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Trials and triumphs of an additional needs family during lockdown learning
Kylie is a mother of four children in Victoria, three of whom have additional needs, and can offer a unique perspective last year’s COVID-19-induced lockdown learning. As a family of six, with her husband Michael being a teacher himself, this family had its hands full during the extended lockdown from hell that Melbourne endured in 2020.
Her eldest son Jaiden is an intelligent 14-year-old boy with autism who attends a local mainstream school. His younger brother Josh is 12; a quiet, thoughtful boy who attends the same school and has been diagnosed with inattentive ADHD, as well as anxiety and depression. Smiley 6-year-old Lukas is the baby of the family but not to be underestimated or left behind by his three older brothers.
Kylie’s third child is 8-year-old footy fanatic Lachie who is facing the biggest hurdles of all: he not only suffered a severe stroke at birth that was only diagnosed at the age of three and a half, but he also suffers from selective mutism and mild cerebral palsy and is often confined to a wheelchair.
Before the pandemic hit, a normal week for Kylie and her family consisted of rising early for school drop off, church commitments and a plethora of various therapy sessions. Kylie says, “A typical week is very long,” with three out of four kids having to juggle school, homework and a social life with frequent physio, hydrotherapy, occupational therapy, psychology, and pediatrician appointments.
Fast forward to 2020 and the challenges for Kylie and her family increased ten-fold, not least of which was the pandemic’s impact on their mental and physical health.
For Jaiden, this meant dealing with his social anxiety and OCD to do with handwashing. Even before the pandemic hit, Jaiden’s handwashing had gotten “to the point where his skin was falling off.” After spending 6 months before the lockdown working to moderate his OCD, Jaiden then struggled with a reversion of habits. When lockdown began, Kylie and her husband had to say, “Forget what we said about the frequency of handwashing. Use sanitiser.”
Josh was already suffering with inattentive ADHD and anxiety and depression, so not being allowed to leave the house to see his friends heightened those symptoms. Kylie says, “Josh didn’t even like showing his face on the WebeX” but luckily the school allowed him to show himself on the video class then turn off the camera, although he had to be checked every 20 minutes to stay on task with his schoolwork.
Kylie says, “He really sunk into some severe depression that we just couldn’t seem to budge,” and despite weekly meetings with the secondary welfare coordinator, she claims that the no-fail policy for lockdown learning was the primary reason why he didn’t have to repeat the year.
This was just one of the blessings in disguise that 2020 held for their family. As their eldest son Jaiden thrived academically, receiving an award at the end of the school year, the family were also able to get out for a walk together before church online every Sunday morning with their two beloved cavoodles, Minnie the therapy dog and Wilbur the rescue dog.
Another triumph ensued when Lachie heard from a personal hero of his, thanks to his mum’s dedicated efforts. Lachie was “very miserable and in a lot of pain” without his hydrotherapy sessions at the pool, and the family struggled to find the right desk to chair height for home learning, but Kylie wouldn’t give up on her son. As a lockdown school project, Lachie handed Kylie a letter he’d written all by himself one day. It was addressed to his idol, Dustin Martin from the Richmond Football Club, wishing him luck for his upcoming game. Kylie says, “He just gave it to me and said, ‘Can you send this to Dusty Martin?’ So I did.”
For years, Lachie’s physical therapy had revolved around becoming like star footballer, Dusty Martin, so his reaction when Martin sent him a video thanking him for the letter, and a birthday card from the Richmond Football Club was “complete and utter shock.” Lachie originally didn’t think the video was for him, but for “some other Lachie.” Kylie says, “We had to play it again and again.”
As a mother, Kylie’s mental wellbeing was inevitably impacted by the drastic lockdown changes, which she largely attributes to ‘Mum-guilt’. In a statement that many mothers would find relatable, Kylie says of long lockdown days with no way to leave the house, “You didn’t want to spend time with your kids, and that was horrible … You just crave alone time. You just want them to go into a different room and disappear.”
“Mum’s guilt meant that I started the lockdown doing absolutely everything – even the specialist subjects – and I hated every second of it.”
“You put yourself last … even more than last because you’ve got these kids and the kids shouldn’t suffer because you can’t cope … You love your kids – it’s not your fault you have to homeschool them – but if everyone else can do it, why can’t I?”
While bravely battling a physical illness requiring three surgeries, Kylie managed to steal some rare moments of free time by walking around the block. Attempting to hold onto sanity amidst the chaos of a large family home all either trying to remote learn or remote teach, Kylie would leave 10-15 minutes early for a doctor’s appointment just to sit in the carpark and gather her thoughts.
“If [the doctor] was running late and apologising, I was just delighted because it was the only time I got for myself,” says Kylie, and comments on the challenge of juggling all her tasks as a mum and maintaining a happy presence in her home for her family.
She says, “You turn into this horrible, nasty person” who just feels ready to snap under the constant pressure of either teaching or entertaining your children through a marathon lockdown.
Kylie’s strategy to cope with the strained schedule was to reduce her kids’ workload and only focus on the essentials, after what she describes as an exhausting attempt to do it all.
She says, “I put too much expectation on myself … to the point that I’m now still suffering as a result.” She had to be open with the teachers and say, “I cannot cope anymore with this.”
With an average wake up time of 3am, Kylie describes days where she dreaded getting out of bed, trying to figure out how she would cope with the coming day’s pressures.
When asked about the government and school’s support during lockdown, Kylie says, “They were really, really good,” although she admits that her sons had the occasional meltdown when teachers were unreachable via technology, as the boys were worried about failing particular subjects due to unsubmitted work.
In reference to her eldest son Jaiden’s teacher aide, she said, “She was just excellent. She would do check-ins, regardless of whether he needed help, so she was there for him.” The times during 2020 that Jaiden was at school in person, his autism made him “very rules driven” about all the restrictions, so his teacher gave him a little black book that he could write in if something his teachers or fellow students did that bothered him. This helped him to self-regulate and express his anxiety in a healthy way.
She mentions that some of the teachers at her kids’ school were “lovely but didn’t really get the concept of additional needs kids or multiple kids in a family” when it came to a lockdown learning context.
Her advice for anyone dealing with families with disabilities is, “Just listen to what the kid’s additional need means in the home environment and keep the expectations right off.”
Many have repeated the phrase “we’re all in this together”, but most people weren’t weathering the storm in a boat quite like Kylie’s family, with its myriad of additional needs and challenges.
As we face concerns of another lockdown this coming winter, many people echo Kylie’s concerns of, “Can I actually cope with it? Can I get through it? It’s my worst fear.”
By Lil van Wyngaard