Being confined at home is a challenge for most Manitobans, but for many who live with special needs, isolation can be even more challenging — and may have lasting impacts beyond the pandemic.
Feven Araya is a mother of twins, who were both diagnosed with autism at age two.
Her daughters Eliana and Tiana, now six, love surrounding themselves with friends and both do well with routine.
Araya says every child with autism is different, but routine is often essential.
With the cancellations of speech therapy sessions, school, swimming classes and family visits due to the coronavirus pandemic, Araya is afraid that her daughters might regress socially.
“I worry that they will find it difficult to connect to others after all of this is over,” she said.
Araya says her daughters love their weekend swimming classes.
When those classes were cancelled it disrupted their lives deeply, and now every Sunday morning, when they would normally be going to swimming, there’s instead an hour-long tantrum.
“Even though, you know, it’s not easy taking them out and about, we still did a lot of stuff outside,” said Araya.
‘Community has been such a huge part of this’
The change in routine isn’t easy for her or her daughters, but she says they are happy to do their part by staying home and staying safe.
Araya’s husband, Araia Seyoum, is a health-care worker who has been self-isolating away from the family since early March.
“It’s kind of hectic for all of us, but we’re just going day by day,” says Araya.
“[The twins] see me and notice if I’m frustrated and give me kisses.”
Normally, a respite worker would also be there to help Araya for 10 hours a week. During that time, Araya might help the girls with their school work, go grocery shopping, or take time to herself.
But that help has now stopped.
Despite the major changes, Araya remains grateful. Every week she receives calls and emails from social workers, St. Amant, Weston School, neighbours, friends and family, checking in to see if there’s anything she needs or wants to talk about.
Her husband also knows this is a hard time and he drops off a gift for her once a week — Tim Hortons doughnuts.
“Community has been such a huge part of this,” said Araya.
For now she is attempting to create a new normal through walks around the block, car rides and crafts.
Jennifer Rodrigue, director of communications and public affairs at St. Amant, says the not-for-profit resource centre for Manitobans with developmental disabilities and autism is trying to ramp up its support for families however it can.
The organization is providing online resources and free training for any Manitoban who supports, lives or works with a person who has autism.
For Araya, it’s the small forms of human connection and support that make a big difference.
“We took a lot of stuff for granted, like going for a walk and feeling safe and meeting up with friends for coffee,” she said.
“It’s mostly just people, that’s all we need now.”
Life after the pandemic
Alex Lytwyn has lived his entire life with cerebral palsy, which limits his body movement.
He describes his living situation as isolated even before the pandemic, and says it’s become much harder during the global crisis.
“When all this is over, everyone will go back to social outings, go back to the way life is — but for me, when all this is over, I’ll still be the same,” he said.
Lytwyn, 34, has been fighting for years for more home-care support to cover his basic needs and for the chance to work.
He says his health is deteriorating but his home-care hours haven’t increased.
Currently, Lytwyn receives about 10 hours a day of home-care support, which he says isn’t enough and leaves his life restricted.
That’s why he’s part of a campaign called Locked Out of Life.
The campaign, initiated by the Cerebral Palsy Association of Manitoba and the Public Interest Law Centre, calls for more support for adults living with disabilities so they can be an active part of their community.
WATCH: Alex Lytwyn shares words of encouragement in the campaign video
Despite his mobility restriction and limited government support, Lytwyn still manages to be part of his rural community of Winnipegosis, about 270 kilometres northwest of Winnipeg.
A major part of Lytwyn’s life is volunteering with the local hockey board, school advisory committee and baseball committee.
He also attends Assiniboine Community College and is working toward becoming a youth councillor.
But all that changed when COVID-19 hit. His school ended and his volunteering slowed down.
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“It’s not easy for me at the best of times. It’s really difficult — I can’t go out. It’s really hard on my mental health,” Lytwyn said.
One of the activities he is still able to do is grocery shop. Going out into his community and seeing neighbours is something he looks forward to, but it has also always brought uncertainty.
With limited income from the employment and income assistance program, Lytwyn says grocery shopping is a bit of a guessing game, and he’s never sure if he’ll have enough money for the basics.
He doesn’t have the financial means to stockpile food and hasn’t received any increased support from the government to prepare for COVID-19.
He’s not the only one raising those issues.
The organization Make Poverty History has started a petition calling for employment and income assistance to increase by $300 a month — something the British Columbia government has already promised.
Lytwyn hopes that the global crisis can provide some understanding for people in situations like his, and about the needs of people with disabilities.
“With this pandemic, something good can come out of it,” he said.
“I hope able-body people realize we have a voice too. We all have our point of view.”
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