Posted by Merry Barua, New Delhi
Neeraj goes to work at Aadhaar Vocational Centre every working day. But around February after several conversations with him, we had planned that he would go and stay at Ananda for two one-week-spans every month. Ananda is a home set up by Action For Autism. It is an assisted living program for adults with autism and other developmental conditions. Neeraj has had several short stays there. Like all the other residents, he just loves his time at Ananda. So it was inevitable that he would want to spend more time there. Hence the arrangement of two one week stays each month starting in March 2020.
Despite my many years with Neeraj and others with autism, with each passing year I am still getting to know Neeraj better. As parents we believe we listen to our children. But we mostly hear what we want to hear. We believe we are fantastic loving parents, which at one level we are. But our parenting is so coloured by judgments that we often don’t really listen. I am aware that it is only in the last few years that I have begun to mindfully, and with respect, listen to Neeraj.
Neeraj has always had difficulties and challenges expressing his emotions. With time, he has learnt to channelise his emotions in ways so that he does not hurt himself or others. One outcome of listening to Neeraj mindfully is that my judgements have come down. My heart is more open. Of course, I still do occasionally lose it. But I am able to see my behaviour for what it is, and using the same lens I view Neeraj’s behaviours. It has had a staggering impact on our relationship. And despite the ‘largeness’ of his outbursts (he is after all large – 6ft 2in), or perhaps because of that and the profoundly moving impact they have on me, I just love having him around. My heart does not want to let go, hence the unwillingness as yet to let him stay at Ananda permanently.
So, in early March he went for a one-week stay on the new arrangement, and came back grinning from ear to ear, looking forward to the next week-long stay later that month. Then COVID-19 happened. From the third week of March, we were housebound with the second of Neeraj’s stays at Ananda cancelled unceremoniously.
To counter all this unpredictability which I knew could send Neeraj off on a tailspin, I jumped in to give him as structured a day as possible, and ensuring that that structure was clear, direct and most importantly through a visual schedule. All of us do well with predictability, but kids with autism flourish. Knowing and ‘seeing’ in advance what each day holds has kept Neeraj on an even keel.
After a couple of weeks of settling in Neeraj’s sessions with Aadhaar re-started, online. Aadhaar is the sheltered workplace at Action for Autism where Neeraj worked during the week in non-COVID times.
Let me get something out of the say here. Neeraj is an average guy with autism. He does not have any outstanding skills. He is also someone who, like many of us, has many challenges: with sensory – proprioceptive, vestibular, tactile, motor coordination, and with social-communication. Pretty classic. So neither does he whip up gourmet meals, zip our home into shape with fabulous household work, or zap me with fabulous singing or his prowess on the computer.
Yes, Neeraj does some chores around the house. He makes his own bed a skill he honed in lockdown (yay!), makes our cups of post-lunch coffee (ditto, double yay!), lays the table, clears the table, brings in the clothes, makes his toast, microwaves his morning coffee, answers the door, plus other little odd jobs. Neeraj loves running errands. Get me a glass of water. Put on the fan. Get me the timer. Switch on the modem. Give the man the money. Find my mobile. Switch on the TV. These make his day. Of course, interspersed with “pleases” and “thank-yous”.
His other favourite activity is to sit rocking, Buddha-like at his favourite spot in the living room. Yes Neeraj has a ‘spot’. Sometimes Neeraj listens to music. From being someone who loved music all the time, there are times when he would rather not listen to any. And of course, dance. We dance. A lot. And definitely when the music is on. Horsing around and dancing is another favourite lockdown activity.
Neeraj’s experience with the Aadhaar sessions in lockdown have been educative. The facilitators keep the sessions fun. Neeraj loves to connect with his pals who he now gets to see every weekday. I cannot trust myself to leave him on his own with my computer. So he has his sessions on a mobile. Neeraj cannot use a mobile independently because he still has significant challenges with controlling the pressure of his fingers. And touch screens tend to go into coma with deep pressure. I have to set up his zoom sessions for him.
But after facilitating the entire first few sessions, I now mostly stay out of the way except for technical support. Its been fascinating to watch this highly distractible individual focussed on the tiny screen, listening intently to instructions, and following them independently. Who would have thought Zoom had this superpower! I don’t want to sound like a free plug for Zoom, but Zoom has had such a salubrious effect on him that he actually is eager to complete assignments that their facilitator Shafi sends for him. This is indeed a miracle.
In all this, we have of course talked about COVID-19: what it is, how it spread, about face masks and hand washing and staying at home. We watched a lot of COVID news in the early weeks. We talked of no more visits to Sagar, Big Chill and Oh! Calcutta, and no ordering in from Slice of Italy or the colony club. All this as just a matter of fact situation rather than a terrible frightening time.
We talk of all the poor people who are left with no money and often with no homes. We talked too of how fortunate and blessed we are to have a safe home, enough money and food. All of this I believe helps Neeraj appreciate the life he has. So between his Aadhaar sessions, running chores at home, watching Young Sheldon or catching the news on TV, answering the door and rocking contentedly in his ‘spot’, Neeraj is pretty set.
Of course, it is not all continuous bliss and serenity. When was life ever so! Neeraj probably has bipolar disorder though we have not had a formal diagnosis yet. He goes through phases of almost giggly overexcited heart-warming cheer to stomach churning behaviours. In his depressive low phases, his irritability and difficulty in concentrating sometimes keep him from his Aadhaar sessions. He is in one of those phases right now. He has anxious meltdowns and does not want to attend his sessions or complete his assignments.
But with positive support and giving him agency, “If you don’t want to join this session that’s okay,” “No worries. We can do the assignment another day,” makes him want to make an effort for the next time despite his difficulties.
The lockdown is a challenging time. But it has its positives too. It has given Neeraj an unfettered space to work on his emotions and self-regulation. It has made him open up to trying new things. And it has given me the calmness of space to facilitate Neeraj in his efforts. And to know that when his low phase passes, he will be his super excited and fun self again. That’s pretty cool and worth waiting for: the sunshine after the storm.
Cover image credit: Amrita Dasgupta
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