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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A Giant Leap

All of us have had at least “aha” moment that has wrought significant changes in how we think, or work or live our lives.

Damini has been having an “aha” year so far. And I would like to brag.

Most of Damini's growth has been in spurts, interspersed with long periods of seeming inaction. We've been on cruise control for a while now, with Shahrukh Khan still in the passenger seat. All parent teacher meets seemed to indicate that Damini was probably plateauing in reading, writing, math and what have you. Maybe it was time to whip out the calculator considering that even simple addition was a hit or miss most of the time. She seemed pretty content with her routine: wake up, cycle, school, cycle, watch movie, to bed again.

Suddenly Damini seems to have found another gear. Over the last year it has manifested in an amazing array of changes.

First things first, please note the new hairstyle after the first ever salon visit. We have been trying to get her onto a barber's chair for the last 15 years. She finally relented and fired me as her hairdresser in chief.

We've been consciously trying to introduce variety into her experiences and competence. Given the academic stalemate, we were getting a little desperate in our search for alternative skills and competence. I do not know about other parents of differently-abled children, but my biggest fear always is that Damini will have nothing to do with her life. Up until now, other than dance (the Bollywood kind) every other suggestion has been met with lukewarm interest or indifference.

After a lot of deliberation we nudged her into movement and art therapy. We decided along with Shabana, her facilitator that the focus would be on being able to understand and verbalise her feelings, and adding depth to her social interactions and communication. So far, we have had to depend only on her facial expressions and tone of voice when she says "I’m happy” in order to decipher her mood. We found her willing! What’s more, three months down the line she was still looking forward to these sessions.

We found a music school that took her in for guitar lessons (the guitar that was bought as a birthday gift and randomly strummed-on in tandem with her favourite songs). I will never forget how she hitched the guitar onto her back like a seasoned musician and walked out of the house for her first lesson. 

Her teacher started a notebook for her to follow and I thought that was really ambitious of him. Imagine how gobsmacked I was to see her pick the C scale and  “twinkle twinkle little star” from the book! We were on a roll.

Five months ago we enrolled her into yoga. Three months on, the enthusiasm was persistent enough to invest in dedicated yoga gear. Anu, her feisty yoga instructor had worked on a routine that eased her into the 'Asanas' and broke them down into a series of easy steps. She even created a funky chart for her to follow.

 

  

Almost a year after we started the first class, Damini really looks forward to 'Music Mondays’ 'Dance Tuesdays’ and 'Yoga Thursdays'. What is heartening to observe is that she has developed staying power, something that was sorely missing in all our previous attempts at creating interests.

One of the most heartening developments has been in her ability to give expression to her feelings, especially those that are distressing to her. Up until now, she has always dealt with them by repeatedly telling herself and everyone around her that "I'm happy", her facial expression saying anything but. If she got really upset then she would say, "I have fever, I'm not well".

Lately we find her attempting to verbalise the sources of her distress. So when her 'buddy' and chauffeur Das went on his annual holiday, she came to me as said "I'm sad Das uncle's gone to Assam". One day out of the blue, she refused to go to school. When asked why, she said, " I have no friends, there are only boys".

I felt sad for her, but I was so thrilled that she could tell me that!

Another thing she is finally getting is the concept of “why”. We take our ability to do a simple cause- consequence analysis so completely for granted, and it's taken Damini's struggle with it for me to realise how complex it really is. We also find her actively analysing new experiences and trying to interpret and categorise them on the basis of previous ones.

I had made a different curry one day. After two spoons of it, she told me "this is just like pickle". I realised she had isolated the flavour of ground mustard in it, which is the dominating taste in pickle. I saw this happen again in a completely different instance: I was watching a video of a really precocious kid that had been forwarded to me. Damini could not see it but she could hear it. She commented "just like Samarth in New York” referring to her cousin whom she had visited three years ago. She had categorised the accent. We were driving one day in town, and she looked out and said "Amma look at the castle". I know there is no castle in Bangalore, so I thought this was just like the nonexistent moon that she always sees when we drive out. But she kept looking out and she was pointing to the UB city tower (Bangalore's ode to the Empire State Building) which must in some angle look like the Disney logo to her.

Damini has also been tapping into the fine art of 'jugaad' and the less dramatic faculty of problem solving. This picture says it all I think.

This was her solution when one of her slippers snapped. She had been walking around like this for a couple of days before anyone noticed. We have noticed that she is decreasingly dependent on us to deal with problems, be it mastering the microwave to warm her food, to using her headphones to hold her hoodie in place.

Academically this has been the year of math. After years of stagnation, the gestalt has finally happened for carry over addition, subtraction and multiplication. Not only has she “gotten it”, she is tripping on the new found ease with these concepts.

The cherry on the top of this sundae really is discovering humour: there are the 'fart jokes' we have to laugh at, then there are these really funny one-liners that completely take us by surprise. One day after yoga, I asked her what she did in her session. She said, " we did, surya namaskar, cobra, tummy sandwich, puppy pose, then we started 'om-ing'". On another day she told us "I am therapist, dimaag (brain) ka doctor". Then one day she decided to go to school like this:

Inspired no doubt by this:

Bollywood actress Katrina Kaif in "Kala Chashma"

Somewhere all of this is contributing to a growing assertiveness and a new depth in her social interactions. We find ourselves increasingly participating in activities that she has decided on. That's how we found ourselves having 'picnic' on our family room floor, on newspapers spread out, and desperately fending the dogs off.

And while "Hi, it's my birthday" is still her opening gambit, conversations are becoming increasingly current and situational, and last many more sentences.

Considering all these leaps she's been making, I think it's only fitting that she has a new idol. Yes. Move over Shahrukh Khan, you've been replaced. By a female (at last!). It's Alia Bhatt, and it is being demonstrated very differently. We draw Alia, we write letters to Alia, and we build fantasies of Alia visiting us.

So Alia, if you ever read this, there is cake and biryani and ice cream waiting for you here.

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