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Awakening to their needs
Parents of intellectually impaired children and youth set up a day home where they would be cared for and loved. Kumudini Hettiarachchi reports

They need more funds
The home is built and some special children and youth come in regularly but the Trust is facing difficulty in starting residential facilities due to lack of funds. “We have no funds for the day-to-day running of the home and the salaries of the staff,” laments Dr. Jayaratne. “As such we have started a day care centre for these children from 8.30 a.m. -6.30 p.m. The place is managed with the donations provided by the parents.”

The Trust is appealing to the business community and other kind donors to help it launch the residential facility. For more information the Udapadi Trust could be contacted at: 80A, Sri-Sumangala Mawatha, Ratmalana, Sri Lanka. Phone: (94-11) 2589768.

Will my son be okay when he grows up? Will my daughter be happy when she is an adult? These are the worries and fears of most parents, as they see their little ones growing up, from the time they take their first steps, to the time they begin uttering their first words, as they pass the ferocious fours, get into school then face the terrible teens and finally step into the world as young men and women.

The anxiety of parents doubles and trebles when their children are differently-abled, for then they feel they cannot die in peace. For, who will look after their children? Yes, they may have brothers and sisters but can parents of special children expect them, however close they are to their siblings, to take on that responsibility. Keeping this in mind, a group of parents who felt the need to ensure a secure future for their special sons have formed a Trust, named Udapadi meaning awakening, to establish a ‘home’ away from home for them where they would be cared for and loved.

Now a ‘day home’ to seven, ranging in age from 11 to 28 years, the hope of those running the Trust is that whenever the parents are no more, they will find a permanent residential home here.

The day The Sunday Times visited the Udapadi Residential Home in Ratmalana, the boys and youth were busy at their respective tasks. Twenty-eight year-old Nimal* was busy with his handwork of making a carpet with pieces of cloth while 11-year-old Anil* was colouring.

Gunawathi Vidanage who is in charge of the home was coaxing a newcomer, a lanky youth, son of a police officer who had died in a bomb blast, to leave his mother and join the others. “From January 3, these children come in everyday in the morning, with their parents having the option of leaving them in our care till about 6.30 in the evening,” explains Gunawathi, with many years of experience, 21 in all, working with the differently-able, taking time off to show us around the spacious home. “Already some parents have booked their rooms, with attached bathrooms and we hope to recruit a lot more staff.”

The routine is simple – soon after they trickle in to the home, they engage in about 45 minutes of exercise followed by tea. Thereafter, they do “some kind of work” they are good at individually. Nimal who is very good at jigsaw puzzles is talented in making beautiful birthday cards, says Gunawathi, adding that each person’s special ability needs to be spotted and developed.

“They love Mondays,” she says. It is a special day of the week for them because they come armed with their swimming trunks to spend more than one hour in a pool close by.

For Kamala, who has brought her 21-year-old son here for the first time, life has been spent more in the depths of a valley than at a mountain peak. “The realization that everything was not right with my son came when he was about four years. He looked sleepy all the time. He was also lethargic. He went to a normal school but lagged behind in his studies though the teachers were very good.”

These children and youth look no different but they are intellectually impaired. Usually, they are cared for by their immediate families. This is a good practice since these children like normal children should be brought up with love and care in a family environment, says Dr. (Mrs.) Srimathie Jayaratne, one of the Trustees.

Intellectually-impaired children, she explains, are those diagnosed as autistic, having Downs Syndrome or with other types of mental retardation. “They age and grow physically, but their mental age remains at about 3-5 years. As such they have to be washed, fed and looked after and are unable to lead an independent life. We have observed many instances where due to infirmity, illness or other circumstances caregivers are helpless in caring for them. Then these children become a burden to society,” says Dr. Jayaratne.

The concern caused by such instances was the seed that has now borne fruit. “The objective of the Udapadi Trust was to create a residential facility for these children where they can spend the rest of their lives. We hope this home would also be a model because there is an urgent need for such facilities all over the country,” she says adding that most parents who live in the outstations are unable to even find money for their bus or train fare to bring these children to Colombo.

Among the other aims of the Trust are educating people on the needs of such persons, obtaining public support for these special people, assisting them to develop their physical and spiritual capacities and also promoting research into the management and rehabilitation of such persons. “We are attempting to collect funding to help parents who are financially burdened,” stresses Dr. Jayaratne.

The 10-member Trust -- approved by the Ministry of Social Welfare as a charity and awaiting registration -- comprises three from the Sarvodaya Suwa Seva Society which donated the 28-perch block for the home, three doctors, a legal officer, an accountant and a member representing the charitable organization, George Phylnormal Foundation in the United Kingdom that funded the building.

The home is designed to accommodate 8 to 10 intellectually impaired individuals who are unable to live in society independently. They would be permanent residents in the home and would be looked after by trained professional staff. It will not only be a home but also provide educational and vocational training.

“The additional facility, found nowhere else in Sri Lanka is ‘respite care’,” says Dr. Jayaratne adding that if any family with a retarded child has a death, sickness or any other problem, the home would care for the child for a temporary period.
* Names have been changed to protect identities

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