I planned to write about our weekend today. About how Ryan became the loudest, most enthusiastic fan of both Riley’s travel soccer team and the New York Jets. If you’ve been following around here, you know this is a really. Big. Deal.
But those stories can wait. This morning I followed my normal weekday routine. I got coffee for the adults and breakfast for the kids, then sat down for a few minutes with my bowl of cereal and my email. I saw from the subject line that today’s Diary of a Mom post was about Jess’s Friday adventure with her girls to Fenway Park for Autism Awareness Night.
Jess posted some pictures to Facebook Friday of her girls at the game, in the dugout getting autographs and meeting Wally, the Red Sox mascot, so I looked forward to reading her full account of the trip. But what I got was slightly different than what I expected, and yet completely familiar.
She wrote of the difficulties the outing had presented for Brooke, her daughter with autism. The noise, the heat, an unexpected rain delay spent waiting in a crowded room with no answer as to exactly when things would get going, Wally saving the day, Brooke’s ultimate triumph to make it out onto the field for introductions, and finally, checking out early after she had enough.
Jess wrote, too, of the guilt she felt as to why her kids got to have such an experience that so many others might like to have.
All of it struck a familiar chord with me.
One of the reasons I decided to blog was the sense of connection I felt from reading stories of families just like mine. Hearing others deal with the same challenges and describing the same triumphs brings me an incredible sense of comfort. I didn’t do it because I thought the world was really in need of an autism hockey blog, I swear. I used to be surprised when I read something on one of the many other outstanding parent blogs I read and reacted with “I thought I was the only one!” but not anymore. It has happened too many times to feel unusual.
But rarely have I felt I so completely understood another parent’s experience as I did in reading this morning’s Diary entry.
Back in January, Ryan had a once-in-a-lifetime opportunity. He was invited to skate on the kids’ auxiliary rink at the NHL Winter Classic in Philadelphia. The story of him stepping on that ice in front of 47,000 fans was one of the first entries on this blog.
The invitation came because I have a work connection. I had some guilt about why Ryan should get this chance that so many other kids would love to have. But I was comforted by knowing there are few kids that love hockey as much, and as purely, as he does.
I also didn’t have much time to worry about guilt. I was too petrified by logistics. Try as they might, the wonderful people who invited Ryan could not have guessed what I was most concerned about. There were crowds and noise, potentially bitter cold, and the fact that though I would be nearby, I would also be working at the game and unable to tend to Ryan the entire time. But one concern surpassed all: what if he had to wait?
Ryan and long waits don’t exactly get along. Waiting in line nearly ruined a trip to the NHL All-Star Game (and taught me a valuable lesson in advocacy). Ryan was supposed to attend the 2011 Winter Classic in Pittsburgh with his grandfather, but when rain threatened lengthy delays, we aborted the trip the day before. It was a good thing, too, as the 1 p.m. start time was ultimately pushed back to 8 and the evening would have been a disaster.
This year was more complex. The game was two hours away from home, and I would need to have Ryan there several hours early. Veronica, Riley and my parents were all going to attend, but obviously couldn’t show up hours before start time.
The plan called for me to leave Philadelphia the night before, drive an hour to my parents, pick Ryan up, and have him spend the night with me at my hotel. But weather once again intervened. The day before, a forecast of sunny skies threatened to derail the game with glare and soft ice, so it was pushed back two hours. As soon as I got the news, I scrambled to find out what this meant for Ryan’s arrival. When I was told he still needed to be there at the same I was crushed. There was no way he could wait four hours, without me, for the game to start. I called Veronica. We thought we might have to abort the whole thing.
But first, I found the person responsible for the kids’ program and pleaded my case. I didn’t need to. I was assured I could bring Ryan at whatever time worked for us. Big exhale. But this would still require a change in plans. He would spend the night at my parents, and I would get up early to pick him up and take him to the stadium. I was still worried about the weather, as any further delays might destroy our plans.
As I drove Ryan back to Philadelphia, I wasn’t sure he grasped the scope of what he was about to do. He seemed excited, but not entirely aware that he was about to play hockey in front of a packed baseball stadium and millions watching on television, including his entire extended family.
That changed when he saw the ballpark. The sight of the massive stadium awoke something in Ryan. By the time we parked and got his gear out of the car, he was practically running towards the gates. The stadium was empty except for workers getting ready for the game, still several hours off.
When we got through the gate and saw the field, with Ryan’s rink laid out right next to the main ice sheet where the Flyers and Rangers would play that afternoon, Ryan saw that were kids already out on the ice. He broke into a full-on sprint. We found the dressing room, which was actually the Phillies’ groundskeeper storage room. It was dank, noisy, and overcrowded with hockey gear for 30-plus kids. I exhaled again. I was pretty confident Ryan would be OK on the ice, even with the crowds and the noise, but this was the room where he’d have to spend most of the next six hours (the kids were to skate only during the pre-game and between periods). There was a TV set up for the kids to watch the actual game, which was important. If he couldn’t watch the game, Ryan would want to leave.
I think I said a silent prayer, hoping that Ryan could navigate these challenges. I wanted so badly for this experience to be a wonderful one for him, a memory to last a lifetime. But at that point I was still afraid that I was doing it more for me than for him. I still wasn’t sure he appreciated, or cared, what he was about to experience.
I reassured him that he could ask the volunteers for me at any point and I’d come find him. As an autism parent, you learn to always have an exit plan from birthday parties and movies and restaurants. You learn to leave yourself with options. If things went south, Veronica would take Ryan home while Riley stayed with my parents to watch the game.
In the short term, everything was fine. Ryan was yelling at me to help him get his gear on faster so he could get out on the ice. He ran up the steps through the Phillies dugout and out into the bright sunlight. I paused to absorb the massive scene, but Ryan only had eyes on the rink right in front of him. In no time, he was out on the ice, taking turns without issue and sharing the puck. He was beaming.
I lingered on the field as long as I could before I had to retreat to the work area where I would spend the game. At least I could easily get to Ryan’s dressing room. After pre-game ended, I found him trying to move his chair in the massive crowd of kids so he could get a better view of the TV. He was far more interested in that than in meeting the NHL players that stopped by to wish the kids good luck, including Ian Laperriere, Jeremy Roenick and Danny Briere. I did hear him ask Laperriere if he was sure he was retired. The player smiled, said yes, and cast a sideways glance in my direction. I just shrugged and moved on.
I double-checked that the volunteers knew where to find me if he need arose and retreated to my work area, the pit in my stomach mostly gone. I checked in on him a couple times, seeing him on and off the ice during the intermissions. As I walked down the hallway towards his dressing room, the volunteers teased me “he’s still not asking for you.”
I’m sure they thought I was being an overprotective parent, but they were correct: Ryan was in heaven. In the middle of a loud, crowded, smelly room, he had a view of the game on TV and a smile on his face. He didn’t complain at all about the cold or having had his hockey equipment on for hours. He didn’t complain about his skates hurting his feet.
During the second intermission, on what would be his last time on the ice, I ran up the upper deck in right field where my family was seated. When you stick an ice rink in a baseball stadium, the premium seats are upstairs, where you can see everything. As I arrived at their section, it began to snow. The scene was like looking out from the inside of a snow globe. As far as we were from the kids’ rink, Ryan was clearly visible. I had marked his helmet with tape so he’d stand out.
I found Veronica. We shared a wordless embrace. I did the same with my father. I think he had come to understand over the past couple of days why we were so concerned about logistics. Riley, dressed in her Devils jersey in the middle of a Flyers-Rangers crowd, was happily munching away on fries.
It was, no exaggeration, perhaps the most perfect moment of my life. I was in awe of my son, getting to experience something so grand in spite of all the challenges, in the middle of a Norman Rockwell setting. I quickly said my goodbyes, fighting back tears, and made my way back downstairs in time to greet Ryan coming off the ice. I helped him out of his gear. The person responsible for his invitation snapped a picture. Ryan settled into his chair to watch the third period. He was ecstatic. I was floating.
There was one more challenge. The plan called for the kids to line up to meet their parents with a few minutes left in the game. Ryan was having none of it. It was a tight game that would not be decided until a failed penalty shot in the final seconds. He wanted to watch. I found him in line and took him to my work area, where we had the game on TV. I told him he could watch only if he sat quietly and didn’t disturb anyone. He did as he was told, and when the game ended, I marched him outside to meet up with the rest of the family. They would drive home while I went back to work.
We had a happy reunion outside the stadium. We ran into the organizer that had invited Ryan, and thanked him profusely. I’m quite positive he had no idea what his act of kindness had meant to our family.
Ryan is not prone to grand pronouncements. But when I asked him what it had been like to play in front of all those people, he told me quite simply, it had been “the best day of my life.”
It might have been mine, too.
- Learning To Be an Advocate (pucksandpuzzlepieces.com)
- Well, There Was This (pucksandpuzzlepieces.com)
9 thoughts on “It’s the Logistics”
This reminds me of John Elder Robison’s explanation in his book “Look Me in the Eye” of how it was that he could work at rock concerts (ever been to see KISS live? talk about sensory nightmare on steroids!) despite his own sensory challenges. He was focused on his special interest, the job at hand – working on Ace Frehley’s pyrotechnic guitars that John engineered. That hyperfocus on his special interest helped him overcome every other challenge in the environment.
Special interests can unlock so many doors – for educators it is the key to reaching a child. For the child it is their key to accessing the wider world.
Reading stories about how Ryan parlays his love of hockey into successful school assignments, navigating the social minefield of team sports, and other such examples provides invaluable insights into how parents and educators can work together with an ASD child to generalize skills and broaden their horizons. It is also just has a lot to do with living a life you love, which is something all of us should shoot for, IMO. NT or not, pursuing your passion is about as good as it gets.
So, thank you and thanks to Ryan for sharing these challenges and victories here for others to read and learn from. You guys rock.
Thank you for such a thoughtful comment, one of the nicest I have received since starting this blog. I have been meaning to read “Look Me in the Eye” forever, and you have reminded me that I need to get on it. Heading to the library to pick it up this week.
One of the things that has always given us comfort about the child study team that works with Ryan is the efforts they have made to connect with him through his interests. One therapist, who I’m pretty sure had never seen a hockey game, learned all about his favorite teams and players to use it as a bridge to better communicate with him.