Being quarantined at home for two weeks is a daunting thought for most, but the restrictions take on a whole other meaning for those with special needs and their loved ones.
One Cloverdale mom whose family is finding ways to cope after returning from a trip to Florida, acknowledged the exercise is important in helping prevent the spread of COVID-19, in the event one of them picked up the virus while they were away.
“We’re all symptom-free – so far,” Christine Williamson said Monday, of herself, husband Chad, daughters Jennah and Mikayla and her in-laws. “We just want to make sure we’re not a part of the problem, and we want to stay safe.”
Still, the impact COVID-19 has had on the routines and therapies that Mikayla needs to help manage daily life as a person with autism and other diagnoses has been severe.
In short, “it’s crisis mode,” said Williamson, noting the sentiment is one shared by many families who have special needs children.
And, the quarantine – which, for the Williamsons, ends Monday (April 6) – has only exacerbated it.
Usually, workers and therapists are in and out of the Williamson family home every weekday, helping 18-year-old Mikayla with everything from managing her behaviours to schoolwork. But now, “she has none of that,” her mom said.
“For kids on the autism spectrum, routine is everything,” Williamson said, describing her daughter as “quirky and funny,” with a love of reptiles and swimming, and a knack for the artistic.
“Everything that they do is regimented. It’s how they have order in their life. And so she has none of that. On top of that, we’re now quarantined. We can’t go to the park, we can’t do anything.”
To make matters worse, “because we don’t have answers, we can’t calm her fear and anxiety of it.”
“Her meltdowns are worse and more frequent. Her level of being able to cope is not there.”
No stranger to struggles, however – the family has weathered everything from layoffs to Williamson’s own battles with mental illness over the past two decades – Williamson said an important way that she and her family have learned to cope is to focus on what they can control, rather than what they can’t. Things like the “thermostat” in their home – and not the one that controls the actual temperature.
They’ve set up ‘no-judgment zones’ where as a family they can say whatever they need to without fear of judgment or reprisal, and then together, work on coming up with two positives out of whatever was said.
Recognizing the impact of limited space in the home on each occupant has also been important, Williamson said; honouring expressed needs for time to themselves, “even if we might be put out for a bit.”
“Just a lot of things like that – being willing to be vulnerable and to speak what it is that we’re feeling in any given moment… feel what we need to feel and then move on from that.”
They’re skills that can be applied to anybody, she noted, giving credit to Emotions BC Health and Wellness Society, an organization that formed in 2018 “to provide and deliver programs and services to families and caregivers of loved ones dealing with emotion dysregulation caused by diagnosed or undiagnosed mental health challenges.”
Williamson said the society helped their family “in some of our darkest moments,” and a desire to return the favour by being a beacon of hope for others drove her and her husband to become involved not just as program participants but also as facilitators of some of the programs. Williamson also now holds the role of administrative assistant.
In these days of social distancing, self-isolation and quarantine, supports are having to be given and accessed in different ways, many of them online. For Mikayla, that means connecting with her therapy team through such avenues as Zoom, with her mom at her side to guide her – though the sessions are a far cry from the support she gained through her one-on-one therapies.
Williamson said it doesn’t take a grand gesture to assist families that are struggling – it can be as simple as offering to add a couple extra items to their own grocery list. Neighbours can also share a tea “date” from the safety of their respective porches, just to check in.
“Practical things like that go a long way to break the isolation,” she said.
“We’re used to isolation, but this is different,” she said. “And because there’s so much more fear and concern, and there’s no end in sight, there’s no game plan. Everyone’s affected on such a deeper, bigger level, that the sense of community, to me, means that you’re really checking in on people and giving them a space… to share how they’re really feeling and what they’re really thinking.”
Williamson said she also feels “slightly strongly” about those who aren’t taking social-distancing and other recommended or ordered preventative measures seriously.
Acknowledging that she was among those who initially doubted the seriousness of the pandemic, Williamson said her mind changed when she realized how quickly it was spreading and how vulnerable Mikayla was.
“Because of all the struggles my daughter has, I am concerned for her safety,” she said. “She puts her hands in her mouth all the time.
“I feel that if people could understand that because we don’t know what we’re dealing with, there isn’t a defense for it. If we could just take a step back… just re-prioritize a little bit, we have a chance to save thousands of lives.”
Williamson said shifting her own mindset around the quarantine from one of “feeling like the walls are closing in on me,” to one that looks at abiding by the measures as a gift was an important step for her on Sunday; the halfway point.
As difficult as the journey is and will continue to be for an undetermined time, however, she said she is confident there are brighter days ahead.
“When I look at the virus, in and of itself, I feel that we have a lot of skills and resiliency,” she said.
“It’s not that there aren’t tears and concerns and unknowns. We have already weathered so many storms… you always find a way to rebuild from the ashes of what you’ve gone through.”
Online resources Williamson suggested include the Emotions BC website, at emotionsbc.ca (for families, caregivers and loved ones), and actcommunity.ca and reachdevelopment.org (for programs, training and supports for individuals as well as families).