How families of children with special needs are navigating through the COVID-19 pandemic

Families of children with special needs in Ontario are joining the rest of the province in adjusting to a new way of life during the COVID-19 pandemic, but for many of them the spread of the disease across the country has meant cancelled therapy for their children, fewer supports and heightened vigilance in avoiding germs.

While these families support the measures being taken by the provincial and federal government to encourage social distancing, some are trying to come to terms with the fact that the social isolation they felt before the novel coronavirus was declared a pandemic will likely get worse.

The provincial government announced on March 12 that schools would be closed until at April 6, although it's expected the shutdown will extend beyond that. Premier Doug Ford then declared a state of emergency in Ontario last week, resulting in several places like community centres and libraries closing, with the provincial government taking another step on Monday by announcing that all non-essential businesses have to close by 11:59 p.m. tonight.

For children with autism, the closure or reduced services at centres that provide behavioural therapy has parents worrying that their children could regress.

"Obviously we understand, we all have to do our part, so we don’t disagree with any of the decisions that have been made at all, but we do worry about what this is going to mean," said Mike Moffatt, a senior director of policy and innovation at the Smart Prosperity Institute and an assistant professor with Western University’s Ivey Business School who has two children with autism.

"Our big concern is we’re not therapists," said Moffatt. His 5-year-old son Mats was going to a centre for full-time therapy, Monday to Friday, until March 16. Moffatt said they had started to see an improvement in Mats' ability to communicate through sign language and other methods.

"He was actually doing really well before so we’re trying to do what we can with him, but he’s definitely not getting the level of therapy that he would if he was still there," Moffatt said. "I’m fully expecting that this is going to go on for months, the big concern is that he’ll stop making progress and actually start to regress."

Moffatt and his wife, who are now both working from home, have been taking shifts with Mats while also tackling the challenge of trying to sort out their own schedules and not booking meetings at the same time.

But Moffatt said they're lucky in that both their children are rather flexible — a contrast to many with autism who require routine. Their daughter is staying with Moffatt's parents in London, Ont., for now.

"It’s hard enough looking after one of them; looking after both full-time really wouldn’t be manageable given that, again, we both have to work as well," he said, adding that while this was a tough decision, it was the "right thing to do."

"You can tell they’re just missing each other quite a bit, that’s been one of the biggest changes for them," Moffatt said.

When it comes to precautions during the COVID-19 pandemic, they did a "thorough disinfecting" of the house at the beginning of last week and are trying to stay "as isolated as possible."

Speaking with QP Briefing on March 19, Moffatt said Mats had been fighting a fever the night before.

"You always start to worry," said Moffatt, adding that his son was feeling better. He also noted that Mats tends to touch everything and has pica, an eating disorder that involves trying to eat non-food items.

"If there’s something, (if) those germs are within his vicinity he will find them," said Moffatt.

Jennifer Hancock said the risk of illness for her 10-year-old son Zach who uses a wheelchair and is "completely dependent physically" is a concern for her. He cannot sit up, doesn't have complete head control and doesn't have functional use of his hands, Hancock previously told QP Briefing.

"If Zach were to get it, it would be very risky because of the respiratory implications, so we worry about that, but that’s kind of more on the back-burner because we’re taking a lot of steps to try and social distance," Hancock said. "Often kids in Zach’s situation are prone to respiratory illnesses anyway; in the winter, we don’t really want him to get the flu period."

She referenced the situation in Italy where reports have shown doctors facing supply shortages and having to make tough decisions on who to treat and who is most likely to recover from COVID-19.

"(Zach) would not be part of that, and so that is a fear; it’s kind of one I’m putting in the back of my mind for now, but all parents of children with needs like our children have that in the back of their head," she said.

Aside from the health concerns, Hancock who is a high school teacher with the Halton District School Board, said "if this is going on for months, I think it will be a strain on both of us."

Faced with school closures, Hancock said the COVID-19 pandemic means that children like her son are "going to lose a lot of their social life, if not all of their social life."

"(It) doesn’t sound like much and it’s a sacrifice obviously we have to make, but it’s hard," she said.

Zach goes to the Niagara Children's Centre School, one of six schools operating under Section 68 of the Education Act that are called "hospital boards." They are school authorities located in children's treatment centres and are meant for "students who have complex medical needs and are unable to attend regular school," according to the education ministry's website.

"He loves school, that’s where he learns but it’s also where he has a lot of interactions with people, so I’m sad for him that that will be gone," said Hancock. For Zach, interacting with his peers online is difficult.

"He doesn’t have the skills to play online gaming and social media would be...completely directed by me," said Hancock, adding that they try to do video calls with relatives.

"When you go to school you have this freedom from your parents, and sometimes you have this identity there and now that is for him...on pause," she said, adding that since she's not an elementary school teacher, she's also concerned about working with him academically.

"When your mom tries to do stuff with you that you’re supposed to do at school, it’s not quite the same," she said. "I’m not an elementary school teacher and I’m also not specialized in special needs, I’m specialized in my son, but I don’t necessarily know the best ways to teach him without annoying him as his mother."

Zach also can't speak verbally, so to communicate he uses an "eye gaze" system where he is read options and selects his choice in different ways such as using a switch. Hancock said he would lose opportunities to practice his communication skills at school.

"Because I’m his mother I can often read him really easily, which isn’t an advantage because he needs to work on communicating with all different people," she said.

The physiotherapy Zach was receiving at home every two weeks along with a day camp he looked forward to every other Saturday will also be put on hold, but ultimately Hancock said she knows the closures are necessary.

"We’re not complaining, I think that shutting everything down is what we had to do to try and contain this thing and we’ll figure it out," she said.

Taylor Davies, who has a nine-year-old son with autism and has previously called on the government to expedite the roll-out of crisis supports for families, said Grayson had his last therapy session on March 13.

Grayson is a Grade 4 student with the Ottawa Catholic District School Board, and Davies said that while they're trying to incorporate academics into their day, it's tough because he isn't at his grade level on certain subjects.

Education Minister Stephen Lecce unveiled a new website last week with various educational resources so students can learn at home. Davies said the resources "aren’t necessarily accessible" for Grayson because she doesn't know which grade level to use for her son.

Davies said they've been able to correspond with his teacher and educational assistant during the past few days and she's trying to get their help on determining what grade level to use. She said while they've sent her some resources to use, it's difficult to safely do some of the activities with him since they would normally involve two educational assistants at school.

She suggested the government implement some measures to help kids with disabilities. For example, Davies recently enrolled Grayson in an online group aimed at helping children practice their social skills. Lecce's office was not able to provide a response before deadline about how resources for special needs students are being incorporated into the government's plan during the pandemic or if the government would consider funding these types of virtual groups.

Meanwhile, the four hours of behavioural therapy Grayson was receiving each week has stopped.

"We know that when children have to stop therapy abruptly that there’s typically a regression," said Davies. "With this regression I wonder if there will be any progress made or if it will just be trying to regain the skills that he lost without school and (Applied Behaviour Analysis therapy)."

Davies said she received a letter from the government last night inviting her to apply for $5,000 in interim funding for Grayson through the Ontario Autism Program. She called this "kind of heartbreaking" to be offered some help, but know that "now there’s nowhere to spend it for the foreseeable future."

Meanwhile, when it comes to social distancing, Davies said her and Grayson were in many ways "already pretty isolated from society."

"(This has) definitely made us further isolated than we already were," she said, adding that she's worried about the "long-term ramifications" on their mental health.

The two sometimes take walks later at night when there aren't many people around because Grayson doesn't understand how to maintain distance, as advised by health officials.

Like Mats, Grayson also touches items in his path and puts his hands in his mouth. Grayson previously found washing his hands to be an aversive activity and so Davies asked his therapists to work on that with him last fall. It's still hard to get him to do this at times, said Davies.

Her message to those not necessarily following social distancing guidelines was: "we need to work together to protect our most vulnerable; just because this may not impact you as greatly as it is impacting (some), doesn’t mean that you shouldn’t be doing your part."

The past few days have seen Prime Minister Justin Trudeau and Premier Ford utter stern words for those not taking COVID-19 seriously, with Trudeau saying yesterday "go home and stay home."

Davies said one thing she is reminding herself is that the anxiety she and other adults with coping skills are facing is likely being felt at an "exponential rate" by children with complex needs.