A Parents view

Down’s Syndrome – Give Life a Chance!

When my wife rang me at home from hospital after Christopher’s birth, which I was present for, she asked me to come back into hospital on my own and not to bring any flowers or chocolates. I feared from her voice and instructions that something was wrong, which she confirmed when she told me that Christopher had Down’s syndrome. The midwife/nurses who recognised the physical signs at birth, decided to let my wife get a good night’s sleep after a long and difficult labour, before breaking the news to her. We were both absorbing the news and I’m ashamed to say now, very much in shock, when a doctor sat down with us and asked with her first question, whether we were going to keep our child. I was almost as shocked by the question as I was by the news that our son would ‘never be normal’. The doctor explained that the question had to be asked because from experience she knew that some or many parents, I can’t remember exactly how she quantified it, choose to give up their child at such a time because of the diagnosed disability. In those first few minutes of revelation to this day, we have never ever thought of giving our precious son up.

My wife, who gave birth to Christopher our third child when she was 38 years of age, was never tested to see if she was carrying a child with Down’s syndrome, but as I said to BBC Radio Kent on their live breakfast show on the subject of Down’s syndrome and abortion statistics, had we known, as Catholics and Pro Life supporters, I believe we would have decided not to abort but to have the beautiful child who has blessed every day of our lives since his birth.

I earlier referred to being ashamed at being in shock on receiving the news that Christopher was born with Down’s syndrome, because with aspirations shattered, we found ourselves thinking of all the things he would never be able to do, of all the opportunities open to his brother and sister later in their lives that Christopher would never enjoy. Our minds had been flung into negative gear and seemed to be stuck there feeling sorry for Chris and perhaps ourselves, but after encountering the support of family and friends, the Down’s Syndrome Association and Mencap, who were all marvellous in targeting us with the support we needed, we changed gear and slowly started to move forward, instead concentrating on what could be achieved and how best to support his development. The support organisations we encountered were obviously aware from the start that the parents of children with special needs have special needs themselves and supported us, accordingly.

Chris is now 24 years of age and I know from following the progress of the DSA’s education campaigns targeting the parents of newly born children with Down’s syndrome, that the education and support package which was already good when Chris was born, has continued to grow and improve since then. What I’m not familiar with is what information/guidance finds its way into the hands of parents whose child is diagnosed with Down’s syndrome whilst still in the womb. We know from personal experience, how the trauma of finding out that one’s child has Down’s syndrome, can cloud thinking and throw thoughts and perhaps actions into turmoil, so it’s vitally important that parents’ whose children are diagnosed in the womb as having Down’s syndrome are supplied with all the pro-life support they require at this stage, before it becomes too late to help them and potentially save the lives of precious beings. Is having a family that conforms to the norm, whose children are all above a certain level of IQ, who might walk and talk without problem, who are mainstream rather than ‘special’, the deciding factors for parents in terminations? Or is it the parents’ perception of their ability to cope with disability and difference and labelling and a myriad of other issues, including good parenting in a society that celebrates and rewards achievement and competition, which tips the scales against the unborn child with Down’s syndrome? Whatever the factors and I accept that they are many and varied, if correct the 92% termination rate in the UK poignantly shows that more needs to be done to educate people in general that it’s ok to be different – it doesn’t make one any less valuable as a member of society or any less loving or worthy of love in return – such education needs to start in the home and at school, well before couples are ever faced with the choice. Until we reach a stage in our development where we celebrate difference and diversity, normal and special, embracing the sanctity of all life, such dreadful statistics will continue to taint society.

Christopher has given us the chance to enjoy a family life that wouldn’t be as rich or complete without him and we thank God for every day of his life, just as we do for the lives of his siblings. His achievements include being the first child with Down’s syndrome to attend a mainstream primary school in NW Kent: St. Anselm’s Catholic Primary, Dartford and the first child with Down’s syndrome to attend full time at a mainstream secondary school in Bexley: St. Columba’s Catholic Boys, Bexleyheath. Christopher is a senior altar server with 17 years experience at our local church: St. Vincent’s RC, Dartford. He has been instrumental in effecting major change in disabled access policy and free carer concessions for people with learning difficulties. In April/May 2009, Christopher held a one man photography exhibition at the Mick Jagger Centre and has exhibited his images at the OXO Tower Gallery and the Proud Gallery, London. In July he gave a speech on his photography to 900 pupils and staff at Dartford Grammar School and in October/November 2009 he exhibited an image in the Project Volume Exhibition at the Truman Brewery Gallery, Brick Lane.

Written by Andrew father of Chris, October 2009