My son Ben was born at 5.05pm on Sunday 25 November 1990. I was just 30 years of age.
Within moments, I sensed something was wrong. The medical staff were muted in their congratulations, nevertheless, they handed him to me and I marvelled at him as any new mother would. My husband left me to make telephone calls and fetch our two year old daughter to meet her brother. But I knew something was up. The Staff didn't behave in this way when my daughter was born.
Whilst he was gone, a nurse came to me and asked me when my husband would be back. "Not long", I replied. "Ok, the doctor will see you when your husband returns". I broke into a cold sweat. What was wrong? My head was spinning, I was exhausted and I kept looking at Ben for a sign, but could see nothing but a beautiful new born baby.
My husband returned, and within minutes a Paediatrician was at the bedside. She gave Ben a casual examination and then came the words. "I have to tell you that your son has Downs Syndrome". Our world collapsed.
Nothing had been revealed in all the antenatal tests, there was no genetic link with either of our families, the chances of my having a child with DS were put at 1 in 780. The shock was immense.
The days that followed were hazed in a fog, I remember words: "it will be a job for life" (my mother-in-law), "you know, you don't have to keep him", (my mother), "you must be Angels, God only chooses Angels for these children" (a nurse) and "if there's a disability to have, Downs Syndrome is probably the best" (my GP). My GP later said to me, "don't worry about Ben, he will lead a happy life, he will not know any diffierent".
There followed a period of complete uncertainty. We lived on Whisky and cried non-stop. It was almost as if we had lost our child, a bereavement, a grieving for the child we would never have. Ben went into temporary Foster care whilst we decided whether we could cope. The trouble was, we didn't know what we would have to cope with. Downs Syndrome, like so many disabilitiies has a wide spectrum of difficulty. Some people with Downs Syndrome (DS) go on to live almost "normal" lives, holding down jobs, driving cars, even marrying. Others do not. We would not know the full extent of Ben's difficulties until he reached the age of approximately 12.
Christmas was approaching and my emotions were ragged. Friends and family rallied and tried to give their advice, but none of them really knew of the trauma of giving birth to a disabled child and the worry that that child would bring over the coming years. Neither did any of us know of the absolute joy that our child would bring.
A decision was made to bring Ben home just before Christmas. That was it. No going back. I forgave my mother and mother-in-law for their earlier comments. They came from a generation embarrassed by disability, it was a stigma to them, these children were mongols, spastics, retarded, names that I hope are no longer used today.
At first I was very self- conscious when I took him out. Convinced that people were staring and pointing (and believe me, some did). Eventually, I overcame my discomfort and stared back, daring them to look at him in that way.
The years that followed were littered with hospital visits, physiotherapy sessions and occupational therapy sessions. He was generally healthy, had a minor heart lesion and hearing and speech difficulties, but was active and walked at 21 months.
Ben was, and is a charming character, full of fun, enjoys a joke and a comedian. When Ben was about 5, I remember one hilarious incident as we left a local golf club having had Sunday Lunch there. Ben bolted across the first tee with my husband in hot pursuit. Golfers looked bemused, my husband (who was a member there) looked hot and bothered and Ben was in fits of laughter. Our friends with whom we had dined, fell about laughing in the car park.
Ben attended many special schools, ranging from moderate to severe learning difficulties. He was always in the school play, loved the attention and produced many a laugh, a real character, always willing to please and enjoying being centre stage.He memorably played the part of Father Christmas one year, to rapturous applause from the audience. He didn't want to leave the stage and kept coming back for more! At that time, he was in a school for severe learning difficulties, and was described as a "big fish in a small pond", so we moved him to a school for moderate learning difficulties. Big Mistake. Ben was out of his depth, so were his teachers.
In the summer of 2005, we moved house to a diffierent county and Ben had to move schools. He was approaching 15, a large lad, loved his food, mobile, but displaying some worrying behavioural difficulties, puberty had set in and he didn't understand himself, let alone how he was supposed to behave. Ben was admitted to an MLD school (the only one with a place available) near our new home. Within days there was an incident, the school tried, but within 6 weeks of him starting, they made it plain that they couldn't cope with him and that their school was not the right place for him. What followed was a period of 8 months when Ben was out of school altogether whilst the Local Authority (LA) argued with us over his placement. In January of the following year, the LA arranged for Ben to attend a privately run school for a risk assessment over a period of a week, which they would pay for. Ben presented many difficulties during that week, and the school produced a report again stating that Ben needed a much more structured environment and that they could not offer him a place as their risk assessment indicated a strong tendency to run off and harm himself, or others. Astonishingly, the LA refused to accept the report and it was another 4 months and upon the instruction of solicitors that we forced the issue. Ben finally gained a place at another privately run SLD school close to our home, for which the LA now pay for him as a weekly boarder. That episode cost us over £10,000 in legal fees.
Ben is now approaching 18, a gentle giant, kind, sensitive, difficult, eager to please, repetitive and loving. He has the mental age of a five year old, will never lead an independent life, cannot understand money, has no road sense and cannot read or write more than a few words. He will never learn to drive and it's unlikely he will hold down anything more that the most menial job. He wears bi-lateral hearing aids and has speech and learning difficulties. He loves Eminem and Robbie Williams is his hero.
We are now exploring the joys of "adult services" for Ben's future. The LA have done a lot of form-filling, but, and I quote, "we don't really know what services are available at this time". So here we go again, another fight, another battle to ensure that our child, this young man receives all the help, understanding and care that he deserves. If only we could change attitudes. So often, the authorities, pay nothing but lip service to the needs of these young people, so often, they fail to provide, haven't got the money, or the agencies they pass the buck to can't provide either.
I think Ben has lead a happy life so far, my GP was right in that respect, I thnk he may suspect that there's a different life to be had. He gets upset when we can't let him out of the house alone, or that his younger 15 year old brother doesn't want to take him out with him, he thinks he will drive a car and have a job and get married. I doubt it. All we can do is ensure that Ben, our wonderful loving son has the best opportunities available to him, for the rest of his, and our lives.
To all parents of disabled children out there, I salute you. Keep fighting and don't lose heart. These children are worth every moment and I wouldn't have missed it for the world. He was and is a Gift.
