Ramblings of the Bearded One

Freitag, 11. September 2009

Downs Syndrome is Not an Issue

A tricky one this. Having started my own blog I have, naturally enough, begun reading others. It didn’t occur to me straight away to look for blogs connected to Downs Syndrome (or Down Syndrome – without the ‘s’ – as they say in the US), despite the fact that my daughter was born with it over seven and a half years ago. This is primarily because it is not an issue for me.

Of course sometimes it becomes an issue - like when we recently moved house and had to sort out her schooling needs, or on School Sports Day when she enthusiastically came last in almost every event – but on an everyday level Meg is just Meg in the same way that our ten year old son Rogan is just Rogan. Each has their own way of behaving and each brings their own unique set of complications and rewards. We deal with Meg’s needs in the same way we do with any of the other children, in the same way any parent does – doing what is needed, in the way that seems best at the time. It doesn’t become an ‘issue’ until someone else makes it so.

So why am I mentioning it now? Because I’ve been looking through some other sites where DS is one of the primary focuses of the blogs and two things have leapt out at me.

The first is that the vast majority seem to be by people who have a religious background that means that they now thank God for their son or daughter, and see their child’s DS as a blessing or a lesson. But as a profoundly atheistic father I winced intensely after she was born and a few people commented that having a child with DS was a blessing from God. I don’t need a god to tell me how special my daughter is. And I think, more importantly, I don’t need someone else trying to comfort me with their religion in what they perceive to be a difficult time for me. There’s a horrible patronising element to it that makes me want to scream/puke/thump someone (delete as appropriate).

The second thing is that, in my mind, one of the primary purposes of sites that are focusing on DS, is that it helps other people come to terms with the normality of the condition – whether that is new and anxious parents, or even friends or relatives who are coming into contact with DS for the first time. But undermining this noble aim is the lack of photographs about showing parents interacting normally with their child. There is a fear – perhaps understandable, but in my opinion unnecessary – that by having identifiable photos of themselves and/or their children, they could be stalked by some kind of pervert or weirdo. So as a bollocks-to-that gesture, below is a picture of my daughter and her very proud father.

If you would like to see a very well written and enjoyable blog about the everyday experiences of a father of a child with DS, then I would recommend you visit this site (http://downsyndromelife.blogspot.com/). There is only one mild reference to God, if you search for it, but his emotional experience of parenthood is tangible and warming.