In a Class of Their Own

By Laura Albanese | lilife@newsday.com

Jennifer Zwilling stands in front of a classroom packed to the brim with eagle-eyed elementary school students and asks the one thing that would terrify most teenagers to know: "Do you see anything that maybe I'm doing that looks a little different?"

The hands shoot up in a flurry, and the answers come in almost just as fast: You're blinking your eyes, you twitch your nose, you move your leg sometimes. Zwilling, 16 years old, takes it in stride and continues her lesson: People with Tourette syndrome, she explains throughout, are just like you. They can stand in front of a classroom and have a conversation; they go to school, have friends and, she adds as a caveat, are not contagious.

Zwilling, though, is unlike most people, but not because of any disorder. Her tics -- and they are seldom -- would likely be closer to undetectable if someone didn't know to look. Hiding her condition, she admitted, was an attractive prospect when she was about to hit her teen years, but instead, Zwilling, now 18, chose the path of disclosure.

She didn't do it halfway, either. The video of Zwilling teaching the class is available on the Web -- meant as a teaching tool for speakers in her Tourette Syndrome Youth Ambassador program. Zwilling, who was 12 when she approached the Tourette Syndrome Association with her idea of peers educating peers, has seen the program begin to flower into a multinational initiative to teach understanding and awareness in schools.

And Zwilling, now a senior at Jericho High School, isn't alone in her achievements or her initiative. Her classmate Justin Resnick has had a different approach and a different cause, but similar success.

The Benefits of Basketball

Where Zwilling went global, Resnick was intent on focusing on the local. After his cousin was diagnosed with autism a year and a half ago before reaching the age of 2, Resnick, who had previously looked after two autistic children as a camp counselor at Miss Debbie's Work of Heart in South Huntington, sprang into action. Lending his services to Autism Speaks, the nation's leading autism-related nonprofit, was the most obvious choice, he said, but not the one he was most comfortable with.

"Justin said, 'You know, I feel like with these big things I'm not going to make a difference,'" said Peter Resnick, Justin's father.

"I wasn't going to see the effect," Justin added.

His mission brought him to Google, and Goog le brought him to Ascent: A School for Individuals with Autism, a private school in Deer Park that had for years scrambled for cash just to keep its doors open. In a coincidence, the president, Al Eskanazy, had been a former associate of Peter Resnick, and soon Justin, Peter and his wife, Lauren, a speech pathologist who has worked extensively with autistic children, made the trip to Ascent.

What Justin Resnick saw there would prove to motivate him for months to come.

"The children Justin had seen in the camp were higher functioning," said Lauren Resnick, who ran the camp as part of Up Wee Grow, which specializes in speech therapy and special education. "These were children that weren't really speaking.

They're not even able to put their clothes on or brush their teeth."

Added Justin: "I literally don't think I spoke the entire time that I was there. It was unbelievable. After that, I was like, 'This is what we have to raise the money for.' It was obvious."

And Resnick, an Emory University-bound varsity basketball player, had just the thing. He would convince the school to hold a charity basketball event, find sponsors, make up fliers and charge admission. It would be held at Jericho's four pristine basketball courts, and all the money would go to Ascent. It was a lofty goal, to be sure, and the technical and legal quandaries gave the school pause, but Resnick was ready for the challenge.

He made a PowerPoint presentation, petitioned the administration and started a committee to organize the event. Jericho, though, remained hesitant. There was the issue of liability and timing. Resnick countered: Roslyn High School was interested, and he could take the event elsewhere if necessary. Jericho finally agreed, and nearly eight months after the original idea, "Ally-Oop for Autism" was on.

The first event, held on April 21, 2007, raised $101,000. By then, Jericho and Roslyn were hugely enthusiastic and supportive. The same event was held a year later on March 29 with both schools on board. It raised about $108,000.

"We had no idea" that it would be that successful, said Dr. Nancy Shamow, Ascent's executive director. "We were all amazed. It was wonderful."

The Ascent school teaches up to 24 students, ranging from 3 to 21 years old, and it depends on donations and fundraising for the bulk of its operational costs. Though it does get limited support from the state, parents often find themselves having to raise from $800,000 to $1 million a year just to keep the doors open. This allows for a one-to-one teacher-student ratio, which is all but necessary for severely autistic children trying to make strides, said Joel Levine, whose son, Jamie, attends the school.

Twenty-one children currently attend the school, he said, and the state will provide for only a small portion of the teachers and aides necessary. "If the20state gives us, say, eight teachers, nothing is accomplished," he said. "They're basically going to have to be babysitters."

As for Resnick, Levine said he is forever grateful. After attending Ascent for six years, Jamie, 11, has made significant strides, learning how to tie his shoes and grasping some basic personal hygiene. And funding, especially recently, has been a challenge.

"Our numbers are down, and it's been harder every year to have to go to the same well," Levine said. "Justin has been a godsend."

It's a Personal Investment

When Jennifer Zwilling goes to the store, she makes sure the Doritos bags are facing right side out. Face of the Youth Ambassador Program or not, few people want their likenesses staring back at them while grocery shopping. As the winner of the BRICK Award, a national honor bestowed to 12 teens by Do Something, a nonprofit that focuses on youth in community service, Zwilling has had her face stamped on the back of Doritos bags from coast to coast. The chip-maker sponsors the awards.

Her current wish, she said, is for the new winners to be announced and a new face to be printed.

Not that she isn't grateful. Any positive exposure for the Tourette Syndrome Associati on is a good thing, and she's certainly done her part. Recently, Zwilling took a trip to Washington, D.C., and spent three days training 18 teens on how to deliver the association's message to schools from New York City to New Zealand. Currently, 15 states and four countries have been visited by youth ambassadors, including England, Canada and South Africa. She's also helped raise $100,000 to fund the seminar, one of the program's biggest accomplishments.

The big project, though, had grass-roots beginnings. Zwilling was diagnosed with Tourette at age 7 and spent the first few years being misunderstood by classmates and teachers. Five years after the diagnosis, she approached Judit Ungar, president of the Long Island chapter of the TSA, with the idea for the program. It was a big step: Zwilling was active with the association and often spoke candidly with classmates, but she was intimidated by the idea of increased publicity.

"I remember The New York Times did an article, and the reporter asked me, 'How did you get involved?' and I didn't want to say I had Tourette's," Zwilling said. "I told her I had a relative who had it."

Ungar recalled Zwilling's co ming in with the idea, and although Zwilling may have been hesitant, Ungar saw nothing but fearlessness. "She's not afraid to talk to anyone or ask questions," Ungar said. "I was very impressed [that she was doing this] at the age of 12. I think children when encouraged are really people that you should listen to. They cut to the core of the matter."

Zwilling created a curriculum and soon began traveling from school to school, sometimes out of the country, to educate students. She's made presentations to more than 50 schools and has trained 100 ambassadors.

She's gone down to Washington to lobby six or seven times for Tourette-related bills. Two years ago, she helped seal a victory with the inclusion of Tourette syndrome in the Individuals with Disabilities Education Act, which means that students with the disorder can get special services, like periodic breaks or seating in front of the room. She also lobbied for the Genetic Information Nondiscrimination Act, passed this April, which bans genetic discrimination in health insurance and employment.

Zwilling, who will be attending Duke University on a full ride as a Robertson scholar, will remain active with the TSA, but she said she'll assume more of an administrative role once she's in college.

"It's the most exciting thing," Zwilling said. The seminar "really took the program to the next level ... It's so great knowing that I'll have such amazing people reporting in to me."

Whatever she does, she'll have a cheerleader in Ungar.

"I can see her as the first woman president," Ungar said. "She really has no inhibitions, and she can talk to anyone. She's already a change agent, and she'll be able to touch people and do things."

In that, Resnick and Zwilling are similar. He too, has mustered up a considerable fan base in his philanthropic work.

Doctors reversed their diagnosis this year on Resnick's cousin , which is extremely rare, but Resnick plans to continue the event in the future. Shamow remains flabbergasted at his concern.

"To have someone that's not even related to autism do this," she began, trailing off. "Why do people like that do what they do? He's extraordinary."


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