What would you have liked people to say to you, when you found out about your DS child?

Sorry bout the title- trying to fit it in....

I guess what I am asking is what would you have liked people to say to you when they found out your child has DS? We all know what not to say (there's some doozies in the questions about DS thread!). But other than Congratulations- what else would you have liked (or still like) to hear?

"She's beautiful"
"Is there anything I can do to help?"
"You'll be fine/great at this etc"
"So what will her having DS mean in the short term?" - from close friends and families!!
Mostly - be prepared to listen and follow the parent's lead - if they are happy and celebrating - join in!! If they are a bit shell shocked or sad - be gentle and listen. Offer to help, pick up the baby for cuddles etc (if you can)
Sometimes just being there and visiting is more than enough.

When they find out now:
"She's gorgeous" still works!! or "my she is doing so well, is so clever, beautiful etc" (none of which is an exaggeration of course!!! ). A nod of acknowledgement - yes I heard - but then move on!! If you are one of her teachers - "Ok, that is fine - what should I keep in mind to help her swim, learn, etc"

??????????? Hard question, for me anyway.
Its not what i would have wanted them to say as what i would of liked them to ask.
Bit of background...............Ive been a single parent for the last 8yrs so all my friends etc have seen me start all over again and manage a whole range of things on my own. Im not talking just setting up home again etc but big major things with the ex that im not even going to go into. So i think they see me as someone who can handle anything, i lost a very dear friend because of this as all i heard was her problems and not once did she think that maybe i needed help.
I would have liked people to ask me if i could handle it, would i be ok, and not just assume.
Of course i would have told them yes cause to me Ds is nothing compared to some of the shit ive had to deal with.
I have an amazing group of people im close to and friends i dont see all the time who have been amazing and just treat Amarli as the new kid on the block and because of this i feel out of place when you all on here talk about the stupid comments made etc. Yes i know that at some stage i will come across the idiot with a bad case of verbal diarrhoea but trust me ladies im ready Im too straight up for my own good.

I guess just what they said when my others were born,
"Very cute"
"Well done"
"Sleepless nights up ahead" lol....

or even nothing...

Cas

Amarlismum wrote:

Ive been a single parent for the last 8yrs so all my friends etc have seen me start all over again and manage a whole range of things on my own. Im not talking just setting up home again etc but big major things with the ex that im not even going to go into. So i think they see me as someone who can handle anything, i lost a very dear friend because of this as all i heard was her problems and not once did she think that maybe i needed help.
I would have liked people to ask me if i could handle it, would i be ok, and not just assume.
Of course i would have told them yes cause to me Ds is nothing compared to some of the shit ive had to deal with.

You sound so much like me Is that a bad thing?

Quote :

You sound so much like me Is that a bad thing?

I think im a wonderful person if i must say so
But Kat do you have a warped sense of humour and great quick come backs, cause that is what counts.

Robyn- My nickname was always Wacky since I was an early teen- that should tell you something about my sense of humour and my wit is of the sarcastic variety, I tend not to show it on here as it comes across in writing not quite like I intend

I don't think there is anythin you SHOULD say. A baby has just been born... celebrate, congratulate and be in aww that a new life has entered the world.

I guess the one thing that sticks from the very early days is "Oh! She doesn't LOOK downs!"
Are you kidding me!? It's as plain as the nose on her face! LITERALLY!!!

And "You knew before she was born and you still went agead with it!"
Um, yeah of course! She's MY baby!

I, like most of you, can think of all the things not to say!
One of the things that sticks in my mind most was what my brother said to me (relating from someone else he knew who's son had DS and they were finding it very hard to accept twelve months on) and that was (I'm paraphrasing) it's not the kids fault, they will have a good life if they are loved and accepted as any other family member so get over your own grief and get on with being a parent.
It seemed a bit harsh at the time but it really helped me in those dark hours in the first six weeks or so.
But the absolute worse thing any one can say is "YOU WERE CHOSEN BECAUSE YOU ARE SUCH GOOD PEOPLE AND CAN COPE WITH IT". If I had a dollar for everytime that sentiment was expressed I wouldn't be at work now. How on earth does anyone know that you'll be a good parent??????????

MillyMoo wrote:

"Oh! She doesn't LOOK downs!"
Are you kidding me!? It's as plain as the nose on her face! LITERALLY!!!

hahaha I had to laugh at this one because when people say that to me - I'm always surprised and say, "You don't think so? I think it's quite obvious really!"

Cas

caspearson wrote:

MillyMoo wrote:

"Oh! She doesn't LOOK downs!"
Are you kidding me!? It's as plain as the nose on her face! LITERALLY!!!

hahaha I had to laugh at this one because when people say that to me - I'm always surprised and say, "You don't think so? I think it's quite obvious really!"

Cas

I actually think ppl are trying to be NICE when they say this. Don't know how tho. I think my DD is gorgeous!!! Why would I NOT want her to look 'downs'. She wouldn't look like her then would she? lol

[quote="caspearson"]

MillyMoo wrote:

"Oh! She doesn't LOOK downs!"
Are you kidding me!? It's as plain as the nose on her face! LITERALLY!!!

I got this all the time and still do.... I HATE IT just dont say this and you should be fine

Quote :

it's not the kids fault, they will have a good life if they are loved and accepted as any other family member so get over your own grief and get on with being a parent.

Go your brother ive always felt that honesty is best. Say it how it is, might sound harsh but its the truth.

You know I can think of a bazillion things NOT to say but only a couple of things to say. Maybe silence is golden after all

Obviously "Congratulations" and then just the usual ooing and ahhing over the baby...just the same as any new baby.

I suppose it depends on how you are reacting, just like Shelley said first up. I wasn't phased by Jirah's DS at all, only by ppl's potential reactions. I just wanted people to talk about her as a baby and not as a burden or someone who was disabled because I did not see her like that (and still don't ). So for me, just normal congrats were what I wanted but I guess there would be a time when others would need to hear things like "I know you'll handle it" or "I'm sure your baby will do fine " or "Life for ppl with DS is so much better these days" etc...I don't know - I'm only guessing.

Cas

"Oh wow, she is sooo beautiful.. isn't she? how beautiful all down syndrome children are and what an awesome journey you are gonna have with watching her grow... have you joined DS Downunder? its a fantastic site that you can meet some really fantastic mothers who have become real advocates for their beautiful DS children, I can't recommend them enough, you're gonna get alot of wonderful support and meet some great people along the way

I know I don't know much about Down Syndrome, but I will do my best to learn with you along the way....

what can I do to help? would you like me and some friends to come and do your washing, do your grocery shopping maybe? what else do you need cause we can maybe cook your meals for the next 2 months if yah like!!

Haha... well you asked!! I would have loved for them to say that and offer that...

Really, I have been lucky with some wonderful friends, they've been a great support, they treat Tori-Shaye like she's their little baby, and I really appreciate them being so awesome with her. We've managed pretty well, but yeah I still get some doozies now and then, I have learnt to forgive them though cause its just the case of "I dunno what to say" buzz, so they stumble over their words, and sometimes they think they're making me feel better yah know the "she doesn't look Downs!!" But I hate the ppl who have made DS seem like its this doom and gloom existence.. I find it hard to hold myself from stabbing them!!

I have been lucky I guess, I set the precedent right from the start, by sending DH home just after the birth with instructions to tell everyone that there was to be no grieving in front of me, just celebrating our newborn baby like any other. Friends and family all did me proud, by coming in a steady stream all the first day armed with presents and smiles and congratulations, and much love and joy. Whatever they felt behind the smiles was up to them, but this limited the negative impact on me. Those first few days with a new baby are special, and you never get them back. The stress of it was bad enough without everyone howling and saying negative things to me.

Many, MANY times in the first few days I got the line from the nurses that these babies are only given to very special people, and how they knew Gaz and I were special before she was even born. As I was leaving the special care nursery on day 9, the nursery manager bought me to tears by telling me that seldom is she ever so happy to send a baby home knowing it could not be in better hands. I know this special parents line is given out a fair bit, but I am in the minority I guess, I really LOVED hearing it.

Jules wrote:

telling me that seldom is she ever so happy to send a baby home knowing it could not be in better hands.

That's a really great way to put it

Cas

Thats awesome Jules, yes it used to grate me sometimes but it depended on the person who said it. I was really fortunate with having some really nice nurses and they were really good to me. I did get probably 2 in special care nursery who weren't so crash hot. I think Tori being in Special care helped me and the family bonding with her without worrying too much about having all the visitors straight away. My closest friends had turns at coming up each day with me and they were awesome too.

I would have liked to hear, "Congratulations, she is beautiful" with true joy in their eyes rather than pity. I would also have loved someone with a baby with DS to have come and seen me and told me what so many people on forums have done since "She is beautiful, it is going to be ok, you will be so blessed by her and the joy she brings will overshadow any difficulties you meet along the way". Which is the truth of our experience.

Tigger wrote:

I would have liked to hear, "Congratulations, she is beautiful" with true joy in their eyes rather than pity. I would also have loved someone with a baby with DS to have come and seen me and told me what so many people on forums have done since "She is beautiful, it is going to be ok, you will be so blessed by her and the joy she brings will overshadow any difficulties you meet along the way". Which is the truth of our experience.

Me too.
You know I was really disappointed that there isn’t a parent support group or groups in each state that go to the hospital once a baby with Ds is born. At least an offer of a visit.
Cleft Pals (is a group of parents that have children with clefts) have parent support they turn u to the hospital ASAP. Give you the parent packs feeding equipment if needed…..
I really thought it was going to happen and I asked at the hospital when I would get a visit.
Oh well I would love to be that person.
But I guess it’s such an overwhelming time for some (read that as me) but I think it should be an option

When Jirah was born, there was a family visiting town (it was school holidays so a lot of tourists about) who had a child with Down Syndrome and my Paed met them in the street and obviously told them a new baby had just been born. He told me that they were willing to meet us if we wanted to talk to a family but I declined. At that stage, DS really wasn't an issue. I was just trying to breastfeed my baby and didn't really have time for social meet ups.

I agree that it would be great if the option was there. I think it probably would just take us to go down to the hospital and give them our name so that they could contact us. We can't sit back and wait for others to do it

Cas

It's not that easy to answer is it! Likes others have said the "what not to says" are very easy to put down.

Well I guess I had it a little bit different, because we didn't know Andy had DS til he was 4 days old. So I actually got heaps of normal comments, because I had heaps of visitors before we knew! In fact we have video of Andy and us before we knew, and it is really strange to watch!

I would actually have liked people to be straight up (and some were) and ask what does it all mean for us. Jules, like you my DH made an announcement to his work colleagues that our new baby had DS, that we were fine, and we would like to be treated like we were when our other two children were born.

Also, I had Andy at a small private hospital, the Chef happened to be our playgroup gossips husband. We let him know the same story, and I got heaps of lovely visitors, with nothing but normal comments made. The ladies also openly asked some DS questions, which I was really happy about. And I too got the "we all said if anyone would be good at this Narelle would" from the playgroup mums, and I actually took a little comfort in that. Of course, like everyone, it wears thin pretty quickly when every second person you see virtually call you "the chosen one"

I have thought about that before- having someone visit who has a child with DS. I asked about it a few years ago and was told that it was too confronting for most people, that they just want to get used to the diagnosis before being introduced to others. Personally, I wouldn't have minded.

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Personally, I wouldn't have minded

I think now I would say I wouldn't mind it, and it seems like a logical idea. BUT at the time, I wouldn't even look at the photo album the EI people bought into show me I told her I knew what people with DS looked like and I didn't need to look at pictures of them

But when she left I did take a look I just didn't like someone shoving it in my face.