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*spin off* What is the correct response?

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#1 back*again

Posted 28 December 2012 - 07:23 PM

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).

#2 Lees75

Posted 28 December 2012 - 08:52 PM

DD had a number of soft markers for Downs Syndrome at her 19 week scan.  We chose not to test further and in all honesty, decided not to really talk about it further. I can't really remember anyone saying anything to me that majorly upset me.

#3 TillyTake2

Posted 28 December 2012 - 08:58 PM

I don't know what the right response would be but I'd probably ask them how they are feeling about it & go from there.

I haven't read the tread though so I may be way way off!

#4 TillyTake2

Posted 28 December 2012 - 09:05 PM

Where ia the thread? I can't find it...

#5 Feral_Pooks

Posted 28 December 2012 - 09:08 PM

I would respond by asking how they were going and feeling about it and offering my love and support, whatever their decisions regarding testing and the pregnancy.

I copped attitude for not having the scanning done. Apparently that was irresponsible of me. You can't win whatever you do. I wish people were less worried about giving their opinion and more worried about the person in front of them having a rough time.

#6 Super Cat

Posted 28 December 2012 - 09:28 PM

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.

#7 Zaeth

Posted 28 December 2012 - 09:55 PM

I think it may depend on the person and the situation. For example, my sister had a 1 in 30 chance of her child having downs and I said something like "No matter what happens, we will be here with you and know that you're a strong person and will be a great Mum whether the child has Down's syndrome or not". She then said that they were having an amino and would probably terminate if the baby had downs! I was shocked, and I really didn't know what to say then! Turns out her baby did not have downs.

#8 bees-knees

Posted 28 December 2012 - 10:11 PM

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.

#9 IShallWearMidnight

Posted 29 December 2012 - 12:05 AM

"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 biggrin.gif

#10 Mpjp is feral

Posted 29 December 2012 - 06:13 AM

Thing is, everyone is different. What might upset me may not bother you, and vice versa.

#11 Froger

Posted 29 December 2012 - 08:53 AM

QUOTE (meplainjanebrain @ 29/12/2012, 06:13 AM) <{POST_SNAPBACK}>
Thing is, everyone is different. What might upset me may not bother you, and vice versa.

Yes this.

I was given a 1 in 10 chance with one of my children from the scan and blood test. I didn't have any further testing, as I considered the risk of miscarriage was too high. I did find it an incredibly stressful pregnancy not knowing though.

I went into premature labour at 27 weeks, and I can remember talking to the doctors and they asked me if when the baby was born if I wanted any treatment for her if she did have DS.  I suppose for some people this would have of been something they wanted to discuss, but I was absolutely horrified. Of course I wanted my precious baby to be given every chance of life, and to be given every possible treatment! I felt really unsafe in the hospital after that, and I also felt my baby was unsafe.  sad.gif  However I suppose other people would have of been grateful to be able to have such a frank discussion with the medical staff.

Anyway, luckily my premature labour was able to be stopped and I went home, but I was terribly distressed. But of course the medical staff weren't to know I would be so upset. I guess this is a necessary conversation they have with alot of pregnant women.

Edited by SarahM72, 29 December 2012 - 09:13 AM.

#12 FiveAus

Posted 29 December 2012 - 09:31 AM

People usually don't know what to say when confronted with someone else's bad or sad news, so they often say what they *think* is the right thing....but usually it's not. And there might not be a "right" thing to say in each situation.

I work in a job when occasionally complete strangers have to tell me their baby or child has died, and after years of it, I still don't know what to say so I limit it to "I'm so sorry, that's terribly sad" and continue on with business as usual. But hearing it always, without exception, rips my heart out and tears it to shreds and I usually have to leave my desk afterwards and head to the bathroom for a bit. But none of this is ever conveyed to the person who told me, and I'm sure a lot of them go away thinking I simply didn't care.

#13 Riotproof

Posted 29 December 2012 - 09:42 AM

I think all you can do is congratulate just like you would any other pregnancy and then try to gauge how they are feeling.

I did find this article good, http://katrinastonoff.wordpress.com/2007/1...-down-syndrome/ wonder what other's think?

#14 Overtherainbow

Posted 29 December 2012 - 12:13 PM

I don't think there's one answer but it would depend on the individual and the relationship you have with that person.

#15 Fenrir

Posted 29 December 2012 - 12:59 PM

I think maybe the correct response IS to say how sorry you are. It is natural to express sorrow at the possibility of a baby that may not be the perfectly healthy child that everyone wants.

It's the flippant comments that are made while trying to lighten the mood that can cause the insult.

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