At this point in their lives, it’s fair to say Alex and Jamie Schneider tell the world their story with their legs rather than their voices.
The 27-year-old identical twins from Great Neck, N.Y. have a form of autism so severe that they’re completely non-verbal and require 24-hour-a-day care. However, in running shoes and out on the roads, they’re making a statement larger than any words can convey.
Though identical in DNA, the brothers are very different long distance runners. Alex, who is gearing up for the 2018 Boston Marathon, his 18th marathon overall, can hit the finish line in well under three hours. He swooped through New York City’s five boroughs in November in 2 hours, 50 minutes and 5 seconds to set a new personal record.
Jamie, on the other hand, is a social runner, happy to linger around water stations during races and shake hands with volunteers. Though he has eight marathons under his belt, he won’t be running this year’s Boston Marathon. Instead, he’ll be rooting hard for his brother to set yet another personal record.
“Running is an outlet for their energy,” their mother, Robyn Schneider, said. “It’s great therapy for them.”
However, going to Boston unearths some painfully scary memories for the family. They were at the historic race when the bombings leveled the finish line in2013. Alex had already finished his 26.2 miles, but Jamie was still on the course with their father, Allan Schneider.
Now they’ll return to Bean Town, not for the first time, and probably not for the last, to continue on the path that brings so much vitality to their lives.
Trying Anything and Everything
In 1992, long before autism was a well-known condition, experts told Allan and Robyn that their 21-month-old sons had a “language delay with autistic characteristics.”
They weren’t reaching age-appropriate milestones in their communication patterns, they exhibited repetitive behaviors and they would throw incomprehensible fits, even for toddlers.
Living a stone’s throw from New York City enabled Allan and Robyn access to leading researchers and therapists in the then-small but mighty autism community.
They even started their own home schooling program for Alex and Jamie and, along with a small group of other determined parents, opened a satellite location for children with autism; the Genesis School, which is part of the Eden II Programs.
As the boys got older, Allan and Robyn engaged them in other ways.
“We never left any stone unturned,” Robyn explained. “When they were young, we tried anything and everything. We always wanted to explore because they can’t say what they like and what they don’t like, so the only way for us to know is to experience things.”
With that philosophy, the boys got hooked on running at the age of 15 thanks in part to the Rolling Thunder Special Needs Program, which pairs experienced runners with people who have developmental disabilities. Alex was taken under the wing of the fastest runner on the team, Kevin McDermott, who coached him for 11 years. And, the family hasn’t looked back since.
The Alex and Jamie Barometer
While Alex and Jamie cannot speak, they have great “receptive language.”
“If I were to tell Alex to go in the den and put on his shoes, he could probably do that, but they need complete assistance in the bathroom, with showering and all kinds of living skills,” Robyn said. “Neither of them will come into the kitchen and grab a bite to eat. If I didn’t make meals or offer them food or water, they wouldn’t eat or drink. If it’s 20 degrees out, neither of them will know to put a jacket on. They’re not aware of their environment or danger, like traffic, while crossing a street. We have to hold their hands all the time.”
So, with running, Allan, Robyn and the brothers’ coaches constantly have to check for injuries and blisters.
“That’s especially true for Alex because he’s running at such a high level,” Robyn said. “Neither of them express pain. There was a time when Alex got a stress fracture in his foot and the only way we knew there was a problem was he was running down a hill and he was limping.”
So, how do Allan and Robyn know their sons enjoy the sport? Easy. It’s the endless smiles when the race gun goes off.
“Doing these races, it’s just been incredibly wonderful for us as a family because we never thought they could do anything to that extent,” Allan said.
A Jolting End to a Race
Boston 2013. If you pair that city and year together, most will conjure up images of a man in a cowboy hat running alongside a wheelchair carrying a ghostly white and bloody man, or images of a senior runner on his back on the ground with Boston police officers surrounding him.
The day is unforgettable and, for the Schneider family, it’s still every bit of their reality.
Robyn, who had VIP access to the finish line in order to greet Alex after his race, was sitting in the front row bleachers for most of the day. Lucky for her, Alex ran faster than his last Boston Marathon, so the two of them were already inside their hotel room when the first blast went off. Had he clocked the same time as he did in 2011, Robyn would have still been sitting in that devastated area.
Meanwhile, Allan was ushering Jamie along the course with another coach, Katie Raab, when their race came to a screeching halt at mile 22. Police officers stopped the entire field from proceeding further, and a bus picked up Allan and Jamie and transferred them, along with about 150 other runners, to a church a mile away, where they were on “lock down” for four hours.
“People were very animated on their phones, shouting and trying to find out what was happening with their loved ones,” Allan explained. “Jamie was drinking it all in. This was over-stimulation to the max. He does very poorly with people who are upset. He feeds off their energy and gets very scared. That’s when he starts hurting himself.”
Leading up to the marathon, Jamie was engaging in self-injurious behaviors when he got anxious to the point of breaking bones and tearing ligaments in his feet from slamming them to the ground.
So, while he and Allan were inside that church, it took everything in Allan’s repertoire to keep Jamie safe. Finally, around 10:00 p.m., Allan and Jamie made it back to their hotel and reunited with Robyn and Alex.
“I remember jumping in the hotel pool and just sitting at the bottom of the pool trying to wash away the whole day,” Allan said. “I’m proud of the fact that I’ve run many marathons with my son, but getting him through that day in a bombing situation, I don’t think I have a prouder personal moment as a father.”
Working Through the Aftermath
In the days after the bombing, Jamie, who was already extremely sensitive to sound, couldn’t even tolerate his parents talking. That subsided, but he stopped running and eating, and his movement became alarmingly slow.
Allan and Robyn brought him to the neurobehavioral unit at the Kennedy Krieger Institute in Baltimore, Maryland, where he was diagnosed with catatonia, a condition that affects motor, behavioral and vocal responses.
“It’s basically a regression, physically and emotionally,” Robyn said.
With medical and behavioral treatment, Jamie’s anxiety and obsessive compulsive tendencies were reduced. Then, they were able to implement some exposure therapy to get him back to running.
“At first, we would just go for walks. Then, maybe we’d run a mile,” Allan said. “We slowly and gradually would get him to feel more comfortable not only while running, but in other areas of his life.”
That following November, Allan, Alex and Jamie ran the New York City Marathon, a race with more than 50,000 runners and 3.5 million spectators lining the course.
“In Brooklyn, someone leaned over in the crowd and blew a giant horn right in his ear and he just lost it completely,” Allan said. “He was very self-injurious, and it was a big scene that lasted about 15 minutes with him biting himself. It went very slowly after that. We’d walk and run, walk and run, and we finished the race in the dark.”
Ongoing therapy to help Jamie rebound to a calmer state following the Boston bombings allowed him to return to Boston in 2015 to run with his father again. While Alex finished the race, a frigid northeastern day forced Allan and Jamie to quit at mile 19 due to hypothermia concerns.
So, why encourage Jamie to run the same race that shook him to the core?
“For us, it’s important for Alex and Jamie to build resilience, and be involved in things they love to do,” Allan said. “We weren’t going to let the tragedy stop us from living our lives.”
Fast As Can Be
While Jamie won’t be running in the 2018 Boston Marathon due to the fact that Allan has been battling an injury, the family will certainly be pulling for Alex to break his 2:50 marathon record.
He’s training like a madman under new coaches Boyd Carrington and Sal Nastasi, talented runners in their own right who will run the full race with Alex.
Alex put in 85 miles last week, and a 20-mile long run at an astounding 6:48 per mile pace, with some of his miles logged at under six minutes.
“With Alex, it’s a passion for him. He’s in a euphoric state when we go to a race and he puts on his bib,” Robyn said. “Alex is the competitive one because his coaches are taking him to another level, but he doesn’t know he’s being competitive. He came in second in a race a couple of weeks ago, and he doesn’t know or seem to care about beating the guy ahead of him. He’s just running for the pure joy of running.”
Time will tell what kind of race Alex throws down. But, in the meantime, he’s all smiles in the days leading up to it.
When Alex and Jamie aren’t pounding the pavement, they enjoy swimming, horseback riding, shopping and going out to eat. They also play classical music on the piano thanks to the Occupational Octaves Piano Program and weekly lessons.
They don’t read music, per se, so when learning a new piano piece, the keys are labeled with colors, and colored pipe cleaners are attached to the brothers’ fingers.
“For example, their thumb would be pink, and the ‘C’ key would be pink,” Robyn explained. “They’re just matching their fingers to the keys on the keyboard. After the first week, Alex and Jamie didn’t need pipe cleaners anymore because it was muscle memory, and now they’re able to play in concerts and recitals.”
So, as you can see, almost anything is possible for those who have autism.
“The thing that warms my heart is when people look at our boys and see them as runners or pianists, not as kids with autism,” Robyn said. “Alex and Jamie have abilities, they just show them differently. So, when people respect them and celebrate who they are and what they can be, it makes all the difference.”
A difference that extends well beyond 26.2 miles.
If you’d like to learn more about the Schneider Family, check out Robyn Schneider’s book, Silent Running: Our Family’s Journey to the Finish Line with Autism and her website, http://www.autismrunners.com/.