‘It’s labour intense. It’s emotional’: In Ontario, parents of children with developmental disabilities face back-to-school challenges

Ontario parents of children with developmental disabilities grapple with schooling decisions. Illustration: Amelia Rankine

Choosing between online and in-person schooling can be especially difficult for parents of children with developmental disabilities who are considering a return to the classroom during COVID-19.

Millions of Ontario parents were faced with a choice this August, when school boards announced that parents had to decide whether to enrol their children in online learning or send them back to school.

Sensory issues with mask-wearing, the need for movement within the classroom, and difficulty understanding germs and physical distancing are common characteristics among children with certain disabilities which could affect a parent’s decision to send their child to school.  

With the threat of school outbreaks looming and positive cases already appearing in Ontario schools, the fact that many children with developmental disabilities are more vulnerable to becoming ill makes the choice even harder for some parents.

However, some parents say their child wouldn’t learn effectively online, especially without the one-on-one support they receive from in-person school. Parents’ need to return to in-office work can also influence their decision to send their child back.

The Hechinger Report published an article in March about how children with disabilities were struggling to adjust to school closures. The article introduced Iolani, an 11-year-old with hydrocephalus, who talked about how much she missed her pre-COVID life.

“I miss it. I miss my teachers, my friends. I miss learning,” she told the publication.

This heightened uncertainty for many parents, furthered by a reported lack of government attention towards the educational requirements of children with special needs, is impacting whether children with developmental disabilities attend virtual or in-person school. 


Parents face a tough choice

When schools in Ottawa were shut down in March due to the COVID-19 outbreak, Joanne Small-Greenall, a parent of two children on the autism spectrum, said that she panicked.

“I cried when I first heard that the school was going to be closed after March break,” she said.

A survey conducted by Autism Ontario in July 2020 found that 45 per cent of caregivers for kids on the autism spectrum said they were dissatisfied with the educational experience provided during school closures in the spring. Autism Ontario is an organization that provides information about autism and advocates for people on the spectrum and their families, teachers, and caregivers.   

Caregivers reported the two most stressful aspects of the school closures in Ontario have been the extra work required to care for their children at home and the lost social, developmental, and academic opportunities.

Now, Small-Greenall feels she has no choice but to send her two kids, Jackson and Ferne, back to school in person this September. Currently, they attend the Crystal Bay Centre for Special Education, a 100-student school in Ottawa.

Both have visual and hearing impairments, behavioural challenges—such as self-injury and aggression—and need assistance with toileting and feeding.

“They’re super happy kids,” Small-Greenall said.

However, her children can’t learn through screens. Since much of their learning involves physical interaction, online classes can’t keep their attention. Both Small-Greenall and her husband work outside of their home and can’t afford to stay home with them.

“Am I nervous? Absolutely,” she said.

The fact that her children are part of a high-risk population for COVID-19 is part of the reason why.

Having a compromised immune system due to chronic health issues, nutritional deficiencies, and other factors is common among people with some developmental disabilities, such as Down syndrome and autism.

Alongside this, people who have difficulty communicating symptoms of illness or understanding preventative measures like physical distancing, handwashing, and mask-wearing may have a higher risk of becoming ill.

“I really worry about Jackson and Ferne. If they got COVID, would they be able to fight it off?” Small-Greenall said.

Ripudaman Minhas, a developmental pediatrician at St. Michael’s Hospital in Toronto, said having a developmental disability doesn’t automatically mean a child is immunocompromised, but that vulnerability can be defined in different ways.

“It depends on what their overall health status is,” Minhas said.

The main factor that contributes to the vulnerability of some children with developmental disabilities to COVID-19, according to Minhas, is the ability to comply with public health measures that can prevent illness.

“Compliance with some of those recommendations, which were really built for neurotypical individuals, can be really hard,” he said.

For Small-Greenall, knowing that Jackson and Ferne’s school would send her kids home with so much as a runny nose—a practise from even before the pandemic—reassured her that in-person school was the right decision for her.

“I am looking forward to getting back to some kind of normalcy, and having my kids go on the bus and go to school for a little bit of time every day,” she said. “And they need that. We all need it.”


Challenges to online and in-person learning   

Not all children with developmental disabilities will face the same changes to their education during COVID-19 measures. While Small-Greenall’s children attend a school for students with moderate to severe disabilities, children who have developmental disabilities that require less one-on-one assistance, and who attend mainstream classrooms, also face challenges to their learning.

Kate Logue is a parent of two kids who are on the autism spectrum, a six-year-old son and a ten-year-old daughter.

Her son won’t be attending school this year, since he attends therapy sessions four days a week. Logue currently plans to have her daughter attend in-person school after the month of September.

The decision was equally difficult for Logue, despite her ability and willingness to stay home with her children.

“It’s very difficult, between appointments and driving to different therapies,” she said. “My husband just works and I kind of tend to [the kids].”

Logue says her daughter does her best work at school when she can take body breaks and has an educational assistant sitting with her, scribing for her, and encouraging her to stay on track while she’s learning.

A body break, or sensory break, is a common therapeutic practice for children with autism, ADHD, or other conditions that affect attention or sensory integration. Caregivers and teachers can encourage children to take breaks to help with focus, anxiety, or emotional regulation.

One classroom setup allowed Logue’s daughter to wander from one desk to another to satisfy her need for a change of scenery and movement. Unfortunately, health and safety restrictions placed on many Ontario classrooms this year will prevent students from walking around or switching desks for body breaks.

Logue also wonders whether having an educational assistant sitting with her daughter to encourage her to keep working would be safe, due to a lack of physical distance.

Tara McNeely, an educational assistant in the Ottawa Catholic School Board, says students with learning disabilities at her school will have the one-on-one support they need.

“For our kids’ sake, we don’t have the luxury of not sitting next to them,” McNeely said. 

McNeely said the need for body breaks is common among the students she works with, and will be difficult to accommodate even through online learning. Getting up to move around during virtual class-time means a student might miss something the teacher says.

In an Aug. 17 email to families, Camille Williams-Taylor, the director of the Ottawa Carleton District School Board, said their survey showed 26.9 per cent of elementary students and 21.5 per cent of secondary students who responded were opting for online learning.

Not knowing how the school year will go is also stress-inducing for teachers like McNeely.

“I’m not really sure how it’s all going to play out, in terms of the online stuff,” she said. “But yeah, we’re nervous.”


A change in routine

The strangeness of back-to-school under pandemic conditions—no new lockers, staggered lunchtime, the threat of a shutdown—will be a reality for every student, but a change in routine can be harder to adjust to for some kids on the autism spectrum.

Jennifer Cobden is a teacher and former student of Astolot Educational Centre in Ottawa, a private school that accommodates students with different needs.

She says that if she was entering this school year as a student, it would take some getting used to. Now, as a teacher, she can see how students are capable of adapting. “It’s definitely a process, but they’re getting there,” she said. 

Logue said it will be “a real transition” for many children with developmental disabilities.

“It’s not going to be easy that they have to have lunch in their classrooms, for instance, if that’s something they didn’t do before,” she said.   

The parents interviewed by The Pigeon agreed that the lack of familiarity makes it more difficult for their kids to make friends and socialize. If Logue were to opt for online learning, her daughter would likely be among students she doesn’t know.

“It’s taken her years to develop a community of people around her and it’s still very difficult for her to have a typical friendship with other children,” Logue said.

“Let’s face it, you’re not making friends when you’re doing virtual classrooms,” she added. 

Small-Greenall agreed. “The kids also need social outlets. They’re already isolated,” she said. 

She says the beginning of the school year will be an adjustment period for her kids.

“They don’t really understand things the way a neurotypical person does, so when there’s no school, they’re like, ‘Uh, where’s my routine? Where is everything?’” she said.

“It might be really scary for them to go back and see everyone wearing masks. It might be really weird, I don’t know.”

Another challenge Small-Greenall has encountered is her son Jackson wanting to run up to strangers to socialize with them.

“You can imagine what a stranger would say in COVID-times, like ‘Oh, my God.’ And he’s like a big man now,” she said.    

Small-Greenall said it’s important for people to remember they are wearing masks to protect people like her children.


Sensory issues with mask-wearing

A spoken—and unspoken—understanding among parents of children who have developmental disabilities, Logue says, is that some people just can’t wear masks.

“All they know is, ‘[Masks don’t] feel good so I’m pulling it off,’ and they’re not able to understand, ‘No, but you have to [wear it],’” Logue said.

Logue says her 10-year-old daughter has kept a mask on for up to two hours without issue so far, but she is unsure whether she will be able to wear it for a six-hour day at school. Her younger son has even more difficulty with it.

“As soon as you even try and get it around one ear or just even putting it over his head, he’s immediately tearing it off,” Logue said. “There’s just no way.”

Logue says all kids with developmental disabilities are unique and experience the same thing differently. Not every child on the spectrum, or who has a developmental or learning disability, has difficulties wearing a mask or understanding physical distancing.

“Even among a common diagnosis like autism, every kid is going to be so different in terms of what they need,” she said.

Logue says the inability to wear masks is leading some parents to keep their children at home because they don’t feel they will be safe without masks. Despite not being told directly by schools to keep their children with disabilities home, some parents have felt uneasy.

“I’ve heard a few stories where some families have been reached out to from their children’s school with some underlying hints of, ‘We don’t feel like we’re going to have an easy go keeping your son safe.’”

McNeely says in her school, younger students will be separated into groups of kids who can wear masks, and those who can’t. This method of cohort grouping will also apply to students with developmental disabilities, to accommodate those who can’t or won’t wear a mask due to a disability.


Facing uncertainty and a lack of attention

The feelings of stress and uncertainty brought on by advocating for her children’s needs during the pandemic is not new for Logue.

“As a parent of a child with special needs, you’re constantly fighting,” she said. “It’s non-stop having to say, ‘Well, my child isn’t getting what they need.’” 

Logue says part of the stress is due to the lack of attention being paid to the education of children with developmental and learning disabilities—an existing problem the pandemic has only made more noticeable.

“There are so many questions and really not a lot of thought is going into children with special needs,” she said.

Small-Greenall said the pandemic has highlighted the needs of the most vulnerable groups of people, including those who are elderly, have underlying medical conditions, or have a disability that affects their immune system or their ability to protect themselves from getting sick. 

“You can see where the money needs to go, where there are cracks in the system, if you will.”  

Small-Greenall added that being able to sit down and do homework with your kids, even more of a requirement for online learning, is a luxury many parents of kids with developmental disabilities don’t have.

“Our kids are different. The challenges are different. It’s labour intense. It’s emotional.”

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