Stuck in time

Posted by Neeraja Prabhakar Bhattacharya, New Delhi

The COVID pandemic caught my attention much earlier than it did of the average Indian. All through January and February, I watched it hurtle across China, Japan, South Korea, Taiwan, Hong Kong, Singapore, dreading the day it would inevitably knock at our front door. I read every scrap of information I could lay my hands on, from scientific papers to conspiracy theories. By the time COVID-19 reached India, I feared it enough to immediately isolate my vulnerable family. By 13^th March, we were pretty much in self-imposed quarantine in our house. I was consumed with worry about preventing infection and anxious over my ability to protect my family.

I was annoyed with anyone who refused to take the pandemic or the required precautions seriously. My day was preoccupied with cleaning, sanitising, isolating and then worrying over whether I had done enough of it. I had all the treatments, drugs, vaccines being researched, on my fingertips.

The first voice of reason that pulled me out of this vortex was my typical teen’s tentative “Mom, you need to stop reading about Coronavirus!” admonishment. “You’re OD’ing over it!”. Was I reading and stressing so much that even my laid back, music-in-her-ears and head-in-her-books teenager had looked up and noticed?  

That brought me back to my reality. A big part of that reality was to give my 13 year old daughter with autism some semblance of a routine and structure. Lack of structure plays havoc with the functioning of any person with autism, leading to challenging behaviours. In our case, lack of routine and absence of physical & mental activity coupled with not enough time spent in daylight robs us of our sleep cycle.

So we set about trying to bring some sort of order and productivity to my daughter’s day. My fellow autism mums seemed to be making a success of it with daily new videos of creative art and craft, geometrically chopped vegetables, neatly folded piles of laundry, emblazoned across my social media.

On the other hand, we struggled to keep up with daily chores – meals that did justice to my family’s varied dietary requirements, cleaning, online classes for the other kid and R’s academic tasks assigned by her special school. All this without the domestic help we were used to having.

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We functioned on barely 4-5 hours of broken sleep, always on our toes to ensure that R did not eat unsafe, inedible stuff, a dysfunctional behaviour she struggles with. She’s also curious, most interested in food and always on the move. Trust me, it’s a dangerous combination when you are trying to do ten things together and are low on energy and alertness. Not being able to muster enough time or energy to keep my child productively engaged and learning led me down the guilt path. The other mothers must be more motivated, organized and efficient than I am.

“Maybe they are 10 years younger and have slept just a bit more than you have over last 2 months. Maybe they struggle lesser with keeping their child safe than you need to. Maybe they have smaller families with lesser needs than yours.”. A small inner voice piped up. That was another part of our reality I needed to acknowledge. Our child is a loving, lovable handful. I am a nearly fifty year old struggling with my own health issues and my family’s needs.

My lockdown has not resulted in my special child learning any amazing new skills or making academic leaps. Nor has she made any significant behavioural or life-skill related gains. Our dining table is certainly not groaning under the collective weight of gourmet bakes and continental delights or scrumptious Indian mithai. Nor has our family been particularly creative together over music and art. All of this has been the bounty of the lockdown for most of my extended family, friends and fellow autism mums.

What I do have is a reasonably clean, sanitized and organized house ticking with its own lax rhythm. There are 3-4 fresh, home-cooked, reasonably tasty meals every time my family gathers together to eat. With an occasional special dish thrown in, on my high-energy days. My typical teenager is coping with her online classes and pitching in with chores… willingly! My gentle, nature-loving mother-in-law is happily showing us the new species of birds that are visiting our balcony.  

My ASD child has learnt to say “chips phone pe order karegi” instead of “chips shop se buy karegi” [“I want to order chips on phone”, instead of saying “I want to buy chips from the shop”]. There are times she lays the table on her own to let us know that she is hungry. There are days we colour together, play the keyboard, study. Yet, there are days when I am too tired, sleep-deprived and despondent to engage her. Those days I just let her be. I focus my limited mental and physical energy on keeping her safe, happy, indoors. I have learnt that it is alright. In my limited capacity, with my strained situation, I have done my best.

The lockdown – just like a special needs journey ­– is a marathon, not a sprint. And we shall strive to reach the end safe, healthy and sane, albeit as ordinary and unaccomplished as we started. Amen!   

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