Our eldest son Ben is ten years old. He plays football and cricket, cycles and swims. He enjoys cartoons, playing Minecraft and other computer games, likes music and reading. Ben has a well-developed sense of humour which tends towards the absurd. He is an expert at annoying his younger brother, is passionate about ice cream and for years has been fascinated by dinosaurs. He also happens to have an extra copy of his twenty first chromosome – he has Down’s Syndrome.
Ben was diagnosed postnatally and at the time it was a shock. This was due in part to the diagnosis being unexpected. Blood tests and a nuchal scan during the pregnancy revealed a low probability of Down’s Syndrome. More to the point, I had absolutely no idea what the diagnosis meant. I had never met anyone with Down’s Syndrome. I had seen an episode of Inspector Frost which featured a character with Down’s Syndrome. This, and the rather dated leaflets handed to us at the hospital were all I had to go on. Things have improved since then. People with Down’s Syndrome are more represented in the media, (although there is still a very long way to go). There are several blogs with the stated aim of raising awareness of the realities of Down’s Syndrome and there are online parent forums which have grown with the rise of social media. None of these sources of information and help were available to me when Ben was born. We were wonderfully supported by friends and family but they were also unsure of what the diagnosis meant for us. Indeed, Ben was about eighteen months old before my first thought each morning ceased to be ‘my baby has Down’s Syndrome’.
Learning to adapt to Ben’s diagnosis has been the most profoundly enriching but also challenging experience of my life. I have had ten years of disrupted nights, do more laundry than would seem physically possible, have a filing cabinet of paperwork just for Ben and a great deal of my time is spent attending appointments. However, Ben touches people’s lives.