Coronavirus: Parents reveal challenges of helping children of determination e-learn

As the children suddenly find their world shrinking at an alarming pace during the #StayHome period, it is left to the parents to help them make sense of it.

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Anamika Chatterjee

Published: Tue 26 May 2020, 10:00 PM

Last updated: Wed 27 May 2020, 1:23 AM

As we draw new templates for raising children during a #StayHome period, it is worth turning the gaze towards parents of children of determination whose battles are altogether different, and far more challenging.
While online classes continue, the parents of special needs children have had to become intensely involved in order to ensure that the skills their children acquired over the years through classroom therapies and other activities are not compromised.
As the children suddenly find their world shrinking at an alarming pace during the #StayHome period, it is left to the parents to help them make sense of it. Three families share their moments of triumph and dilemma during the lockdown.
'It's good time for parents to get trained'
When she is not helping her son through his Zoom classes, Sujatha Anandram likes to keep her 22-year-old son creatively en- gaged. They do household work together, listen to music and even exercise. Like all parents, Sujatha and her husband Anand have figured that the key to taking care of their son Vivasvat, who has autism, is to stick him to a routine.
Sujatha, a behavioural therapist to children aged 1-6 years old, admits that it's tough because it re- quires a parent to completely monitor the child. Since Anand is busy all day working from home, that responsibility has fallen on Sujatha.
There are two perspectives Sujatha brings to the table - one, as an educator herself and second, as a parent. A concern common to both these roles is an anxiety about whether a prolonged lockdown could undo months and years of hard work she put into making her 22-year-old son independent. "He used to go for keyboard classes and to a physical instructor. Now he is not stepping out because he under- stands the situation. For me, the biggest scare is that I have worked all my life to make him independent, and now those efforts may just be going down the drain. The other issue is that when the lockdown eases and we all return to work, there may be a problem of transition because my son has got so used to staying at home and having his family around him."
Anand, however, maintains that mapping development also depends on which stage of intervention programme the child was prior to the lock- down. "For a child who had progressed substantially, it is possible that their progress will not be hindered compared to a child who was at a very early stage of intervention."
'Seeing people but not being able to be with them is heart-breaking'
When Leah Kettle began staying at home, it gave Stephen and Rachel an insight into what their daughter's day at Dubai's Al Noor School looks like. As in a classroom, all five days spent on Zoom lessons are different. As each day brings with itself a new set of goals, there is excitement, anxiety, frustration. Oscillating between these emotions is not easy for adults, much less for a 21-year-old with Angelman Syndrome (a disorder that affects nervous system). And yet, each day Leah is coming to terms with the 'new normal', as is her family.
Leah's #StayHome journey began with confusion and boiled down to frustration at not being able to go outside or even meet friends. "We couldn't explain to her why she wasn't in school or where her friends were. It has taken 7-8 weeks for her to acclimatise to the changes," said Stephen.
Stephen does not mince words when he says that virtual learning does have its limitations, especially when it comes to children with special needs because "they are tactile, they want company and seeing people on the screen and not being able to touch them or be with them is heart-breaking".
The time outside of Zoom class involves constantly thinking of new ideas to keep Leah engaged. "There is anxiety among us as parents. The longer this goes on, the less interaction they have and not being able to verbalise what or how she wants to be gives her anxiety. She's not with professionals, she is with us. We try our best but we don't have the skills that the wonderful teachers have. It is stymying her progress but she is also doing things that we never thought she would do five or six years ago. So, we are blessed with that."
The easing of restrictions has helped the family, as they manage to take Leah, who loves watching people from inside the family car, out more often now.
"Any special needs child is a drain and joy at the same time. We feel overwhelmed even in normal times, so the pandemic has made it more difficult," says Stephen. Rachel, however, emphasises on the positive side. "With each and every Zoom meeting, I have begun to feel the support. Thirty minutes is a long time in Leah's world for a Zoom meeting. She sees everybody and we reinforce as much as we can," she says. "And yes, Leah's world and ours has changed dramatically."
'Looking forward to something is important'
Life, as 16-year-old Anoushka Tandon knew it, came to a halt when one day her parents Sushil and Nisha explained why she could no longer go to school or meet her friends. Anoushka, who suffers from Down Syndrome, wasn't yet prepared to make her home her world.
Looking back at those initial days of unrest, her mother Nisha says that it helped to address the issue to her child as an adult, even as an e-learning routine came to their rescue. The idea of looking forward to do something during the day is as important for children with special needs as it is for adults. While a day-long learning comprising behavioural therapy with a bunch of fun activities like music, dance, arts and even baking has helped, Nisha admits that being a homemaker, it has also meant that she be more hands-on a parent.
The 'disruption' has come with benefits, chief among them being waking up late. But the inability to fully understand what is really going on has also led to moments of anxiety for both Anoushka and her parents. To address this, the Tandons have divided responsibilities to be by their child's side constantly. Being a homemaker and someone with whom Anoushka shares a "special connection", Nisha has had to devote more time, while elder sister Geitanksha has her work cut out to arrange all devices for next day's class and Sushil is responsible for some downtime in the form of boardgames such as carrom and ludo.
"I have had to dedicate a lot of time to Anoushka's education. And if more parents were to do so, it would be less worrisome. Of course, it would not always be the case with working parents, but the child can only progress if he/she works with a set routine."
Over the last month, Nisha admits there have been 'phases' when she's felt burnt out, but that's when hobbies like writing poetry and sketching have helped. For Sushil, a walk in the park and some game time with Anoushka has been fairly rejuvenating in itself. But when it comes to their younger daughter, both have their work cut out.
anamika@khaleejtimes.com 

Anamika Chatterjee

Published: Tue 26 May 2020, 10:00 PM

Last updated: Wed 27 May 2020, 1:23 AM

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