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Mar 12, 2018 1:31 PMPublication: The East Hampton Press

Embracing Students With Autism: School Officials Talk About The Need To Take Care Of Their Own

Amanda McKelvey, left, is the Special Class Primary 1 teacher at John Marshall Elementary School in East Hampton, and works with fellow teacher, Alixandra MacMahon, to educate children on the autism spectrum. KYRIL BROMLEY
Mar 13, 2018 2:41 PM

This is part of an ongoing series of articles that will explore the challenges of raising and educating children on the autism spectrum, the particular obstacles faced by local schools and families, and the efforts they’ve made.

Six years ago, when Jodi and Scott Mesnick were preparing to move to Sag Harbor from their New York City home with their 2-year-old son, Ryder, one of the first items on their priority list was taking a tour of Sag Harbor Elementary School. The school had recently committed to starting a special class that would cater to developmentally disabled children who were not equipped to participate in a typical classroom—and it was exactly the setting the Mesnicks were seeking for their son.

Ryder, now 7, has autism and microcephaly, a neurological condition that is the result of abnormal brain development in the womb, resulting in a smaller than normal head size, and leading to several developmental issues.

The challenge of educating children like Ryder often leads parents to seek out a special school or center that can cater directly to their needs. The Mesnicks wanted to avoid that, for a specific reason.

“I had talked about how important it was to us that he is part of the community,” Ms. Mesnick said in a recent interview. “I didn’t want him to be bused off somewhere.”

During the time Ryder has been in the special class—sometimes referred to as a self-contained class—he has seen teachers come and go. But Ms. Mesnick says the experience has remained overwhelmingly positive for her son, and she’s been encouraged by the progress he’s made.

Her enthusiastic endorsement of the school district’s program stands in direct contrast to the opinions of other local parents of children with autism who feel just as strongly that local public schools are not providing—and simply cannot provide—the type of educational setting and resources their children need to thrive.

It’s been a hot and emotional topic of debate for some time, inflamed in recent years by the 2015 closing of the Child Development Center of the Hamptons, a Wainscott-based school that educated special needs children. The building is owned by CDCH but sits on land it leases from East Hampton Town for $1 per year, beginning in 2002.

The CDCH board wanted to assign the lease to the Gersh Academy, a private school for students with autism, but the town rejected the assignment of the lease to Gersh because it said it could not lease the space to a for-profit entity.

The closing of CDCH meant the loss of choice for parents of developmentally disabled and autistic children, in an area that already experiences a dearth of services because of its relative geographic isolation—the closest private school catering to children with autism is in Medford, some 35 miles west of Southampton.

While several parents were either vocal advocates for Gersh or simply eager to see that space filled by some entity that can serve their children, local school administrators and officials feel they have taken steps in recent years to provide what these children need in their own communities, and they point to parents like Ms. Mesnick as proof of their efforts. They firmly believe that inclusion with typical peers, rather than placement in a specialty school, is the way forward.

All Together Now

There is a fierce debate among parents and educators about the merits of inclusion in a typical public school setting versus the specialization that schools like the Gersh Academy can offer for children with autism.

There seems to be general agreement that for children in the middle or in the high-functioning range of the spectrum, the benefits of engaging with typically functioning peers as often as possible is overwhelmingly beneficial. The battle lines are drawn, however, when it comes to children on the lower end of the spectrum, who are likely not verbal and may have significant disruptive behaviors, as well as other emotional and physical challenges or other disorders.

The way children with autism—and all students with disabilities, for that matter—are educated can vary widely, depending on their specific needs. That is why students have individualized education plans, or IEPs, that result from committee meetings with teachers, special education directors, parents and other involved parties each year.

Several local school superintendents, including East Hampton Superintendent Rich Burns, publicly voiced their opposition to the Gersh Academy when the issue was before the Town Board. Mr. Burns and East Hampton’s director of pupil personnel services, Cindy Allentuck, are fierce defenders of their school’s special education services, and strong advocates of the inclusion model. They say that, by and large, their relationships with the parents of those children are positive.

Schools are required, by New York State guidelines, to place students in the “least restrictive environment,” meaning that, whenever feasible, inclusion in typical classroom settings should be the goal.

Schools report information to the state about how they educate that student population. Sag Harbor, for instance, has 91 students with disabilities in kindergarten through 12th grade who spend 80 percent or more of their time in regular classrooms; 15 who are in regular classrooms 40 to 79 percent of their time; two who are inside regular classrooms less than 40 percent of the time; and seven who are listed as “in separate settings outside of regular school facilities,” which could mean sending them to BOCES or even having services provided in a home setting. In total, 79 percent of the students with disabilities in the Sag Harbor School District spend 80 percent or more of their time in regular classrooms, a fraction of which are classified as requiring the special interventions of autism.

Parents who were proponents for the Gersh Academy say they believe the opposition of superintendents to the school had to do with money, claiming perhaps schools did not want to pay the tuition rates—in excess of $50,000 per year at Gersh—and fees for other necessary services if parents choose to send their children there instead of the public school.

But Mr. Burns countered that argument, saying cost is not a factor when it comes to providing an appropriate education for a child, and contending that what the district spends to educate the students in-house is probably comparable. Rather, he said, it boils down to philosophy.

“I don’t understand the benefit of being in a classroom with kids of the same behavioral difficulties,” Mr. Burns said. “How does that student have a role model? It’s like a separate nation. I truly understand that parents are expecting the promise of services that are tailored to the student. We do that here.”

Mr. Burns said that while a few special needs students in the East Hampton district are transported to BOCES in Westhampton for services, it is never meant to be the final destination. “We’re expecting that child to, hopefully, come back,” he said.

Mr. Burns and Ms. Allentuck say it’s “all about personnel,” saying they’ve worked hard over the years to make sure they employ teachers who have the right training and skills to help children with developmental delays and autism, pointing out that they’ve hired teachers with training in applied behavior analysis, the preferred educational method for autistic children.

Barbara Bekermus is the director of pupil personnel services in the Sag Harbor School District, and shares the same philosophy as Mr. Burns and Ms. Allentuck. In 2015, she helped start the special class that Ryder is part of, when she saw that there were several students entering kindergarten who would benefit from the self-contained classroom format, which she set up as an 8-1-1—a maximum of eight students with one teacher and one teacher’s aide, although more teachers are typically present since several of the students also have one-to-one aides as well.

Prior to the start of the program, students in the district who needed to be in that kind of setting were sent to another local school by bus. Now, not only does Sag Harbor educate those children in-house, it also can take in children from other districts whose own schools may not have that type of classroom.

“Having these kids in the school is a gift,” Ms. Bekermus said. “And they’ve been a gift to the community. People will tell me now, I didn’t know so-and-so had a sister or brother, because they were sent on the bus to a different school. They live in the community—this is their home, and these are the people who will support them.”

A Complicated Rise

Trying to determine the degree to which autism is on the rise can be tricky. Ms. Bekermus pointed out that there is a gray area when it comes to classification for some students.

Autism is a spectrum disorder, meaning it can present in vastly different ways, and there’s no medical test to prove its presence. Some children are classified as being on the spectrum, for the purpose of qualifying for services and educational opportunities. But that doesn’t mean they’ve been given a medical diagnosis.

Administrators agree on one thing, however—awareness has certainly increased. And that could be why the number of children identified with autism is rising as well.

“There’s been an increase [in autism], but I think we’re better at identifying it,” said Ms. Bekermus, who has worked in the district for 24 years. “Maybe it’s not that we have so many more kids with autism, but we’re more educated in terms of recognizing it. It’s those children that we used to think were a little quirky or had some emotional disturbances or learning disabilities with ADHD.”

Ms. Allentuck took it a step further, saying she’s seen an increase in—and, perhaps, better recognition of—the number of students with disabilities more generally.

“We’re seeing more presentations across the board,” she said. “Increased behaviors with kids with ADHD, emotional disability. In general, kids are experiencing more problems. So we’ve evolved our behavioral strategies, trying to figure out how we can address it with a more widespread behavioral approach, how to be positive. More kids these days are struggling with emotional problems. That’s why there’s a huge mental health initiative.”

Ms. Allentuck, who is a social worker by training, agrees with Ms. Bekermus that increased awareness explains a lot of the rise in autism classification, but added that there is an increase in understanding the complexities of various disorders as well. “There’s a lot more co-morbidity,” she said.

One Step At A Time

Administrators like Mr. Burns, Ms. Allentuck and Ms. Bekermus say they are happy with the progress their districts have made in the effort to provide educational services for children on the spectrum, and children like Ryder Mesnick are proof that those efforts are bearing fruit.

But they admit that being located on the East End of Long Island can present challenges for parents seeking services for their children, and the hurdle of geography is something Ms. Mesnick says has played a role, among other factors, in her family’s recent decision to move back to a more urban locale. The Mesnicks are moving to Phoenix, Arizona, next month and Ms. Mesnick said she believes being in a city again will present better chances for her son going forward.

“There are multiple schools there for kids with special needs, but because he had a positive experience,” she said of Sag Harbor Elementary School, “we’re going to start in a public school.”

And while her preference is to find another situation like their current one, she wouldn’t rule out a specialized school: “If we find that the program doesn’t meet his needs, then we’d explore that.”

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What a disservice this article is to those of us parents who have children with Actual Severe Autism. It is so self serving of the districts to paint this picture of perfect programs. While there may be many students with mild to moderate delays doing well in 8:1:1 school placements, there are still many who are not. My child is one example. The districts are not equipped to educate him. He has severe needs and is not progressing. BOCES is not a viable placement for him. He needs a true ABA program, ...more
By HamptonsAutismMom (1), Sag Harbor on Mar 13, 18 10:21 AM
It is unfortunate that Ms. Bekermus and Rich Burns are unenlightened about Autism and the leaps and bounds it has made in the past years.Please do some research about genetic testing for autistic related disorders before making statements.
There is a huge misconception across the board about what parent's are fighting for. Parents of severely autistic non verbal children are looking for a specialized school that can provide an ABA based educational program so that their child can have a chance ...more
By GRICE (2), WaterMill on Mar 13, 18 1:55 PM
The schools claim to emphasize inclusion. Lets be clear that currently, the lower functioning children are bussed to Alternatives in Southampton and BOCES in Westhampton. And those among them who are actually attending district schools are in their own classroom, separated from the rest of the student body. In all of these settings, these children are not getting the intensive, highly qualified therapy they need to progress and become functional.

If the school districts really cared for ...more
By jane rogers (4), sag harbor on Mar 13, 18 5:45 PM
2 members liked this comment
All this talk about inclusion and how important it is and how much better self contained classes are doesn't seem to trickle down to the kids that are actually going through the experience. If anyone takes a look at an East End School Curriculum for these students they are severely lacking in utilizing components that are evidence based. Most services provided are geared toward typical students and most are not ABA based I had to take my child out of the local district because the life skills ...more
By bob surfer (8), Hampton Bays on Mar 14, 18 10:16 AM
1 member liked this comment
Yes so true A case in point in Sag Harbor we have a superintendent who would rather spend her time planning new administrative offices in the former Stela Maris building then spend time on developing and improving a program for special kids. After all let's remove ourselves as far away as we can from the school setting and build new offices over a gym floor which would be a direct benefit to the children and the community . The Sag Harbor program is clearly lacking and failing the students it's ...more
By harbor man (41), sag harbor on Mar 14, 18 2:53 PM
1 member liked this comment
Jodi Mesnick's "Enthusiastic endorsement" of Sag Harbor's special needs program comes as something of a surprise. Particularly as she was happy to sign the latest letter from special needs parents to the school board which complained vociferously about the current, dysfunctional state of affairs in which "Goals are not being met, training is not being done.......and we are at a loss". How nice of her, on the way out of town, in search of "Better services for her son", to tell the rest of us that ...more
By beowulf (1), sag harbor on Mar 14, 18 5:23 PM
1 member liked this comment
please advise name of school for autism in Medford NY for further information
By mcicio (1), sag harbor on Mar 17, 18 10:24 AM