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A Close-Up on Autism

October 21, 2010 By:
Tula Batanchiev, JE Feature
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Robyn (left) and twin sister Kathryn

For the Neibauers of Philadelphia, Sesame Place is synonymous with miracles.

On Mother's Day of 2008, after a fun-filled day at the park in Langhorne, Holly and David were putting their daughter, Robyn, to bed in the room she shares with her twin sister. With a zoo of pillow pets surrounding her, Robyn -- then 6 --snuggled into her mother's arms.

"Mommy, I love you," she whispered for the first time, her face barely visible under the glow of the night light. Holly began to cry.

Robyn, diagnosed with autism at the age of 2, had had difficulty with speech, and Holly instructed Robyn's therapist not to teach her those words; she wanted her to say them on her own.

"It was amazing," said Neibauer, 39. A typical parent, she said, might have taken it for granted.

When the Jewish family was selected through an application process earlier this year to be one of 20 families represented in the documentary "The United States of Autism," they recommended Sesame Place as their filming location, given their history with it.

On July 24, Robyn and Kathryn, her twin, swam in the Lazy River, met four of the "Sesame Street" characters on a private tour, and traveled back to their home where they were interviewed by producer Richard Everts -- co-founder /vice president of technology and communications, the Tommy Foundation of Lancaster, which focuses on families facing autism -- and his three-person crew.

"It was my favorite," said Robyn, who said she is proud of her autism. "Autism shows you that you're special."

Journey to Understand
The documentary tells the Neibauers story alongside other diverse American families to spread awareness of autism -- a bioneurological developmental disability affecting social interaction, communication skills, and cognitive function in roughly one out of 110 U.S. children.

Everts, whose 11-year-old son is on the autism spectrum, narrates the film on his journey to better understand his child.

Everts said he found the family's story inspiring, specifically the mother's career adjustment. A former English professor, she now works as an applied behavior-analysis therapist with children who have autism.

Her husband, David, a high school chemistry teacher, was himself recently diagnosed with Asperger's, an autism spectrum disorder.

"If anything, it made me feel a little closer to her," he said of Robyn. "She's a little clone of me anyway."

"The thing I really liked about the Neibauers," said Everts, "is that they are a really loving family."

'It Is Not an Ending'
The family said they were thrilled to be included.

"I wanted to show the world that autism is not ugly. Autism is not an ending," said Neibauer. "There's a lot of hope for children, and I wanted my daughter to see how much she'd accomplished."

The Neibauers plan to take a limo to the scheduled spring or summer film premiere.

Robyn and her family have come a long way in the six years since her diagnosis. For a child who had limited speech when she started her intensive therapy, Robyn slowly began to talk and flew through the curriculum.

"I was worried I would never hear my daughter's voice or communicate with her," said David, 40. "But it's been kind of a blessing."

Although David and Holly decided to hold Robyn back one year in school, putting her a year behind her sister, they have never regretted that decision. Robyn is now an honors student at Philadelphia Academy Charter School in a typical second-grade classroom with a one-on-one shadow.

Diana Discher, one of Robyn's therapists at Elwyn's Special Education for Early Developmental Success program, formed a special bond with the 8-year-old.

"She taught me just as much as I taught her," said Discher, 27, who worked with Robyn from 2005 to 2008.

Discher sees the girls at least once a month on "buddy days," taking them to Sesame Place, Chuck E. Cheese or bowling.

It's hard now for Discher to imagine a time when Robyn had limited speech. Originally, they would go through exercises to make her ask questions.

"We created an interviewer," said Discher.

What Robyn talks about most, though, is injustice, specifically with regard to slaves, dictators and the poor. When she grows up, she wants to be a world leader or a toy inventor; either way, she wants to help others.

Autism "is not who she is, it's a part of who she is," said her mother. "She has autism, she loves chocolate, she likes to be outside. It's just another facet of her."

And while the marriages of those around the Neibauers have fallen apart, Robyn's diagnosis has helped the couple become closer, say the two. Indeed, David and Holly have known each other since second grade and started dating in high school.

Although they admit to having their share of disagreements, they deeply care for one another and their daughters. David often dances with his girls in the dining room, and has "cuddle time" with Robyn and Kathryn each night, he said.

As with most siblings, rivalry sometimes exists between the twins. Their parents try to make everything as equal as possible, spending alone time with both of their daughters.

The girls, however, enjoy one another's company most of all, choosing to sleep in the same bedroom and play together. Holly remembers taking the girls to the playground this past summer when the sprinklers were on. The girls ran, hand in hand, through the water.

When Kathryn found out about the movie, her parents said that she was happy for her sister. "I think she's a great little girl," said Kathryn, who loves fashion and straightening her hair, perhaps one of the biggest differences between the two. "I think it's a great opportunity for Robyn."

Watching their children grow, Holly and David noted that they feel blessed for every smile, every hug, every "I love you."

Although Holly remembers crying in the doctor's office when she first heard Robyn's diagnosis, she can't help but feel happy today.

"The word 'autism' went from being a four-letter word," said Holly, "to one of the most beautiful words I've ever heard." 

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