Thinking of Luck And Narrow Escapes
By Jo Chopra
As advocates for children with special needs, one of the things we keep discovering is how insightful and observant children are about each other, how much they notice and how much they connect.
On my frequent walks with Moy Moy, I often saw a little girl in my neighbourhood. Moy Moy is 26 and uses a stroller to get around. She is non-verbal, beautiful and beguiling. People are drawn to her, and Gia was no exception. At first, she would smile at us as she passed by; gradually, she felt comfortable enough to stop and talk.
She was full of questions, and each one was about Moy Moy. Gia wanted to know why she couldn’t walk, what had happened to her legs, whether there was any medicine to make her better and whether she would ever be okay. But mostly she wanted to know why Moy Moy couldn’t talk. She asked me questions from every possible angle, almost as if hoping to catch me out, find an inconsistency, prove to me that I was wrong and that Moy Moy really did know how to talk.
Finally, I went to her home to see what was going on. It turned out that her little brother, aged 2 and a half, was also completely silent. Gia was only 9 herself. She had no knowledge of child development and no idea when meaningful speech emerges, but somehow, intuitively, she knew that something was wrong. She made the connection that my having a daughter with difficulties might mean I could be helpful.
Gia’s mother, Nisha, is a single woman working as a domestic servant in a house in our neighborhood. Her employers had given her a squalid, cramped room in the back of their compound to live in and told her that her son was not allowed to play in the garden or come into the house where she was working. She had no choice but to lock him in alone for hours each day.
When I met him, I was struck by his intelligence and sense of humor. He watched me carefully and warily, then smiled in a shy, startled way when I made a funny noise. But he didn’t utter a single sound. Nisha confirmed what Gia had already told me. Since Kartik was born, he had not spoken — yet he was clearly not deaf. This kid needs an assessment, I thought to myself.
A few days later, our team assessed Kartik and the diagnosis couldn’t have been simpler: his problem was simply a lack of human contact, too few opportunities to play, too little chance to communicate. Left without intervention for just a little bit longer, Kartik might well be one of the millions of children in India who, though absolutely normal at birth, nonetheless acquires a disability through neglect and lack of stimulation. Our prescription? Latika Vihar, two hours a day, five days a week.
Latika Vihar is our after-school children’s centre. It’s a place for children to explore their creativity and have fun. There’s no competition and no pressure; just plenty of opportunity to be whoever they dream of being. Because of the emphasis on acceptance, tailor-made activities and individual freedom (the only ground rule at Latika Vihar is kindness), it’s a haven for children with special needs. Too often they feel threatened by the rough and tumble world of the typical playground or overwhelmed by activities they don’t understand and can’t participate in without support.
Six weeks later I met Nisha on the street. Kartik had been attending regularly, but I wasn’t expecting much. These things take time. Nisha leaped off her bike, however, her face alight.
“He’s started talking! He says Mama, Didi, chai, and roti now. What did you do? It’s like magic.”
What did we do? I went to Latika Vihar to find out.
I found Kartik with Pooja, our special educator. In spite of having seven other children to care for, she managed to stay aware of what he was doing and what he might need. When Kartik first arrived, she told me, he would sit quietly on his own, only truly secure when Gia was in sight. Gradually, she won his confidence and he began venturing further out to see what other children were doing, eventually deciding it was more fun to play the way the other kids did.
Parallel play is an important step in a child’s development. Kids are totally absorbed in their own thing, but still like the idea of another child nearby. Kartik was right on time – almost 3, he was doing just what he should have been doing.
But Pooja knew he needed to move toward a more interactive style of play, where turn-taking, sharing and communication are also important.
So she helped him test the waters and guided him as he took the first steps toward being with other children. At first, he was hesitant – needing her almost constant presence – but gradually, he gained confidence, learning that he could still be safe, even without her right beside him. Gradually, he began to make friends on his own.
As for me, I just can’t stop thinking about luck and narrow escapes. How many more Kartiks are there out there? How can we reach them? When it is so simple to help them find their voices, how can we allow ourselves to fail?
But let’s not forget young Gia. She was the one who first identified her brother’s problem; now she is beginning to see that she has needs, too. Her eagerness, one could even say desperation, to join Kartik at Latika Vihar almost breaks my heart. Everything about it enchants her: the dance, the music, the pottery, the arts and crafts, the books, the toys… all the things she has never had which, suddenly, are available. She can’t quite believe her luck.
Ultimately, whatever happens for Kartik has to happen for Gia, too. No child lives in isolation. Each one is part of a family, part of a community, part of this world.
The wonder and excitement Gia feels at Latika Vihar is the way forward for Kartik. As Gia experiences the joy of discovery, Kartik will feel safe enough to trust it himself. Her voyage will take her in one direction; his may be quite different. One isn’t better than the other. We just want to see both of them unfurl their sails and embark, engaged, confident, free.