Autism Speaks — In Westport And New York

Evan Stein is 43 years old. His family has lived in Westport for 44 years. He and 4 siblings went all through the Westport school system.

He graduated from Staples High School in 1992. At Harvard University — as the internet dawned — Evan and his friend Darin McKeever started StaplesAlumni.org. It faded away after 8 years — but still draws visitors to its pictures and stories.

The extended Stein family. Evan’s parents Steve and Linda are in the center.

After earning his MD and Ph.D at NYU, Evan married Jennifer Sherinsky. Daniel was born at 25 weeks. He died 4 weeks later. Evan documented his son’s short life on a blog.

Eighteen months later, Joshua was born. He was “awesome — perfect,” his proud dad says. He knew the English alphabet at 15 months, the Hebrew alphabet shortly after. He memorized phone numbers. He loved license plates, and wanted to know the floor you lived on so that 2 weeks later he could push the button for your floor.

He loved to stand by the computer and type. He got very excited when a computer game he was playing made a noise. Evan created a blog for him, and posted about him constantly on Facebook.

Even as a toddler, Josh Stein loved computers.

On frequent trips to Westport, Josh visited Earthplace, played at Mahackeno and swam at Compo.

In June 2010, Evan finished his fellowship. He and his son spent the summer wandering around New York and Westport. That fall — when Evan began work as a neuroradiologist — Josh started pre-school.

Two weeks in, Evan and Jennifer got a call to see the director.

She and the school psychologist thought Josh needed extra services to maintain his focus in class. He could not sit still, or keep his hands to himself. He could not do what the other kids were doing.

Evan and Jennifer Stein, with Josh (right) and Sam.

Evan shrugged off their concerns, but made an appointment at the NYU Child Study Center. During 3 days of testing. Evan thought Josh performed incredibly. “I couldn’t believe the questions he seemed to be answering — and he wasn’t even 3 yet!” his dad marvels.

“But it turns out those tests are kind of a trick,” Evan reports. “The questions and answers are important — but the doctor is watching other stuff.

“How well does he respond to his name? (Not at all). How well does he look in people’s eyes? (Not at all). Does he follow your gaze to see what you’re looking at? (Nope). Does he like to do the same task repetitively? (Yep.) How does he play with a car? Does he pretend it’s a race car? (No.) Does he spin the wheels. giggle or rock? (Yep.)”

That December, Josh was diagnosed with autism.

Evan was devastated. He and Jennifer wondered what would happen next.

The Steins thought about moving back to Westport. Evan called people he or his parents knew here with autistic children. Everyone was supportive and helpful.

Josh at Compo Beach.

They heard many stories about children being successfully mainstreamed in Westport’s schools. It seemed very inviting.

But every expert the parents talked to said that would not work for Josh. After a year in pre-school with a special education teacher by his side, then a year in a special education class with only 12 students, 2 teachers and a para-professional assigned to him, it was clear he needed a specialized school with an extremely low student-teacher ratio, and with very specific and directed teaching techniques.

The Steins pursued a program offering Applied Behavioral Analysis. There aren’t many available — and even fewer that don’t charge $150,000 a year.

In the summer of 2012, the Steins got ready to sink every penny they had into getting Josh the right school and after-school support.

Suddenly, an opportunity fell in their laps. The New York Child Learning Institute had an opening — and they wanted to meet Josh.

“We’ve been very fortunate that Josh found a spot there,” Evan says. “They’ve kept him on track with his academics, while also teaching him how to care for himself and act appropriately in the community.”

Every month, Josh’s teacher comes to the Steins’ home. She shows Evan and Jennifer the most effective parenting techniques.

Josh still comes to Westport almost every weekend. Like every kid in town he loves the beach, Earthplace, Stew Leonard’s and Shake Shack. He likes to walk behind the Levitt Pavilion, and check out the Main Street tunnel.

However, Evan says, NYCLI is in jeopardy. After 24 years, the lease is running out. The convent that owns the building plans to sell it. If the school can’t buy it themselves, the future is uncertain.

Evan set up a GoFundMe page, to help raise the $600,000 down payment. Westporter Celia Behar and her Lil’ Mamas blog have helped spread the word.

Evan hopes his Westport friends — and strangers — will respond. He’s also looking for creative solutions. If anyone knows real estate investors or financiers, you can contact him directly: steine01@gmail.com.

After a lifetime in Westport, he is sure his hometown can help.

10 responses to “Autism Speaks — In Westport And New York

  1. Joshua Stein

    Rad name!

  2. Thank you for this post, Dan! When we spoke, I hadn’t anticipated that seeing it on someone else’s page would make me cry.

  3. Thanks Dan

  4. Kaitlyn Witte (NYCLI Teacher)

    What an amazing article, I am in tears. Please help us save NYCLI. Thank you Stein family you are amazing! Love you Joshy!

  5. Hi Dan-

    First- THANK YOU!!

    I read your blog first thing every morning- either at home or as soon as I get to work. I indulge in some of the political debates, try to keep a civil tone and occasionally comment on the strange parking habits you highlight so well and so often- seen around Westport.

    This morning I read the article you posted about Josh’s school with a lump in my throat and tears in my eyes. Jenny and Evan have been incredibly strong and superhero steadfast in pursuing the best educational situations for Josh. Linda and I had it easy – having raised 5 kids in the Westport educational system. We just pushed the kids out in the morning and the school system took care of the rest (they became Staples swimmers and wrestlers, Math Club, Safe Rides, Chorus, etc and went on to become doctors, lawyers, teachers, caterers and a few indian chiefs)!!

    We are amazed at the time and energy required to get Josh into the “right” school. . Evan says- if you’ve seen one kid with autism- you’ve seen one kid with autism- they are all so very different while sharing the same diagnosis. They require very individualized learning environments suited to their very individual needs. Some kids are nonverbal, some very verbal, some have special skills and talents, some play guitar and some piano, some are gentle and some are upset- just like non challenged kids.

    NYCLI has been the perfect fit for Josh’s educational and social needs- he loves his school and his teachers. NYCLI builds on his strengths (an incredible memory for details, Lew Dite songs, Sesame Street episodes , jokes,and anything to do with numbers) and teaches him the social skills that he will need.

    NYCLI is at a crossroad- their lease is up, the building will be up for sale and the school will either have to move or possibly close. The school and the Steins are reaching out in every conceivable way for help- Evan set up a gofundme account (as you so nicely included). Everyone involved at the school is being approached for help. And Evan and NYCLI are looking for advice and help from anyone who has faced this type of situation and has thoughts on how to get funding or donations to save this fabulous resource for kids with autism.

    Again- thank you Dan for sharing this story with the 06880Dan Woog.com blogosphere. Where Westport meets the world and anything can happen as a result of sharing!!

    The Steins (Josh’s grandparents)

  6. Eric William Buchroeder SHS '70

    As the parent of a child with autism I can strongly empathize with the Steins. Having searched for the right therapeutic approach during the critical intervention years before age eight, I can say from experience that parents have to be their own patient advocate (as the Steins clearly realize) and that there are almost as many medical opinions relative to autism as there are autistic patients. Every situation is unique and often mainstreaming is dismissed as a strategy because the resources aren’t always there to accommodate it. I wish we still lived in Westport, nothing takes the place of exchanging support with others who share your misfortune and we are learning new things every day, it never stops.

  7. Thank you to everyone who has been generous today. Every little bit helps. And thanks also to those who have sent names of people I can reach out to.

    The campaign started on my birthday (July 26), at which time I asked for donations for my birthday. Don’t feel bad that you missed it, I accept belated birthday gifts as well.

    However, since my birthday only comes around once per year, I’ve decided to start a separate campaign (inspired by 06880) to convince everyone named Josh Stein, Josh, or Stein, to give $1 to $5. You are welcome to participate.

    If you donate any amount of money, you will get the NYCLI Newsletter next week.