Showcasing hidden talents of ‘special’ persons | Daily News
‘Ranga Rata’

Showcasing hidden talents of ‘special’ persons

Realising that your child has a disability can be traumatising, resulting in overwhelming emotions of shock, disbelief, anxiety, fear and despair. At that moment, some parents cannot distinguish between the unconscious wish for an ‘idealised’ normal child and the unthinkable harsh reality of one who is not.

For these parents, thousands of moments of wondering ‘why me’ and wondering if they are being punished for sins or bad acts of the past, are endless. In most instances, such situations put great pressure on the parents and sometimes even their own relationships cannot survive with this strain leading to families splitting up.

In the majority of such situations, it is mothers who end up taking on the most of the responsibilities of caring for these ‘special’ children, but this is not to say that there are no fathers who take on this arduous task. There are many fathers who dedicate their whole life to caring for such children, managing their work and children in the most remarkable manner. Be it single mothers, single fathers or both parents who have survived the impact of such situations, they should definitely be commended for their undying dedication and love for these ‘special’ children, despite the enormous challenges they face.

The common fear in all these parents, however, is what will happen to their ‘special’ child once they are no more or if they are not in a position to take care of these children. These parents spend endless hours grappling with this fear, no doubt. Any parent who has a child with mental impairments will agree that caring for these special children is no walk in the park. While having to deal with their mood swings, frustrations and temper tantrums, in some instances, providing total care for them can cause a huge strain on families. Sometimes, this is too much for families to endure, which can lead to tension within families, sometimes leading to eventual breakdown. The situation becomes more demanding as these children grow older and enter adulthood.

Many parents still have to work to provide for their families despite the challenges of having to care for such children. When these children reach adulthood, it becomes harder for these parents to find care facilities for them as they cannot be left alone at home. Further, these children also experience their own frustrations if they are not kept occupied.

It is at this juncture, that these parents need the greatest support from not just family and friends, but other parents and even society. These children, though mentally-challenged, do have their own talents and capabilities that are waiting to be discovered. They do feel pain, rejection, love and joy, just like any other child. They too love to show off their talents and abilities and are thrilled when society accepts them and encourages their abilities.

This is a group of parents who have come together to hone such talents of these beautiful and talented children and bring them out into society. Not just that, despite their own difficulties, they have also provided a platform for special children of other less-privileged families to help them develop their talents too. However, despite their good intentions and dedication, this group of parents needs the services of trainers to provide the required guidance and training to keep these children occupied and also train and showcase their talents. With that aim in mind, the ‘Special Children’s Education Development Foundation’ was formed and they showcase their talents in dancing, singing and performing in a special concert once in every two years. They gather every Sunday from 8 am to 1 pm and practise, interact and have some fun together. This gives these special children, all now adults, the opportunity to meet others who are like them and get some much-needed exercise by the way of dancing and playing.

The Daily News dropped in at one of their practice sessions last Sunday, and spoke to some of the parents of these special children regarding their own lives and the event which is scheduled to be held on March 16, at Royal College Hall (Navarangahala) at 3.30 pm. The concert is titled ‘Ranga Rata’ and after the concert, other special children wanting to join the group would be enrolled.

Speaking to the Daily News, Ramani Rajakaruna, a mother of a special child, said, “I am the one who is responsible for the costumes of the children. Several parents have donated their sarees to us and we have made the costumes with them. They are lovely sarees and we have been able to cut down on a massive cost this way. If we had to purchase materials for the uniforms, we would have had to spend at least Rs. 8,000 per costume, but due to the donation of these sarees, we have managed to bring the cost down to around Rs. 800 per costume. Each child needs around seven costumes. I have done my best with the costumes and I am pleased at how these have turned out and I am certain the children will love them too and will look gorgeous in them.”

It is not often that we see fathers playing a big part in their children’s concerts. However, a dedicated father, Nimal Perera was there to support his daughter while she was practising for the concert. He is a single parent and after the demise of his wife, he had opted for early retirement in order to take care of his daughter. “Our organisation started on the recommendations of a former Education Director. Some of our children were enrolled at the special education units at government schools. Hence the Education Director told several of us, parents, to group ourselves and start an organisation. We named the organisation ‘Exceptional Children’s Education Development Foundation’. We started sewing and dancing. Not only children with Down’s Syndrome, there were also children with other disabilities too. Once these children grew up, we were able to find some employment for them and I am glad that almost all these children are now employed. However, there are some who are not able to fend for themselves. Despite their disabilities, these children love dancing and performing. It is a way for them to break free and enjoy.”

Commenting on concerts held by these children, he said the initial concert was staged at Lumbini and since then they have held around four concerts every two years.

Another single father, Nihal Nanayakkara who was a former President of the Foundation and who is the current Project Chair said this organisation started with just 10 children. “Now the organisation has 35 students and the majority of these children are being cared for by their mothers. The Foundation also provides interest-free loans for those who want to start a small business that would give them an opportunity to earn for themselves and be independent. One of the main objectives of this project is to help them stand on their own feet. However, we don’t have a place of our own and we rely on the generosity and kindness of others. If someone can be generous enough to donate a plot of land to us, we could do so much more for these children. We have written to several places within the government, but sadly, our appeals have fallen on deaf ears.”

According to Nihal, the cost of this concert is around Rs. 750,000 and they must raise at least Rs. 2.2 to 2.5 million from this concert to provide facilities and activities for these special children. “If we fail to raise this amount, we would not be able to continue with this project. Somehow we have to target Rs. 2.5 million. Ninety percent of these children are from low-income families and they cannot afford even the basics. None of them even receive the Rs. 3,000 disability allowance from the government.”

He paid special gratitude to the dedicated mothers who work tirelessly to ensure these special children are cared for. However, we should specifically appreciate the four fathers who have taken on the task of caring for their special children. It is especially commendable that several fathers are single-handedly taking care of their daughters. Nihal Nanayakkara and Nimal Perera are two such exceptional fathers.

“My three sisters are really supportive and also everyone has been very supportive. They love my daughter and she is a very pleasant child. I could not have done it without them. I have faith in God and he guides and provides. I run a business and although I do not spend much time attending to my business, it still makes enough for our needs,” he said.

He also noted that not just the children, but most of these parents are also stressed and have bottled-up emotions, having to deal with the stress of taking care of such children. Hence meeting up in this manner also helps them as they form close bonds and can share their grievances and ideas which is also helpful. They get the chance to share their burdens with other parents as they can understand each other’s problems.

Another mother, Padma Dodawatte who is the Secretary of the Foundation, said she had joined this organisation based on the recommendation of a friend. “Now it is about 16 years since I joined this foundation and I am so happy because I see that these children have developed so much. My daughter is a slow-learner, but we never knew she had hidden talents until she joined this dancing class and she absolutely loves coming here and waits till Sunday to come to the class. I was also a teacher and I now realise that these children have so many talents and these hidden talents need to be honed. This foundation was started with just six children and now it has grown to 35. There are others who want to join, but since we have no permanent place, it is hard,” she said.

Therefore, it is our earnest wish that some generous donor would come forward, so that this group of special children could continue to enjoy their performances and also continue to enjoy each other’s company in a place that they can call their very own. 


 

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