Chandramouli, or Mouli, as he is called by those around him, is 35 years old. His mother Bala Raghunathan trained as a nursery teacher in the same campus as his school. She later trained as a special educator. At the age of 58, she received a certification in hospital management to work in the same hospital as her son. Bala did all this so she could be with Mouli, every step of the way.
This could sound like a case of extreme helicopter parenting, but Bala has good reason for everything she has done. “The day Mouli was born, we knew that there was something to be concerned about. The doctor confirmed it for us,” she says. Mouli was born with Down Syndrome, a genetic disorder that delays physical growth, affects intellectual capabilities. Those with the disorder also have easily distinguishable facial features.
Battling norms
“I cried for a whole day,” says Bala. “But my husband said, we will take this as a challenge. And we did.” Bala, until now, has zealously supported Mouli throughout his life. “When he was four, I took him to psychologist Prof Jeyachandran to be assessed. Initially, Prof Jeyachandran refused to do so. He said they couldn’t determine IQ at that age, and asked me to come back when Mouli was six. I insisted, and he relented. Once the assessment was done, he asked me to come back in two years. If Mouli’s IQ remained the same, then he could be admitted to Wesley School.”
In two years, Mouli joined the school, and Bala joined Meston College of Education on the same campus. They would go and come back together, falling asleep on the bus ride home.
Before Mouli joined Wesley School, that has integrated programmes for children with special needs, he was in a mainstream school. However, the mainstream education system turned out to be inadequate for Mouli’s needs, says Bala.
The management at his former school asked Bala to remove him as they didn’t have the resources to teach him. Bala was heartbroken at this, but Jeyachandran reminded her that there are many schools tailored to fit Mouli’s needs.
Prof Jeyachandran too has nothing but compliments for Bala. “She is one of those rare people who was willing to give it all for the child. It is because of her that he is a functioning adult now,” he says, adding that parents are usually not this patient. Bala however, says she didn’t see any choices: “I did feel like I didn’t deserve this, but now, I don’t regret a single thing.”
She feels the Government should step in too. “When we visited Scotland for the World Down Syndrome Congress this year, we learnt that the government provides housing for adults with Down Syndrome, and they have support groups to take care of their physical and mental well-being.”
With his colleagues at Sankara Nethralaya
Bala also thinks that each child should have access to a psychologist, a psychiatrist, a physical therapist and an occupational therapist, along with a physician. But Jeyachandran has a different approach. With India’s doctor-patient ratio, it isn’t possible, as of now, to provide such access to all children with disabilities. He instead trains special educators to take on these roles as and when necessary.
Office buddies
Mouli is now a volunteer at Sankara Nethralaya, as part of the Sankara Nethralaya Women’s Auxiliary(SWAN), as is Bala. The 30 volunteers at SWAN work in various capacities — the utilities section, the crèche for consultants’ children, the telephone booth — and in departments such as patient services, medical records, canteen, and crowd control.
With his mother, Bala Raghunathan (left)
It’s in the medical records department that Mouli spends most of his days. “Mouli is well-settled here,” says Dr Vasanthi Badrinath, co-founder of SWAN. “He is neat and clean and he does his work very well. And you cannot meet a more soft-spoken person than Bala.”
The way forward for Mouli is a multi-layered challenge. Bala says she doesn’t let him handle his finances yet; she is afraid people will take advantage of him. “He’s too trusting,” she says.
She and her husband are considering setting up a fund with the people they trust. “We don’t know what he will do without us. But we can make sure that he is taken care of.”
Mouli, for his part, is always all smiles. He is shy, and leaves the description of his job to his colleagues, nodding along. He likes to cook, and every weekend, the kitchen is his. His face lights up when he talks about the food he cooks. “I can make simple food. Like what my mother makes every day.” While for Bala, it is the imparting of a survival skill, for Mouli, it is a point of pride.
