Open doors for these special needs children
A small lesson over, it’s time for a nap. M.A. Pushpa Kumara
Down a lane in Ambagahawatte, Kalapaluwawa, is an acre of land surrounded by a wall, like any other large or small property in Rajagiriya.
Walking in, what greets the eye is a wonderful world, a world just being put in place for special children. The painting is over, with bright greens of different shades for the doors and on the window sills colourful toys.
The garden has swings and a merry-go-round, albeit wheel-chair ones, and also a musical area with a huge xylophone in all pastel hues. A child’s fairyland!
As we walk around, other aspects come into view – a large, airy hall for physiotherapy, with a variety of contraptions, next to which is a shallow pool for hydrotherapy, a little distance away a room for occupational therapy and also another where there is a one-on-one session in behavioural therapy.
Next it is time for us to be introduced first to the little ones and finally to the oldest who is nearly 17 years old. It is just past noon and four have already been fed in a room that we visit. One is fast asleep, two are moving around and the other’s limbs seem impossibly contorted.
Another seated in her special chair is gently touching a turtle counting toy while swinging her feet, but suddenly jerks up and gives us a beautiful smile, while next to her is a boy with his thumb firmly in his mouth, looking around with wide eyes, but unable to hold up his neck, with his head lolling down.
In a different room, serious lessons are in progress for children seated in specially-made chairs as their bodies tend to sag.
For 38 children in the age-group 3+ to 18 and their anxious parents, with more and more seeking admission, this is a haven where learning and therapy are being provided with determined thoroughness.
It is the newly-opened National Centre for Cerebral Palsy and Developmental Disorders (NCCPDD) of the MJF Charitable Foundation and the Cerebral Palsy Lanka Foundation (CPLF). The CPLF had been established by Chartered Physiotherapist Gopi Kitnasamy and his wife Dilani.
With the goal of directly supporting around 120 children and youth with Cerebral Palsy, Down Syndrome and Autism, this centre is also set to train health professionals, parents, care-givers and teachers in managing these conditions, who can then spread across Sri Lanka and do the needful.
“We have four classes currently with seven teachers qualified in Special Education and some fluent in Sinhala and others in Tamil, an assistant teacher, two physiotherapists, two speech therapists, an occupational therapist and a behavioural therapist,” says Dilani the Team Leader having shown us around.
| National Register is the need The first step has been taken in a long journey to bring into the public eye the numerous issues faced by parents with special children, some of whom have been hidden behind closed doors in their homes, fearful of stigma. A strategic plan on how to effectively integrate these children into society, after educating and training them, taking into account their individual needs is the requirement. Such a plan needs numbers – how many have developmental disorders? To address this, the NCCPDD is collecting information for a ‘National Register on Persons with Developmental Disorders’. This database would help in more scientific and effective planning. Then the other issues that would be looked into include: The most prevalent district or area and the reasons for such prevalence; the most common cause for each developmental disorder; and preventive measures and coordination with state and other agencies to bring about a proactive national strategy. These developmental disorders include Cerebral Palsy (damage to the brain before, during or shortly following birth), Down Syndrome (a chromosomal abnormality) and Autism (a neuro-developmental disorder).
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There has been a moment of mother-son tenderness, obvious to any observer, when we walk into one class, for the urgent need to educate special children dawned on Dilani and Gopi when their son, Danush, was born 17 years ago.
A tiny blister that Danush had at birth on his spine which burst the first evening of his life, leaving a burn-like wound was not taken seriously by the doctors. The signs, though, were not good. The developmental goals were not in keeping with the baby’s age.
“He used to smile and look at my face and also hold my finger tightly, finding it difficult to let-go. The hospital rounds ended with the diagnosis that the burst blister had allowed a germ to enter his brain, making him a victim of Cerebral Palsy. His body posture was severely affected, he has involuntary movements and he is non-verbal,” says Dilani.
Re-living those early years when her parents did not give up, certain that Danush’s IQ was very high, even when some doctors held out no hope, she says that after taking him to the speech therapist, in the afternoons at home, her father would draw pictures and her mother would tell a story, with Danush picking out the right picture.
The futile hunt for schools began when Danush turned six. The few schools which had special education put all children with different disabilities together without considering the potential of each. Dilani then resigned from her job, secured a Diploma in Special Education and opened with Gopi their own self-funded school in Wattala as they were living in Modera. The beginnings of ‘Dream’ in 2011 were humble, with only Rs. 200,000 and in a relative’s store-room. Starting with three children, in five years they had 65 on the register with several people and organizations lending a helping hand.
A chance meeting with an MJF Charitable Foundation representative at the Education Ministry turned out to be a golden opportunity. The Foundation offered the land at Ambagahawatte, promising that it would look after all money matters.
“With goals being set and achievements being shown to parents, all efforts are focused on the child at the NCCPDD,” says Dilani, adding that currently, there are only children with Cerebral Palsy, but soon those with Down Syndrome, Autism, mental retardation and behavioural issues will also be brought under this caring and learning umbrella.
Dilani is a happy mother, for Danush is preparing to sit the Ordinary Level examination this year.
The school day of the NCCPDD is drawing to a close and the hopes, expectations and wishes of the parents gathered here to accompany the children back home are tangible, as wheelchairs come in a queue and teachers carry other children in their arms.
| When business is a matter of human service MJF Charitable Foundation Trustee Merrill J. Fernando, had been profoundly influenced by his own mother who had inculcated the value of sharing the modest blessings they receive, be it food, money or anything else with the less-privileged. This is the philosophy that governs Dilmah and related businesses today — that business is a matter of human service, the Sunday Times understands. With the NCCPDD’s objective being to ensure that children or youth with developmental disorders are not a liability and can make a positive contribution to society, the Foundation already has a ‘Rainbow Centre’ in Moratuwa, operated in co-operation with CPLF. The NCCPDD, the Sunday Times learns, will be a Centre of Excellence, bringing in expertise from India, New Zealand and Australia, while disseminating information in English, Sinhala, Tamil on caring for and managing children with these conditions. “The philosophy that is at the heart of Dilmah acknowledges the reality that success is a blessing that cannot be hoarded and must be shared,” says Mr. Fernando, adding, “ I devoted my life to tea, and knowing that the success of my family tea is the combined outcome of God’s blessing, of Nature as well as the men and women who make our tea industry possible at every level, it is my obligation to ensure that our success is shared with the less privileged in the community and through positive environmental interventions.” Another Trustee, son Dilhan, meanwhile, points out that the NCCPDD is part of a wider programme to build capacity in supporting children and youth with developmental disorders and their families. “Together with CPLF, we want to build a better understanding of these conditions and alleviate the pain caused by the social stigma and marginalization that these children and youth experience today. Doing so benefits them by restoring their dignity and giving them quality of life and it benefits the community by harnessing the contribution that they can offer if they are given a chance,” he adds. |
(For more information, please E-mail: info@mjffoundation.org)