Sandesh, providing daycare for ‘children of lesser god’

Bengaluru: After 21 years of working with people with intellectual disabilities, Jenny and her husband, Seby, decided to realise their lifelong dream of starting an organisation of their own. Together, they created Sandesh, which means ‘message’, a home for persons with intellectual and developmental disabilities, in the slum area in Lingarajpuram, Bengaluru. They did away at once with technical terms like NGO and ‘organisation’, preferring to call themselves a community.

“A lot of the children come from single-parent home which makes life tough for mothers,” said Nupur, who heads the fundraising at Sandesh. The community was founded and registered in 2010, with two children. Although their original plan was to start a residential facility, Jenny and Seby soon learned that a daycare centre was a much more pressing need. “The parents needed a place to leave the kids when they were at work,” said Singh. “Finding a school was nearly impossible and a lot of daycare centres charge fees, which they simply cannot afford. Most of the time, the children were either left with a grandmother or locked up inside the house.”

Word spread quickly, however and two children became 40. Most of them are severely disabled and come from poor economic backgrounds, so malnutrition and the lack of access even to basic healthcare were the two needs that needed to be addressed immediately. The community now comprises 40 members, between the ages of 1 and 36. “It isn’t right for me to call them all children,” Nupur agreed. “Even so, most of them are under the age of 18.” The members also come with a spectrum of disabilities, so the daycare centre is now divided into two homes; the first focuses on vocational training, while the other, Utsav, is for providing care and therapy.

At Sandesh, the members , who have mild to moderate disabilities, the focus is on providing them with vocational skills. The members make candles, diyas, paper products and even work with beads. This is an important part of the programme at Sandesh, for it boosts the kids’ self esteem. “Those who are above the age of 18 get a stipend from us as well,” said Nupur. “It’s not very much, but it does wonders for them, because they feel a sense of responsibility that comes from earning money. Nothing compares with seeing their faces light up when they get that money each month!” The products they make are sold and the income goes back into running the home.

The programme at Utsav is far more intensive. This is where the kids with severe challenges go, for different kinds of therapy. “We provide acupressure, massage therapy and physiotherapy,” said Nupur. The kids arrive after breakfast each morning and are taken straight away for a 30-minute therapy session. “Some of them are very ill, so they need rest immediately after,” said Nupur. Utsav is equipped with wheelchairs, so the kids are taken out into the sunlight after their rest. The day typically ends by 4 pm, when their parents take them home. Sandesh has a much more varied timetable, with meditation and an exercise session fit into the schedule each day.

Since nutrition is an issue, Sandesh provides the children with lunch and two snacks during the day. “We give them a health drink at 11.30 and a lunch of rice, dhal and a vegetable everyday. Rice is the staple, because most of the kids are unable to chew,” Nupur explained. Healthcare is a priority as well and epileptic attacks are almost a matter of course. They are swiftly dealt with by the caring staff. “We do an annual health checkup in the community,” she added.

Recreation and awareness is an important part of what they do — their overarching vision is to bring about acceptance and integration within a society that deals with disabilities by brushing them under the carpet. “It’s very important for us to work with the parents, many of whom see their kids as a burden, because they cannot give back in the conventional sense,” said Nupur, adding, “The children have so much to offer and that’s what we want the world to know.” Parents also approach the community for help and advice whenever needed. That apart, kids are exposed to the outside world as often as possible. “We organise picnics and outings for them whenever we can,” Nupur remarked. Friday afternoons are also earmarked for recreation — the girls go for grooming sessions, music and dance, while the boys are taken out to play football and cricket.  

Their biggest challenge, really, is finding a permanent location. “Both houses are on rent and we have been asked to look for another place,” said Nupur. Finding a suitable location for an organisation that deals with specially-abled people is always a challenge, because discrimination is so deeply-rooted. “Also, the place needs to be made disabled-friendly, so moving is a concern,” Nupur explained. They are firm on one thing, though — the want to stay in the city. “There really is no point in moving outside the city, being isolated, where people can’t get to us. We want the children to have as much contact with mainstream society as possible. At the end of the day, everybody, no matter who they might be, want to feel accepted and loved.”
 

 

 

Download the all new Deccan Chronicle app for Android and iOS to stay up-to-date with latest headlines and news stories in politics, entertainment, sports, technology, business and much more from India and around the world.