Miles Dempsey, a nine-year-old Toronto boy living with cerebral palsy and epilepsy, was home for the past two weeks since a variant of COVID-19 was detected at his school. While he was stuck at home, his mother helped feed him and took him outside for walks.
He spent 30 minutes a day in a virtual classroom, which was about as much as he could handle.
His mother, Kate Wells, is concerned that a year of continuing interruptions to his schooling, such as this most recent one, would have long-lasting effects on Miles, who is also living with a developmental delay and is learning to speak and walk independently.
Miles attends the Beverley School in Toronto, a specialized school for children with developmental and physical disabilities. This year, about 50 students are attending in-person, and another 20 are learning remotely.
“Being out of school affects his mental well-being much worse than my other typical kids, who are able to engage virtually,” Ms. Wells said. “He just can’t. So for his days to be replicated and stimulated, it’s all on the parents. And then a lot just falls through the cracks.”
Educators are concerned about how student learning will be affected by the pandemic, but for families who have children with complex needs, there is an added layer of worry: With disruption to school and supports, their fear is that their children will also fall behind developmentally – if they haven’t already. Many have had no choice but to pull their immunocompromised children out of school this academic year, and struggle to provide them with some level of education.
In the last week of February, Beverley School principal Danjela Malobabic learned from Toronto Public Health that a student had tested positive for a variant of COVID-19. (Since then, there has been a second case of the virus at the school, which also had two other cases since the start of the academic year.) “It was one of those, ‘All right, where do we go now? How do we continue to keep our students and our families and our staff safe?’ ” she said. “Everything kicked into gear.”
Miles wasn’t in the class affected by the case, but because some staff move between rooms, the students in his class were also sent home for two weeks. Ms. Malobabic said there are up to six students in a classroom. This is the second time Miles has been sent home for two weeks since school resumed in the fall.
Ms. Malobabic said educators at Beverley are using different strategies to engage their students online, through stories and gross motor skills activities. However, given their unique needs, their students are often lost in a virtual setting and require direct face-to-face learning.
“We know how much they want to be here [at the school],” Ms. Malobabic said.
Jess Whitley, an associate professor in the faculty of education at the University of Ottawa, has been researching how families who have children with complex needs are coping during the pandemic. She said some have cried over the phone, and felt helpless as both schooling and supports were temporarily reduced or stripped away.
Academics was just one of their concerns, she said. Prof Whitley heard from families whose children’s speech and mobility therapies had been reduced during the pandemic, which they felt would affect their kids’ long-term trajectory.
“That terrifying sense of regression was something that was quite unique to the families of these kids,” she said.
Nicole Payette-Kyryluk, co-chair of the parent council at Beverley, kept her daughter, who has a neurodegenerative disorder, home from school this academic year. Her daughter is non-verbal, cannot walk, is hearing and visually impaired, and is fed through a G-tube. Ms. Payette-Kyryluk has taken a leave from work while her daughter is out of school.
It is difficult for her daughter to be away from Beverley, which is known for its safe and encouraging learning environment, but Ms. Payette-Kyryluk said she’s unable to return unless there is regular testing at the school and staff are prioritized for a vaccine – something she has been advocating for.
“She has been trapped in our home for quite a while. It’s just really difficult for her mentally,” she said. “She definitely misses everyone.”
The teachers at the school are working hard to support students online, she said. Her daughter participates in online music classes, but it’s not the same. “The virtual school that they have set up through the TDSB would never work for a child like my daughter,” Ms. Payette-Kyryluk notes.
Izabella Pruska-Oldenhof kept her son Lukas, 10, home for a few days when she learned of the first case at the school. She kept him home again this week after the second case emerged.
Lukas has been diagnosed with autism and has genetic epilepsy. He has been wearing a hockey helmet since April because his seizures got worse and the surgery for implants to help control them had been bumped because of COVID-19.
Ms. Pruska-Oldenhof said the disruption has been difficult, as Beverley in many ways is a lifeline for its students and their parents. The school supports families with learning, but also with physiotherapy, speech development, communication and helping children take care of themselves.
The impact on their regular school routine has been detrimental for many children, she said.
“There’s nothing worse than seeing your child regress, and not having the skills to help them.”
Miles returned to school on Friday after his two weeks away. His mother, Ms. Wells, said she was close to tears a few times as she tried to help him during his time at home. She worries that while educators at his school continue to wait for vaccinations, Miles and his classmates may be sent home again.
“My life is on hold.”
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