Against All Odds, Nilly Proves That Nothing Can Hold Her Back! 

Penetrating the barriers of social insensitivity, 16 year old Nilshani de Silva, known to all as Nilly, student of Bishop’s College stunned all by achieving the impossible. A rare occurrence in the history of education in Sri Lanka, this little girl with Down Syndrome sat for the Ordinary Level examination and passed all of the four subjects she sat for, and even got an ‘A’ for English. This amazing achievement was only possible due to the undeterred determination of the parents and their confidence in the child’s ability. 

Down’s syndrome (DS) is the most common cause, accounting for approximately 15-20% of the intellectually disabled population. DS occurs when there is an extra chromosome in the cells of the body, instead of the usual 46, there is 47. It is not known why this occurs in some babies. There is nothing that can be done in pregnancy to prevent DS. DS can affect any family, irrespective of race, religion, social class or culture. 

DS is usually diagnosed shortly after birth, indicated by the distinctive physical characteristics of babies born with this condition. All people with DS have some degree of intellectual difficulty but there is great variability. Children with DS are usually able to walk and acquire some language but they will reach these milestones later than children without DS. There is a higher rate of some medical conditions amongst people with DS; namely heart problems, hearing and sight difficulties, thyroid disorder, respiratory difficulties and problems with the gastrointestinal tract. 

When most families would take this as a setback, Nilly’s parents never looked back. Once they decided that they were going to do whatever was needed for their little daughter, to do as much as possible, of what any little girl of her age could do, there was no case of holding them back. Starting by admitting her to Bishop’s College, her mother’s Alma Mater, at a time where no regular private school had a unit for kids with special needs, they even went on to convince authorities and get a few more schools to accept differently-abled children into the mainstream of the school. The bold decision made by the then Principal of Bishop’s College, to take on this challenge, paved the way for a long line of differently abled children to have the opportunity to get admission to the mainstream of schools. Assisted by shadow teachers, and surrounded by the nurturing, love and care from teachers and students alike, these little children are encouraged to make the impossible possible and, to reach for the stars! 

I had a chat with Nilly and her parents and asked them a few questions. 

This is what  Nilly had to say 

Tell me something about your family. 

In my family, there is my mother, father, brother and me. I love my family so much. My Aiya is my hero. I like to go to university like my Aiya and make my dreams come true. I miss my Aiya so much. 

What is your favourite thing about going to school? 

My school is my second home. I like the interval; that’s my best time as we get together and talk about songs, latest designs and TV shows. I learn a lot from my friends.We have a lot of fun together. I feel so happy and proud to be a Bishopian. 

 

Tell me about your friends, their names and why you like them. 

My friends are Shahala, Shashini, Dinali, Nikita, Diarra and a lot of others. I like my friends because they are always around me when I need them. We go for parties, spend the days and have a good time. 

You did a really big exam. Was it difficult? How did you study? 

It was easy. I wanted to be like Aiya and all my friends. My aunties and Ammi helped me every day, by teaching lessons and asking questions. I find it difficult to read. I did lots of question papers. I kept my studies in my mind for the exam. Aunty Shenenka, my speech therapist taught me how to do the paper fast by tapping the pencil on the table. 

 

What are the other activities you like to get involved in? (Dancing, Singing, Drama?) 

Guiding, and Designing Club. I love to sing and dance and I sing at the Soul Sounds Academy. I like to act. I acted in Uncle Jerome’s dramas too. 

 

What would you like to do after you finish with school? 

I would like to become a Fashion Designer and to model clothes. I also love to cook. I am waiting to go for the saree party of our batch and to go for the Past Pupils Dance. 

This is what Nilly’s mum Nilmini had to say 

When you realised that your little baby girl was different, what was your initial reaction? How did you handle it? 

When I was pregnant, I knew that it was going to be a girl. I had many dreams for my daughter, wanted her to become a Kandyan dancer, wanted her to have long black hair, and so much more. However, throughout my pregnancy, things did not feel the same as for our son. The moment I saw her face, I knew that there was something wrong, but like any other mother, I just rejected the idea. I thought it can’t happen to a person like me. But eventually I had to face the truth and it was not easy. I had many sad times, I cried my heart out, but I stood up strong to face the world with my daughter. 

As research has shown that children with DS are prone to have more medical conditions than others, what did you have to deal with in this context? 

When our daughter was born, she had a hole in the heart. This is very common in kids with DS. She also had a cleft palate. When she was about 3 months old, she developed a kind of fit called Myoclonic Jerks. By the time she was 1 year old, we had to repair her cleft palate. This was immediately followed by heart surgery to correct her hole in the heart. After that, we saw a remarkable improvement in her growth. 

However, by the time she was about 2 ½ years old, her hips became unstable. She could dislocate them by herself. She was not able to walk properly, as she could not support herself on her legs. To correct this, she had to be put in a plaster from her hip downwards. Thereafter, she was in braces for about another 2 ½ years. After this, her walking improved. 

Even now, she has a lot of medical issues, but she faces them with courage. She is a very cheerful girl. If not, we would have found it very difficult to put her through all these procedures. 

 Do you feel that your son was neglected due to the immense attention and time you had to spend with your little girl? 

We did everything as a family. Every time we took her for her medical treatment, our son went with us. When I couldn't attend to our son, my husband helped out. We never missed a Parent’s Day or a sports meet. He became the Head Prefect in a private school in Colombo. He went to university in the USA, did his Bachelor’s and Master’s degrees, and is now working. He speaks to Nilly at least every 2-3 days. I thank God that we have such an understanding son. 

Was it difficult to put her into Bishop’s College at a time when there were no units for special needs children in private schools? 

It was not at all easy. No school was willing to take her, let alone accommodate her in a normal class. The then Bishop of Colombo helped us a lot, and finally the former Principal of Bishop’s College decided to take her in. Very often, the reason for not accommodating them in regular schools is the ignorance of their capabilities. Nilly was able to achieve all this because the school Principal and the teachers were open minded and were ready to make little changes to the way things were done usually, to accommodate Nilly. 

What was the procedure you followed to get approvals? 

We had to contact the Non-Formal Education Division in the Ministry of Education to get information about the process. It is the same process used for the hearing and sight impaired candidates. We had to prepare early for this by getting all the necessary medical and psychological assessments and recommendations done. We started the process in about January of 2015, as the experts have to see the child several times before they could properly form an opinion. The application is issued along with the school applications and is usually sent to the school principal. Thereafter, she was granted permission to do the exam orally and to record her answers. 

How did you prepare Nilly for this difficult task, and how exactly did she do the Ordinary Level examination? 

Some lessons were very hard for her. She had to be taught selectively. Teaching with a lot of practical examples helped her a lot. (Eg; for health about human body, we used a model where all the organs could be taken out and shown). For each lesson, questions were written down and asked from her. We had to teach her how to concentrate and even to answer. 

Even for MCQs, she had to state the number of the answer aloud for recording. The papers were read out to her, answers were recorded and additionally, her answers were written down. There were two examiners in addition to the supervisors, one to read the questions and write down the answers and the other to ensure proper recording. All these arrangements were made by the Examinations Department. It was a long and hard process, but everyone was very helpful. Even the supervisors and examiners at the examination were very nice and kind to Nilly. 

As a mother of a child with DS what are the challenges you face, and what inspiration can you give other parents who are in the same situation? 

First of all the guilt, anger, disappointment has to be overcome. That’s why the support of the husband, family and medical staff is very important at the initial stage. I had a goal. I wanted her to achieve what most people of our country thought a special needs child cannot achieve. I knew she could do it, but may be a little differently. I learnt never to give up, to try and if you can’t, to try another way. It doesn’t have to be what used to be. Take everything as a challenge. Do your best, NEVER GIVE UP! 

Interviewed by Niro Waidyaratne 
Interview photographs by Kushan Pathiraja