By Peter Brackett
As with every parent, it will be a moment I never forget. The image of my newly born son being handed to me and my wife in the seconds after his delivery. That euphoric moment marking the beginning of a journey, the flashing forward of aspirations, hopes and – dare I say it – expectations; all the emotions of a parent meeting their new-born child.
Unlike the clarity of that moment, the succeeding weeks after the birth of my son were a blur. First there was the shock of the words of the paediatrician standing over the cot where my seemingly perfect boy lay nonchalantly uttering the words “don’t worry, its nothing life threatening,” followed by the inquisition about our lifestyle – “did you drink alcohol during the pregnancy”? There was the revelation of a faulty heart; something that would require surgery in the coming years. And then, at the confirmation of the diagnosis of Down syndrome, there was consultant listing the things my son would not be able to do – not get married, not have children, not drive a car…
The first few weeks laid the foundation for what was to come. The empathy and compassion shown by the nurses and special care unit team instilled in us a sense of resilience, whilst the negativity of the experts steeled us to prove them wrong. But I reflect on that time and think how easy it would have been to follow a different path; one where we wouldn’t have been judged if we had given up or consigned his life to an institutionalised existence. I think back to the absence of accurate information, the lack of a real understanding of what he and we would face and, what is worse, the negativity of message, justified by some perverse well-meaning sense of not wishing to get our hopes up.
Fifteen years on and Sam is doing just fine. He is healthy, in mainstream secondary school, has friendships, hobbies and, just as any boy of his age, dreams for his life to be – of independence, of employment. Every teacher who works with him speaks of his ability to influence and charm others and how their classes have accepted him as part of the gang and learnt as much from him as he has learnt from them. Similarly, as Sam’s parents we’ve learnt so much. We’ve learnt to be the experts and realise if things are to change, we have to educate the professionals – teachers, doctors, social care practitioners – as well as challenge the prevailing stereotypes in the community.
The tragedy is that as soon as we feel progress is being made, we hear of another instance of new parents facing the same misinformation at the birth of their child; we hear of parents battling local authorities desperately trying to get the most basic of support; we hear of schools unwilling to accept children or of educational provision that is completely inappropriate to the learning profile of a child with Down syndrome.
So that is why an Act of Parliament is so crucial. People with Down syndrome need to be recognised, not marginalised. We can only provide accurate information on the lives of people with Down syndrome if we gather that information – which, as a start, requires recognition. Armed with better information we can help professionals give better advice, parents make better choices, educationalists devise better study programmes, employers make more informed decisions and people with Down syndrome have better lives.