Parents of teens with special needs find themselves alone in Covid-19 lockdown

Michele Williers’ son, Beck, 17, has a lot of questions for his parents these days. When can he go to summer camp? Can he go to school in the fall?

“He’s asking about it every day. And he doesn’t understand,” Williers said in an interview with CNN. “He understands people were sick and there’s a virus, but why isn’t something opening just yet? He’s counting on us, his parents, to develop a plan.”

Beck is visually and hearing-impaired, one of more than seven million students with special needs in the United States. Remote learning amid the pandemic has been hard for him, like so many.

Under the Individuals with Disabilities Education Act (IDEA), children and young adults are given special education and related services through the age of 21.

But the pandemic has physically separated students from some of the support system of teachers, therapists and aides just as those in the higher age bracket need to make critical decisions about their adult life. And that’s left parents flailing.

“We are amazing special needs parents,” Williers explained. “We’re not special needs teacher-certified.”

Beck’s teacher checked in every day and provided worksheets for him, Williers said, but it was too hard for him to concentrate in front of a screen, especially at home where he doesn’t typically wear his hearing aids and glasses. He no longer has his daily speech and occupational therapy from experts right next to him.

A fellow mother, Joanne De Simone, told CNN: “The responsibilities are even more extreme and exaggerated than they normally would be.” She added, “It’s tiring. There’s no respite.”

De Simone has two children with special needs — Sebastian, 17, is on the autism spectrum, and Ben, 21, has lissencephaly, which is a brain disorder. Ben’s condition puts him at an increased risk of serious complications if he contracts Covid-19 so his routines of in-person learning and therapeutic services are no longer feasible.

“Everyone says like, ‘Oh they’re falling off this cliff, right?’ Because they go from intense education services and related services and then they get pretty much a small fraction of that. And I’m like, Ben didn’t mosey on over to the cliff. He just got shoved and we’re falling,” De Simone said.

She has tried to engage him in online learning but he doesn’t focus well. She’s also tried to give him the therapy he needs but is understandably frustrated.

“I don’t have physical therapist hands. I don’t know what they’re feeling,” De Simone said of how she tries to get advice from her son’s therapist through FaceTime. “They are only seeing me through this tiny little camera. They don’t know if I’m doing the right thing.”

Her younger son Sebastian, a keen athlete, may also miss out.

“Before all this happened, we were actually looking at, like, special education college programs that are not matriculated but are sort of an alternative to a typical district 18-to-21 program,” De Simone said. “And now I’m not so sure, and he’s not so sure.”

“He wanted to look at colleges and wanted to run on college teams. Now, he’s like, maybe I’ll join a local running club to stay in the district,” she added.

The Department of Education is asking schools to continue to offer education to students with disabilities or special needs just as they teach students who don’t need the extra help.

Special education teacher Amy Swederski has tried to do just that, but she had to throw her usual lesson plan out the window.

Before the pandemic, she had 17 students in her high school class in Florida, aged from 14 to 21 and with conditions from autism to Down syndrome. She also had four aides and a job coach to assist her.

From full-day schooling, she’s cut her expectations for her students to require them to just to 30 minutes of math and reading daily.

“I didn’t want students to feel frustrated. I didn’t want parents to feel frustrated. I wanted them to be able to feel positive at home because this was such a change in routine, a change in their life,” Swederski said.

She organized two daily Zoom calls with her class and gave each individual step-by-step guides to access the online platform. But only seven of her 17 students showed up regularly.

Swederski said many were confused and upset by having to do schoolwork not in a school building, but at their homes.

“They were not comfortable with doing the digital aspect of things because when they got home, it wasn’t school anymore — it was home,” she said.

An ongoing worry for parents is what happens if in-person classes and therapy don’t open this fall.

“I don’t know, mentally and emotionally, if that happens, how we can continue to sustain,” Williers said.

Her son, Beck, needs the right environment to learn and thrive, she said.

“Our child needs school. He needs to be back with his friends. He needs his routine, his rigor, and he needs the people around him that know and do that extraordinarily well.”