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
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
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
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.