NORTHAMPTON — Just being on the field together for the Northampton boys lacrosse senior night ceremonies was a triumph for the Durfer family.
Jimmy Durfer’s years of hard work had earned him a spot on the varsity as a senior, a rare feat for a kid on the autism spectrum. He made his first career start that night in front of his father, Jim Durfer, who, despite advanced ALS, was in the crowd.
No matter how the game turned out, this night would be a happy memory.
It turned out perfectly.
Jimmy still does the drills in his backyard that helped make that perfect night possible. He often spends afternoons slinging a lacrosse ball against the bounce-back, the well-worn, mini vertical trampoline that allows him to play catch by himself.
Jimmy does it for long stretches — 50 times left-handed, then 50 more righty.
Thump. Thump, thump.
Sitting in his wheelchair in the upstairs room in front of the computer that connects him to the world, the repetitive noise of his son’s practice keeps Jim Durfer company.
Thump. Thump. Thump.
When the bounce-back was new, Jim would join his son outside, dictating the workouts.
But now that seven years of ALS has confined the 53-year-old former business consultant to a wheelchair, unable to use his limbs, Jim Durfer draws satisfaction from knowing his son is still out there.
Thump. Thump. Thump.
“Listen. Can you hear that?” he says through the Eye Gaze computer that allows him to communicate. “It’s my heartbeat.”
Amyotrophic lateral sclerosis used to be called Lou Gehrig’s disease but is now more commonly known as ALS. There is no specific test to diagnose the disease so doctors first eliminate other potential diseases with overlapping symptoms.
Jim started the tests in 2009 when his arm felt too weak to pitch to his youth baseball team in practice. At the same time, his golf handicap went from a 7 to a 13. The 14-year veteran of the Navy and Marine Corps realized he wasn’t himself.
ALS is cruel and often moves fast. It steals its victims’ ability to function, one system at a time, trapping still-sharp minds inside malfunctioning bodies. While it affects members of the armed forces more often than the general population, its cause is unknown and there is no cure. Treatment, when successful, slows progress, but the relief is only temporary. The average life span after diagnosis is three to five years.
ALS patients are hoping for miracles and rarely find them.
But Jim has already experienced one miracle. Helping Jimmy find not only success but friendship and belonging through sports is among his family’s greatest achievements.
Jimmy has Asperger syndrome, a diagnosis on the autism spectrum. According to AutismSpeaks.org: “Affected children and adults have difficulty with social interactions” and often have “uncoordinated motor movements.”
Youngsters on the autism spectrum often struggle with sports. The unpredictability of the games and teams can be challenging for people who crave order.
“He is a miracle. With his Aspergers, it’s like playing a sport on a NY sidewalk,” Jim wrote, referring to the need to continually process actions at high speed. “These children are typically uncoordinated. It’s been his unbelievable hard work that got him to this point.”
Jim always loved sports. The Milton native played baseball and wrestled in high school and was an excellent golfer. Coaching was always a natural part of being a parent for him, beginning with his daughter Lauren’s youth soccer teams.
Jim and Anita, his wife of nearly 30 years, always planned on nudging their son toward sports, hoping it would help him physically and socially. But Jimmy never needed the push. While challenges stemming from his disorder at times affected him on the field, Jimmy was an eager athlete, playing baseball, soccer and lacrosse.
Many of his lasting friendships are rooted in playing for his father across Northampton youth leagues.
“Having autism means you don’t say the right things all the time. A lot of kids shy away from kids who act that way because they don’t know what to do. These kids have supported him. They stand up for him,” said Anita, who works in Smith College’s catering department. “It’s a great experience for him to feel, being part of a team.”
Jim believes other parents can gain from what his family learned with Jimmy.
“Parents with children on the autism spectrum should not give up and put them in a box. Get them out on the fields where they can socialize and model. Work tirelessly to build their coordination and confidence. If you are worried about meltdowns, help the coach by becoming an assistant or team mom,” he wrote in an email.
“Coaches, don’t give up on these kids as well. The beauty behind the syndrome is they love structure and rules. Find the silver lining in their skill set and exploit it. Work on this one skill until perfected and only ask them to do that. His/her teammates will understand and count on their consistency. This way they aren’t just being thrown in, but are adding value to the whole team, which allows the patience to tolerate quirky behavior and socialization.”
Jim kept coaching until Jimmy reached high school. He’d lost the use of his arms by that point, but that didn’t stop him from piloting Jimmy’s eighth-grade soccer team. The combination of discipline and kindness that marked his coaching style wasn’t hampered. Players and parents were eager to assist him when necessary, but Jim always seemed to figure out a way to make it work.
He’d planned to help out with Jimmy’s high school teams, but the progression of his ALS prevented that. He’s now paralyzed from the neck down, unable to use any of his limbs. Speaking is a struggle. His family is skilled at understanding him, but for most conversations he uses the Eye Gaze computer.
That technology has re-opened the world to people whose ability to communicate has been hampered by mobility limitations. The computer calibrates itself to follow Jim’s eyes. His gaze becomes the mouse, allowing him to spend hours a day online.
He reads, keeping track of current events and politics. Facebook and email allow him to stay in regular touch with friends and family. In-person conversations are slow, as he types each letter, but even filtered through the computer voice, his word choice makes it undeniable that his mind and wise-cracking sense of humor are very much still intact.
“Don’t let it define you,” he said. “I’m not ALS. I’m still Jim.”
Even now he still coaches Jimmy in a limited capacity, suggesting practice routines to work on his skills.
Leaving the family’s Florence home requires time and planning to get the necessary equipment into the family’s specialized van. Staying outside for long stretches, especially in unfavorable weather, isn’t healthy or comfortable.
Even though he misses seeing most of the Hamp High games live, Jim still follows along eagerly. Parents send him text messages during games to keep him updated on the score and they then post links to YouTube of the highlights. He will miss the games next year when Jimmy is a freshman math major at Westfield State University.
On April 22, Jim was hospitalized for pneumonia, which was made more complicated by his ALS. With an ALS patient, any hospital stay can be a long one. But with Jimmy’s senior day less than a month away, Jim was determined to be there.
“Come hell or high water,” he said. “It was a large motivator.”
He was released from Cooley Dickinson Hospital six days later.
After three years on junior varsity, Jimmy earned a spot on varsity for the first time as a senior, an accomplishment he’s particularly proud of. He has been largely a role player, but is one of Hamp’s most beloved teammates. Many of the Blue Devil players had been on Jim’s teams when they were younger. They knew what senior night meant to the family.
“I don’t think it was ever said at any time, but I think it was going through all of our minds,” junior Sam Ohotnicky said. “We wanted to make Jimmy’s senior night special for him and get him a goal.”
They were running out of time when East Longmeadow got the ball with less than a minute left and Hamp leading 9-4. When Jared Leavens intercepted an East Longmeadow pass in the defensive end, it was clear Hamp would only get one shot at this as the clock dipped below 15 seconds.
Leavens fed the ball ahead to senior captain Matt Huggett who crossed midfield and spied Jimmy waving his hands calling for the ball not far from the goal.
The long sidearm pass was perfect. Jimmy caught the ball 10 feet from the cage and turned as the Spartan defense tried to recover. Like he’d practiced, Jimmy unloaded a shot toward the goalie’s feet that thumped off the ground into the net with 8 seconds left in the game.
“It felt amazing. It felt awesome,” Jimmy said, smiling.
While Jimmy played it cool, walking away from the goal casually, joy exploded around him.
Teammates who were close enough hugged him and each other, while the rest raised their arms, and hooted unintelligible yelps of happiness.
“I was super-pumped. It was awesome. That’s what makes sports so great,” said Huggett, who wound up for a Tiger Woods-caliber fist pump. “It’s definitely a highlight of my sports career.”
Ohotnicky agreed.
“We were all looking at his dad and cheering for Jimbo. The sideline was going crazy,” he said. “We’ve been Jim’s players and Jimmy’s teammates since youth. We were all saying after the game ‘We got Jimmy his goal. That’s what matters.’ It was great to have that final moment.”
Unable to sit in the bleachers, Jim Durfer’s wheelchair was perfectly positioned up against the fence, giving him a good look at the goal.
“It was more perfect,” he said. “Eight seconds dude. I was right there, a perfect on the top view.”
To see the players he once coached rally around his family touched Jim.
“I coached most of these boys at one time or another. I call them my babies,” Jim said. “I can’t believe how supportive they are. It’s the definition of village.”
People around the field fought back tears with varying degrees of success.
Northampton coach Matt Striebel was as animated as anyone on the Blue Devil sideline when the goal was scored, raising his arms in elation. He won an NCAA championship as a player at Princeton and multiple Major League Lacrosse titles with the Philadelphia Barrage. But the emotion of the moment overwhelmed him.
“I’ve had some really special moments on a lacrosse field. That game is on a very short list of very important, perfect moments,” he said. “It really was perfect. It was an opportunity for us to clinch a playoff berth on senior night. We had this mini-quest at the end of the game to get Jimmy a moment like that with his dad there.”
Striebel paused and smiled, reliving the moment in his head before adding:
“It was a moment where things came together. You couldn’t have drawn them up better. When does something like that happen as perfectly as it did?”
Jimmy Durfer got his wish.
“It was senior night. I was hoping to make an impression,” Jimmy said. “Something that’s long lasting.”
Matt Vautour can be reached at mvautour@gazettenet.com.