Friend with new baby with suspected Downs Syndrome - what should I do/ say?

[Gameboy]

A friend of mine gave birth last week to a little boy, and they think he might have Downs Syndrome. He is having various tests, but appears to have some early symptons.

She called me briefly and was upset - they've obviously been through an emotional few days. I felt really hopeless, didn't really know what to say, or how to offer to help (other than to help look after her older son, who is at school with mine).

Can anyone who has been through this tell me what would be most helpful/ thoughtful from friends at this time? For example, what do you write on a card - you can't just pretend it hasn't happened and say 'congratulations' can you? I think she's in an awful early stage of feeling like it's all just a nightmare, and hoping that she will find out it's not true.

I would be quite upfront, I think. Send a card/flowers with "Congratulations on the birth of your beautiful son, will be round to see you asap etc" And then when do speak again just ask directly about any testing that may have been done. I wouldn't pretend it hasn't happened but it really isn't the worst thing in the world to happen to someone. All you can do is offer support when she needs it. Thomcat will give better advice though.

Gameboy what a nice friend you are to be concerned.
I am sure if you continue to be a friend to her through what may be difficult times then that will be really valuable.
My sister has a child with DS and she would agree I'm sure that the most important thing is to value the new baby. A lovely baby has been born and that is something to celebrate. Please send a congratulations card and present if you would otherwise. They should soon know if he does have DS, and if so, and he is basically healthy, his early life may well be very similar to any other baby. It is more a case of later on when your friend might need particular help and support. But for now, please do say congratulations. It is hard, they may well be in shock, but if you are cheerful and welcoming to the new little one that will surely help them.
Lots of other people on MN have children with DS and I am sure they will have words of wisdom to offer.

Agree with the other posters here so far. Do congratulate your friend on the safe arrival of their baby, and ask to see him very soon. You are a thoughtful friend to be concerned and your support is going to be so helpful as they work their way through the diagnostic process. Hopefully ThomBat and others will be along soon!

Gameboy - haven't been through this myself but in my close family (my sister) - others on MN with closer experience willno doubt be able to help more.
I think a card (baby boy one) and flowers are absolutely appropriate - in fact NOT sending them if you otherwise would, that would seem odd and cruel. I would just write something like - "a very big welcome to (Name) from all of us" and then put love and best wishes.
can I just say to try not to say something for the sake of it e.g. what you might know about DS, that DS children are "loving" etc - I know how easy this is to do but this is probably just the time to listen and offer practical help rather than try and provide comfort, which might sound a little odd if they are currently in shock.
hth

I agree with what has been said too. During my pregnancy I was given a 1 in 40 chance of my baby having DS (he is 6 weeks now and hasn't DS as it happens) so had plenty of time to consider how I'd feel. I would have been quite upset if friends didn't treat the birth as something to be celebrated as it would have given me the message that he wasn't valued, though I appreciate for your friends it may have been a bolt out of the blue - I had time to prepare myself, I guess.

I thnk you're doing the right thing by supporting them practically and as Tinker says it isn't the worst thing in the world. My younger brother has Downs. He's almost 21 now and all our family are immensely proud of him.

If the diagnosis is positive, point her in the direction of this site as I know they'll be many mumsnetters who can offer more personal advice and support.

As the mum to a 3yo little girl with ds - the best thing you can do at this stage is to celebrate the birth of their little one. Send a card and a present ( if that is what you would do) congratulating them on the birth of their little boy. Practical support can be so helpful - things like offering to pick up older son from school, drop round with a meal - just do what you would do for any friend who has had a baby. Yes you can't pretend it hasn't happen - but you can congratulate them on the birth of their gorgeous son.

She will go through the stages of grieving and at the moment it will all feel too much. A listening ear and supportive shoulder will also mean a lot for her.

For us - this piece of prose helped us as we worked through what had happened - even though we basically knew before dd1 was born.
here

Some sites for you to get info that when you feel the time is right - can pass on... and read for yourself. I found it helpful when friends did some reading for themselves and I did not have to 'educate' them. If they did some reading and then asked if /how it applied to dd1 - that was also helpful. I felt they were prepared to learn more about what we were dealing with - off their own back rather than expecting us to explain everything all the time.

Down syndrome association - UK

parent group that I was a member of - able to put you in touch with other parents

found this site helpful too

You can put these aside and refer to them or pass them onto your friend when you think the time is right. I dip in and out of these sites and look for a number of reasons.

Feel free to CAT me and to pass on my details to your friend.....

TO be honest - just be a friend...... supportive emotionally and practically.

there are a number of threads on this topic if you have the time to do a search.. I haven't but will try tomorrow for you... need to get off pc and sort out putting dd1 to bed - up way too late...

Gameboy, it's very cool that you are being so thoughtful.

What she may need desparately is someone to listen. When you first get a diagnosis you go through shock, then a sort of "grieving" process (for the hopes and expectations that will have to change) then guilt (was it my fault...) etc. etc. It's a bumpy ride, and just as you need the support of friends, they all vanish and leave you completely ALONE. Of course it's because they're upset for you and don't know what to do/say so say /do nothing rather than "intrude". But you think it's because your child is "different" and this is the start of a lifetime's discrimination.

You need to show her that it isn't like that, that you can handle being around her child and that you are still there for her. So you need to send the card, send the flowers, ring her up, go round and play with the baby, stay in touch.

Personally, I'd say don't try to be "positive", at least in the sense of making light of problems. Of course encourage her that she can handle it all and her friends will be there to support her - but don't tell her that her child is fine really. All her relations will be doing that (it's a self-defence mechanism which helps them to cope but does nothing for the parents who are forced to face reality) and it will just make her feel they aren't listening to her and are condemning her distress.

Eidsvold - thanks - have looked in the archives and found some of the other threads - very helpful!

I think there's some very useful advice on here - thanks.

I just feel so sad for the distress she is going through at the moment. I know this will hit her hard. She was working full-time in a busy career, is a very 'driven' sort of lady - the hardest thing for her will be the complete change of pace & style of life this will probably now necessitate.

(That sounds rather harsh - and I don't mean it too - it's just that I know her whole life will have been seriously rocked by this - she is also the major breadwinner )

I will, of course, do all the usual things that I would do with a new baby.

Thanks for some good advice (as usual MN!) I'll keep you posted.

Gameboy just on the working point, there's no reason that the mum of a child with DS cannot work. My sister worked 4 days a week after her dd was born; Thomcat certainly works several days a week as well.
I think a lot of people imagine (because they don't know any better - and why would they?) that a child with DS will need constant care. Of course some do but many are able to function eg in a childcare situation very well indeed. My niece has special needs, yes, but nursery and her mainstream school have no trouble with er. She is a lovely 6yo whp walks and talks, is learning to read, potty trained, dresses and feeds herself etc. She just needs a bit more help to do things and learn things.
Of course some children with Downs have much more severe health problems, but what I'm trying to say is that yr friend needn't feel that her life as she knows it has ended.

Sacry - yes - of course you're right, and that did come across as a bit ignorant of me

I suppose at this stage my friend will also be as ignorant as me, and amy also assume these things.

Thanks for highlighting this.

Hi Gameboy

Well done for posting and asking for advice, what a great friend you are.

Firstly, yes you absolutley do say congratulations. She's had a baby, it's a joyus time, okay maybe twinged with a bit of sadness for her right now, but that will pass and on the whole this is/should be a happy time.

Having a child with Down's syndrome is not without it's problems, challenges, upsets and worries. But show me a mother who doesn't go through the same emotions, whatever their child is like. Okay, yes, there are things that are a bit more challenging when you have a child with DS, but nothng that terrible either.

I rememebr thinking that other people seemed so sad for us that i thought I must be in some sort of denial. I kept thinking 'God it's really going to hit me soon', but it never did. How could it? I mean - I had a beautiful, healthy, very content, perfect little girl. Instead of any negative feelings hittig me i just fell deeper and deeper in love. i had the most amazing baby and I couldn't get over how lucky I was. I still can't!

Nothing can prepare you for the feelings you have when you give birth and nothing can prepare you for the strange emotions you have when you discover your child isn't quite as you had planned. Have you seen the 'Welcome to Holland' thing? Let me know, I'll try and find it for you. Basically it's about boarding a plane to Italy and discovering you've landed in Holland. You're saddened and shocked that you didn't get to visit Italy but you soon realise that Holland is a wonderful place.

Life with Lottie isn't the life I thought I'd have when i fell pregnant and dreamt of life with a child. I didn't expect to be carrying her around still at almost 4 yrs old, or filling out disabilty forms, fighting her corner, visiting speech therapists and so on. Nor did I expect life could be this good. I didn't expect to laugh as much as i do every day. I didn't expect to get so much back, more than I could ever put in. I didn't expect to feel such a massive amount of pure, unconditional love, so strong it pysically hurts sometimes. I expected her to be a ray of sunshine in my life but I din't expect her to be the sun. I didn't ever expect I could be this happy, this proud.

So it may well not hit her hard as you expect it to, to be honest, there's no reason why it should. it might but I don't think you should really expect it as such. it's more likely she'll fall more and more in love with her son.

No real reason her life should change that much. mine hasn't. i had a career before and I have one now, I just do 4 days a week rather than 5. Sure things change, they do for all mothers, but there's no reason that she has to stop anything that she loves doing. Her son will just fit into her life and it'll all work out, it always does, for everyone, it has to doesn't it.

Children with Down's syndrome are just the same as everyone else, they just take a bit longer to learn stuff, they are just slightly slowed down versions of you and I as children. There is no reaon why anyones life has to be turned upside down. I'm not saying there won't be a few sacrifices made but i bet they get made willingly for the son she adores.

If thre is anything I can do please, please, all you have to do is ask. i'd be happy for your friend, or you, to phone / email me. I'm here.

Love TC xx

OMG, sorry, what a huge post, I didn't realise how much I'd gone on, sorry!

ThomCat - thank you - that is such a lovely post - and I really appreciate your offer of help.

I think it's interesting (good) how MN has made me so aware of people's attitudes to children with special needs - I have no real life direct experience, so feel completely inadequate

It's great to be able to come on here and get such good advice, so quickly, and hopefully be able to support my friend more usefully in the future.

Thank you for your (long!) post.

Hi Gameboy. Why would you have any experience babes, none of us did either till we bcame parents. But you soon learn that children with special needs are just the same as all the NT children, just different!!!

gameboy, sorry, not meaning to call you ignorant! (realise that I did tho, a bit, but in an "it's quite understandable, why would you know about this" way I hope

Thomcat puts what I wanted to say so much better as usual!

Gameboy - you could maybe start to do some of the research for her if she is too be-fuddled? The name of the website for parents etc. Not to bombard her with info, but to have some suggestions ready if she starts to talk about it. Introduce her to MN?

Gameboy - I worked full time in the year dd1 was 1 and onto 2. As we then emigrated to Australia and I was heavily pregnant with no2 - I stopped work. But I was/am secondary teacher and I went back to that.

MY dd1 ws born with a serious heart defec that was operable - something some children with ds can have - but to look at her now - unless you saw the scar you would not know.

Life will change big time for her as it did for me - but any woman going from being driven in a career to havving a child undergoes a major shift.

The working thing depends on childcare available and the individual child. UNless there are very severe health problems and a lot of hospital appointments it's not such a problem when they're younger. For us the problems with childcare began at about 3 because since then ds1 has required full time 1:1 supervision (he's 6 now, severely autistic, non verbal and after school clubs etc can't cope with him, and nursery would only have him with 1:1- but funding was an issue). IME (and this is a generalisation) often children with DS can be slotted into standard childcare arrangements without too much difficulty (assuming a sensible manager/caring staff etc and if they have a willingness to learn Makaton etc then even better) because despite their learning difficulties they are still keen to take part in group acivities, and will stay with the group, and be interested in interaction and play etc. A generalisation and not the case for eveyone. Really she's going to have to see how it all pans out in her case, but it could be that the childcare aspect doesn't alter much.

obviously your freind is going to be rocked by this but as so many others have said. she still havs a beautifull baby boy.

from the sounds of it your freind does nat at this stage fuly understand much about DS and luckily you have found out what a fantastic resource MN is ( as have i only recently!) and you cna maybe pass on this info to her.

the best thing you can do is be there for her with a hanky and a shoulder. if you have yet to see the baby make a fuss of him. there are certain stigma's attached to DS and your freind may be worried about how her son looks.

i wish your freind the very best wishes. she doesnt need luck with a fantastic freind like you.

hello ladies im eastyorksmum from junie thread, as you can see, and my younger sister 27 has now had her baby girl 31/2 pound, even though she was 33 weeks pregnant, we think her waters started going, and the baby had to be brought through a section on sunday morning.

Our little girl is now been tested for downs syndrome, as her eyes and ears werent in the right position, now she isnt feeding proberly and has to have an opperation on her tummy because she isnt dijesting her milk.

I wondered if any of you lovely ladies had any advice for me and my family.