Chennai :

When her daughter Babli was diagnosed with Down Syndrome, Surekha Ramachandran refused to give up hope. Since little was known about the genetic disorder in the early 1980s, she educated herself. Now she shares her knowledge and experience to help other parents and children like Babli lead normal, full lives.

On Sunday, the Down Syndrome Federation of India (DSFI), which she established, will turn 30. After three decades of service, Surekha says she is yet to see societal attitudes change. “There has been more awareness about DS but attitudes have not yet changed, which makes a parent very apprehensive about taking a child out anywhere.”

Three weeks after Babli was born, doctors said she had visual problems. “When she was eight weeks, they told me she had mongloid features,” says Surekha. “Asking doctors questions was considered impertinence.” There were few experts on DS, and no specialized centers for treating the disorder.

In 1984, Surekha established the Down Syndrome Association of Tamil Nadu (DSAT), with six children and an educator. “They were of varying ages. By watching them, we learned where the lacunae were,” says Surekha, who then began establishing parent support groups across the country, starting with Maharashtra. She identifies an anchor person in each place, who then networks with other parents. Today, there are support groups or associations in every state. So, 10 years ago, she started DFSI to bring them all under one umbrella.

Along with DSAT, in 1984, Surekha also started Mathru Mandir, a centre that helps in early intervention. The airy, roomy place in Mylapore has mothers working along with their children and experts. “Even newborns are referred to us,” says Surekha. The older children also learn baking and weaving as part of occupational therapy. DFSI also counsels distraught families, train children to overcome shortcomings, provides physiotherapy and speech therapy, and works to spread awareness about DS.

On Sunday, as part of the 30th anniversary celebrations to be held at AVM Rajeshwari Hall on Radhakrishnan Salai, children of Mathru Mandir, along with children from Deepa Athreya’s School of Success will perform a short play. “It will show how you deal with a child with DS in your class, and it benefits other children as well,” says Surekha who works for inclusive schooling. “Being with a child with DS teaches other children qualities like tolerance and patience.”

source: http://www.timesofindia.indiatimes.com / The Times of India / Home> City> Chennai / by Priya Menon, TNN / November 16th, 2014