Posted in The Up-side of Down's

Being sensitive with Down’s Syndrome…the avoid list

Otherwise known as the Down’s Syndrome To Don’t list

Having spoken to many mums about their personal stories – here’s a round up of some clangers and what to avoid based upon my research:

(Everyone’s story and circumstances are different, of course).

1. Ask about their journey through pre-natal screening.

2. Ask about the intellectual level ‘mental age’ of their child.

3. Shout at, or hit their child or try to force them in some way. Examples I have heard include being smacked and force-fed.

4. Try and reason with their child. Just offer a distraction. Simple!

5. Leave precious or breakable items out and in reach, then complain loudly when they are damaged. You are supposed to be the brainy adult remember…

6. Keep going on about Down’s Syndrome. We know. We are over it. Your turn…

7. expect your friend to endlessly entertain you and talk to you. They have other priorities.

8. Tell their child off. Just be firm and set boundaries. And stick to them. When the only communication that you have got going with the child always starts with the word ‘no’ then you need to re-word your approach.

9. Tell your friend how naughty their child is. We kinda already know…

10. Encourage behaviour that your friend is trying to reduce (for example, by allowing too much physical contact when they’ve already said that they are trying to get their child to handshake rather than hug). Support and consistency is welcome!

11. Tell your friend that their child is eating too much. How’s your eating disorder going then?..

12. Fail to invite your friend to your key events. Hey, if they are your friend, then invite them and their children. Get over it! It’s nice to be invited, even if you find it’s too much of a leap to actually turn up. No-one likes to be left out.

13. Tell your friend how sad you are for them; how much they’ve changed; how on earth can they cope and what on earth are they going to do in the future.

14. Ask them about the local provision of profesional help/counselling/institutional care. Most families with children with a disability already have an army of professionals doing precisely that.

15. Quote some half-baked and misunderstood research or strategy that you have just Googled about Down’s Syndrome. Not interested. probably already read it.

16. Treat you dear friend any differently than you did before. We are the same people. Only more tired. And grown up.

17. At a social gathering, spend your time monopolising your friend’s partner while  said friend runs around without a break looking after the kids. Give us a break please! Going out – and adult company – may be a rare treat.

18.  Turn up late for a scheduled visit, without getting in touch to let people know. It is extremely difficult to cope with a no-show and simply heaps more stress onto your friend and their child. Be reliable – or text ahead.

19. Cry. Or hit on their confused partner.

20. Wring your hands and murmur about how awful things are for your friend. It’s their life. Get on with yours…Cheer up and be a pal — or ship on out.

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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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