A 'silver' lining despite all odds

In spite of having a common cause, it is very rare that people come together and sustain an organisation for 25 years. But that is exactly what these ‘special’ purpose group has done, discovers N Niranjan Nikam

The pain is writ large on their faces. But the smiles are also there. They are the chosen few and who better understands them than the people of their own ilk. The birth of a child almost always triggers a wave of emotions. There are so many dimensions to this most creative act. However, for a few parents, the world could come crashing down, once they discover that the child they have given birth to is ‘special.’

It is then the battle begins both in the innermost recess of the mind and outside in the physical world. The thoughts start haunting, fear keeps gripping. Majority realise that the sooner they come to terms with reality the better it is for them to face the sterner tests ahead.

Commitment

This is exactly what a few committed parents have done over 25 years. They have realised that self-help (Swasahaya) is the only option they are left with and no amount of trying to attract the attention of the ‘normal’ world will do them any good. Thus the group (Samuchhaya) of parents of mentally retarded and cerebral palsy came together in 1987.

It is 25 years now and looking at the pre-school Chetana and pre-vocational centre Kaushala, joint secretary Manjula Prabhakar wonders, “Have we really travelled all these years together after we all came together a quarter century ago?” The journey has not been easy because for the parents of the special children it is a long haul as one thought keeps gnawing at them-what after we are gone?

There are many stories, as K Sanath Kumar, vice president of the association articulates, about the success story of Mahadev Prasad, or the experiences narrated by the mother of a 20-year-old autistic child.

“Every day is a challenge for us. We have to learn from our own experiences. The experts in the field are there to give us ideas, some of them practical but most which cannot be implemented as only the wearer of the shoes know where it pinches,” he told City Herald.

What is the strength this self-help group carries? It is the understanding that they all have to help one another. “When we go out taking our children for a picnic, we laugh and cry with them. Neither they nor we feel awkward with their tantrums or loud laughter.
This bonding is what has kept us going,” said secretary B K Rama Prasad.

Many children have gone through the portals of these two schools in these 25 years.
“My own son Srinanda, 34, who was trained in the school, is now able to take care of himself. Of course, I had big plans for him. I wanted to set up a Xerox copier shop for him so that he could be really independent. However, I realised that my expectations were a little too fancy and I had to shelve the idea,” said the president of the association K V Panduranga Shetty.

For treasurer A S Prabhakar and wife Manjula, it is heartening to see that their daughter P Veena, 31, is now teaching in the same school where she learnt. “We are very clear that she cannot be married. We do not want to give a false hope or try to escape from reality,” said the couple.

Promises over the years have been made aplenty by the Mysore Urban Development Authority (MUDA) to allot them a site.

Every time a site has been allotted, it mysteriously gets out of their hand and lands in someone else’s lap, say the members in unison.

The other crying need they have found, they badly need is ‘short stay homes.’ “If anyone of us has to go out for a longer duration, it becomes extremely difficult for us because we have to worry about our ‘special’ children. This is the time we feel if there are facilities for a short stay home, where we can leave them for a few days and go it will help us,” they said.