On Mar 21 a number of organisations in Bangladesh observed Down Syndrome Day and on that day I remembered my own elder brother. My earliest childhood memory is of my elder brother sitting, it seemed to me, permanently, in a push-chair and sometimes in a wheelchair. It was something that I accepted as a young child, not knowing it was unusual. My brother, who died in 1999 at the age of 55, was severely mentally handicapped with Down syndrome, learned to walk when he was 6 years old and was not able to speak. I should emphasise, however, that he had a definite character and personality and at the residential home at which he lived he was a useful, helpful, and cheerful member of society.

Our elder son, Neil, also has a severe learning disability and, when he was diagnosed as such within a year of being born in New Delhi in 1975, we were told by doctors there, as well as in UK, that he was unlikely to ever talk and was expected to walk by the age of about 5-6 years. Initially he was diagnosed as having Down syndrome but that was subsequently found to be the wrong diagnosis. My wife and I were obviously depressed and completely at our wits’ ends, but that did not stop us from searching out all possibilities of finding a cure. We tried all types of Indian medicine and my wife began to spend a considerable amount of time deep in prayer. This brought her inner peace which helped her deal with the situation in a better way. To encourage Neil to speak I would sing nursery rhymes and I would sometimes miss out the rhyming word at the end of a line. For example:

“Appley Dapply, a little brown mouse,

Went to the cupboard in somebody’s ——-

In somebody’s cupboard there was everything nice,

Cake, cheese, jam, biscuits, all charming for ——-“

Eventually, one day, to our great joy, he field in the gaps with ‘house’ and ‘mice’

At the same time we tried to provided what stimulus we could to our son and he began to walk at the age of about 2 years and now, aged 43, can hold a reasonably good conversation, though he cannot live independently at all. We have always tried to tell our son Neil, and his younger brother Rohin, now aged 37 and who is a cardiologist, that there is no part of the English vocabulary that includes the words “I can’t do it”. Neil has become, over the years, a happy, loving member of the family, and when he feels in a good mood, he can be extremely helpful and can help in the kitchen, prepare the table for a meal, and even wash the car or mow the lawn. If he is not stimulated to be involved in such activities he will just sit in front of the television and watch the many sports programmes available on British television.

For someone with a severe learning disability, Neil has always had an incredible memory and a remarkably good sense of direction. Also, because he is on regular medicine due to his epilepsy; he is always alert when a member of the family is ill, and takes on the responsibility to remind that person to take his or her medicine on time.

From these observations, it can be seen that Neil is able to participate fully in life even though he will not ever be able to live independently. He has all the emotions that you or I have and an enormous sense of humour. He also has the capacity to laugh at himself. Neil’s situation is very different from that which faces children with a disability in Bangladesh, particularly, if that child lives in the rural area. However, I have made these few comments and observations from my personal experiences with the hope that it might encourage others to feel less lost and hopeless when they know their child is handicapped in some way.

Parents of children with disabilities of all kinds in Bangladesh must never feel ashamed or embarrassed that they have a child with a disability. As parents, you must love all of your children equally and have as much fun with them as possible even if they cannot see, speak, hear or understand. When our Neil was young, I used to play the fool a lot of the time, so parents in Bangladesh must unwind and become a little bit crazy too. Just getting Neil to laugh was like giving him a good medicine as he would be happy and he would eat well and complete all his daily activities in time and this made his parents happy too. So, parents should ‘let their hair down’ and have fun with their children.

Julian Francishas been associated with relief and development activities of Bangladesh since the War of Liberation. In 2012, the Government of Bangladesh awarded him the ‘Friends of Liberation War Honour’ in recognition of his work among the refugees in India in 1971 and in 2018 honoured him with full Bangladesh Citizenship. In 2019, Julian has also been honoured with the award of the OBE for services to development in Bangladesh.