Catch Them Early!

Most people are fascinated by multiple births. Twins, triplets, quads - so exciting! But to obstetricians, pediatricians and other child development specialists, multiple births spell trouble. A woman expecting twins is by definition a high-risk mom; the more babies, the higher the risk - both for the mother and for the babies.

So when Shefali arrived at our Early Intervention Centre in Dehradun, India, with her four babies, we were amazed that only one of them had difficulties. Lakshi was the smallest of the four and the last one born. The ultrasound had detected three children, so her arrival was a surprise no one was prepared for. A month premature, she weighed well under a kilo at birth and she didn’t cry immediately.

Any one of those facts - multiple birth, premature, low birth weight, delayed birth cry - should have prompted the obstetrician or the pediatrician to advise the mom to visit an Early Intervention Centre, but in India, such advice is rare. Lakshi was over seven months old before her mother started worrying about her development and nearly a year before she learned of our existence.

Our pediatrician diagnosed Cerebral Palsy with associated developmental delay and Lakshi was enrolled in our intensive mother-and-child program whose goal is each child’s  holistic development. An inter-disciplinary approach ensures that children learn social skills while doing physiotherapy and language development while working on fine-motor skills. Every activity we do with the children has a purpose, though all the children know is that they are having fun.

Shefali was a poster-mother. Her energy and commitment to Lakshi’s growth was an example and an inspiration to both the other parents and to the staff. Nobody in the EIC had anything like the demands on their time that four babies of the same age presented, yet Shefali never seemed tired or cross or impatient. Other mothers sought her out for advice and direction - another carefully nurtured feature of the EIC’s approach. Mothers Support Groups are an invaluable resource, especially for new moms just setting out on the adventure of raising a child with special needs.

And Lakshi’s improvement - slow, but steady - was also inspiring. Other mothers looked at her and found hope for their own children. By the time she graduated from the EIC at age 6, Lakshi was walking with the help of a rollator, speaking in short sentences and more than eager to join a mainstream school like her brother and two sisters.

Finding that mainstream school has been the challenge. The one her siblings attend pleaded an inaccessible environment for a child with physical difficulties. The one she finally enrolled in refused to allow her to participate in any activities outside of her classroom because that would involve someone helping her to move. When her parents learned that she was being left alone in the class, with no light and no fan, they withdrew her.

Attending Latika Vihar - our inclusive neighborhood children’s centre - gives Lakshi the chance to be with other children who accept her for who she is. The fun of being with other kids, enjoying normal activities like art and craft, music, pottery and games has bolstered her self-confidence and restored her self-esteem. That’s important, because her mainstream education experience is still an uphill struggle.

Now she’s has joined a high-end government school meant for children of government officers (her father is one). Legally, the school cannot refuse her admission, a fact which the headmistress refers to over and over, making it clear that if she had her way, they would never have taken her.

Early Intervention is only the beginning of a long, exciting journey to change a society which is afraid of differences. We are hard at work trying to win over the teachers and the management of that government school, trying to create a place for Lakshi which is hers by right, trying to build an inclusive world, step by step, by little and by little.

Photo Credit: Muir Adams

Tis The Season . . .

School admission time rolls around faster every year. For some reason, I am besieged each March/April with requests for help from parents desperate to get their children into School X, Y or Z. I am not influential and nobody owes me any favors, so I'm not sure why people keep coming to me. The word, I guess, is desperate. But I put my heart into it because the people who come to me are, typically, poor and even less influential than I am. I write a good letter and sometimes my appeals actually work - I suppose because they are different from the ordinary ones:

"Sachin's parents are not rich or important and it's unlikely that they will ever be able to make a big donation to your school. But they are good people with fine values. They will insist that Sachin play by the rules and they will do all they possibly can to reinforce what you teach him everyday in the classroom. He will grow up to be a model citizen who will work hard and pay his taxes. He deserves the best education he can get because he's going to support his parents and make this country a better place to live in for all of us."

Sachin got in. The principal at the school his parents had set their hearts on had a vulnerable moment and my letter touched him. He gave Sachin a chance and Sachin hasn't let him down. He really is a model citizen in the making, a boy his school will be proud of one day.

But there are so many other children I have written letters for who haven't been admitted, children who are no less worthy, no less precious. What about them?

I'm feeling it particularly this year because several of the kids I've been asked to champion are kids with special needs, kids for whom the decks are already stacked against them and who need a break more urgently than most.

Kirti, for example.

Kirti is one of our EIC stars. She is one of quadruplets and her parents are marvels of the universe. We are all simply in awe of them. Three of their four quads were born normal. They beat the odds. Kirti didn't. She was born with Cerebral Palsy and a host of difficulties.

But Early Intervention helped her through the toddler years and slowly but surely she advanced to the point where her parents believed she was ready to go into a mainstream school. The Kendriya Vidyalaya they selected had to accept her because of the Right to Education Act, but that didn't mean they would welcome her. In fact, the Headmistress at the school told them clearly that they were making a mistake, that she didn't belong with "normal" children and that it wasn't going to work at all.

Kirti is only one child. One of many. There is Siddharth in Bangalore, a child with low vision and high intelligence whose parents are beginning to despair because they can't find a school willing to celebrate the special boy he is. There is Amrit here in Dehradun whose only problem is that he needs a little help to get around. So many children - brave, valiant, eager children who want to learn and are willing to work hard and put their hearts into their studies - are still being rejected because of who they are, because of how they learn, and I, for one, am tired of it.

I am tired of a system that recognizes only one kind of student, of teachers who are prepared for only one kind of child, and of tests that cater to only one kind of knowledge. The world is VAST. The ways we learn are INFINITE. Why do we want to limit ourselves? Why do we even think of rejecting the Kirtis, the Siddharths and the Amrits?