As her mom tells it, Sesame Street is Aubrey’s first and only love. Her affection for the program’s cast of puppets, for Elmo in particular, is so aggressive and pure that her parents have to restrict her access to it because she gets so wired after watching it she can’t function for days.
Aubrey, whose real name her parents asked be withheld to protect her privacy, is a 16-year-old student in Los Angeles. As a teenager living with autism, routine is the bedrock of her day. .
But in the days of a spiraling coronavirus crisis, predicting what comes next is all but impossible. “Think about how we are with uncertainty and multiply it by a million. For her not knowing is almost unbearable,” said her father, Pirouz Kavehpour.
Today, with 124,000 of the nation’s schools closed due to coronavirus, Kavehpour has joined the ranks of millions of parents turned into homeschool teachers overnight – no easy feat for any working parent, but especially challenging for parents whose children have disabilities.
It remains unclear when schools across the country will reopen; California officials already indicated they won’t restart this academic year and a handful of other states have closed doors until fall. And as classrooms pivot to online learning, many of the services guaranteed to the nation’s roughly 7 million children with disabilities have been effectively put on hold.
Federal law promises to give students educational services that address individual needs. But it’s unclear when children with disabilities will get the kind of face-to-face help they had been getting at school before.
Struggling for support
At school, a personal aid redirects Aubrey when she gets distracted and helps her manage emotions. A speech therapist works to improve her speech and draws her out of quiet isolation. An occupational therapist helps her keep her body calm so she doesn’t regress to rocking back and forth.
But in recent weeks, those tasks have fallen on Kavehpour, a professor of mechanical and aerospace engineering at UCLA.
Aubrey’s mother Faranak, who lives separately, has been quarantined at home after contracting coronavirus. She hasn’t been able to help, or even see her daughter, except through video calls. Under quarantine, she’s noticed Aubrey has seemed increasingly concerned about her mother’s health.
“She keeps saying, ‘Mommy, go to doctor.’”
As schools closed and officials turned out the schoolhouse lights, educators from New York to Washington were forced to overhaul education plans, with many leaning into technology such as Google Classroom to share assignments, or Zoom as a way to hold virtual office hours.
Those online classes may be broadly helpful for a traditional student, but Aubrey doesn’t work well independently, and Kavehpour said it’s become a herculean task to keep her on top of her homework – which, even under normal circumstances, might take a whole afternoon to coax her to do.
Owing to mixed signals from the federal government on how to proceed, in addition to concerns over liability for not being able to provide mandatory services, many school districts struggle to provide the support students like Aubrey will need in the months to come. The extent to which children and students with disabilities receive help may, for the moment, rely on the creativity of school district officials, teachers and parents.
As districts pivoted to online learning, education leaders turned to the US department of education, headed by education secretary Betsy DeVos, to know how to proceed on serving schools’ most vulnerable students.
That guidance was slow to arrive. And when it came, educators and advocates found the direction vague and contradictory.
As late as 16 March, guidance issued by federal education officials indicated that school districts don’t have to provide specialized services to students with disabilities if schools are closed for everyone – the idea being that all students are served equally if nobody is served at all.
“If a school district closes its schools and does not provide any educational services to the general student population, then a school would not be required to provide services to students with disabilities during that same period of time,” read a fact sheet from the education department’s office of civil rights.
Special education advocates fired back, arguing that the directives contradicted the Individuals with Disabilities Education Act, which promises that students with disabilities will have access to free education tailored to their needs.
“It is our view that this guidance was wrong,” said Miriam Rollin, an attorney and director of the Education Civil Rights Alliance. “There’s nothing in IDEA that says you’re absolved of responsibility for serving students with (disabilities) when schools close.”
Amid the backlash, the department shifted course, telling school districts they cannot keep schools closed to sidestep the mandate to serve all students.
“We remind schools they should not opt to close or decline to provide distance instruction, at the expense of students, to address matters pertaining to services for students with disabilities,” read the newer fact sheet issued on 21 March.
The new guidance clarified schools’ responsibilities, Rollin said, but the wait came with a cost. “Had the department just released guidance to begin with, it would have been easier. Unfortunately, schools lost precious time to plan and prepare,” she said.
Neither did the advice clear all uncertainties, including the question of how and when school districts make up the hours of help they owe children.
The US department of education did not immediately return requests for comment.
In California, officials wanted more assurance from the federal government they would be protected from lawsuits filed by parents whose children don’t get mandated special education services, something that’s happened after wildfires shut down schools in the past.
Meghann Hughes, a special education teacher in San Diego, said teachers in her network have been scrambling to share resources on how to best help students with disabilities in the absence of clear directives from officials.
“We’re just being very creative, jumping into the fire and calling for help from our colleagues” she said. She added that much of the chatter among the 10,000 members of a Facebook group for the California Teachers Association, one of the largest teachers unions in the country, has consisted of educators’ pinging each other frantic questions on how to move forward.
San Diego Unified, where Hughes teaches, is currently on spring break, but plans to resume online classes on 6 April, with special education services to resume 27 April.
But Hughes said teachers are still unclear about what will happen to the face-to-face services students with disabilities typically received.
“This is crisis teaching. This is incredibly traumatic. A lot of parents have been laid off, so those families are insecure, if they weren’t already. And I don’t know how we’re going to provide a lot of these services through the internet,” said Hughes.
For the moment, the official guidance for school districts boils down to making a good-faith effort to provide the education services students need.
“Nobody thinks that education in the realm of coronavirus is going to look the same as it did. Nobody thinks that. But you have to try, and that’s what they’re doing now,” Rollin said.
“The bottom line is: Do everything that you can, be creative, use all the tools in your toolbox.”
Dan Domenech, director of the American Association of School Administrators, whose members include school superintendents from around the nation, said he’s received the same message in phone calls with DeVos and vice-president Mike Pence.
“You can’t say 100% of kids will be served through online instruction, because it’s not possible,” Domenech said, adding that the nature of a contagious virus complicates matters. “Obviously, we’ve got a pandemic that we’re dealing with that prevents teachers going to students’ homes”, he said.
He’s advised school officials to document efforts to serve all students, taking note of whatever circumstances prevent them from doing so, and to make up the time owed students as soon as possible.
“It may result in lawsuits. It may result in not being in compliance. But the alternative is to do nothing. And that’s not an acceptable outcome,” Domenech said.
‘Flexibility is key’
In Los Angeles, Aubrey and her parents are adjusting to the new normal, finding ways to carve out structure while staying flexible enough to account for an unpredictable moment.
As it happens, the creators of Aubrey’s TV show have been huddling to create programming that helps children and parents strike the same balance.
“Flexibility is the key word,” said Rosemarie Truglio, vice president curriculum and content for Sesame Street. “All children do best with structure, but we also need to be flexible if plans go awry. Building resiliency is key. And that’s what this is all about. We don’t know how long this is going to last. We all have to be resilient.”
In that way, the advice isn’t much different than official education guidance for parents, teachers, and children.
As for Aubrey, she’d be thrilled to know she appeared in an article alongside leaders from Sesame Street, her father said. Since she’s last watched, Sesame Street has gotten a new character, Julia, who has autism, too.
But the jury is out on when Aubrey will be able to see Julia on screen for the first time. Her love for the show is simply too powerful for her own good.
“It may sound funny, but for her Sesame Street is like a narcotic,” said her mom. “It’s a complement to the show, but for her, it’s best to stay away completely.”