A Fight For More: The Challenge Of Educating Children With Autism, From The Parents' Perspective

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Publication: The East Hampton Press
By Cailin Riley   Feb 19, 2018 11:10 AM
Feb 20, 2018 3:15 PM

This is the first in a 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.

Before he reached his 7th birthday, Jack McSweeney had been a student in three different schools, even though he has lived in the same town since birth.

The 9-year-old Sag Harbor resident, who has autism, spent his nursery school and prekindergarten years at the Child Development Center of the Hamptons, a school in Wainscott that served children with special needs until it closed in 2016.

For kindergarten, Jack was sent to school in Center Moriches, more than 35 miles from his home, because his mother, Erica Remkus, did not think CDCH’s kindergarten program would suit his needs, and because Sag Harbor Elementary School did not have an appropriate program for him at the time.

Jack spent two years in Center Moriches before Sag Harbor Elementary School started its own program, meaning the district would no longer pay for him to attend school out of district. It was another change, but initially a positive one: Ms. Remkus says her son made great progress with his teacher in a self-contained classroom with other special needs students.

A year and a half later, that teacher left—and, according to Ms. Remkus, it hasn’t been the same since.

“He’s going backward now,” she said of Jack, the youngest of her three children. “He has a lot more behaviors now. It’s hard, because he’s a guinea pig, and it’s difficult when it’s his only chance. He’s getting older, and there’s a very small window. When they’re young, that’s the only time you’re really able to make some gains.

“And I’m stuck watching everything he gained unravel.”

Not Enough

Ms. Remkus is one of many parents of autistic children on the East End who say they are frustrated with what they see as an extreme dearth of appropriate educational opportunities for their children.

In addition to devoting extra time and energy to simple tasks that parents of typically functioning children can take for granted, these parents say they are forced to spend an inordinate amount of time fighting tooth and nail both for services that their children desperately need—and are not easy to come by, for a variety of reasons—and for answers from school officials and local government when it comes to their roles in helping provide those services.

When parents heard that the Gersh Academy, a private, for-profit school that specializes in educating children with autism, was interested in leasing the CDCH building, which sits on land owned by East Hampton Town, many of them thought their prayers had been answered.

But their hopes were struck down in December, when East Hampton Town rejected Gersh’s proposal, saying leasing the building to a for-profit institution would be a departure from the nonprofit nature of the lease. Earlier in December, the superintendents from East Hampton, Springs, Bridgehampton and Montauk had asked the Town Board to reject the proposal, saying the programs their school districts currently offer for developmentally disabled students are sufficient.

The administrators added that the Gersh Academy would cost taxpayers tens of thousands of dollars, because school districts would have to pay tuition rates—around $55,000 per year—for any of their students who enrolled there, and that Gersh could potentially charge more for other services and therapies.

The disconnect between parents and administrators is clear, and it is stark—school officials insist they are equipped to educate children with autism and autism-related spectrum disorders; the parents insist they are not. Many parents also resent that school officials are telling them that the districts are prepared to handle children whom they, as parents, know better than anyone.

Three local families spoke earlier this month about their struggles to secure appropriate education and services. Their children, all boys, range in age from 3 to 9, and they have siblings as well. Their backgrounds vary, as do the specific needs of the children, but the parents expressed similar sentiments: disappointment with what local schools have to offer; frustration at the difficulty of finding specialists and therapists who are willing to make the drive east; anger at the fact that a building specifically designated to serve special needs children has sat empty for nearly two years.

They also share a resolve to continue advocating for their children at all costs.

A Constant Fight

Water Mill resident Genie Egerton-Warburton is a particularly outspoken advocate for more services, and was a big proponent of allowing Gersh to take over the lease.

Her 5-year-old son, Rowland, has ADNP, a rare genetic autism-related disorder. She describes him as a “wonderful, uniquely brilliant little boy,” and speaks calmly and clearly about his challenges, but with a steel edge of determination in her voice.

Like many parents of autistic children, she converses with encyclopedic knowledge about the disorder, treatments, statistics, school policies and research, with abbreviations and numbers pouring forth. Heartwrenching stories are told with unflinching honesty, and sometimes presented almost matter-of-factly so as to get straight to the heart of the matter: what the child needs, the fight to secure it, and why it matters.

Despite her strong belief that a school specifically devoted to educating children on the autism spectrum is the only viable solution to help East End families, Ms. Egerton-Warburton had good things to say about the Southampton School District. She said she is grateful to the district for helping her and her husband, James Egerton-Warburton, create a home-based program, predicated on applied behavior analysis, or ABA, that she says is currently meeting her son’s needs.

But she knows that, eventually, Rowland will need to be in a setting where he can socialize with other children—and she believes he could not make that transition without first being in an ABA-based school, like Gersh.

“I don’t think there’s a huge understanding about what it’s like to have a child with severe autism,” Ms. Egerton-Warburton said. “And schools are not equipped to deal with that type of student.”

Rowland is part of a blended family of five children, and the challenges he’s faced in his early years have been daunting. For five years, he has slept like a newborn baby, his mother said, waking up constantly, frequently thrashing in his crib or falling out of bed—one time resulting in stitches in his chin. Communication is limited to pointing and occasional words, typically drawn out when he’s working one on one with an ABA specialist.

Ms. Egerton-Warburton says Rowland simply could not succeed in a typical school setting, and believes a specialized school is the answer.

‘This Is The Medicine’

Parents of children who are on the low-functioning end of the autism spectrum are passionate advocates for ABA, an intensive, time-consuming therapy that focuses on principles of positive reinforcement. It’s the only therapy endorsed by the U.S. Surgeon General as effective in treating autism, and its efficacy has been touted by research and other studies for decades.

Many parents say there is a lack of ABA-based therapy locally, and they believe that even in places that have ABA-certified teachers and therapists, the expertise and experience is not extensive enough. Many schools that cater specifically to students with autism, like Gersh, on the other hand, focus heavily on ABA-based therapies.

Sag Harbor residents Julian Barrowcliffe and his wife, Elizabeth Rogers, are the parents of 3-year-old (soon to be 4) Olin Barrowcliffe, who has autism and other health issues. Like Ms. Egerton-Warburton, they have publicly voiced their concerns and are enthusiastic proponents of ABA, which they say has helped their son “know his place in the world.” He participates in a home-based program, where he sees several different therapists over the course of an average day.

Like Rowland, Olin—who has a fraternal twin brother, Wells, and a 12-year-old brother, Miles—has had difficulty sleeping and also suffers from respiratory issues that landed him in the ICU a few months ago. Mr. Barrowcliffe initially was counseled to send Olin to Alternatives, a Southampton preschool that offers early intervention and education for special needs children, but chose not to after realizing that the school, which is the only one on the East End that offers services for developmentally disabled children, does not have an ABA program.

“That means they don’t have an autism program,” Mr. Barrowcliffe said, adding that he believes sending autistic children to schools that don’t offer ABA is “ludicrous.”

Mr. Barrowcliffe and Ms. Rogers believe that the reason local school districts were against the Gersh Academy, or any other school, coming to the area boils down to finances—essentially, that districts don’t want to pay private school tuition rates to send a child to a special school.

Mr. Barrowcliffe, who is originally from England, said he didn’t expect this experience as the parent of a special-needs child, especially after the living in New York City, where the twins were born, and being told that Olin would qualify for ABA therapy immediately after he was diagnosed.

“I thought that, in any developed nation, it just kind of went without saying that if you got dealt a tough hand and have a special needs kid, the system was there to open up a menu and tell you what was available to you,” he said. “The government is there to figure out the menu, but you’d like to think that the menu would be seriously helpful.”

Mr. Barrowcliffe and his wife say that the struggle to secure the services their son needs—and knowing many other local families are in the same situation, and perhaps even less equipped than they are to push for those services—has, in many ways, been more upsetting than the diagnosis of autism itself.

Ms. Rogers said she had to move past the point of hoping for a miracle for Olin and focus on fighting for him.

“I lived in a fantasy world, thinking maybe it would all go away, and he’s just going to talk one day and catch up, once his lungs get strong and he can walk better,” she said. “But, by this point, there is a rating scale for the qualities a child with autism has, and he ticks every box, and has from the minute he was diagnosed.

“It’s best not to hang on to that fantasy, and do the science that works for him. If a child is diabetic, you get them the medicine, you don’t deny the diabetes. And [ABA] is the medicine.”

Next: A look at the issue from the perspective of local school districts, and what their approach has been to educating autistic children in their communities.

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