Early intervention services to children with Mental Retardation Center Foundation Rehabilitation of children with developmental delays/ mental retardation :: Coverage in Print media for 2004

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House of the hope

Rather than settle down to a typical retirement, Jaya and Krishnaswamy went on to become pioneers in special education, write Smriti Gupta and Mukta Hedge.

It was always clear to those who knew Jaya and V. Krishnaswamy that the couple would not settle down to a typical retirement. Krishnaswamy, now 79, retired as air vice marshal in 1988 and returned to hometown Chennai after 30 years, only to immerse himself in his work as a consultant with the Sanmar Group of Companies. And Jaya, 71, gave up her job as the headmistress of a school in Delhi to come back with her husband. She had many ideas, one of which changed of couple's life forever. And the lives of thousands of children. Says Vijay, eldest of their three sons, "Since my parents have always been an extremely active couple, we were sure they would not settle down to gentle pursuits. But none of us were prepared for something of this magnitude."

Vijay is talking about the Madhuram Narayanan Centre for Exceptional Children (MNC), set up in 1989. It is the first institution in India devoted to an early intervention programme for children with development delays and mental disabilities. As we walk into the school's open courtyard in Chennai's T Nagar, a group of children are standing in a circle, playing a game, sheltered by trees. It could be a tiffin-break scene in any kindergarten except every child has one teacher standing behind protectively, and that teacher is the mother. The school insists in the participation of parents. "A mother is a child's natural teacher. And here we train mother to become co-therapists."

When the Krishnaswamys started their retirement, they had no idea they would become pioneers in the field of special education. Jaya, who had done a paper on special education during her B Ed, had always been interested in the subject. After coming back to Chennai, she had a chance encounter with Vasanthi Pai, president of the Federation for the Welfare of Mentally Retarded Persons. "With her encouragement, I presented a module based on a computer programme to train disabled children at a 1987 UNICEF workshop in Delhi," Jaya remembers. There, Prof P. Jeyachandran, a renowned expert in mental disabilities and principal of Bal Vihar, a training school in Chennai for teachers working with special children, decided to guide Jaya while she wrote a computer programme called Upanayan, which aids therapy of mentally disabled children. The Sanmar Group financially supported the research and then the establishment of MNC.

Today, Upanayan, a Sanskrit word that means 'to lead along' is the main reason why MNC is considered a pioneering effort. "It identifies 250 skills in children relating to motor abilities, self-help, language, cognition and socialization," says Krishnaswamy. It is also the first of its kind written to suit Indian cultural needs, taking into account feeding and toilet habits and other cultural variances. It has also been programmed for children with various mental disabilities associated with conditions like epilepsy, autism, cerebral palsy and other disorders, so that a database is now available for children with differing challenges.

Details of each child are continuously fed into the database, helping teachers judge performance and ability levels better and accordingly individualize therapy. Partnered with early intervention, this gives far better results than just therapy, according to Vimala Kannan, principal of the school. MNC works only with children up to the age of five-and-half. No child within this age group is turned away. "We strongly believe intervention in early years, when all children are quicker to learn, is crucial for these special children," says Kannan.

Doctors agree with this philosophy. Dr. V. Viswanathan, a consulting paediatric neurologist at Kanchi Kamakoti Child's Trust Hospital in Chennai, often recommends MNC to parents. "I refer around four children every month. The youngest was three months old."

The toughest part of the job, though, is counseling new parents, which Jaya handles. "Most mothers break down frequently, and in the beginning I suffered too. But slowly I learnt to detach myself." She talks about the difficulties of 18-year-old mothers, many of whom are villagers, who don't know anything except that they have delivered a child who is not like others. "The positive part is that after repeated sessions, they cope better."

Working mothers are asked to take a fortnight off to learn the teaching techniques. Some parents even relocate to Chennai. Jyoti, in her early 30s, is a bright, positive parent who feels her life took a turn for the better the day she first came to MNC in 1990. Her son Sibbi Siddharta was a year old then. Originally from Vilupparam, five hours away from Chennai, she commuted once a month to bring him here. Due to an overdose of anaesthesia, he faced a learning disability. Then, her husband got a transfer to Chennai on compassionate grounds; they moved in 2000. "Since then, we go to MNC everyday," says Jyoti with a big smile. "Though we did waste one precious year chasing doctors who didn't really tell us anything."

Retired people have so much to offer

At MNC, parents visiting from other towns are taught methods that can be used at home. And the organization has also helped children in other countries, including Sri Lanka, Malaysia, Bangladesh and in the Middle East. The school itself functions from 10 am to 4 pm (Monday to Friday) with a couple pf hours allotted for each ago group, with approximately 150 parents and children coming in everyday.

The staff of 21 comprises trained teachers, an occupational therapist, special educators, and physiotherapists, besides helpers. The Krishnaswamys are at the centre the whole day; while Jaya does the counseling, parent training classes and brainstorms for new ideas and schemes, Krishnaswamy handles administration and financial matters.

Recognising that more people need to get involved in early intervention therapy, MNC also holds training programmes for teachers and institutes. It has successfully trained over a hundred teachers who are the core trainers from about 50 institutions all over the country. And 15 special schools have been set up with technical support by MNC in Tamil Nadu and Andhra Pradesh. Increasing public awareness has been the biggest reward, says Jaya. "Slowly, the children are becoming a part of the social fabric."

So far, over 2,700 children have been educated here over the years. Though the Krishnaswamys themselves do not take a salary, funding is a perpetual problem. The annual budget amounts to around Rs. 20 lakh, which includes a government grant and generous donations from the Sanmar Group. The expense incurred on each child works out to approximately Rs. 15,000 per year. The couple, though, remains upbeat about their work and retirement is not an option. Krishnaswamy says, "I always tell people that if they want to keep fit as they grow older, they should look at community service. It stops your ageing process by at least 40 per cent. Besides, you do something worthwhile.

Jaya is equally committed to work. "I feel when people retire, they don't look at other options besides the work they've done all their lives. Retired people have so much talent and experience to offer. When we are young, we might have had the ideas but responsibilities stopped us from going ahead. Now is the time to do something."

Featured in Harmony Magazine
October 2004.

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The Children of Deep Thought

It's a first of its kind in India: a computer software for early intervention in mentally disabled children

Tucked away in Chennai’s T. Nagar is a yellow double-storeyed school building. The ground floor houses a school; the first floor too is a school but it’s one that dispenses hope as much as learning. Parents of mentally disabled toddlers come here when everybody else has turned them away.

Under the benevolent helmsmanship of former air vice-marshal V. Krishnaswamy and his wife Jaya, both close to 80, a small and dedicated team at the Madhuram Narayanan Centre for Exceptional Children (MNC) trains and educates children of age 0-6 with various forms of mental retardation.

The Krishnaswamys not only train the children but also the parents so that the process of teaching continues at home. Every parent is trained to become a co-therapist.

The electrical engineer and teacher were coasting towards retirement when a chance encounter with another social worker gave them ideas about how to spend their autumn years productively.

As a first step, the Krishnaswamy couple tried to computerise an American rehabilitation programme for children with mental developmental problems. After studying it, Jaya soon realised that the programme, in its original shape, was unsuited to Indian conditions. She rewrote it, and that’s how Upanayan was born thirteen years ago.

This computer-aided training publication revolves around an early intervention programme for children with symptoms of mental retardation. It was the first time a programme based on Indian conditions and child-rearing traditions had been developed. Also, it was the first time computers had been used to facilitate such a programme. Today, the programme has identified 50 basic skills in five development areas including cognition, language and motor skills.

MNC was set up in December 1989, with the support of Indchem, a Sanmar group company, to disseminate the programme to a larger audience. Within a year, over 75 children had been enrolled, and about 2,700 children have since passed out of MNC. The school is free, and the Krishnaswamys themselves don’t take any salary. Even the staff of about 20 special educators work on honorariums. MNC runs on grants from the government and the Sanmar group.

They not only train the children but also the parents so that the process of teaching extends to home. "Our aim is the development of the children. But equally important is the empowerment of parents. They too are mentally shattered," says Krishnaswamy. Every parent is trained to become a co-therapist and they eventually become teacher aids for other children here.

The centre, which works between 9.00 am and 3.00 pm, functions at three levels—infant stimulus, pre-school and preparation for functional academics. "Our programme’s chief feature is that it’s observable and measurable," says the couple.

In their efforts to improve the programme, they’ve now launched a tabulation process whereby every student’s data relating to levels of training, reactions and development is documented and computerised, providing invaluable research material. They also plan to launch software for training 4-plus children. Young software professionals and students work as volunteers for this work.

"There are about 60 lakh mentally backward children in the country," points out Krishnaswamy. "There is no way to teach each one. We have to disseminate information for maximum impact." Towards this end, MNC has motivated organisations like Southern Railway, bhel Air Force Wives Association etc to start early intervention centres, which MNC monitors. It has also translated its programme into regional languages to maximise its reach.

For more information, contact Madhuram Narayanan Centre for Exceptional Children, 126, G.N. Chetty Road, T. Nagar. Chennai 600017; Ph: 044-28281042

— Vaishna Roy
Featured in Outlook India
December 2003.

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