Raising awareness for autism

BY Christopher Lang, Northern Valley Suburbanite, May 7, 2015

Suzette Josif had a life-changing moment 12 years ago.

“We are all faced with challenges everyday,” said the Tenafly resident.

Her challenge? Something that affects 1 in nearly 90 children.

Melanie is Josif’s and her husband’s first child. When she was 1 year old, the couple had concerns about Melanie’s development.

At 2 years old, doctors in New York diagnosed Melanie with autism.

“It was right around Thanksgiving,” Josif said, remembering the news like it was yesterday.

The couple, with a young child and a second one on the way, had been living in London for five years.

Josif was working for Fitch Ratings and her husband was working as a consultant.

By that Tuesday, the two had quit their jobs and were moving back to the New York area for her daughter.

“I could not believe that this was real, and so beyond my control,” Josif said.

Josif and her husband have since become advocates of sorts for children with autism and other special needs.

Once again, she is a co-chair of the annual Rubin Run on May 10, which raises tens of thousands of dollars for the Kaplen JCC on the Palisades’ Guttenberg Center for Special Services.

And this year, she is bringing an unusual attire to race.

Josif entered a team called Tutus Take Tenafly. The goal is to raise money to fund special needs nights out for children. Each team member will compete in the race wearing a tutu.

Last year, Josif’s Rubin Run team helped to raise money to fund a model apartment program to help teach individuals with special needs daily living skills. The initiative evolved into a life skills program now offered at the JCC.

Shelley Levy, the director of the Guttenberg Center for Special Services, said with money raised at the run in May they hope to expand on the model apartment program.

“The last couple of years, we’ve been working on creating a simulated real life apartment so we can help them become more independent in their daily living skills,” Levy said. “We are hoping to provide more community outings for teens.”

Three days, that’s it

Autism is a range of neurodevelopment disorders that can cause social impairments, communication difficulties as well as other impacts on behavior.

According to the Centers for Disease Control and Prevention, by age 8, 1 in 88 children will have a form of Autism.

“It’s horrible … it’s absolutely horrible,” said Josif remembering her feelings when learning about Melanie’s diagnoses. “She is my first child.”

But, Josif would not let the diagnoses bring her down.

“I gave myself about three days to pull myself up and said, ‘Let’s go, we got a lot of work to do,’” she said.

Melanie is now 14 years old. She attends the Alpine Learning Group in Paramus.

“Raising a child with Autism is a challenge just from the teaching perspective,” said Josif.

A lot of time is spent doing repetitive work to help develop motor and cognitive skills.

“It really does take a village,” she said. “We have been so fortunate, so fortunate with Melanie and the quality of the programs that she has been in and she is in now.”

There are different methods, according to health experts, to work with individuals who are autistic. For instance, behavioral training and management is designed to use positive reinforcement, self-help and social skills training to help improve behavior and communication.

“Every single day we are working with Melanie and she continues to improve,” Josif said. But as Melanie gets older, Josif sees new challenges – teenage challenges.

“There are different challenges every step of the way,” she said.

Josif now finds herself trying to let Melanie and others just be kids. Through the Tutus Take Tenafly team, Josif hopes to raise enough money to sponsor nights out for teens with special needs so they can feel like any other adolescent who is their age.

“The truth is that a lot kids with these special needs are perfectly happy staying home, watching TV, playing their devices, using their iWhatevers,” said Josif. “That’s not life, that’s not living. It’s being passive.”

The nights-out program, Josif said, would allow these children to have a plan when it comes to the weekend.

Josif encourages her children to have a plan. And encourages Melanie to have one as well.

“This will help fund an evening program for individuals with special needs, so come Saturday night they’re going to the movies, or they’re going bowling or they’re going to a dance,” she said, through a “supervised arrangement.”

“These kids are just like any other child,” she said. “They need to be out, be about and have fun. And the more you expose them to it, I think the more they’re going to learn to enjoy it and the more they’re going to look for it and ask for it.”

So far, Tutus Take Tenafly pledges have nearly reached $5,000, which will help start the program at the JCC.

A special place

The Guttenberg Center is designed to work with individuals who have special needs. Its core belief is that “all individuals are entitled to participate in appropriate social, recreational, cultural and educational experiences whenever possible in natural community settings with appropriate supports.”

“In general, every JCC provides services for those with special needs,” said Levy. “We have embraced the concept of fairness and access for all.”

Having arrived from London with her world quickly changing, Josif found comfort at the facility.

At the time, the couple was living in New York City, searching for a home in suburbia. During that search, Josif saw the JCC’s sign. Her next move would result in a bond that remains today.

“I called the JCC. And I spoke to Shelley Levy, who is the director of special services here,” Josif said. “And Shelley Levy was helping me even before I was a resident of New Jersey.”

With a house under construction, life was hectic. The Josif’s wanted to find a safe place for her daughter.

“Shelley had the JCC bus picking my daughter up in Manhattan,” said Josif, “and bringing her to the JCC on the Palisades before I was even a resident.”

“I would do that for anybody,” said Levy. “They are part of the community.” A source of “pride,” Levy said, is that the special services department “tries to embodied what a true community center should be.”

For some people, like Josif, it’s comfort. For others, Levy notes, it’s making use of the wide-range of programs offered to help individuals with special needs live their lives.

“We provide programs for children through adulthood with special needs,” said Levy.

And through money raised by the Rubin Run, aside from programs, the center also provides scholarships to families who are in need of the funds to attend the programs at the center.

“This place is just an unbelievable place for my daughter. She’s a person you could look right through, walk right by her. And she’s not going to be offended, she’s not going to be upset. She may not even notice,” said Josif. “But, the people at the JCC they stop her, they greet her, they ask her about her day. It’s that type of attention, care, concern, everything, it’s just a very, very special place.”

Now in its 34th year, the Rubin Run continues to attract hundreds of participants who support the special needs programs provided at the JCC. Last year, those supporters raised $150,000. The event has a half-marathon, 10K and 5K run/walk, as well as activities for families.

Talking to Josif, it’s easy to tell she is full of life, and whatever roadblocks come her way she is ready for the challenge.

“I choose to be happy,” she said.

Email: lang@northjersey.com