This last couple of weeks have been a big ones for the Down’s syndrome parenting community. You would hope that this was because the country has been covered by a foot deep blanket of snow, thus ensuring that we all got out sledging and having fun with our families, but no. it has been big for a very different reason.
A couple of weeks ago, the NHS revealed that they are going ahead with using a new non-invasive (well, if you can call a blood test non-invasive, but I suppose it means that a needle won’t get poked particularly far into an expectant mother) screening test for Down’s syndrome.
There are a couple of other genetic abnormalities tagged on to the end, but Down’s syndrome is the main target here, I don’t think anyone would dispute that.It's a difficult subject to write about. All of us with a child, be they baby, toddler, teen or adult, with Down’s syndrome have an emotional investment in the issue – regardless of what we may or may not have done with the information, if we had had it when it was our turn (and some of us did).
When we write about it, we are writing about our children, our lives; we can’t be dispassionate, or objective.
But whatever the rights or wrongs of prenatal testing, screening or terminations, I can’t get away from the idea that this test is about more than Down’s syndrome. It’s about more than choice, or information or health. It’s about human life – and what that means.
You see, when my son was born with a little added extra I realised something that I don’t think I had quite understood before (well, I might have thought I did, in an academic it-won’t-happen-to-me kind of way); that life is random, and that we have very little control over it. We think we do. We eat well and exercise, we take tests and we talk about risk, but when it comes down to it, we are tossed just as much on ‘Fortune’s Wheel’ as our ancestors ever were.
Now, I’m not into denying people choices – and a woman has a right to choose what happens to her own body as far as I’m concerned – but I am asking questions about who we think we are, and whether or not we think we have a right to a perfect life.
An antenatal screening check won’t guarantee that. It won’t mean that you have gestated a genius, and neither will it mean that you will find parenting easy. It won’t mean you get a sleeper, or one that feeds well, or has lots of friends, a straight A student, gets a brilliant job and provides you with perfect grandchildren either.
Parents of children who are genetically perfect don’t have a monopoly on joy, any more than those of us whose children fall short of ‘national expectations’ have a monopoly on pain or tragedy. Life, and family life is just that – a roller coaster ride of ups and downs.
I think it’s fair to say that parents of children with Down’s syndrome come in all shapes and sizes, with lots of different beliefs and ways of going about things, but in this I think we speak with one voice: we love our children, they are not monsters, and our families have just as much capacity for the good and the bad as anyone else’s.
It’s because we are human.
Many others have written about this and we wanted to share some of those posts with you too.
- Downs Side Up
- @AspieDeLaZouch on SNJ
- Nancy's own blog
- It's All About Evie
- Orange Juice Flavour Sky
- Down Right Joy
- Ollie and Cameron
- What’s the point of the Down’s Syndrome Bill? One parent’s view, plus a legal opinion - December 13, 2021
- Nancy’s tips for writing an EHCP parental statement - January 22, 2018
- Removing the barriers to bedtime for children with disabilities - November 25, 2016