When Dr Rekha Ramachandran tells you it is like a big family get-together, she means it. At a resort in Candolim, Goa, a group of children are huddled over paints and paper in one part of the room, as their parents chat over coffee in another. Soft music plays in the background. “The idea is to relax and take it easy,” says Ramachandran. The co-founder and chairperson of Down Syndrome Federation of India (DSFI) is referring to the group of parents who have come with their children with Down Syndrome for a holiday organised by the 62-year-old.
As caregivers of people with Down Syndrome, parents have to be on the job 24/7. Not only does it require patience and commitment, it also needs a crucial balance in their personal and professional lives. “Because they have their hands full, we have been trying hard to get them to come for a holiday, unwind with parents like themselves, get the children to meet and have some fun,” says Ramachandran, who holds a PhD in cognitive deficit and depression in Down Syndrome.
Goa was a natural choice for the get-together. Ramachandran brought together 43 parents for a weekend holiday, sponsored partly by her and partly paid for by the parents themselves. Accompanying them were their children living with Down Syndrome across all age groups — the youngest being only one year old. The families came from across the country — from Chandigarh, Mumbai, Pune and Bangalore — and from overseas — Dubai.
It took Ramachandran, who was accompanied by her 36-year-old daughter with Down Syndrome, Babli, over a year to plan the event out and get everyone to come together. “We have a WhatsApp group as well, with over 250 parents, and while that has helped make connections, I was keen for parents to meet personally too,” she says.
Among those who made it to the weekend getaway was 37-year-old homemaker Shivani Dhillon and her six-year-old daughter Shreya from Chandigarh. “Going on this holiday wasn’t an easy decision. I knew most of the parents through WhatsApp. I had made a few friends over the phone, while others were just names,” says the Chandigarh-based homemaker. “Events like these are important. It is essential for parents of special children to relax and unwind,” adds Dhillon. She runs a support group called ‘Down Syndrome Support Group India on Facebook. “In India, it is assumed that the parents will pull through. It is very exhausting for a parent to look after a special child as well as manage work and home. This is the first time anybody thought of our needs,” she says.
There were no rules to this holiday, nor was there a fixed itinerary. Parents could sleep in late; there were no formal sessions or seminars to attend. The children had multiple activities to choose from, supervised by caretakers. The karaoke night was a big hit, so were the yoga sessions by the pool, the dance classes, fashion show and trips to the beach. “The most relaxing thing about the holiday was that there was no one judging you. Since we all face similar struggles, we were looking out for each other’s children as well,” says Shweta Pranay R, a 34-year-old architect from Bangalore, who participated with her four-and-a-half-year-old daughter Dhriti, “I have found my 4am friends here. Sometimes, you need someone to just hear you out.”
Pune-based software engineer Aditya Tiwari, who made news earlier this year for being the youngest single man in the country to adopt a child, turned up with his two-year-old son Binney, who suffers from Down Syndrome, and his wife, Arpita. “Through this holiday, we have found an extended family. We can discuss everything and learn from each other. Sometimes, even close family members can’t help because they don’t have the knowledge to,” he says.
Refreshed and energised, the families are already talking of another holiday in the coming months. This time, their tentative choice of destination is Rajasthan. “We are looking at organising a smiliar getaway in Jodhpur where more families can join in,” says Ramachandran.