Special spaces for India’s special children Shristi in Bangalore is a part of India's response to the needs of special children.
In a way, nature is even handed: about 3% of all children --across countries, races, religions and cultures-- are 'special'. They arrive on Earth with their unique gifts but mainstream life has little time for them and considers them a problem. While physical debilities become reasonably obvious, identifying those that we have learnt to call 'special', is a task strewn with many barriers. No clinical tests exist to diagnose different mental builds. Over time, these differences need to be 'inferred'. A few among them, like those with Down's syndrome [--or mental retardation] are easier to pick. When it comes to autism however, diagnosis gets complex, because autism spans a wide spectrum: from the barely discernible to the well-defined, with several shades in between. For a long time, these special children in India were denied their special needs because of adult ignorance, social taboos, parental embarrassment and lack of 'specialists'. In the last 3 decades however, India has mobilised itself in its own ponderous, incremental way to address the requirements of these special citizens.
India's response to autism, is a saga of individual endeavour with little support from the state. In terms of care and concern, this peoples' activism has served society's needs, in ways that will rival those of wealthier countries. We survey the scene through the work of a small service in Bangalore called Shristi Special Academy.
Mothers' guts:
Not surprisingly, it is the mother who first senses if her child is unusual. No, she doesn't at once accept the fact and call her child 'special'. That comes later. She first goes through the gamut of self-pity, denial, embarrassment, prayer and despair. And then comes the realisation that she had a problem that won't go away. Action follows.
Most of the action that governs the autism scene in India today, seems to have begun around 30 years ago. In Hubli, Mrs. Vaishali Gore realised in 1975, that her son was mentally retarded. She trained herself to care for him, and began training other parents from 1982. Mrs. Merry Barua in Delhi in 1982, came to serve the cause of parents of special children, because she too had a special child. In Bangalore several parents came together in 1978 to form the Karnataka Parents' Association for mentally retarded Citizens. [KPAMRC].
But of the three young women who founded the Shristi in Bangalore in 1995, only Suchita Somashekhariah was a mother and her children needed no special care. But she had been driven to this calling because a cousin's child had been special. In 1984, a road accident had killed that child and a few close relatives. Suchita reacted by joining the course for special educators at KPAMRC. Meena Jain was raised in Mysore in a family that had fallen to hardship after her father had died early. "We were poor. Mother worked hard, raised and educated us. But that didn't stop her supporting a few children poorer than us," says Meena, by way of explaining how she has committed herself to serving others. For Sharon Watts too, her mother was the inspiration. Sharon was a bright student and her father wanted her to be a journalist. "But Mother made up my mind without ever trying to influence me. She was a tireless, smiling nurse in Whitefield. Her obvious happiness and contentment struck me deep," says Sharon.
Everyone's darling
Neeraj is Merry Barua's only child. Twenty years ago she discovered he was autistic. Looking around, she realised, there was no organised counsel or help. So Merry took herself to the USA and learnt how to care for him. How? She closeted herself alone with her son in a room for 11 long months. That helped her understand this puzzled visitor from another planet
In 1991, she started in Delhi, the sub-continent's first school --'Open Door'-- for special children. Since then her reach has grown nationwide through her resource centre, Action For Autism.
Merry Barua is widely acknowledged around the world as a pioneer and tireless worker in the cause of autists. She is an educator, communicator and social and political activist. Above all, she is an inspiring role model for many despairing parents.
When she was a baby, her grandmother would call her, 'Meri Jaan' ['My darling']. And that's how she got the unusual name, 'Merry'. Her grandma had been quite prophetic. But not entirely-- she didn't know Merry would become more than just *her* darling.
For close to 30 years, parents in Kolkata have been running the Indian Institute of Cerebral Palsy. Learn more about this private and volunteer initiative by unknown Indians, and maybe support them. Here's the link.
'It's no disease, so there's no cure':
The three undertook the special educator's course at KPAMRC. When they met in 1995 to start Shristi, they had 26 years of work experience between them... and nary a penny. Sometimes it helps to be money-unwise, and clue-less about costs, as many of the GoodNewsIndia heroes featured at this site are. They seem to have an unconscious faith that in this country, good causes will find the support they need.
They rented a small house in Basaveshwara Nagara in Bangalore and put up a sign. Soon, businessman Bipin Avalani drove up and handed his son Hemal over. Hemal, then 16, could not even clean himself and needed constant attention at home. The girls had their first ward. Bipin gave them Rs.5000.
Shristi fanned out to schools nearby to spot children needing their care. What they saw would move even the hard hearted. There was no programme to sort the children and grade their needs. They were often mocked and treated as though they were insane. Some of the hyperactive were even tied to chairs. Thirty years ago, for a struggling India, the needs of non-ordinary people was a peripheral issue.
The central difference in special people is their difficulties in communicating, associating and comprehending a world we, the 'normal' have constructed. Within that difference, there is a whole range to the difficulty; from the marginal to the extreme. Autism is a catch-all phrase to a wide spectrum of disorders. It has in fact been called the Spectrum Disorder.
It is a lifelong predicament. Since it is not a disease, it cannot be 'cured'. But most, can be trained to care for themselves. Autists are often very creative and compassionate. They respond to music, colours, dance and being given small responsibilities. The trick is to find what a child is good at, for it is certainly good at something.
'Just in time' help:
Bipin Avalani's Rs.5000 had seemed like a windfall to Shristi's founders. After all, throughout their earlier work-life of 23 years between them, they had seldom earned more than Rs.800 per month. But reality caught up with them soon, as more and more parents brought their children over. Driven by bills, the young ladies borrowed Rs.35,000 from loan-sharks at 36% per annum!
Such astounding naievete seems tolerable in do-gooders-- in India, the parachute always opens on time. Meena who spends most of her time raising funds says: "The parents made sure we didn't fold up. They gave what they could and brought their friends over and they gave generously too."
Today, 6 year-old Shristi cares for 70 special people. The monthly budget has grown to just over Rs.200,000. While that's a number that Meena must vault every month, Rs.80,000 of it comes from patrons and parents.
In 2002, Shristi created a happy modern facility at Chennanahalli near Bangalore. Their services are now available to rural parents as well. The 2 acre land on which this centre stands, belonged to Mrs. Jayashree Prasad -- she donated it Shristi. K Venkateshwar facilitated its acquisition in several ways.
Mrs.Saroja Naidu, a legendary philanthropist of Bangalore gave Rs.400,000, Amar Rehman from Chennai gave Rs.50,000 and many others send regular sums.
'It's no disease, so there's no cure':
The three undertook the special educator's course at KPAMRC. When they met in 1995 to start Shristi, they had 26 years of work experience between them... and nary a penny. Sometimes it helps to be money-unwise, and clue-less about costs, as many of the GoodNewsIndia heroes featured at this site are. They seem to have an unconscious faith that in this country, good causes will find the support they need.
They rented a small house in Basaveshwara Nagara in Bangalore and put up a sign. Soon, businessman Bipin Avalani drove up and handed his son Hemal over. Hemal, then 16, could not even clean himself and needed constant attention at home. The girls had their first ward. Bipin gave them Rs.5000.
Shristi fanned out to schools nearby to spot children needing their care. What they saw would move even the hard hearted. There was no programme to sort the children and grade their needs. They were often mocked and treated as though they were insane. Some of the hyperactive were even tied to chairs. Thirty years ago, for a struggling India, the needs of non-ordinary people was a peripheral issue.
The central difference in special people is their difficulties in communicating, associating and comprehending a world we, the 'normal' have constructed. Within that difference, there is a whole range to the difficulty; from the marginal to the extreme. Autism is a catch-all phrase to a wide spectrum of disorders. It has in fact been called the Spectrum Disorder.
It is a lifelong predicament. Since it is not a disease, it cannot be 'cured'. But most, can be trained to care for themselves. Autists are often very creative and compassionate. They respond to music, colours, dance and being given small responsibilities. The trick is to find what a child is good at, for it is certainly good at something.
'Just in time' help:
Bipin Avalani's Rs.5000 had seemed like a windfall to Shristi's founders. After all, throughout their earlier work-life of 23 years between them, they had seldom earned more than Rs.800 per month. But reality caught up with them soon, as more and more parents brought their children over. Driven by bills, the young ladies borrowed Rs.35,000 from loan-sharks at 36% per annum!
Such astounding naievete seems tolerable in do-gooders-- in India, the parachute always opens on time. Meena who spends most of her time raising funds says: "The parents made sure we didn't fold up. They gave what they could and brought their friends over and they gave generously too."
Today, 6 year-old Shristi cares for 70 special people. The monthly budget has grown to just over Rs.200,000. While that's a number that Meena must vault every month, Rs.80,000 of it comes from patrons and parents.
In 2002, Shristi created a happy modern facility at Chennanahalli near Bangalore. Their services are now available to rural parents as well. The 2 acre land on which this centre stands, belonged to Mrs. Jayashree Prasad -- she donated it Shristi. K Venkateshwar facilitated its acquisition in several ways.
Mrs.Saroja Naidu, a legendary philanthropist of Bangalore gave Rs.400,000, Amar Rehman from Chennai gave Rs.50,000 and many others send regular sums.
Shristi struggles for funds because it won't cut corners-- it implements the 'best practices' in autism care. There is one teacher for four wards, an unusually good ratio in India. Their budget covers cost of transportation, lunch, medical care, nutrition, picnics, art courses and materials, sports, cultural events and festivals and orientation visits for their wards to parks, museums, post office, bank,restaurant, hospitals, shops... the list is endless.
Paying off:
Results are beginning to show. Parents feel more positive about their strange children. A sensitive name coined for this affliction is, 'Ooops... Wrong Planet Syndrome'. Indeed these children seem to have wandered here by mistake, and are bewildered unless we reach out to comfort them.
And the only way we can reach their soul is by love and patience. If we are sincere in trying to discover what they really like doing --for there are many things they enjoy doing-- and lead them to what among those are productive for them --and there are many things, they can be good at--, we may then make them feel at home on this planet.
It is through care and love that Shristi has enabled many children to live in peace and with some sense of identity. For example, Bhushan Balakrishna minds his family gift-shop by himself. Many other children have learnt to fend for themselves easing the load off their parents. About fifteen of them earn modest incomes from their craft-work and strut home proudly to their mothers with money in their fists. As for Hemal Avalani, that first arrival at Shristi, he is 23 years old now, and a faint shadow of the totally dependant young man. He commutes by public transport to his father's friend's business where he is employed. He can handle email, do his shopping and select music for himself. Above all, Hemal regularly saves a part of his salary and brings it over to Shristi every month to donate.
Hemals will ensure Shristi will endure. Wouldn't you too?
_________
All donations to Shristi Special Academy are exempt under Section 80[G] of the Indian Income Tax Act 1961.
_________
Shristi Special Academy
MIG 71, 1st Cross, V Main,
KHB Colony- Stage 2
Basaveshwara Nagara, Bangalore-560079
Phone: 91-080- 3204875
eMail:
Website:shristi-special-academy.org
