This summer our family went on a holiday to Geneva. This was our first expedition outside the English speaking world, and neither my wife nor I speak a word of French. But the world has many wonders to see, and language barriers can be overcome. I found initiating the conversation under these circumstances to be the most difficult part. However, a smile and a “Bonjour” was usually sufficient to break the ice in any conversation. Of course, this didn't always happen; on one occasion, while I was struggling, my son, Oshadi, came forward and said, “Bonjour, je m'appelle Oshadi.”
This was extraordinary, as Oshadi is not an ordinary child. He has Prader-Willi syndrome and thus is a child with special needs. Oshadi was born in Sri Lanka in 1990 and had problems from birth, being floppy, difficult to feed, and then septic. He eventually left the special care baby unit at 45 days old still being partially tube fed and treated with antibiotics. The next few years were eventful to say the least: he had recurrent seizures, as well as an episode of heart failure after myocarditis that required ventilation. As parents, we found his development was painfully slow. He never crawled but eventually walked at 30 months. He spoke no recognisable words until he was nearly 4 years old.
Oshadi joined me in Britain when I came for my postgraduate studies. He initially started at a mainstream school but was transferred to a special school within a term. Today, at 13 years old, his general development is around the 6 year level. We always had realistic expectations of Oshadi, but I regret that it became a family joke when he started learning French at secondary school. Our attitude was that at least he should know that there were other languages in the world and not be surprised if he ever heard people speaking in languages that he did not understand. But, as usual, Oshadi surprised us again.
As Buddhists, some of our family members attribute Oshadi's success to “good karma.” The same group attributes his disability to my “bad karma.” I disagree. Oshadi's success was entirely due to the equal opportunities he had in life. We accepted Oshadi's disability as an essential part of his being, but we have tried to treat him just like any other child. As a result, he has surprised us at every stage in life, in surviving major life threatening events and now speaking in French.
I had no choice but to move from my homeland to Britain for my son. Although I was able to offer Oshadi the best available health care in Sri Lanka with no prejudice against his disability, the same was not true about education, for he would never have received any. Indeed, he would, like far too many disabled children, have been condemned to spend a lifetime hidden within the family household because of the perceived stigma and shame of his disability. My coming to Britain was necessary to ensure Oshadi's education. Even though I love Sri Lanka deeply, I have a greater love for my son. I have always believed Oshadi has the same rights as any other child, in particular to life and education. I grieve that this right to an education is still denied to most of Sri Lanka's disabled children.
Perhaps Oshadi's success will open the authorities' eyes to their plight.
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