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A 26.2-mile race can be intimidating for those who have never run such a long distance in their lives. Though she falls in that category, Kelly Russell, a reading teacher at the Westhampton Beach Middle School, is busy training for her first marathon—and it is a doozy.
She will be running in the 2012 New York City Marathon this fall and is undertaking the challenge in honor of her autistic son, Jackson, now 5. She also intends to raise money—at least $3,000—for Autism Speaks, a research and advocacy organization that, since its inception in 2005, has raised $173 million to support those with autistic family members. She has until November to raise the funds.
Ms. Russell said she started running for sport about six years ago as a way to channel her stress following several miscarriages that left her feeling frustrated and helpless. “It became empowering and cathartic to run,” the Wantagh resident explained, later adding that she quickly became hooked on the sport.
Competitive by nature, Ms. Russell started building her stamina to run in a 5K and, in 2003, completed the Wantagh Annual Snowball Run in her hometown. From that point on she found herself thinking of ways to increase her stamina so she could run even longer distances. Within a year, Ms. Russell was running seven-and-a-half miles at a clip.
The single mother of two—she also has a 4-year-old daughter named Molly—has taught at Westhampton Beach School District for the past decade. Ms. Russell gave birth to Molly a year after adopting Jackson, after being told by doctors that she would be unable to have children.
Jackson was 3 when he was diagnosed with autism in 2009, though she said it took her some time to link his symptoms with the disorder. Children diagnosed with autism, a brain development disorder, often experience communication and behavioral challenges and tend to engage in repetitive behaviors. According to www.autismspeaks.org, one out of every 110 children born in the United States will be diagnosed with the disorder, and boys are four times more likely to suffer from autism than girls. There is no known cure.
“When Jackson was a baby, it was very difficult to bathe him,” Ms. Russell said. “He would scream the whole time.”
She explained that his behavior grew worse when he entered a classroom setting. She said some of her friends did not want their children to play with Jackson, fueling her concern that it would be more difficult for him to socialize with others.
“He is very quirky and he likes things to be ordered in his particular way,” Ms. Russell said. “He can struggle at times with his speech and to regulate his body. And, no matter how far he comes, there are certain things that aren’t going to change.”
Complicating the situation was the fact that doctors had a tough time diagnosing the infant.
“I took him to doctors all over Long Island who gave me all sorts of diagnoses,” she recalled, noting that one said Jackson suffered from attention deficit hyperactivity disorder, or ADHD. “Some said I needed to be a better parent.”
It was around that time that Autism Speaks became Ms. Russell’s go-to resource as she studied the condition and determined how to support Jackson’s learning, social and emotional needs. Frustrated, she stopped going to doctors covered by her medical insurance and took Jackson to New York University Medical Center in Manhattan for a closer evaluation, and that is where he was diagnosed with autism.
Following her son’s diagnosis, Autism Speaks provided Ms. Russell with a network of mothers who could relate to her situation. “I think they are the best at disseminating information,” said Ms. Russell, who attributes Jackson’s great progress to the non-profit’s early intervention.
Ms. Russell took classes at Brooklyn College and eventually became a certified autism specialist. In addition, she has made sure that family members responsible for her son’s care have received proper training, and even enrolled Jackson in a special socialization class that has helped him relieve some of his social anxiety.
As a result, the New York University Child Study Center now considers Jackson to be an extremely high functioning child with autism, according to his mother.
“People treat autism like a death sentence, but it’s not,” Ms. Russell said. “I know that Jack will have a different path than Molly, but maybe his path is better, or maybe we shouldn’t judge.
“I’ve realized how strong a woman, a parent and a person I am because of this amazing boy,” she continued. “He is a gift.”
And she hopes to repay those who helped her better understand her gift by raising money for Autism Speaks by running in 2012 New York City Marathon. She got involved with fundraising for the organization last year after completing a walk that included an opportunity to meet Dr. Temple Grandin, a professor of animal science at Colorado State University. Dr. Grandin is autistic and regularly shares with others how she learned to live and excel with autism.
“After Temple Grandin spoke at the walk, Jack walked up to her and said, ‘You’re a scientist with autism and so am I!’” Ms. Russell recalled, laughing.
In order to run in the marathon, she had to pledge to raise $3,000 for Autism Speaks—and must make up the difference if she falls short. Though she has raised only a little over $300 so far, Ms. Russell is confident that she’ll exceed her goal before the November deadline.
As far as getting through the 26.2-mile run, Ms. Russell said she is continuing to train. Right now, she can run 17 miles comfortably.
“I want to achieve this goal for me and to thank him for working so hard,” said Ms. Russell, who noted that Jackson, a kindergartner, is currently on the principal’s honor roll at his school.
Jackson, who is fascinated by birds and loves to draw, said it will be “cool” to see his mom participating in the world-famous race. He and his younger sister both plan to travel to Manhattan to see their mom cross the finish line at Tavern on the Green in Central Park. But he has already warned his mother that he “will be too busy bird watching to see her.”
As for Ms. Russell, she hopes that, one day in the future, running will be a pastime that she can share with both of her children. And she’s very excited about running in her first marathon.
“I want to run across that finish line for him and for every single mother that ever lay in bed at night and worried that her child was going to suffer, or be in pain, or that she didn’t know how to do this,” Ms. Russell said, “but then did [it] one step at a time. One mile at a time. This race really is a metaphor for me in so many ways.”
Ms. Russell has set up a special page on Facebook for those wishing to sponsor her run for Autism Speaks in the 2012 New York City Marathon. For more information, go to www.facebook.com/groups/359090727444285/.
