The coronavirus ate my routine and I want it back!

This is how it starts these days:

Damini: Okay, today I have Mitti cafe (all zest for life)
Me: No baby (embellished with much regret), Mitti cafe is closed.
Damini: NOOOOO!
Me: There is a big fever going around (I really don’t know how to explain virus to her).
Damini: No fever!
Me: No baby.... you can get it if you go to work, so it’s all closed.
Damini: Okay.... guitar class.
Me: (sigh!) No baby, no guitar class either..
Damini: There is guitar class (emphatically bordering on vehement)
Me: (here we go again...) No Min, there is a fever and everyone will fall sick. So guitar class is cancelled (still haven’t come up with a way of explaining a virus to her).
Damini (really upset): NOOOOOO!


After a few minutes of upset...

Damini: Okay tomorrow there is work.
Me (already tired and taking the easy way out): We’ll see...

After breakfast (turning out to be one of the few moments of amicable co-existence):

Peddling an alternate routine. It’s grandly called "working from home".

Me: Okay Damini, you got to do some work now.
Damini: NOOOOO!
Me (with gusto bordering on overdone): Of course you have to. It will be fun and everyone is working from home. Papa, me...
Damini: I’m not doing work.
Boss (me): Stop saying NO. You have to do work. Let’s start with stitching and then you bring your math book. Then we’ll do a puzzle and then a sketch.
Damini: No stitching, no math, no puzzle... I am cycling.
Me: It’s too hot to cycle! Now just get your stitching...(the patient and genial facade slipping).
Damini: NO!
Me (pulling out the guilt card): Now I am getting upset. Say NO one more time and I’m not talking to you.
Damini: NOOOOO!
Me (piling it on): See! NO again! That’s it!

And a dramatic exit.
Ten minutes later, Damini slinks in with the stitching and the math book.

Damini: Shall I stop saying no?
Me (making a big production out of conceding): Okay, but you really have to stop saying NO.
Damini: Are you smiling? Are you happy?
Me: YESSSS!

Exchanges through the day...

Me: Have you finished the puzzle yet?
Damini: I finished it.
Me: Where is it, show it to me...
Damini: I put it away.
Me (certain that she never finished it): You were supposed to show it to me..
Damini (after a pause): Amma...what’s for lunch?

Me: It’s too hot to cycle.
Damini: I want to cycle (vehemently)
Me: You’ll get sick
Damini: No sick!
Me: Yes sick! (I cant help it anymore)


Damini: I think we will order today (sometimes as a treat we order-in from the restaurant next door)
Me: No can do babe...the restaurant is closed.
Damini: Nooooo! It’s open (no small amount of frustration)
Me: Remember I told you about the fever. The restaurant is closed so one one gets the fever
(still haven’t found a way of explaining ‘virus’)
Damini: ... (you guessed it!)


Me: Make a nice painting for me (laying out a choice of mediums)

Two minutes later, Damini comes into my room painting in hand.

Damini: I did it!
Me (all encouragement): Wow! Show me!

She dramatically holds up a line figure made with a sketch pen..

Damini: “ALIA BHATT with computer and phone and moustache" (haven’t figured this one out yet)

That just happened to be the hundred and fifty-sixth rendition of Alia Bhatt with a moustache.

Now this is the most upsetting and frustrating of them all..

Me: Damini no hugging.
Damini (visibly upset): I want to hug.
Me: No baby, you can’t go around hugging people for a while. There is a fever going around, you could get it.
Damini: NO FEVER! I want to hug (completely frustrated)
Me: No hugging and kissing and shaking hands for some days Damini, until the fever goes away (equally frustrated)
Damini (pulling out her ultimate threat when things get too much for her): SLEEPOVER... I’m going

And here we go again....(sigh!)

Me: No sleep over baby, no going anywhere until the fever goes away.
Damini: Nooooo! No fever!

And on and on and on...

The grand new routine "working from home" is barely popular. Me as the ‘Boss’ is even less so. She is no closer to grasping the idea of a fever, that she does not have, ripping through the world, stalling her life.

And I am no closer to finding a way to explain  to her the concept of a "virus" that is taking over the "world" making everyone sick with fever.

To a person like Damini, whose learning depends on concrete experience, an invisible thing that can enter your body in incomprehensible and "The World" is just a jigsaw puzzle she hates doing.

Meanwhile at night...

Damini: Okay... tomorrow I have office (full of hope)
Me: NOOOOOO!

My Envy.......Is Damini’s pride

There is an old television advertisement that I grew up watching which had a tag line that has stuck with me: ‘Neighbour’s envy, owner’s pride’. This could very well be a tag line for how I have felt about Damini’s life the over last couple of years. A happy alchemy of growing independence, maturing skills, some radical decisions, chance encounters, an amazing set of friends, a supportive network of parents of differently-abled people –parents like me...Damini turned 21 amidst some major transformations.

At the Velvi Art Festival

At the Velvi Art Festival

At the Velvi Art Festival

There were inklings that the aspirational independence was actualising. The eye opener was a residential art festival for persons in the autism spectrum (I’m so glad they happily included a person with trisomy-21, thank you Akila Vaidyanathan) that I attended with Damini, where I found myself completely superfluous for 3 days. I was gobsmacked by the enthusiasm with which she threw herself into all the activities, navigated her way from one session to the other, grabbed the mic whenever she could, hung out with the dudes and generally ignored me in between hugs. I had no idea she was so ready for it. Seven months later Damini went on a four-day camp in the Himalayas with Evoluer (an amazing brainchild of Shaloo Sharma). We dropped her off at the New Delhi station and picked her up from there four days later brimming with pride, stories of adventure, the email handle of a boy in her pocket and the incredulous refrain “I went all by myself!”

Off to the Himalayas!

Travel buddies

Simultaneously we introduced a radically different element to Damini’s schedule. To try and figure out what we needed to focus on in her development so that she is ready for a productive and independent life, we found her ‘jobs’. A network of friends helped us find positions for her as an intern with two amazingly experimental and creative people: Anjali Sharma, a Bangalore based designer and Sonali Maniar of Temple Tree. They willingly invested time in finding things that Damini could do that was actually a part of their process. It’s a gamble that paid off.

With Anjali Sharma

Working at French Curve

Last April, Damini formally joined the workforce. For three days a week she works at Mitti Café, a chain of cafes that has a mixed hiring policy. She also continues to work a couple of days at the designer’s as her office assistant. She has ‘work’ friends and a salary to fund her biriyani addiction. Over the years, there had been glimpses of a wistful desire for a life like her sister and cousins’ through the perennial happiness of her days, a desire to interact with the world without interpreters, facilitators and mediators. Now she gets to do that five days a week.

With the Mitti Cafe crew

The fundamental and scary shift is that Damini went from a safe, predictable and curated exposure of people and situations to one that is a lot more unpredictable and out of control. There was no way we could whet and filter and prep the people that she would interact with.

The uncomfortable truth of this entire experience is that while Damini just went out there without missing a stride, it threw up for me insecurities, thoughts and notions some of which I never knew I harboured:

-        The need for my daughter to be perfect at her work lest the cafe decides that she does not pass muster

-        The worry that Damini might do something embarrassing

-        The overwhelming urge to save her from any ridicules and hurt

-        The notion that the onus of being understood, ‘perceived well’ is all on Damini

-        ‘This is a referendum on my effectiveness as a parent’

The last one was the most uncomfortable of all.

It took effort to make peace with the fact that she might do things wrong and she might get hurt. She would just have to learn to deal with it like anyone else. If people do not get her or find her ‘strange’ it’s their problem to deal with. The world by and large is supportive. Mostly it just needs help with the how of it

And the reason Damini adapted to this change with such aplomb was because she was handicapped by none of the above.

There is such freedom in responding to every moment and person with nothing but anticipation. It also scripts how people deal with her in return. Her good cheer and gentleness puts most people at ease and they naturally tend to return the favour. I have to recount the instance when we were getting her passport renewed. After an interminable wait we had our turn with the passport officer nearing lunchtime. To say he looked fed up, irritated and hungry was putting it mildly. Damini just walked up to him, smiled, and said “good afternoon uncle”. It was astonishing how that man just melted from a grouch to this genial ‘uncle’ in seconds. He made small talk with her, introduced her to all the other equally jaded officers as his ‘friend’ and fast tracked the rest of the process. I wish I had captured that instance. Most people respond with the same ease and good cheer that she brings to her interactions. Most importantly they lose the tendency to be self conscious and wary about how to interact with her.

I find that she has this remarkable ability to filter out any negative emotional baggage from most situations. She has developed her own way of dealing with situations that are upsetting. Her reaction is any one or combinations of the following: a mild scowl, withdraw and recoup by giving herself a pep talk (sometimes audible), call me and tell me she is ‘happy’.

Whatever the reaction it lasts only for a few moments, the instance put behind and she has moved on. Even better is the blessed ability to be completely oblivious to the existence of sarcasm, ridicule, or rejection. They lose their capacity to hurt when they don’t exist at all.

While there are stray incidents of genuine distress, or walking out of work early, or landing up at home with a birthday gift in November when her birthday is in August, they are nothing that has alarmed us enough to doubt the wisdom of our decisions. Meanwhile Damini continues to looks forward to each day with excitement.

As for me, while I have celebrated this transition every step of the way, I am truly envious! I am envious of the fact that she has purpose in life while I’m waiting for mine to reveal itself. I am envious that she has a paying job and I don’t. And I absolutely covet her relationship with life...that of being best buddies!

Leave Out the Judgement

I was recently at a friend’s place for dinner, and I don't really remember how it got there, but the conversation turned to  “What would you do if you knew beforehand that your child was going to be born with a certain disability?” (Rather depressing party conversation, I agree). The responses ranged from “It's not morally right to terminate such a pregnancy” to “I would feel like I'm murdering a life if I ended it”. I think most people sitting there forgot that I have a daughter with Down syndrome.

Coincidentally, I had happened to have recently seen a video featuring people with Down syndrome that was evidently created to sensitise the public to their lives. It was quirky, humorous and warm…until the very end, at which point it decided to question the ethics of prenatal testing for anomalies, and the decision to terminate such pregnancies. The message shifted from “Understand who we are” to “We have a right to be born, we are just another kind of people!”

After nineteen years of parenting a person born with challenges, I have a question:

Why do we ascribe morality and ethics to a person’s decision to have or not have a child with known disabilities and challenges?

I don't know about everyone else, but the first thing I did when both my girls were born was to count their fingers and toes. And every time they opened their eyes for the first few days, I waved all kinds of things, from my hands to stuffed toys, in their faces to ensure they could see. I also snapped fingers, sang (rather discordantly), and clapped all around them to figure out if they could hear.

I needed to reassure myself that they were visibly normal. I’ll wager that most people feel the same way. Everyone desires a ‘normal’ child.

When we found out that Damini had trisomy 21, we heard every well meaning sentiment from “She is god’s child”, and “You are the chosen one”, to “You are blessed!”

I really appreciated the people who just said “Oh”.

The thing is, you never quite know the extent of a challenge beforehand. Imagine you have a lifetime of painfully discovering them:

-    When the developmental chart races ahead of your child

-    When you find out how difficult it is for your child to communicate with or without words

-    When ceilings are reached rather quickly in cognitive capabilities

-    When each skill is painstakingly acquired over more years than you can count only to be lost in a couple of weeks of negligence

-    When your child is sick more often than the rest of the world

-    When toilet training takes as much time as it takes for everyone else to learn rocket science

-    When you realise that your child may never learn to express his joy, anger, fear, hurt in socially acceptable ways

-    When you have to build your child’s self esteem in a largely indifferent environment

-    When your child is unable to involve socially with their peer group

This list only gets scarier.

How does one cope?

We put on our game faces, and employ any one, or a combination of the following:

-    Pray to all kinds of gods

-    Never give up the hope for a miracle cure

-    Learn to stuff our egos in our shoes, as it comes in the way of cajoling our child, begging for our child, and persuading the world to acknowledge our child

-    At least one person in the family puts his or her ambitions and plans on the back burner permanently, puts on a game face, and starts convincing him/herself that this is very fulfilling

-    Become pushy and grabby on behalf of our children because they cannot do it for themselves, and society really appreciates that in the regular population…. only it's called ‘ambition’

-    If we can afford to, hire a whole bunch of people to outsource their development to

-    Form associations with other parents of similar impairments

-    Save up every ounce of patience for this one person, and have none left for everyone else in your life including perhaps your ‘normal’ child

-    Learn to live with the giant lump in our throats most of the time

-    Put up a brave, even defiant facade for the world

-    But mostly, we just get on with the seemingly impossible task of making our kids independent and productive members of society

The things we say to assuage ourselves

“Our life is so much better because of her”

“Even normal kids have challenges”

“Just another way of being”

“I wouldn't have it any other way”

What ever you say or do, there is no avoiding the frustration you feel watching your child struggle to catch up. No avoiding the helplessness when you watch your daughter stand on the fringes of a social group not knowing how to be a part of it. No avoiding the anger when you ‘perceive’ indifference towards your child. No avoiding the fear that someone might take advantage of your child. No avoiding the overwhelming thought that there is no let up in this role ever.

Most of all you worry. You worry about “what's going to happen to her after you”.

I don't know how one can romanticise all of this. I cannot understand propaganda that seems to suggest that there should be more of ‘us’. Let's not forget that there is nothing normal about this. These are aberrations from the normal. I'm fairly certain that, given a choice, almost all parents of children with special needs would want their kids to be born with normal genes, physiology and capabilities. Heck, I would any day exchange my daughter’s chromosomes for a limited set of 46.

The next time I'm the ‘Chosen One’ I’d like to be chosen to win a big lottery, or to be a famous movie star some such thing. For I know that had I known about Damini’s trisomy 21 beforehand, I would seriously have considered not having her.

So let me flip the question.

How noble or ethical is it to choose for an unborn foetus with known genetic anomalies, a life of constant struggle, in a world that is at best patronising, and at worst hostile, but mainly indifferent?

I've known some regular kids, in the throes of adolescence, to turn around and tell their parents,

“I did not ask to be born”.

Meanwhile, let's take the moral judgment out of such a decision.

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