Almost Grandchildren

Vikram Singh Bhandari has been our Man Friday for nearly 12 years now. He knows more about our house than we do and he runs it with a professional's skill. He reminds us about which bills are due when, scolds us for leaving lights on when we don't need them, teaches our foreign guests how to make chapatties and makes sure we never run out of anything. He is a brilliant cook (he makes tacos, eggplant parmesan, bread and baba ganoush like a pro), an astute observer of human nature and especially gifted with the elderly. He says his dream is to one day open a vridh ashram (a home for old people).

But right now, it's the young people he's brought into our lives I'm thinking about. Vikram and his wife Sarita have two ridiculously cute children - Vijay and Lakshmi - who live in the flat upstairs and have completely stolen  our hearts. It's like having grandchildren. They scamper in and out of our days like little mice, giggling and wheeling through the living room and into the kitchen and back around again and we all sit at the table and just watch them for the sheer pleasure of the watching. They are so small and so full of life. They tumble onto the couch and off it onto the carpet, pushing each other and laughing and we feel our spirits rise for no reason we can name, just for the joy of being in the same room as them.

They make us glad to be alive, glad to be sharing the earth with them, glad for the privilege of being part of their growing and learning and pure being.

Everything that lives is holy: life delights in life. William Blake

Take the Knowledge and RUN

Last week I attended a conference on Autism in Delhi. It was a remarkable gathering of some of the best-known researchers and practitioners in the world and the presentations were - almost without exception - of a very high order. I learned so much about how to recognize autism spectrum disorders, ways to work with children who have it and the potential these children have, especially with early and skilled intervention.

It was a pleasure to listen to the different speakers, each so expert in her (they were almost all women) field, each so articulate and persuasive about the importance of starting early and working intensively with children to help them develop their full potential. More than anything else, theirs was a message of hope, of belief in the power of children to change for the good and to develop the ability to communicate.

Yet, there was something which made me uneasy about it. Maybe it was the fact that it was funded by the Indo-US Science and Technology Forum, a government to government enterprise whose mandate seems to be to increase Indo-US business ventures. Maybe it was the "disclosure" in one of the speaker's presentations that she was co-author of a book on the methods being presented in the conference from which she received royalties. Maybe it was another speaker's suggestion that organisations in India should apply for funding to get some of them to come here and train our people.

I'm not sure.

Some of those experts have developed beautiful new tools and approaches to working with our kids which are tested and found to be almost miraculously effective in helping children to communicate both through speech and non-verbally, to manage their emotions and deal with their sensory processing problems. But those tools and approaches are copyrighted and very expensive. You have to be trained to use them and training is also very expensive.

I know the professionals who spoke at the conference are caring, committed people who want to do their best for children with intellectual disabilities. But I also know that Autism is big business and that India is a big market. And sometimes, when we weigh what's best for children against standards and copyrights and the cost of testing and research, the waters get murky.

My friends Vibha Krishnamurthy and Anjali Joshi put it all in perspective with their presentations which detailed the realities we work with here in India: the enormous numbers of children, the lack of trained professionals and the inability most organisations have to pay for the expensive new approaches.

I know research isn't free and that people work very hard to develop the amazing methods which, years later, we all just take for granted. But I also know that having a disability is already unfair enough without adding not being able to afford the best therapy to the mix.

So I'm interested in a little piracy, a little guerilla action, a little heist wherein, with some diversionary tactics and some well-planned strategy, we grab the knowledge and run . . .

A Road Accident in Delhi

There I was, walking along on Max Mueller Road in front of the India International Center in Delhi, minding my own business, when I heard a terrible screech, a thud and then loud shouts. I actually saw the child on the bicycle hit the ground, though I missed the moment of impact and the preceding events which would allow anyone to assign blame.

The man at the wheel, however, didn't pause for a moment. He leaped out of his car and strode over to the child, now surrounded by passersby trying to lift him up and carry him to safety, and started shouting at him: "Are you CRAZY? What were you doing?" Not a single question about whether he had been hurt, not a gesture of concern or comfort. No. Straight into accusation and rage.

The crowd reacted as one. His rage was nothing compared to theirs. In a moment, his mood changed from angry combativeness to fear and defensiveness. He rushed back to his car and tried to make a quick escape.

But the crowd was having none of that. They surrounded the car and banged on its sides until he pulled over and got out again.

. . .then he was instantly besieged.

He pulled his ears, he argued his case,

while the child, still dazed, sat on the curb and gazed up in amazement at the chaos swirling around his head:

Finally, someone called the police and the errant (or not, who knows?) driver turned to face the stern eyes of the law:

I was down on the ground, talking to the child by now. He had a cut on the side of his head, but he said he was fine. The arrival of "the law" had stunned him into silence, but the crowd was calming down and a second policeman was busy dispersing everyone.

The driver begged forgiveness

and we all moved on: angry, ashamed, relieved . . .who can put it into any coherent form? The helplessness, the randomness, the uncertainty of being a creature in this crazy, heartless world, where a life can be smashed to the road in a second, like a fly on a wall, like an ant on a footpath.

Heaven help us all.

The Good Shepherd

I have "known" this man for the past 20 years, but it is only in the past 18 months or so I have truly become aware of him.

He is a shepherd in our neighborhood and one meets him, literally, everywhere. He roams in and out of the small lanes and pockets that dot the area, keeping track of his animals. At night I have met him sometimes as late as nine, still searching for that one lost beast, not able to eat dinner or sleep until he has found it.

He is a tiny man - maybe a little over 4'10" -  because of curvature of the spine. He walks all bent over, carrying a stick and wearing the same clothes, day in, day out. He's been a fixture in our lives, but I have never spoken to him until recently, because I always assumed he was deaf.

Now I can't even recall what made me move past my assumption, but one day instead of just passing him by with a smile and a friendly nod, I stopped to try out a little sign language I had learned from Nirmala and some of the other special educators.

"How are you?" I signed.

He just looked at me quizzically.

Then I made the A-OK sign, looking quizzically at HIM.

Then every day for the next few weeks whenever he saw me he would smile broadly and do the same sign back to me, often laughing at the same time.

Then one day I happened to have my camera when he was sitting resting at a building site. I motioned to ask if I could take his photo and he smiled beatifically which I took to be a yes. A few days later, I got a print made and the next time I saw him I gave it to him.

He was thrilled, and he told me so. The words were garbled and impossible to understand, but he was clearly speaking to communicate.

I asked him if he could hear and he nodded, then pointed to his mouth and made signs to indicate that the problem was there.

That night I met him after nine, he was very agitated and upset. He pointed at the moon, gestured the number three, took my wrist and pointed to my watch and made motions that seemed to be for milking a cow. Had he been searching for three hours and still hadn't found the cow? He tried to speak as well, but I couldn't understand him.

We parted in some frustration, but mixed, on my part, with elation and chagrin. It's exciting to think about getting to know this man who definitely has a lot to say, but dismaying to think of how many years I have been excluding him from my life and my world.

I've got a long way to go.

All My Life's A Circle

Everybody hula-hooped as kids, right? And we were all so good at it, right? Like flawless?

So what happened?

I decided hula hoops would be a great thing to introduce at Latika Vihar, but I thought I'd better get back in practice myself first. So I went to the toy store in Dehradun to buy one. To my dismay, all they had to offer was one that came in six pieces and had to be assembled! Not only that, it was very small.  Counter-intuitively, the bigger it is, the easier it is to keep up. I tried to find one when I was next in Delhi, but they too had only the dismantle-able kind.

Not to be defeated by details, I started practicing with the tiny thing but didn't get very far. It really was small.

A few weeks into my project I had to interrupt it to go to Bangalore and then Chennai where I visited with my old friend Shaila Shivdas. While there we happened to visit a book/toy store which had PROPER HULA HOOPS for sale! I was tempted to buy several, but decided to settle for one because I was a bit worried about how I would get it back on the plane.

Shaila, who had once worked for an airline, said they would probably make me check it in, but I was determined to try my luck at getting it accepted as a carry-on.

At the airport, I checked one bag and the woman at the counter said "What about . . . THAT?" pointing doubtfully.

"I'm going to carry it on," I said confidently.

"I don't think they'll let you," she said.

"Oh I think they will. But I'll come back if they don't."

Of course, I wasn't so sure at all. But bravado is key when confronting rules.

I moved off toward the security line. Right away I could see what the problem was going to be. There was no way the hula hoop was going to fit through the x-ray machine. As I was standing there, the security woman glared at me.

"That won't fit through the machine," she said flatly.

"To mai kya karun?" I asked innocently. ("So what should I do?")

"Arre! Hindi bolti hai! (She speaks Hindi!)"

She stood up, laughing. "You speak HINDI?"

"Ji haan."

She couldn't stop laughing.

"What IS that thing?"

"Yeh to HULA HOOP hai."

"She speaks Hindi," she called over her shoulder to the other security people, who by now had gathered in a small crowd to gape at me.

"How does it work?"

"Mai aapko dekadoon?" (Shall I show you?)

With that, I dropped my bags and demonstrated a few spins. She was highly amused.

"Sir ko dekhana parega." ("You'll have to show my boss.")

So off we went to meet her supervisor.

"Yeh kya cheez hai?" he asked, clearly unimpressed. ("What the heck is this?")

"It's a HULA HOOP!" I said, newly empowered. "Shall I show you?" Another spin. He gaped, then laughed. "Teek hai." he said. "Jaane do." ("Ok. Let her go.")

By now, the whole security squad was on my side, like a gang of long-lost cousins. They ushered me through, still laughing and exclaiming about the unlikeliness of a videshi like me speaking such excellent Hindi (hey, I'm writing this. I can say what I want.)

I had just gone through to the other side and was repacking my laptop and putting on my shoes when another security guard came breathlessly up to the gate. My champion said apologetically "He missed the show. Can you do it again?"

So once more, this time for the admiring throngs on the other side of security as well, but by now I was losing steam:

And I lost the hoop as well:

But by now everyone was so cheerful and supportive there was nothing but delight:

The hoop made it home safely and will soon be introduced at Latika Vihar. Watch this space for more fun and diversion.

Expertise

Part of being a mother is learning to feed your children. Pregnant, we "eat for two", avoid alcohol, make sure to get in all the vitamins and the green leafies. Nursing, we suddenly realize that breasts have a completely different purpose than the one we've been used to as fetching young teens, and the first few weeks are a comedy of errors and false starts as we deal with a hungry baby and very sore nipples. And then the semi-solids and solids and finger food and letting them make a mess and then teaching them to make cookies and do the dishes and set the table and right on up the scale till those little infants are serving a four course meal with grace and elan.

At each stage, we start out inept, clumsy and a bit feckless and end up experts, authorities, the last word.  When our kids want recipes, it's us they turn to first.

Most of us don't figure on tube feeding in this scheme of things and praise the Good Lord for that.  But for those of us who do, praise the Good Lord again, because tube feeding is miraculous, the sweet little technological answer to a host of nutritional nightmares which must have driven earlier generations of parents to despair.

Moy Moy has had a tube in now for nearly five years and initially, we were completely baffled by it. Everytime we opened it to pour the food down, she would spurt the contents of her tummy into our faces. If she coughed, it was projectile. Sometimes we would pour and nothing would move - the food would just sit there in the funnel. I would be in tears at times trying to work it out.

But now it's hard to even remember those days, so casual and expert we have become. I realized just how expert today when her new tube arrived by courier (we have to change it every six months) and I decided to do it myself.

Sebastian would have been happy to come, but he has just returned from Holland and we have a million other things piled up for him to attend to. Besides, I can do it myself.

And so I did. Sterile technique and all. Withdraw the little balloon full of water that keeps the tube inside her tummy (you attach an empty syringe to the blue thingy at the top and suction it out), pull the tube out (this part takes firm courage), and then insert the new one and put the water in using the same procedure in reverse. It's an amazing little contraption and I just feel so grateful to have it.

And not to brag, but I feel proud of the endless capacity we all have to adjust to new realities and to learn new skills. Because every mother wants to feed her child. We'll do anything to accomplish it.

Masiji

 She looks like a kindly old lady, but she is formidable.

She has very strong views on just about everything and mostly she keeps them to herself, to be revealed at an appropriate moment. That moment tends to be when something else is going on. I used to think this was because she is hard of hearing, but now I am beginning to see a pattern. I think she slips it in under the radar as a test balloon - let's see what happens, she may be thinking. If the reaction is adverse, she can cover it up in the confusion of several conversations happening simultaneously.

This morning at breakfast, for instance:
I am helping myself to fruit (I AM HELPING MYSELF TO FRUIT) and Ravi is saying:

Ravi: I have this interesting . . .

Masiji: Why don't you eat more fruit? I buy fruit; you never eat it.

Ravi: . . . idea.

Masiji: What's the fun of buying fruit if no one eats it?

Mummy looks up, looks at Masiji, then looks at me quizzically.

Me: I'm eating fruit, Masiji.

Mummy is still looking at me trying to figure out what is going on.

Me: Look! (pointing to bowl full of fruit)

Masiji (to the ceiling): Hah! She never eats anything.

Ravi: So I have this interesting . . .

Mummy, to me: What is she saying?

Me: She's saying I don't eat enough fruit.

Masiji: You don't eat enough of anything.

Ravi: . . . idea.

Masiji: Neither does she. I cut a papaya. Well, I have Padma cut a papaya. Have one piece, I say to her. Have two. Ah!Ca! she says. Grapes? NO! I buy all this fruit. Yesterday I went to the fruit stand.

Ravi: We could paint the roof white . . .

Masiji: Dehradun people are too dry. Like sticks.

Ravi: I read an article which says if you do . . .

Masiji: I asked for sweet oranges and you would think I had asked for mangoes in January.

Ravi gives up. Mummy smiles. I eat my fruit in silence.