Wednesday, November 08, 2006

The Beauty of Clouds


When people meet socially for the first time, the conversation inevitably turns to one’s kids. I found myself thinking the other day about how people react when I first tell them that my daughter has autism.

Most people maintain as cautious and neutral an expression as possible. And now that autism is so horrifyingly common in the United States, many respond with “Oh I see, I know so-and-so whose child also has autism.”

Some click their tongues and react with genuine sympathy -- “I’m so sorry.”

When they say that, I sense that it’s not my daughter who has their sympathy. It is me they commiserate with, for being dealt the “blow” of a less- than-perfect child.

“Don’t be,” I reassure them. “We’re both fine, really, we have a lot of fun together.” At which the expression relaxes a bit, even if it retains a shadow of wary disbelief.

And then there are those who display the most unseemly curiosity. If my daughter is present, they may stare at her as though she were an object. They might ask personal questions about her as though she were deaf or had no feelings.

My favorite insensitive question is -- “Will she ever be normal?”

I’ve wished I could reply in all seriousness “I don’t know. What about you, do you think you will ever be normal?”

Jokes apart, I manage for the most part to not get the occasional verbal missteps and insensitivity get to me. After all, I didn’t always know what I do now. I was just as clueless once about how to approach and engage with people who looked and behaved differently.

I understand only too well the fear of saying something wrong, the impatience with annoying behavior, and the reflexive impulse of the mainstream to avoid “depressing realities.” These are the attitudes that contribute to the ostracism of individuals with disabilities. I’ve seen it from the other side.

I know one fellow autism parent who is so annoyed by the constant harping on “disability” that she coined the term “diffability” to emphasize “different ability!”

For that matter, autism parents are not beyond being insensitive -- like when someone compares his “high-functioning” kid to your “lower-functioning” kid. It may be that it's not done out of malice or smugness, just offered as a statement of fact or to make a point. But it can irk if the parent making the point overstates the obvious.

I prefer to dispense with subjective and hierarchical categories within categories. If someone asks me if my daughter is “high-functioning” I simply say, I don’t know. Ask me who she is -- not who she is relative to some other kid.

Here’s something else I’ve noticed. When I mention Divya’s musical talent, people who believe themselves to be well-informed say something like “That’s great! But aren’t most kids with autism supposed to be that way? You know, good at music?”

Now, you can’t fault lay persons for harboring stereotypes, for believing that musical talent is just a side dish served up with the main course of Autism. What irritates me more is the lack of appropriate response from professionals within the system, because it is their evaluations that set educational priorities for kids in “Special” education.

It’s like this. A child in a regular classroom who starts singing or playing piano at an early age is called “gifted.”

A child with autism showing the same potential is classified by professional jargonists as having a “splinter skill.” Which is as good as a euphemism for “aberration.”

With that phrase comes a mindset that guarantees benign neglect. Instead of seizing upon an island of talent as something precious to be nurtured and supported, the system reduces it to a freaky quirk.

In Divya’s case, indulgent stories about her spontaneous and willing bursts of song were often bandied about by elementary-school staff. But this did not make it any easier on me to make them implement simple accommodations to enable her successful participation in choir.


“Aerodynamically, the bumblebee shouldn’t be able to fly. But the bumblebee doesn’t know so it goes on flying anyway.”

-- Mary Kay Ash


I’ve often compared the Special Education system – at least, the one I have experienced – to a belt conveyor moving backward while you are trying to run forward. If you’re walking in the same place, you’re doing well. If your child manages to make progress under the system, she -- and the handful of diligent teachers working with her – are nothing short of heroic.

But as I recently discovered, time and experience do nothing for teachers beyond reach.

At a recent Choir Parents meeting at Divya's high school, I ran into my daughter’s elementary school music teacher. She looked surprised to see me there. I told her Divya’s final year in middle school had been her best, musically speaking. Divya had taken part in the qualifying Regional and subsequent State Chorale competitions with the rest of her class; and taken on a grueling three-day field trip to Chicago where she performed at the Heritage Music Festival. Her group won a Gold ranking.

At this, the former elementary school music teacher shook her head slowly from side to side and said “Noooo… way !”

If my child had been stuck with you as her teacher, I wanted to say, there would indeed have been "no way."
Instead, I managed to smile and say “She really has come a long way.”


“Old age ain’t no place for sissies,” said Bette Davis. The good thing is if you get there via parenthood, you’re already a bona fide Gladiator.

I think I've hit upon the one absolutely essential advantage that parents must arm themselves with to survive the wild and weird experiences of this arena. Is it Strength, you ask? Resilience? Detachment?

Sure, but there is one Uber-quality that feeds all of the above. I'll illustrate.


Shortly after Divya was diagnosed, I visited an older Indian lady from whom I had learned Carnatic (South Indian Classical) vocal music for a while. I knew her to be a kind and magnanimous person. I told her the reason I hadn’t resumed lessons with her.

“We found out a few weeks ago that my daughter is autistic.”

Her face broke into the widest grin. She nodded her head up and down triumphantly -- and then she threw her head back and broke into an enthusiastic chuckle.

"She has autism," I repeated, thinking she hadn't heard.

“Goodtt, goodtt, goodtt” she said, rubbing her hands together.

As you may well imagine, I froze at this apparently macabre display of glee.

Her smile faded when she saw my expression. ”What is wrong?”

“Well, I’m still trying to figure out how to cope with this tragedy,” I said in as even a voice as I could muster. Those were early days, and I was still pretty raw inside.

She looked utterly puzzled. “Why it is a tragedy?” she replied. “You are also very artistic. Artism is goodtt, No?”

I experienced the most insanely hysterical upwelling of laughter, which I stifled with great effort – this poor lady wouldn’t have understood. She became utterly still and contrite after I explained.
But I left her home in a far better mood than I had been in when I arrived. She had reminded me of something I had temporarily lost sight of, which is this:

Humor is the only broad-spectrum antidote to life.

Being able to see the funny side of things closes the gap between a problem and its solution. Or at least, makes the journey more pleasant. It helps you hover above reality long enough so you can perceive it with your head as well as your heart.

Laughter has been a huge ingredient in all my interactions with my daughter – including some of my most significant teaching moments. I found quite early that she had a great feel for the absurd. So I would try to achieve Chaplinesque moments whenever I could to make the learning process fun.

When she was around age two and still pre-verbal, I made up a game in which I would demonstrate a behavior typical of an animal -- which she then had to point to in a book or on a flash card.

To clue her to point to “Giant Panda” I would sit cross-legged on the floor chewing on something twig-like and then slowly topple over and crash sideways on the carpet with my legs still crossed. She would chuckle herself into hiccups and bound over to point to the right picture. She eventually learned to verbalize “PandaBear.”

And no, I'm not going to demonstrate it for anyone else.

When Divya began using single words and small phrases that she had memorized, we entered a new realm of the funnies because of her literal-minded approach to language. I remember how the spelling of new words had to make sense to her. For instance, cousin Ramani’s name became “Roman Knee.”

When she was around six I took her to Saylorsburg, Pennsylvania to introduce her to my Guru Swami Dayananda . We sat in the waiting area for a while where she heard everyone referring to him as Swami Ji . When our turn came, she obligingly curled up in a Namaskaram. He blessed her and rewarded her with a kind smile and an apple.

Later that evening, when I asked “Whom did we see this morning?” she wrote on her magna-doodle “Swami Cheese.”

Her bilingual adventures in language perplexed her elementary school teachers on more than one occasion. I got a call one day to pick her up early from school. “I don’t think she is feeling well,” her teacher said.

When I got there, she was standing by her teacher with an innocent look. “What’s wrong?” I asked, because she looked fine to me.

“Has she had some sort of a problem with her stomach?” her teacher asked.

I was puzzled. “No, why?”

“Well, all day today she’s been saying Enema There, Enema There !” said this teacher looking at me as if I were trying to hide something.

I glanced at the beginning of a wicked smile on Divya’s face and burst out laughing. She giggled along. Her teacher was quite nonplussed.

You see, the little rascal had been saying “Ennamma idhu ” – a Tamil phrase that conveys an edge of exasperation meaning “What are you doing, sweetie.” Something I used with her quite often.

Well, when she tried it out in class with the right inflection, she found her teacher stopped academic work, looked at her with concern, asked a lot of questions she couldn’t understand, and then dispatched her to rest on the bean bag in the classroom. After a while the teacher would ask “Are you feeling okay?” Divya would say Yes, and come back to work. And then the pattern would repeat when she felt like taking a break. This evidently happened a few times before the teacher called me.

Divya obviously didn’t understand why what she said was producing that effect – but she understood she could use it to get herself some extra veg-out time!


“People are not disturbed by things, but by the view they take of them”

- Epictetus


It’s not always possible to find life hilarious. I’m not invincible. Some people make me feel as though I were walking on sand with lead weights strapped to my shoes.

But as long as Divya finds me new things to smile about, I’ll be okay.

I was driving her back from a bike lesson one afternoon, preoccupied with my thoughts and the traffic. We stopped at a light. There is a U-Haul center at that street corner (U-Haul is a move-it-yourself company for people changing homes or shifting out of state). It displays lettering on the side of the building advertising wagons, trailers and hitches.

Divya said “Amma…” and pointed to the building with a grin.

“What?” I said impatiently, not registering anything. Then I saw it. The letter “H” had fallen off. The side of the building read


GET YOUR WAGONS TRAILERS AND ITCHES HERE

19 comments:

P. Venkat ( Kanna ) said...

Chitra,
Excellent and very nice reading. You really have a nice way with words.

Besides the linguistic skills, your resilience is also quite amazing. With a son who has myoclonic dystonia, I think, I can emphatize better.

Venkat

Chitra said...

Thank you Venkat, I'm sure you're more resilient than you realize. It's a learning process. Answers do not always emerge according to our timeline. All the very best !

Anonymous said...

May the tree of life herald an unending season of spring in your lives :)
May god bless u and your wonderful child(I must add , the child is already blessed!)

bilbo said...

hey chitra,
Divya sounds like any other normal ( if there is such ) child. She definitely has a great sense of humor.

loved reading this post of your's.

Incidentally came aross a talk by Dr Watson ( the Double helix guy) the other day , wherein while describing his current work with autism, he mentioned that Rosalind Franklin may have had some autistic disorders.

I spent the entire day reading up on autism then cus while I may not be nobel laureate material yet, I definitely have people problems, especially regarding social cues. ( Don't want this comment to be offensive , so apolpgies if it comes like that ).

I guess what I am trying to say eventually is that normal is how u feel about things. We all have our drawbacks but its just how we make up for em with the strengths we have.

Would love to hear Divya sing some day.

Take care

Superthumby said...

Such a wonderful piece of writing. I wanted to post a comment the moment I read it, but I busy taking printouts and giving it to some well-meaning friends of mine, albeit members of Computers Anonymous.
Will somebody draw a picture of you - bespectacled, typing on a Underwood typewriter, in your basement, while a flock of angels stand behind you admiring your work with smiles littered on their faces?

Chitra said...

Anonymous,

Thank you for your kind words -- I feel blessed as well, to have tapped into such a wellspring of goodwill and emotional resonance.

Bilbo,

I have to say I personally do not consider myself "normal" and after my adventures with Divya -- I cannot help feeling that "normal" might be just a tad overrated ...

Seriously, though, Divya can be very difficult at times -- but I have a funny feeling she probably thinks exactly the same of me. By the way, you were not being offensive at all, I am glad my post ignited your curiosity about autism. And I like your pointing out that you are not nobel laureate material YET... that's the spirit! Keep thinking positive thoughts!

Superthumby,

I can see that you're going to great lengths on my behalf, as you always do for everyone. Thank you. As for drawing a picture of me bespectacled, I still have the one you drew of me several years ago and will certainly pose for another one whenever I feel I'm in danger of becoming too swollen-headed.

Readers, Superthumby is a gifted artist and brilliant cartoonist. But for some inscrutable reason, he wants to hide this from the rest of the world.

shshukla said...

Hi Chitra,

Wonderful piece, it was studded with some genuine humor and valuable lessons meant for parents...all kinds.

thanks for this lovely piece of writing. I almost missed your note on group informing about this blog. Thankfully, I was still in time.

love,
Shuchi

MoodsAndColors said...

Hi Chitra
Came here through Priya's blog.
Every mother has to learn and find ways to bring up her child. Afterall motherhood is not "taught" anywhere...it's your own perception entirely.I think every child has her own idiosyncrasy and the mother has to learn how to deal with it.
As for the primary teacher...many of them cannot foresee beyond the caterpillar...the colours and flight of butterfly eludes them.
BTW I loved the humour part.

June said...

Chitra,

You have said what needs to be said- in your own grand style..words which exude strength, honesty and humor!

A truly powerful blog...leaves one with so many emotions..on so many levels..

June

Chitra said...

Thanks for stopping by, Moods and Colors. Your comments reminded me about a video titled "Animal School" that can be viewed at the site raisingsmallsouls.com. Just click on the new link that I have added. Check it out --it's quite brilliant.

Neeluking said...

Interesting stuff. I am now a regular reader of your blog.

Neelakantan

Anonymous said...

Hi Kala-Finally I had the free time to finish reading this lovely article. Laughter brings one close to God! Divya is your vehicle and instrument to get to Him! How lucky! Jokes (Ha! Ha!) apart-this article brought me rolling close to God too! Love J Akka

dharmabum said...

orrey azhugaiya varudu inda article padichu...not out of sadness though, but out of the joy of witnessing your spirit & courage. it in an inspiration...

"I’ve often compared the Special Education system –..."
from your article, i assume u r talking abt the US of A. if its like that there in the west, inga namma oorula ellam people don't even know about it. and if they do, they mostly shy away and pretend to ignore it. sad state of affairs...

Andria said...

I really enjoyed part about the music teacher in your blog. Reminds me of my mom's story about how the nuns in school instructed her to only *mouth* the words in the school choir performance. To this day, she is terrified of formal public speaking. I think my grandmother may have been glad to be spared the embarrassment, because she was herself terrified of the sharp tongued comments of other people. It is a gift for you and Divya to be able to meet narrow views with civility and humor. Keep it coming!

Andria said...

Hi Chitra,
I thought this news would interest you, though you've probably already seen it.
Researchers to Create Autism Databank

Chitra said...

First time here! Wonderful post. Hugs to you and Divya!

There is something that I want to email you about. Will that be alright? Pl let me know.

Chitra said...

Thank you for stopping by, Chitra (I feel like I'm talking to myself!) -- sure, feel free to email me any time.

Mougli said...

Extremely well written.Really enjoyed reading all your blogs.How can i get your e-mail ID.

Chitra said...

Hello Mougli, many thanks for stopping by. You can email me at nokturnelle@gmail.com

I haven't been able to add to this blogspace these past few months due to overwhelming personal preoccupations -- but I must say I'm freshly motivated by the recent feedback -- thanks again!