'Our kids had been forgotten': Parents of special education kids hope for summer school

Parents of children with special needs discuss challenges of virtual learning during the pandemic and the need for in-person services. Rockland/Westchester Journal News

THORNWOOD, N.Y. – When Diane Segel started a petition urging Gov. Andrew Cuomo to allow in-person extended summer school, she was at her wits' end.

Since mid-March, after schools shut down amid the coronavirus pandemic, Segel struggled to function as a teacher, speech therapist, occupational therapist and physical therapist for her 3½-year-old son William, who has developmental delays.

While most children across the country transitioned into the routine of virtual learning, for those with special needs – who get a variety of in-person services – online learning has not been an effective option.

Diane Segel and her 3-year-old son William with special needs play with the sandbox toys as her 1-year-old son Charlie and husband Will Segel look on at home in Thornwood, N.Y. She started a petition to open up an extended school year for kids with special needs and over 25,000 people have signed it. She's been struggling over the last three months as online education doesn't work for her son and feels that he needs his in-person services to continue to develop. (Photo: Tania Savayan/The Journal News)

"You're talking about kids who are already developmentally delayed, who have lost three months of services," Segel said. "That's huge. If we lose the whole summer, you're talking about six months."

Her petition garnered more than 15,000 signatures in less than a week and was up to almost double that number around the time Cuomo signed an executive order giving the green light to in-person special education classes June 5. 

Though many parents of school-age children feel ill-equipped to handle the new role of teaching their kids, parents of children with special needs said they felt especially inadequate to help theirs, some of whom started self-harming out of frustration. 

"You cannot put a computer screen in front of most kids with special needs," Segel said. "I actually opted out of two of the three therapies on the second week because of blood-curdling cries and screams every time he saw the screen coming out."

'It's been hell': Parents struggle with distance learning for their kids with disabilities

New York's extended summer school for kids with special needs typically runs eight weeks. Depending on the severity of the disability, services can include speech therapy, interpreting services, mobility services, psychological services, occupational and physical therapy, counseling and therapeutic recreation.

Most classrooms have six to eight children, and parents said it should be easy to maintain social distancing and open programs safely.

The news that their children will receive help over the summer has been a lifeline for parents, many of whom juggle teaching roles and full-time jobs. 

From our partner:Helpful items to help home-school a student with special needs

Cuomo said classes "may" open if they follow safety protocols. Parents fear that the lack of a definitive "must" might give schools the leeway against offering in-person classes if they decide they aren't ready.

Shelly Guzman, whose 6-year-old daughter, Faith, is severely autistic and nonverbal, does not feel out of the woods.

Shelly Guzman has been taking care of her daughter Faith's needs in their Washingtonville, N.Y., home since the Jesse Kaplan School in West Nyack closed because of the COVID-19 pandemic. (Photo: John Meore/The Journal News)

"The executive order is not very clear and has left a loophole in letting the schools decide if they are ready or not," she said. "There might be teachers or therapists who may not want to return over the summer. I hope that this executive order will meet the needs of these children and they will provide the in-person services that they so desperately need and that is mandated in the IEP (individualized education plan)."

Jay Worona, deputy executive director and general counsel for the New York State School Boards Association, told The Journal News in Westchester County that districts were taken by surprise by the order.

To provide in-school services, some districts would have to scramble to put summer staff together and figure out how to pay for staff, transportation and other costs.

"I would think a lot of districts might not be able to make this happen," Worona said.

Guzman, who is from Washingtonville, New York, worked two jobs as a dental assistant before the pandemic but lost one position last week when she couldn't return to work while caring for her child. Guzman is worried she'll lose her other job soon if there is no clear plan.

Shelly Guzman worked two jobs as a dental assistant before the pandemic but lost a position when she couldn't return to work while caring for her daughter Faith. She worries she could lose the other job if there's no summer plan for students with special needs. "What am I supposed to do with my job? How am I supposed to feed my family? How am I supposed to pay my bills?" she says. (Photo: John Meore/The Journal News)

"What am I supposed to do with my job? How am I supposed to feed my family? How am I supposed to pay my bills?" she said. "Mentally, it is taking such a toll on me."

She said she was thankful to Segel for starting the petition and for all the work parents and political leaders across the state did to get the governor's attention.

"I was so frustrated about how our kids had been forgotten. It should really have been an essential service," she said. "Then the news came about the summer camps opening, the beaches opening, the day cares opening, and we just wanted our voices heard because our kids are suffering."

Alex and Sarah Kooluris, who live in Amawalk, N.Y., with their children AJ, 11, and Holden, 9, say AJ, who is autistic and nonverbal, regressed over the past two months of home-schooling without his in-person therapies. (Photo: Tania Savayan/The Journal News)

Sarah Kooluris, whose 11-year-old son, AJ, is nonverbal and has severe developmental delays, said he lost the three words he had learned over the course of his schooling – hi, bye and mom.

"They weren't perfectly crystal clear, but they were emerging words; they're all gone now," said Kooluris, who lives in Amawalk, New York. "So even though he is essentially nonverbal, he was making several word approximations that have stopped.

"This is the longest he's ever gone without services since he was 16 months old. The regression is severe. The skills that he had that took him years to gain, such as self- hygiene, basic math, are now gone."

Kooluris said it's been frustrating to be a taskmaster to her son. 

"I'm wearing a million different hats in a very scary environment," she said. "I should be somebody that he comes to for comfort, not somebody that he's running from because I am doing all this work with him – and then probably not even doing it correctly – because I don't know how to do any of it."

Kooluris said her son has become so confused and frustrated that he started to self-harm, biting his arms out of frustration "because he doesn't understand what's going on."

Even though there is still so much unknown in terms of the guidelines, she was relieved by the idea that her son could get a semblance of normalcy back.

"Given how much my son has struggled and then to know that now, he's going to get back to his normal way of life or as close as possible, it just makes my heart so full," Kooluris said. "And for the first time, since this started, we all slept through the night."

Ana Paisley says that without in-person services and a structured school setting she feels her 7-year-old son, Elijah, who has developmental delays, hasn't been able to flourish. She's concerned about his regression. (Photo: Tania Savayan/The Journal News)

Although Ana Paisley of Stony Point, New York, was not sure about sending her developmentally delayed son Elijah, 7, to school amid her fears of contracting the virus, she said the governor's directive has been reassuring.

"My husband and I have decided that it is best for Elijah," she said. "Structure is very important for children with special needs to avoid regressing further."

Diane Segel, who lives in Thornwood, N.Y., with her husband, Will, and their sons William, 3, right, and Charlie, 1, says that although the governor's action is a step in the right direction, the coming days will be crucial. "It has been a huge relief, but without clarity, we are not out of the dark yet," she says. (Photo: Tania Savayan/The Journal News)

For Segel, although the governor's action is a step in the right direction, the coming days will be crucial.

"It has been a huge relief, but without clarity, we are not out of the dark yet," Segel said. "We want to make sure that if there are districts that are on the fence, that they understand the importance of our children's developmental needs and do everything in their power to develop a concrete plan."

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'Our kids had been forgotten': Parents of special education kids hope for summer school