In addition to all the worry and uncertainty in the midst of the COVID-19 pandemic, Vanessa Coens is concerned about her two boys with autism regressing during this period of self-isolation.
Normally, 12-year-old Owen and 10-year-old Ben would be in school, which Coens said is critically important to developing and maintaining their social skills. Ball hockey and karate are also usually a part of their daily schedule.
“To get back into that, it’s going to be very difficult,” said Coens, who also works for Autism Ontario from Niagara Falls. “I worry about my sons, both of them, regressing socially … I worry about [him] not wanting to have that connection with other people that we’ve been working on with him.”
As a parent, am I doing enough? Are they happy enough? Are they learning enough?– Vanessa Coens, mom of three kids
Now, that sense of normalcy has been temporarily stripped away and the family spends almost all of their time at home as health officials continue to reinforce physical distancing to stop the spread of the coronavirus.
“It’s hard. It’s stressful. There’s a lot of anxiety happening right now in these uncertain and very strange times,” said Coens. “It’s been overwhelming.”
Coens and her husband both work from home, so trying to keep their three children occupied is a challenge in itself. Since school is suspended until at least May, they’re also taking on the role of a teacher.
Pressure is ‘overwhelming’
All of this new pressure put on their shoulders is “overwhelming,” which makes them begin to question themselves.
“As a parent, am I doing enough? Are they happy enough? Are they learning enough,” Coens asks herself each day.
Now that schools began offering some online resources at home, Coens said that’s helped. She also said her children can connect with their friends digitally, even through video games, to somewhat keep up with their social skills.
Craft time, movie nights or baking with the kids are also things she tries to do regularly to keep them busy and engaged. Even some “screen time” with tablets, computers or TV is on the menu during this period of self-isolation.
But adults with developmental disabilities present new sets of challenges, especially if they’re non-verbal.
That’s the case for Mary Beth Rocheleau of Windsor. Her son Gregory is a 19 year old who is non-verbal with autism, and requires around the clock care.
“He realizes everything is different … [and] he doesn’t understand really what’s going on,” said Rocheleau.
Her son is missing out on a structured day of learning with life skills schooling. But since he’s non-verbal, Rocheleau said he doesn’t understand why that’s no longer a part of his routine.
LeeAnn Poisson in Lakeshore is in a similar situation with her daughter Abbey. She also has autism and is non-verbal.
No day programs, support workers or respite
Typically, she would attend a day program, have support workers on some nights, additional personal support worker assistance and occasional weekend respite.
“We have had nothing for almost three weeks, caring for her 24/7 and trying to work from home,” said Poisson. “Yes, it’s been difficult.”
For Jessica Szucki in Tecumseh, caring for three young boys with autism as a single mother while isolating at home is “exhausting.”
She describes it as being “on 24/7.”
“No visits from family, no time for myself, no respite worker and no break that school provides. A lot of logistics go into things that we would take for granted, like having a shower,” said Szucki. “Trying to provide the structure for three different boys with three different sets of needs is exhausting.”
Parents want more support during COVID-19
Even Rocheleau is concerned she hasn’t heard any additional support for people with disabilities from either level of government during the COVID-19 pandemic.
“I was really disappointed,” she said.
As a registered nurse, she understands the government is focusing on healthcare and hospitals right now. But Rocheleau said those with developmental disabilities can’t be forgotten either.
Organizations need to be ‘innovative’
In Ontario, the Ministry of Children, Community and Social Services tells CBC News it’s encouraging organizations to be “innovative” in offering services remotely.
“A number of providers are actively pursuing virtual service delivery and tele-practice, especially in the areas of ABA consultation, caregiver training and education and online resources for families,” said Trell Huether, spokesperson for the ministry.
Autism Ontario is partnering with businesses across the province to provide its families with in-home activities such as craft kits, pizza cuts and cookie decorating kits.
The agency will also soon begin to offer online video support groups to connect parents with each other, and “make them feel that they’re not alone,” said Coens.
“What can we talk about that is good? Keeping things positive,” she said. “Asking them, even, what’s the best thing that happened in your day today. It’s normal to get stuck in this rut.”