You are not alone

Parents of special children join hands to help themselves and
their kids - Harriet Grant reports

Taking a newborn baby home from hospital for the first time is always a nerve-racking experience. More so, when you have just been told your child has Down's Syndrome. When this happened to Nilmini D'Silva she was not even given basic advice about how to feed her child who had a cleft palate which distinguishes Down's Syndrome babies. Only after the baby nearly choked as she was fed and had to be taken back to hospital was more attention paid to the mother's needs.

Last year, Nilmini and her husband Chamaka, a lawyer, took their daughter, then aged one, to England for an operation on the cleft palate and on her heart. From the moment they arrived in the UK, representatives from parents' associations were on hand to comfort and reassure them, during and after the operations on their little girl.

The continual, round the clock support that groups such as The Down's Association and The Down's Heart Group offer in countries like England and the United States stood out in sharp contrast to the lack of even a basic support network in Sri Lanka.

Inspired by what they had seen, when Mr. and Mrs. D'Silva arrived home they placed an advertisement in The Sunday Times and in The Daily News aimed at all parents of children with special needs. "They are our children. It is up to us, as their parents, to provide for their needs and secure their future. It is easier to do so collectively in a group," the advertisement read.

The response was overwhelming. On October 21, 85 parents were waiting in the parish hall of St. Paul's Church, Milagiriya the premises of which had been lent free by the parish priest.

The gathering comprised parents whose children suffered from several different disabilities, ranging from autism to cerebral palsy. In common was the fact that, faced with the difficulties inherent in bringing up a child with some kind of disability, their task was made more difficult by the lack of assistance offered by the medical and educational professions.

The Association for the Advancement of the Needs of the Special Person formed that day, has three main aims. The first of these is to direct parents towards the specialist services available. Although presently these are few and far between, the problem is made more acute by the lack of a central body through which to disseminate information.

One woman who came to the meeting ran a school for children with special needs in Kandy but none of the parents had been aware of its existence.

One of the major problems of leaving parents to fend for themselves in finding educational and health specialists is that they do not know whom to trust. I spoke to a father, Neville Fernandopulle, who removed his daughter, who has Down's Syndrome, from her school as he did not feel it was paying sufficient attention to her needs.

The few specialist services that are available are scattered around the country. Small things such as going to the dentist become a trial; for example the only dentist who will treat autistic children is in Kandy.

For parents who are already juggling child-care with jobs, this burden of hunting down specialists and evaluating them is an onerous one.

The second aim of the parents is to function as a pressure group, campaigning for improved services and raising awareness of the nature of their children's disabilities.

Although they have not yet been in touch with any government officials, they hope in particular to speak to the Minister of Education.

There is even talk of setting up a school themselves one day but they are keen to stress that it would be cheaper and more effective to improve facilities in existing schools.

At the moment the parents believe that there is a feeling in the government and the country in general that children such as these are nothing but a burden on society. If the resources were provided, the parents, who know just how much these children have to offer, believe they could show themselves to be an asset.

People can be cruel. They shrink away on the street thinking that disabilities are catching; other parents keep their children at a distance. The association hopes to educate not only the parents but also the wider community.

They hope that by integrating children with special needs more thoroughly into mainstream education, benefits could be reaped on both sides.

It is heartening to see the pleasure it has given these parents to find friends with whom they can discuss their children within a context of mutual understanding. Mrs. Nerangela Paul, whose daughter is autistic, described the shattering feeling of being told that her child is not 'normal'. "It feels as though the roof has fallen on your head," she explained, while all the parents sitting around her nodded their heads in vigorous agreement.

The third aim of the association, therefore, is to offer emotional support to parents not only when the child is born but for the rest of his/her life.

For parents who have only one child there is a constant fear of what will happen to this child when they die.

At the moment insurance companies do not offer provisions for such situations but hopefully pressure from this group may change that.

Alongside the serious business of death, welfare and the attitudes of society, the group also wants to be able to give the children a good time now and then. At Christmas they held a party which gave everyone a break including the siblings of the children. Instead of being shunned, all the children were able to relax and have fun.

Talking to the parents leaves no doubt that they will accomplish their tasks. The mixture of love and determination with which they are facing their struggle will guarantee success.

On March 3, a talk entitled 'common behaviour problems and behaviour modifications' will be given by Dr. Patrick Ryan from 9 a.m. to 12 noon. at St Paul's Church, Milagiriya.

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