For Barry Trotz and wife, transition to Washington centers around son with Down syndrome

Capitals Coach Barry Trotz, right, poses with his wife, Kim and youngest son, Nolan, who has Down syndrome. (Katherine Frey/The Washington Post)

Barry and Kim Trotz figured familiarity could guide their youngest child through the biggest change of his life, so first they made sure to find 13-year-old Nolan a decent Tex-Mex restaurant. On the eve of Washington Capitals training camp, the final day of the offseason, the family dined at El Paso Cafe in Arlington, where Nolan had grown to love the salsa during their regular stops since moving here this summer.

“He’s a staple guy,” Barry Trotz says of his son, who was born with Down syndrome. But the new Capitals head coach also knows Nolan as many other things: a fearless adventurer, a strong swimmer, an ace at Wii baseball, a lover of spicy foods, a flirt around his sister’s friends and a prankster at dinner parties, a kid whose smile made hockey losses feel okay.

Raising a special needs son, the Trotzes usually worry about not doing enough, but in their new city, they lately have been feeling like they have too much piled on their plates.

They picked their Clarendon home based on Nolan’s needs, and at first it seemed ideal: grassy parks down the block, middle school within biking distance (either Barry or Kim steering the family tandem and Nolan riding in back), neighboring adults who invited them to an ice cream party and whose daughters knocked on the front door to invite Nolan to play kickball.

“Which never happens when you have a special needs kid,” Barry said.

But summer soon ended. No more knocking, no more kickball. Then school started, and Nolan’s teacher was great, but a new environment with less individual attention led to acting out in class. At home, Nolan had grown quieter since the family completed its move in late August. Vocalizing his feelings had always been a struggle, a product of his condition.

“I wish we could get in there for a couple minutes,” Kim said, meaning Nolan’s thoughts.

But they could surmise enough. They knew he missed his older siblings, who regularly dropped in when everyone lived in Nashville — his sister Tiana providing haircuts, his brother Tyson challenging him to wrestling matches, his sister Shalan camping out overnight in the living room. They knew he missed his former neighbors, who always invited Nolan to play and said hello when he walked down the street. They knew he missed his peers, such as Garrett from the Best Buddies program, who accompanied Nolan the first time he walked to school without an adult, while Kim watched from the window and cried.

“That’s really the sadness,” Barry said, helping cut up Nolan’s sizzling fajitas.

“Big time,” Kim said, as Nolan dug into his dinner.

Barry Trotz hugs his son, Nolan, 13, before the first preseason game Sept. 21 at Verizon Center. (Katherine Frey/The Washington Post)

Nine hours after Nolan’s birth, his parents were getting worried. Their fourth child was still with the doctors. When they finally brought him back into the room, even before the doctors could reveal the results of genetic tests, Barry noticed that both of Nolan’s pinky fingers were curved, a sign of Down syndrome.

Barry and Kim had declined the amniocentesis, a prenatal procedure which would’ve shown the extra copy of chromosome 21, so the hardest part, they said later, was having to call their friends back and explain. Before long, though, the condition had become the family cause.

In 2008, Barry met a woman in Nashville named Anneliese Barron, who wanted to establish a state headquarters for Best Buddies, an organization that pairs volunteers with people with intellectual and developmental disabilities. Barron needed $200,000. On the first night, thanks to a speech that left everyone in tears, Barry helped raise $30,000.

The goal was reached by January 2010. Barry began bringing over autographed gear to help, a practice he continued until the Predators fired him this spring. They organized a casino night and a gala. If Predators players wanted to participate in the annual charity run, Barry paid for their registration fees. Last year, the Best Buddies prom grew so big, it could no longer fit inside Bridgestone Arena, where the Predators play.

“They left behind a legacy,” Barron said. “More than just hockey.”

Nolan, meantime, thrived in a community where his story had been public knowledge almost since birth. (“Predators coach finds unexpected blessing,” read one newspaper headline from 2001.) At home, the family’s trampoline improved Nolan’s gross motor skills. He studied sign language, and later learned how to ask for salsa. In middle school, he took swimming lessons and ran cross-country. Once, Nolan still had three-quarters of a track to run, so the coach told everyone who finished, “Okay boys, let’s bring him in.”

Before she could finish that story over dinner, Kim welled up, and Barry looked like he might join her. Between them, Nolan hovered over an iPad, watching an action movie. He buzzed his lips and pretended to be an airplane. Barry turned to Nolan and smiled.

“You’re silly,” Barry said. He formed his fingers into a “y” shape, pressed his thumb against his nose and wiggled his hand. The sign for silly.

Nolan signed back then returned to the iPad. He opened up a new application, immediately found Waldo and started to laugh.

Trotz and his son, Nolan, 13, give each other the ‘silly sign’ before the first preseason game against the Buffalo Sabres at Verizon Center. (Katherine Frey/The Washington Post)

In early June, after the Capitals made Trotz’s hire official, the family flew to their offseason home in British Columbia because Kim wanted to keep their summer routine. Packing up from Nashville could be crammed into one week, they reasoned, to ease Nolan’s transition. He could still go boating with Barry on the local lake and swim through the chilly waters, so as not to prolong the exit from the only city he had ever called home.

The peaceful exurbia had been their lives since Trotz became Nashville’s first head coach in 1997, but suddenly they found themselves making an offer on a house more than 600 miles away and closed the sale during development camp in July. Summer sped by. Nolan and Kim did homework together each day. Barry studied his new team and players. Their lives were packed into boxes, then loaded onto a truck, headed east.

One day after the move, Barry and Kim realized Nolan might not have realized where they were. So they drove across the Potomac River and headed for monuments and buildings that served as the setting for the movie, “Night at the Museum: Battle of the Smithsonian.” They wound up spending almost three hours at the Lincoln Memorial, and you should’ve seen Nolan’s face, Barry and Kim said, because it assured them that Nolan could make this place home.

“Now it’s starting to hit him that things are settled,” Kim said, though much remains unresolved. She had made calls to youth sports programs, but gotten no responses, and still needed to find a swimming program. She wanted to hire an advocate for Nolan’s Individualized Educational Program (IEP), so they could find an aide for one-on-one instruction.

Down the road, Barry and Kim saw even bigger transitions. This time next fall, Nolan is scheduled to enter high school at Washington-Lee. He already has sprouted a pencil moustache, so Barry wondered how to explain the idea of puberty. In Nashville, Nolan was raised near the spotlight, the son of the city’s beloved hockey coach. Here, the biggest challenge had become making his life more public.

“I want him to see kids he knows at the grocery store,” Kim said.

“It’s a big deal to be recognized,” Barry said.

At the moment, though, it was almost bedtime. Kim and Barry thought about squeezing in a bike ride with Nolan around the neighborhood, or maybe a run through the park. So the family left the restaurant and moved toward the family car, the one with the new Virginia license plates, to begin the short drive to their new home. And on the way, Barry again told Nolan that he was being silly.