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May 19, 2015 11:39 AMPublication: The East Hampton Press & The Southampton Press

Running Is Life For Schneider Family

The Schneider family, from left: Allan, Jamie, Alex and Robyn.
May 20, 2015 1:19 PM

For some people, running is a hobby, or a passion, perhaps even an obsession.

For the Schneider family, it is a lifeline.

Robyn Schneider, her husband, Allan, and their twin sons, Alex and Jamie, who will turn 25 in June, have dealt with more adversity than seems fair for one family: Alex and Jamie have severe autism, Allan has been living with multiple sclerosis for more than 30 years, and Robyn battled breast cancer six years ago.

Through it all, running became the glue that held them together.

Ms. Schneider shares her family’s story and the positive, powerful and unexpected effect that running has had on their lives in her memoir, “Silent Running: Our Family’s Journey to the Finish Line with Autism,” which she wrote with Kate Hopper. It was published on April 1 by Triumph Books.

The Schneiders live in Great Neck, but their devotion to competitive road racing has brought them to the East End on several occasions, most notably in 2009, when Alex and Jamie ran in the Hamptons Half-Marathon in Springs. They later ran the full Hamptons Marathon in 2010, but the event in Springs a year earlier was the first half-marathon for the twins, who by now have competed in more than 150 races. Alex has completed 11 marathons and one ultra-marathon, while Jamie has done eight marathons.

To provide guidance, pacing and overall safety, the boys each run with a partner—Jamie with his father, and Alex, who is the faster of the two, with longtime coach Kevin McDermott, one of the only coaches fast enough to keep up with him.

Running and racing became a singular obsession for the Schneiders for a very simple reason: It was the one activity that seemed to get through to Alex and Jamie, to help them and their parents forget, at least momentarily, the oppressive hold that autism has on nearly every moment of their lives.

In her book, Ms. Schneider described the joy she felt the first day she brought Alex and Jaime to train with Rolling Thunder, a running club created for athletes with special needs:

We had been part of communities of autism parents before—when we gathered to launch Genesis and, later, as Genesis parents. But so many of those group meetings were fraught with concerns: behaviors that couldn’t be managed, services that we were all desperate to secure for our children. Rolling Thunder immediately felt like a community of people who understood what our lives were like, at least a little bit, but we were sharing a different goal: to have fun, to embrace the joy of running.

The whole way home, the boys were serene, smiling out the windows. And for the rest of the day, they were calmer than we’d seen them in ages, maybe ever.

In the book, Ms. Schneider details the challenges she and her family face on a daily basis, and how running started as an outlet for her sons but eventually delivered some of the same mental and physical benefits to her and her husband. Despite the pain and fatigue associated with MS, Mr. Schneider—who was not a runner before his sons started—has completed marathons. Ms. Schneider, meanwhile, had put exercise on the back burner after her sons were diagnosed with autism, but started running while going through chemotherapy seven years ago. Last month, she completed her first half-marathon.

The Schneiders’ story is compelling for obvious reasons, and they’ve been featured nationally on “Good Morning America” and in The New York Times. But Ms. Schneider said she had several motivations for telling her family’s story in her own words.

“People seem to be really touched by our story—not just parents with kids with autism but people in general,” she said. “Everybody deals with adversity. But for me, I felt like this was a gift to Alex and Jamie. They don’t understand any of this, but for me, it felt like leaving a legacy.”

Ms. Schneider added that while autism has been a broadly covered topic in the news for the past few years, she feels there isn’t nearly as much attention given to the kind of severe autism that affects Alex and Jamie. “There are a lot of stories about individuals with high-functioning autism, how they’re able to have certain gifts and abilities and can get jobs and get married,” she said. “But there’s nothing out there that really tells the story of how it is with kids with severe autism: the challenging, self-injurious behaviors, the daily struggles that we live.”

Ms. Schneider’s book certainly achieves that goal. The first few pages of the book unfold in heartbreaking fashion, as they learn of the diagnosis and come to grips with it. But the book—much like the Schneiders themselves—does not fixate for long on the myriad challenges the family faces, but, rather, on the proactive steps they take, with every setback, to keep moving forward.

“Inspirational” is certainly a word that can be applied to Mr. and Ms. Schneider, who just celebrated their 30th wedding anniversary. But Ms. Schneider says that is not how she sees it.

“I feel like my sons are the ones who inspired me,” she said. “I wouldn’t have started running if it wasn’t for them. They inspired Allan too, and running has helped with his MS.”

There is plenty on the horizon for the Schneiders in the next few months. Alex is training for the inaugural Suffolk County Marathon, set for September 13, and McDermott has been focused on trying to get Alex to break his marathon personal record of 3:14:36, which he set in the 2013 New York City Marathon. (Jamie has been working to recover from recent setbacks and won’t be competing in that race).

Ms. Schneider is hoping to compete in her second half-marathon, the Hope Runs Here Half-Marathon at Smith Point in Shirley in June, which is a fundraiser for breast cancer research and awareness. Ms. Schneider will be back in the Hamptons on August 8 for Authors’ Night at the East Hampton Library, an invitation she says she was thrilled to receive.

The Schneiders have plenty to look forward to and celebrate, but the challenges still remain, ever-present and always evolving, as they have for more than two decades. Running, however, remains a constant that keeps them afloat.

“It’s a daily struggle,” she said. “We have a lot of stress in our lives, and we always have. We just try to keep our heads above water and enjoy the days and things that are good. Part of the wonderful thing about this running community is that they know [the boys] and embrace them and celebrate them and encourage us. We relish in all of that and cherish it. We feel that it’s kept us going.”

For more information, visit www.robynkschneider.com and www.autismrunners.com. A book trailer can be viewed at https://www.youtube.com/watch?v=7zjUaByYtIY&feature=youtu.be.

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heartwarming story and very well written. Thanks for putting this on the front page - the family is an inspiration to all and WOW is Alex fast
By Nature (2966), Southampton on May 19, 15 12:25 PM
Lovely story; thanks for writing. Just one thing: The Suffolk marathon is Sept. 13, not June 18.
By noted (8), quogue on May 19, 15 7:14 PM
Thanks for pointing that out, the change has been made.
By Cailin Brophy (16), Sports Editor on May 26, 15 11:52 AM