Tommy Day, an 18-year-old from West Seneca with autism, doesn't understand why he can't go to school.
The bus usually picks him up at 7:50 a.m. to go to Aspire of Western New York in Cheektowaga.
But now he's out of his routine. He's staying up at night and sleeping during the day. He doesn't like his writing assignments.
Tommy is among the thousands of students across the region who receive special education services for a range of disabilities while in the classroom – but are now suddenly going without.
They are the hardest hit since Covid-19 closed schools. And it’s taking a toll.
"I’ve been advocating and litigating special ed cases for 25 years," said Brenda Shepard, an advocate for families. "I’ve never been in a situation like this."
Parents and advocates describe cases of young children who had just started to speak who have been going silent since school shut down.
Those who were toilet trained are having relapses.
Behaviors that were under control are off the wall.
In normal times, schools are required under federal law to provide a “free and appropriate education” to students with disabilities. One in six students in Erie and Niagara counties – nearly 25,000 kids – receive special education services.
What that looks like depends on the individualized education program a school designs for each child. For some, it could mean having extra time to take a test or going to speech therapy. For others, it’s learning in a classroom with just five other kids. For a few, it’s attending a school for deaf students.
Virtually none of those things are possible during the school closures.
"It's tough, because they’re watching their kids regress in front of them," Shepard said.
Shepard, of Western New York Family Advocacy for Children's Education, was in the middle of helping families through several school hearings with strict timelines that were interrupted by school closings.
Special education encompasses a variety of needs, from kids with learning disabilities and speech impairments – which together account for more than 60% of special education students in New York – to emotional disturbances and cerebral palsy.
Kids with autism, like Tommy, now account for nearly 9% of special education students in the state, double the percentage from a decade ago.
Working full time from home with a job that requires her to be on the telephone for much of the day, Jeanne Day, a single mother, can't spend her days helping Tommy the way the experienced staff at Aspire can.
"He is trying. His mind doesn’t think the way other minds think," she said. "He’s bored and it's hard to occupy him."
Elizabeth Moore's strength lies in her social skills. She has a good sense of humor, but she can't read or write. The 17-year-old East Aurora girl attends Erie 2 BOCES in Holland, and goes to a respite program offered by People Inc. after school, while her mother works.
"Her strength is her ability to interact with other people. She's funny, that's her thing; it's being with people," said her mother, Sharon.
And now she can't interact with people outside her family. Elizabeth receives physical, occupational and speech therapy at BOCES, none of which she gets at home. And that leaves Moore, a single mother working from home, wondering, like many parents, if she could be a better parent if she wasn't working.
"How do you do that and not neglect your kid?" she said.
The U.S. Department of Education told schools in a March memo that while they are closed, schools “must ensure that, to the greatest extent possible, each student with a disability can be provided the special education and related services identified in the student’s individualized education program.”
But federal officials have also given schools a great deal of flexibility in figuring out how to do that during the closures. They have specifically encouraged schools to use “teletherapy.”
The adequacy of schools’ efforts to serve students with disabilities the past few weeks have varied greatly.
“Some districts are reaching out personally to parents. Some districts are using technology to provide support and accommodations for students,” said Susan Barlow, executive director of the Parent Network of Western New York. “And we have some districts that are not.”
'There's no way to really tell how he feels'
Coping with the school closures is hard enough for kids who are able to understand why they’re closed. It’s much harder for a child who can’t even understand the fact that they are closed.
Griffin Stinner, a fifth grader with autism, is essentially nonverbal. Every day while his family eats breakfast, he goes to put his shoes on.
“He says, ‘Bus, yes? School, yes?’ ” said his mother, Dawn Stinner. “I don’t know how to tell him.”
And there is so much that Griffin is unable to tell her.
“There’s no way to really tell how he feels,” said Stinner, who also has four other school-age children, including seventh grade triplets. “I can only tell by his behaviors. I can tell by the way that he paces or the videos he watches obsessively that he’s struggling with this change in routine.”
Usually, Griffin is in a classroom at Hoover Elementary in Kenmore-Tonawanda, along with seven other kids with autism who function at a second- or third-grade level.
His mother is able to work with him on his packet of schoolwork for 10 minutes at a time.
“All I can do is sit with him and just try my best to get across what they’re saying and what they’re trying to get across,” said Dawn, a preschool teacher and small business owner. “But I’m not trained to do that.”
They're managing, for now
Two of Mary Dickman’s six children have special needs, so the Buffalo mother took off from her job as a tax preparer this week to help them with their schoolwork.
Her 17-year-old, a senior, has attention-deficit/hyperactivity disorder and low-level autism; her 12-year-old, a seventh grader, also has ADHD and a variety of other issues.
“Even though they are special needs, they’re really smart and can do things on their own,” Dickman said. “Their problems are more self-direction and emotional needs and things like that.”
“Especially the 12-year-old,” she said. “He gets frustrated very easily. He will come up with a plan to do his work and he’ll sit down and he’ll get distracted and then he’ll get up and I have to sit him back down. If I’m sitting at the table with him and I’m there as an emotional support he can get through it.”
For now, Dickman is managing.
“I’m hoping I have their schedules down and everybody is in a comfortable position where they are caught up with their work and I could return to work next week,” Dickman said. “I don’t know if that’s going to happen, but I’m hoping.”