Posted in The Up-side of Down's

Living with DS. Foot in Mouth Disease

People say the funniest things. Especially when it comes to the uncomfortable subject of childhood disability. I am sure there are universal mouth in foot moments that all parents of disabled children have to endure. In the beginning I found it all quite mortifying, but eventually, with so much else to cope with, I realised it was ‘not my problem’ to deal with other people’s ignorance and insensitivity.

My son

With the benefit of a few years down the road, I now feel confident enough to give a little advice. I realise that for some people, the realisation that they are in the presence of a disabled child can be quite overwhelming. After all, the parents have had time to get used to the idea and get on with it, whereas for the person having this first encounter, all sort of feelings, insecurities and anxieties suddenly seem to hit them in a great tidal wave of sadness, fear and embarrassment. Or at least that is the case for some. And that’s when foot in mouth disease strikes.

The single most ridiculous, insensitive and plain rude question that many mothers of children with Down’s Syndrome have to field (and yes, I am still fielding this one, 11 years later) is:

Did you know you were going to have a Down’s baby?

Let’s just consider this question for a moment. There are two possible responses. No, three.

1. No

2. Yes

3. None of your business. (or words to that effect).

What you are really doing, with the child of the conversation probably sitting listening to you, (and you possibly chatting to a mum you hardly know) is talking about her experience of antenatal screening and stand on abortion. Is that really a suitable conversation topic round the swings or in the supermarket queue?

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Surviving in the remote but glorious Pembrokeshire 'outback' isn't enough - I wanna thrive and feel happy to be alive....I hope my posts make you feel that way too :-)

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