Russell Levine fought back tears. So did his wife, Susan. It was a snowy, bitterly cold January night at Citizens Bank Park, in Philadelphia. Russ, a National Hockey League executive, was there for the league's 2012 Winter Classic, between the Flyers and the New York Rangers.
"Can you believe this?" Russ said.
Susan cut him off with a look: "I know."
The Roots were playing a mini-concert in the outfield before the game's third period, but the Levines were focused instead on an auxiliary rink by home plate where a group of kids played hockey. Skating among them was an 11-year-old boy wearing a Rangers jersey and a black helmet with a T made out of white tape. It was Trevor, Russ and Susan's son.
"That was not an experience I thought I would ever get to have," Russ said, recalling that night.
Russ is the NHL's Vice President of Digital Production, making a living immersed in the sport he loves, a sport he started playing when he was four years old. When Trevor was born, in 2000, Russ dreamed of having his son in skates by age 2.
But that didn't happen. By that age, Trevor was undergoing a series of tests that would shape not only his life but also that of his family.
Initially, Susan didn't think there was anything to worry about when it came to her son. Sure, Trevor was a little quirky during his first months, but it was nothing to be alarmed about. That changed around the time Trevor was a year old. At a local pond, he didn't act like the other infants, bouncing and laughing, trying to pull themselves up in their strollers to get a better look at the ducks. Instead, Trevor sat as if nothing was going on around him.
After a year of this, Russ and Susan took Trevor to be assessed by the state of New Jersey, which determined that their son was eligible for special services. Then came a private evaluation to diagnosis him. Russ felt sick to his stomach that day. As one test followed another, Russ tried to keep a mental scorecard of what his son was doing, even though he didn't have a clue about what would be good or bad.
Susan felt she already knew the verdict, and doctors confirmed her suspicions: Trevor was on the autism spectrum. His diagnosis was Pervasive Developmental Disorder, Not Otherwise Specified, or PDD-NOS, indicating that Trevor had some but not all of autism's characteristics.
According to the Centers for Disease Control and Prevention, about one in 68 children suffer from Autism spectrum disorder (ASD), a developmental disability that can negatively affect one's ability to learn, think, communicate and interact with others. Trevor's ASD has manifested in a variety of challenging ways. He didn't speak until he was two and a half. Ritualistic behavior came in various forms, from only eating food out of a jar when he was little to fixations with wheels and garage doors. There were sensory issues and social hurdles, too.
"I was terrified," said Susan, who by then had given birth to Trevor's little sister, Lindsay. "I was terrified for what that diagnosis meant for his life, my daughter's life, mine and Russ's life."
Susan left her career in genetic counseling, becoming a stay-at-home mom in West Orange, New Jersey, in order to take care of her family and, in particular, to throw herself into her son's therapies. Some days, Susan says, were horrible. Tear-streaked and exhausting. Others were tear-streaked and hopeful, like the day Trevor said his first word, "bus."
Russ struggled in his own way. Before Trevor could talk, Russ would come home from work or business trips, and his son would show indifference. Russ would try to play it off as Trevor just being tired, but he worried about how much he'd be able to connect with his son.
As time went on, Russ would go on walks with Trevor. The conversations, though, would hinge on garage doors–an object Trevor grew to love, and a subject Russ had, well, difficulty with. There were moments when Trevor and Russ had more conventional father-son experiences, like playing catch, but for a long time they weren't the norm. Then, like Russ, Trevor fell in love with hockey.
Trevor, now 14, meticulously tracks the N.H.L. and is able to recall thousands of statistics, from dates and locations of games to final scores and the teams' win-loss records. Early on, Russ was uncomfortable when people would point out how much Trevor memorized. He knew his son's skill was different, and felt people were putting Trevor on display when they asked him to demonstrate his recall.
Eventually, however, that uneasiness became pride.
"If my kid hit three home runs in a game, I'd be bragging to everybody about it," Russ said. "When I discovered that he had NHL stats memorized for three entire seasons, why wouldn't I be proud about that?"
Over time, Russ has learned to be more comfortable with his son's autism. A part of this is learning to celebrate Trevor's milestones, like when he learned how to tie his shoes at age 10.
Trevor skated for the first time in November 2008. Learning to overcome sensory issues–being okay with the feeling of wearing skates and a helmet–took time. Learning how to play did, too. Trevor spent more than two years attending hockey clinics before joining his first organized team.
When Ryan Mulvaney selected Trevor in the Montclair (New Jersey) Hockey Club's house league, the head coach of the peewee Wild didn't know his new forward was autistic. After Russ talked with Mulvaney, the coach dove into researching the disorder. Mulvaney never mentioned autism to the rest of the team, though. Trevor was just another member of the Wild.
"I quickly found [for] game situations, he didn't need anything from me," Mulvaney says. "Every split second of the game, he knew exactly where to be. Positioning with Trevor, by far the best I've ever seen in any kid I've ever coached. Hands down."
Positioning, in hockey, equates to scoring chances, but during Trevor's first season a goalie's save or a shot sent wide stymied him time and again. From the bench, Mulvaney would look over to Trevor's family in the bleachers, raising a thumb and index finger to indicate that the 11-year-old was that close.
Near misses turned into goals the following season, five in all. One stands out: a two-on-one rush into the offensive zone, with the Wild looking to extend a second-period lead. One of Trevor's teammates fired a shot, but the opposing goalie was there to make the stop.
Bouncing back onto the ice, the puck landed in the high slot. Trevor was ready for it. Head down, eyes locked on the puck, he wound up and blasted a shot into the back of the net. The arena erupted, with glove-tossing pandemonium breaking out on the Wild's bench. Mulvaney and his assistant coach jumped up and down, hugging each other with tears in their eyes.
At season's end, Trevor won the league's most improved player award.
Hockey has provided opportunities off the ice, too. Trevor had to learn the same social skills–like sustaining conversations, or facing a person and responding when his name is called–that come naturally to most everyone else. "I just couldn't really make a lot of friends," Trevor said. It got harder as he entered middle school. "I wasn't really interested in what they were interested in, so I couldn't really talk to them."
Attending a social-skills group in nearby Fairfield, New Jersey, for almost a decade has helped. So does finding common ground with other people. When Susan drives Trevor and some of his hockey friends to practices, she notices Trevor participating in conversation. Keeping up with the conversation is still a struggle–Trevor's always a little behind–but he's interacting now, something that wasn't happening even a year ago.
"You could tell there was nowhere else he wanted to be but the locker room with the kids, on the bench with the kids, on the ice during practice, on the ice during games," Mulvaney said. "That's all he ever wanted to do."
On a late night in May, before Trevor graduated eighth grade, Russ sat on a ratty beige couch in the family's mostly darkened sunroom. He kept an eye on his iPad, which was mutely streaming the Chicago Blackhawks and the Anaheim Ducks in what would be the first of three overtime games in the NHL Western Conference Finals. Russ knew Trevor would want to talk about the game in the morning.
This fall, Trevor will be a freshman at West Orange High School. He'll take honors classes in math and science. The school has a hockey team, and Trevor is training hard for tryouts. Life isn't completely smooth, though. Anxiety, Russ knows, will always be an issue for his son. Disruption in routine is another ongoing problem.
Then there's trying to navigate the social waters of high school–arguably an arduous task for any teen, made that much harder by autism. Trevor's still trying to learn social cues, but lacking fluency in non-verbal language complicates his efforts.
For Russ and Susan, thinking about their son's life beyond high school is a series of questions. Sometimes even college seemed too uncertain.
"For years, we just–we didn't like to talk about it," Russ said, adding the topic was uncomfortable. "There's no reason why that shouldn't be the goal, and we don't think there's any reason why it can't be a realistic goal."
Russ is also confident that Trevor can one day find a job. He's taken his son to watch statisticians at a New Jersey Devils game, showing his son that there are opportunities for Trevor to make a living off his passion for stats. Still, Russ knows there's more to the work equation for people on the autism spectrum than just confidence. According to a 2013 study published in the Journal of the American Academy of Child & Adolescent Psychiatry, only about half of surveyed post-high school young adults on the spectrum earned a wage that didn't come from work done at home.
Russ doesn't focus on the unknowns, though. On his iPad, the Blackhawks and Ducks kept going. Trevor already has come so far; who's to say how far he will go?
"We'll face those challenges," Russ said, "when we get there."