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Randy Ewart, left, and his 13-year-old son, Gabriel, who has autism (contributed photo)

With the closure of schools across Connecticut because of COVID-19, family routines have been shattered, but for none more so than those, like Randy Ewart and his wife, Michelle, who have a child with special needs.

Thirteen-year-old Gabriel Ewart of West Hartford has autism and has to be watched every second.

“He may get into something at any time, he’s self-injurious, he’s not potty-trained,” said his father. ”Sometimes he gets really happy and manic and runs around the house.”

And for children like Gabriel, the state’s promise this week of offering online learning or packets of work delivered home for school children has no meaning.

“For kids like mine, there really is no distance thing they can do,” Ewart said. “When the [state] talks about online learning, there’s not even a recognition or an acknowledgement of the kids like mine … I think we’re being totally marginalized and ignored.”

Life has become a constant tag team for the Ewarts who are juggling their own work with caring for Gabriel and two younger children as well.

“One of us is always on duty,” said Ewart earlier this week. “So we’re on day four. We are struggling already and we have two weeks more to go at least … For some families, this is just crushing.”

State Child Advocate Sarah Eagan voiced similar concerns, noting that for some students with certain learning disabilities it may be possible that they could learn using small group instruction online.

“But what about kids who are more profoundly disabled, who receive a lot of hands-on instruction?” she asked. “Kids who need one-to-one support – I don’t know yet how they are going to do that.”

Education Commissioner Miguel Cardona, who instructed superintendents to embark on distance learning programs using online and printed educational resources, issued a statement Tuesday saying that his department is working to ensure that students with disabilities have access to the same educational opportunities as the general school population during the school closures.

Peter Yazbak, spokesman for the department, said Wednesday he expects to have more guidance for districts on how to do this within a week.

As part of an effort to draw state officials’ attention to their situation, Barbara Distinti, president of Special Education Equity For Kids of Connecticut, wrote a letter to Cardona this week that was signed by dozens of parents and advocates calling on him to issue “binding instructions” to school districts on providing special education during the period of closure.

“A school closure can inflict a level of damage to these students which can never be effectively remediated,” the letter said. “Indeed, the impact of closures on students with disabilities will be far more profound than the impact on other students.”

According to information issued by the U.S. Department of Education, if a school district provides “educational opportunities to the general population during a school closure, the school must ensure that students with disabilities also have equal access to the same opportunities.”

Andrew Feinstein, a New London-based special education attorney and one of those who signed the letter to Cardona, said the districts need to have meetings with parents of special needs children to plan a program for them and to determine if appropriate educational services can be provided to each student. And, he said, if it’s not possible, the state needs to provide them with a compensatory education once the schools are reopened, possibly during the summer.

“I think that’s the pretty straight forward bottom line,” Feinstein said. “Fundamentally, the most important thing we’re really seeking is that there be some state policy on this. There’s no uniformity. Districts are doing widely variant things and parents are understandably freaked out about this.”

Beyond the difficulty of the situation for parents, is the strain on other children in a family.

Randy Ewart said Gabriel’s meltdowns can be frightening for his younger sister.

“Think of a child having the biggest meltdown, writhing on the floor, and screaming and kicking,” said Ewart. “And, you know, he does that almost every day.”

Ewart said his son’s school, which is run by the Capitol Region Education Council, is excellent and provides Gabriel with one-on-one and sometimes two-on-one coverage.

“They have him doing adaptive skills,” said Ewart. “Unloading the dishwasher, folding clothes … just mastering behavior.”

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Darlene Borré, right, rides her bike behind her son, Ben, on his big three-wheeler (contributed photo)

Darlene Borré, also a West Hartford parent, said her son, Ben, 18, who also has autism, is already nervous about his change in routine.

She said that Ben is unable to stay with anything – for instance a video game or an online learning program – for any length of time.

She said her pediatrician has told her that the energy needed to care for Ben is equal to “the effort needed to take care of 18-month-old triplets with no naps.”

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Ben Borré (contributed photo)

“He’s smart and he is loving, but when he is not engaged with something, he gets very nervous,” said Borré. “So he will start self-injurious behavior. Last night we were trying to calm him down so he wouldn’t hit himself in the face. It was scary.”

She said she hears a lot about the state setting up online distance learning, “but none of that would apply to my son.”

He has been attending Meliora Academy in Meriden where he has been learning daily living activities with the goal of having him able to work in a group.

“So, he really can’t do that virtual learning type of thing,” she said.

Borré said she can “cobble something together” for Ben for the next two weeks, but if the closures go on and on, she doesn’t know what she will do. She just got a new job and is working remotely from home. “We don’t have enough caregivers to take care of him,” she said.

“The plan can’t be: Parents of special needs kids, you now need to become the teachers because that’s not what is happening with everyone else,” Borré said. “We are going to have to come up with something.”

Gennie Busse, who also works out of her home in Granby, has three children with various disabilities, including her youngest, Philip, 7, who has Down syndrome and autism.

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Philip Busse, 7 has Down syndrome and autism (contributed photo)

“Since he was 4-months old, he has never been without services for more than two weeks,” Busse said. “I can’t even fathom what eight weeks will look like.”

She said that screen time won’t work for any of her kids – the two older ones are dealing with attentional disorders.

Her children’s school did send home paper packets of work for the kids to do during the next week, she said, but her particular concern is with the other services they need.

“Speech therapy, occupational therapy, physical therapy, social and emotional support, visits with a psychologist,” she said. “It’s those pieces that are very concerning.”

Kathleen Megan is an award-winning longtime journalist who worked for the Hartford Courant and the Connecticut Mirror. She can be reached by .

EDITOR’S NOTE: This story has been updated to reflect the Department of Education’s plan to have updated special education guidance within a week rather than by today.