When Parents Become Teachers and Therapists: Kids With Disabilities at Home During Covid
Editor’s note: This is the third in a series of articles about how Covid-19 is affecting people who are living with disability in our community. The Swarthmorean is publishing these pieces at the invitation of Immaculata University professor Kelly George of Wallingford, principal investigator on the project “Witnessing the Impact of Covid-19 in Disabled People’s Lives: A Web Archive and Community Newspaper Series.” The project is supported by a grant from Villanova University’s Waterhouse Family Institute for the Study of Communication and Society. By lifting up the personal stories of local community members and connecting these to systemic inequalities, the project shows how storytelling can be used to promote social justice.
Brielle Durnell (left) with her mother, Kim Durnell. Photo courtesy of Kim Durnell
When schools closed abruptly in March 2020, teachers and students across Pennsylvania scrambled to figure out the world of virtual teaching and learning. Many considered the remainder of the school year a complete loss. But for some families, education wasn’t the only thing lost in the transition.
For Helena Roberts and Brielle Durnell, two students with disabilities who live in the Wallingford-Swarthmore School District, school was also the way they received personalized health care and educational support services.
Helena, who lives in Rutledge, attends HMS School for Children with Cerebral Palsy, where she and the other 50 or so students get personal and nursing care throughout each 9-hour school day. She also accesses health services like physical and speech therapy at school. These services are nearly impossible to provide effectively online. At around 7 p.m. on the night of March 12, Helena’s parents, Carrie Sewell and Jody Roberts, got the email that HMS would be closing immediately. No one knew when the school would open again.
Helena Roberts studying plants for school. Photo courtesy of Jody Roberts
“It kind of threw our life into a tailspin because we didn’t have any other supports,” Sewell recalls. “You can’t just conjure home nursing services overnight.”
Trying to Manage
Pre-Covid, some families of children with cerebral palsy already had nursing services to help with daily tasks like dressing, feeding, and using the bathroom, but Sewell and Roberts didn’t. They had been caring for Helena themselves. When they finally realized that trying to manage nursing care full time in addition to their full-time jobs was impossible, it was already well into the 2020-21 school year.
Initially, though, they held off on hiring nurses out of concern for Helena’s health. Like many people with cerebral palsy, Helena is vulnerable to respiratory infections that can lead to weeks-long hospital stays. Sewell works at a hospital, which already made the family feel more exposed to Covid than they liked. Bringing a team of nurses into their home felt like an unnecessary risk.
After HMS School confirmed that they would be continuing online learning indefinitely, Sewell and Roberts received a call from the Wallingford-Swarthmore School District about putting supports in place for Helena. An Applied Behavior Analysis therapist was hired to help her engage with school over Zoom. For a while, Helena’s family thought this would be enough. But the lack of nursing support during the school day was still a problem. Eventually, they began the arduous process of acquiring nursing services.
A Full-Time Teacher Practically Overnight
Born with bilateral hearing loss, Brielle was in the fifth grade when the Wallingford-Swarthmore School District announced an initial one-day closure. When her daughter came home with all her schoolbooks, Brielle’s mother, Kim Durnell, was confused. “If it’s only one day, why are they sending you home with all your books?” she asked. Ultimately, the closure would last for months.
Late March and early April were a time of transition as students, teachers, and family members learned to navigate the world of online schooling. Before the pandemic, Durnell’s mother, Jean Terrell, was primarily responsible for Brielle after school until her parents came home from work. But Terrell developed medical problems and soon became unavailable.
Durnell was thankful that she was running her own business from home when everything shut down. She explains that her husband Sean is an essential worker at Comcast, troubleshooting and working on installation and home security. Together, they decided that Kim would take the lead supporting their daughter while schools were shuttered. This required Kim to become a full-time teacher practically overnight.
Helena Roberts working with friends and occupational therapists Megan Webb and Claire Shrader. Photo courtesy of Jody Roberts
Kim Durnell was also responsible for the non-educational supports Brielle generally got at school, assisting the team of physical, speech, and occupational therapists Brielle now saw only over Zoom. Durnell had to look out for sensory triggers that were mentally disruptive to Brielle’s education and help her daughter stay on task and follow instructions. This occasionally meant initiating sensory breaks by giving Brielle a fidget spinner or a quick massage. At school, these tasks were carried out by a “one-on-one” — a school aide who shadowed Brielle throughout the day. After the shutdown, it was all up to Durnell.
“If she needs help, or when she needs redirection – and she does need redirection – it’s me,” says Durnell. While she appreciates the increased quality time the pandemic allowed her to spend with her family, being her daughter’s support — in addition to managing her mother’s healthcare — has made it difficult to sort through issues about employment and finances. “I feel like I have to work from home because I need to be there when she has questions,” Durnell says.
In Helena’s case, the family not only had to take the lead with her physical, occupational, and speech therapy, they also had to become programmers in order to maintain her communication device. For kids whose families could not manage such tasks, these therapies were essentially shut down along with in-person schooling back in March 2020.
Even with involved parents, online therapy is often less than ideal. Sewell recalls one particular session in which Helena’s therapist showed a video of how to eat Lucky Charms with chopsticks. “I don’t know how that counts as rec therapy, but she thought it was funny,” Sewell says, remembering Helena’s response. “I guess that’s something.”
Pros and Cons
Given the struggles Helena and her family faced when school went online, they were more than ready for the hybrid plan HMS introduced in April 2021. Helena had been asking to go back to school for months. When her parents inquired what she was most excited about, she quickly replied (via her communication device) “friends.”
“You could tell — by the speed at which she was working to say that — that she’s clearly thought about this,” Roberts says. Concerned that Helena’s mental health had been wavering last spring, her parents had thought about it too. The hybrid plan, they say, was vital to maintaining Helena’s overall health, both physical and mental.
Helena Roberts attending school over Zoom. Photo courtesy of Jody Roberts
Brielle, too, has missed the social aspects of attending school in person. The timing of the pandemic shutdown forced her to miss out on a traditional graduation from fifth grade and all the goodbyes that come with it. Starting the 2020-21 school year online meant that Brielle didn’t get to experience the transition to a normal sixth-grade year at Strath Haven Middle School. “She’s very social,” Durnell says. “She’s missing meeting new friends.”
Still, taking classes online and doing schoolwork in a secluded space has made it easier for Brielle to hear her teachers. At home, she can more easily adjust the frequencies of her cochlear implants when she needs to. Online school also minimizes the need for her teachers or classmates to wear masks, and masks disrupt Brielle’s ability to read lips.
Indeed, the mask issue makes both Brielle and her parents wary about the upcoming school year, which the district has announced will be in person full time. Reading lips gives Brielle cues to help her comprehend things she might not process otherwise.
Ongoing Advocacy
Durnell predicts she will have to advocate that the school use clear masks that don’t disrupt lip reading. “I feel like people kind of neglect to think about people with hearing loss,” she says.
The feeling of having their needs neglected is common for families with children who are disabled. Many say these feelings intensified as the Covid-19 pandemic exacerbated many of the inequalities between families with and without disabled students.
Helena’s family says that they love Swarthmore, but they note that the town isn’t very accessible for Helena and her power wheelchair. Accessibility is a constant battle. They express hope that the expansion of online services and events doesn’t become an excuse for businesses and institutions to avoid making physical spaces and venues accessible.
Sewell stresses that children with disabilities need to be included in conversations about all aspects of school, from pandemic closures to reopening procedures and beyond. Too often, she says, students with disabilities have been an “invisible group of kids.”
