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*spin off* What is the correct response?
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28/12/2012, 07:23 PM
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Posts: 271
Joined: 13-November 11
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This is a spin off from the high risk of Downs Syndrome thread.....a few years ago my aunt would have been in a similar situation, her unborn child was high risk downs baby and they chose to not test further or terminate. Their son doesn't have Downs. I can't remember how I responded to their news of the high risk, but with my 20-20 hindsight I'm thinking it probably wasn't ideal. So what is "ideal"?
I have learnt only through experience what a mother who suspects her son has ASD DOESN'T want to hear from her friends. I got so experienced with hearing what I didn't want to hear, I wanted to write a book on what not to say.....the only problem is, by the time someone reads the book, they've probably already said the wrong thing. And yes, I'll admit it....a few years back when a friend of mine told me her son had just been diagnosed with ASD I said the wrong thing (same kinda thing people said to me).
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28/12/2012, 09:28 PM
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Posts: 2,296
Joined: 31-July 10
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The correct response will probably vary but for me, in my situation I would have just liked people to ask further, not try and cheer me up or make assumptions about what they thought was going to happen. Responses like, "So what's the next step?" Or, "Has the Dr/hospital given you any further information about what they've found?" Just questions, not statements. And don't try and brush it off with, "Oh don't worry, you'll be ok." Because when you do that you take away the persons oportunity to discuss their fears or worries.
I actually did get cranky at people who told me 'not to worry' because I was worried and I needed to talk about it but telling me not to worry just meant they weren't willing to listen.
Do t try and make jokes about it, don't try to cheer them up, just let them talk if they want to, ask a question or two but let them lead the way.
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28/12/2012, 10:11 PM
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Posts: 161
Joined: 27-October 08
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Although I've not been in the situation, my feeling would be that, as PPs have mentioned, just a "how are you feeling about that? What happens next?" type of response would be most useful.
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29/12/2012, 12:05 AM
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Posts: 3,606
Joined: 26-April 11
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"what a difficult situation. How can I help?" We were high risk and chose not to abort or have further testing. The worst comment was my older sister exclaiming how we must be nuts to want to keep 'it' 'it' is now 2.5 and shes delightful, with zero of the predicted issues
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