first match, he proudly told me how he went the distance in his second, losing only by points.

To me the wins and losses don’t matter. Of course I want him to have success for him, but I can see the payoff of this effort. He is getting stronger. I can’t toss him around like I used to. His self-esteem certainly hasn’t taken a hit, and may even have been boosted. He feels like he fits in on the team.

I am as proud of him for this as for anything he has done.

This Is What Happiness Looks Like, Redux

NHL Winter Classic at Nationals Park

The 2015 NHL Winter Classic, from my vantage point.

As I mentioned in Monday’s post, a lot happened over the holiday break. For Ryan, the highlight was undoubtedly New Year’s Day, when he attended the NHL Winter Classic in Washington, D.C.

Ryan has been to a Winter Classic before, three years ago in Philadelphia, but that was as a sort of participant, not a fan. That was an experience so magical it inspired me to start a blog. Ryan’s picture even ended up in Sports Illustrated as a part of journalist Richard Deitsch’s “best moment of your life” Twitter meme. But for Ryan, as great as that day was, something was missing. He didn’t get to experience the game as a fan.

As much as I would have loved having Ryan with me at last year’s Winter Classic at Michigan Stadium, that simply wasn’t in the cards.

But Washington? A four-hour drive away? And with the added bonus of Veronica’s sister living nearby? We could make that work. I was working the event, but was able to procure two tickets. Riley wasn’t really interested in going to the game. She doesn’t care about either team, the Capitals and the Chicago Blackhawks, and wasn’t crazy about the idea of sitting outside for four hours in the potential freezing cold. Instead she spent the day at the Smithsonian with her aunt, while Veronica took Ryan to the game.

Just as they were three years ago, logistics were a major concern. Playing a hockey game — one that counts in the standings — outdoors is a tricky thing. The weather needs to coöperate. Ryan might have gone to the 2011 Winter Classic in Pittsburgh if not for a seven-hour rain delay. This year the concern was sun glare. Veronica needed to get Ryan to Nationals Park in plenty of time to make sure he didn’t miss anything, but that brought with it the risk of having to sit out a lengthy delay. We tracked the forecast and the news from the NHL closely. It looked like the game would start on time or close to it, so they set off.

They arrived in plenty of time to watch warmups and see the pregame musical act, Billy Idol. As I’ve mentioned before, Ryan is an old soul when it comes to music. He loves Billy Idol. Why? Because 80s arena rock is a staple at hockey games. He was thrilled.

Because I was working at the game and had to be there hours early, Veronica was left to navigate the logistics by herself. She was understandably nervous. A hundred things could go wrong to set a complex plan off course and ruin a potentially incredible day. The fact that nearly all of them were completely out of her control didn’t make it any easier.

Despite my reassurances, I was also worried. So it was with incredible relief that I received a text from Veronica — a photo of Ryan in the seats, dressed in his Winter Classic gear and ready to go in plenty of time for the game.

But it was what came next that absolutely made my day. Veronica sent another text, this one with a “selfie” of her and Ryan. I’m pretty sure it’s the first selfie I’ve ever received from my wife.

Veronica and Ryan at the NHL Winter Classic

Veronica and Ryan at the Winter Classic. This picture says it all.

That picture represented everything I hoped for the day to be for the two of them. Ryan’s smile is enormous. For a hockey fan, the Winter Classic is little like the Super Bowl. It’s a celebration of the entire sport, no matter which team you root for. Ryan was in heaven. His excitement oozes from every pore of his face. For Veronica to want to capture that and share it meant that my hopes for this day for her were also being realized. They were making a memory, one that would last a lifetime. And that is the greatest gift of all.

The game started on time, and came to a thrilling conclusion when the Capitals scored the game-winning goal with 13 seconds left. The logistics all worked. From Veronica’s account, Ryan spent the game texting with his jealous hockey friends, engaging with the fans around him (no word if he went in for some stranger high-fives), and taking in all the action.

If Veronica is like me in similar circumstances, she spent the entire game with a smile plastered to her face.

Ryan’s love of hockey was born in Washington, on a spur-of-the-moment trip in Feb., 2008. Logistics threatened to derail that one, too, but they didn’t. Instead, something magical also happened that day. A spark lit a smoldering brush fire. Much more than an interest, a passion was born.

In the seven years since, Ryan’s association with hockey has brought us more joy, indelible memories, stunning achievements and family togetherness than anything else in our lives.

I often joke that the sport of hockey is like the fifth member of our family. It has given me a career, my son a defining passion, and our family a glue that bonds us.

If so, that isn’t a selfie that Veroncia sent me. It’s a family portrait, with hockey, in all it’s beautiful, back-to-its-origins, outdoor glory, lurking to photobomb the shot in the background.

PS – Click here for the origin of this post’s title

PPS – Many thanks to Aunt Mary and my daughter Riley, who spent the day off making memories of them. Without their coöperation, Ryan’s day at the Winter Classic would not have been possible.

It’s the Little Things

Ryan at the NHL Winter Classic

Ryan at the NHL Winter Classic in Washington, D.C. — one of the many things that has happened since my last post.

Much has happened since my last post. Christmas happened. New Year’s happened. Another NHL Winter Classic happened. Several trips to the doctor, and even one to the ER, happened (everyone’s fine). Heck, even Jim Harbaugh to Michigan happened.

Each could be its own post (well maybe not the Harbaugh thing, but still, yay! Jim Harbaugh! At Michigan!), but that’s not what I want to write about this morning, on my way to the office for the first time in more than two weeks.

Ryan had a couple of hockey games over break with his town-based middle school team, including one last night. I didn’t notice before we arrived at the rink that the opponent was the house-league team he played for last year. I recognized several of the kids and greeted a few of their parents.

That experience was a mixed bag, as Ryan struggled to fit in and even soured on the idea of playing after some issues in the locker room arose. That feels like a lifetime ago as he presently attacks each game and practice with enthusiasm, works on individual skills at home, and even has made friends with several boys on the team.

As I looked across the rink at the benches last night, I noticed a surprise. Ryan’s old peewee coach was behind the bench for the house league. He last coached Ryan two years ago in what was, to date, Ryan’s most enjoyable hockey experience.

Coach G helped out when issues arose last year, and he told me after the game last night that part of the reason he is back behind the bench is to prevent any similar issues to what Ryan experienced from happening this year.

As the game ended, the teams lined up for handshakes. I thought to keep an eye on Ryan. I was curious whether he would recognize Coach G, or vice versa.

Ryan was the last player through the line. Coach G appeared to be looking away when they shook hands and turned to head off the ice.

That’s when the little thing, which is, of course a Not Little Thing, happened.

Instead of skating off the ice, Ryan stopped and turned back to his old coach, tapping him on the shoulder. I saw the look of surprise register on Coach G’s face, and then he threw his hands up and embraced Ryan in a big hug.

I didn’t blame him for not recognizing Ryan, who is probably at least eight inches taller than when he last played for Coach G. Instead, I reveled in Ryan seeking out that contact, even when the moment appeared it would pass.

Recognition of familiar faces does not come easily for Ryan. I don’t know if it’s a form of face blindness, or if perhaps he’s just unsure of himself, but he often questions the identity of people we assume he’s familiar with, seeking reassurance that they are indeed the people he suspects.

I have learned that lack of outward signs of recognition does not mean Ryan is oblivious, it’s just that the interactions are tricky. Watching that handshake line, I would have predicted Ryan would skate off without interacting with his old coach, unless the latter initiated the contact. I prepared to ask him about it when he got off the ice.

Instead, not only did he recognize Coach G., he sought him out and initiated the interaction.

I don’t have to tell you, dear reader, how huge that is.

In our postgame conversation, Coach G recognized it, too.

“He’s really opened up,” he told me.

It put a perfect capper on what was really an excellent and memorable winter break.