For months, little Jordi thrived.
Although Covid-19 had prompted shutdowns in Los Angeles this March, the five-year-old, who has severe autism, was able to receive behavioral therapy at home. Meanwhile, Jordi’s parents were working from home, so he was around them all day. In June, after safety protocols were in place, Jordi resumed speech and physical therapy at an early-intervention clinic. These therapies were through their private insurance.
“I’d never seen this kid blossom so much,” his mother, Carla Suarez-Capdet, told the Guardian.
That changed when Jordi started remote learning at kindergarten.
“Fast forward to August: we log on for virtual learning,” Suarez-Capdet recalled. “All of a sudden, Jordi is like, ‘why am I logging into Zoom four times a day … [seeing] all these squares’” with people in them.
“He started injuring himself again,” Suarez-Capdet said of Jordi, who is now six. “Banging his head on the ground, pulling his hair out … He was regressing to pre-early intervention behavior.
“Kids with special needs and kids with IEPs [individualized education programs], they can’t access anything virtually, because it’s very hard for them to focus,” she said, saying there had been a “lack of support” from the Los Angeles unified school district.
Suarez-Capdet’s concerns are far from unique.
While parents around the US are grappling with dramatic changes to schooling – such as shifts to all-remote or hybrid instruction – those who have children with special needs must adapt to far more than juggling their Zoom work meetings with homework help. Many have had to take on the jobs of highly specialized educators and therapists; many have spent hours and hours trying to navigate a labyrinthine system to find assistance.
New Jersey resident Henry Tejada, who has two autistic sons, saw a dramatic shift in their behavior shortly after schools went all-virtual in March. “They’re used to going to a place, to getting out of the house,” Tejada said.
“The main thing is they’re always structured, everything is by time … with remote learning, it was not,” explained Tejada, who works at Span Parent Advocacy Network, an organization that helps New Jersey families with special needs children find resources.
Tejada said his 13-year-old son, Carlos, is non-verbal while his 11-year-old son, Ricky, is verbal. “I had to manage both worlds,” said Tejada, referring to two sets of educational needs.
“My non-verbal son would get upset and I’d try to figure out why he gets upset. His main thing was, ‘I want to get out of the house’, because that’s what he was normally used to – see other people, experience other things. His world basically shut down.”
Tejada and his sons stayed inside because of Covid-19. This meant that he couldn’t walk with Carlos, which is what educators at school did to calm him down. While Tejada understands about 80% of what Carlos wants, as his son uses an iPad or book to communicate with pictures, it was hard for Tejada to explain why they couldn’t go outside.
Ricky initially did fine with remote instruction, completing three worksheets every day. “Then, once he started asking, ‘why can’t I go back to school,’ he didn’t want to do anything unless he went to school – ‘I’m not doing this, it’s not fair, I should be going to school.”
By the fourth month, Tejada said, “He just outright stopped doing it. He was upset.”
Carlos and Ricky have been doing far better since September, after in-person classes resumed several days a week. But, Tejada is concerned: spurred by an increase in Covid-19, his city is planning school shutdowns later this month.
Some parents of students with special needs have had more positive experiences despite the challenges.
In the Bronx borough in New York City, Grisel Cardona, a single mother, described at-home learning with three children as “a little stressful”, but better than she expected.
Cardona’s 10-year-old son has autism and her eight-year-old daughter has special needs. Before the pandemic hit, Cardona’s now three-year-old son was doing an in-person early intervention program for feeding therapy, because he struggled with chewing anything large.
Her older son now has a tablet, so he can do live-instruction. “The teacher’s on with him for a little over 30 minutes, just doing work activities, and they kind of stretch it out at the end of the session, just to loosen them up a bit,” she said. “I’m super grateful for that – it’s hard to not be with your schoolmates in person.”
Cardona has also kept up with the feeding therapy remotely, following the instructor’s guidance, trying to teach him to chew properly, using the proper movements to tone his mouth muscles. Like Tejada, however, she recognized the limitations of not being a professional.
“We still do it online. I usually get his little snacks and you know, we try to work on it. I do exactly what they ask me to. Again I’m not a professional at it, and with them guiding me correctly, I’m able to do the best that I can,” she said.
Back in Los Angeles, Suarez-Capdet continues fighting for her son and advocating for other families. She says that her family is “blessed” to have insurance that covers many services, as most families in the district don’t have access to this level of coverage. This forces them to rely on a system that she characterized as a patchwork, rife with barriers to access.
The Los Angeles unified school district is now offering some access to in-person services for special education students, including one-on-one tutoring and group instruction with up to three students. Earlier this month, special education professionals started conducting assessments for students, the district said.
Suarez-Capdet said there are caveats. With one-on-one tutoring, teachers have to volunteer to participate. When they were offered tutoring, Suarez-Capdet said she asked whether the tutors were certified to teach special education.
“They said, ‘oh, they don’t need to [be], because they’re just tutors’… because it’s a volunteer tutoring that parents can participate in, there’s no requirement legally.”
Suarez-Capdet said she declined the one-on-one because the teachers volunteering were from a pool who didn’t necessarily have training. It was also potentially the case that Jordi would have a different person every week.
“It’s a Band-Aid on a very, very large, hemorrhaging wound,” she said.