Friend just had downs baby (surprise) how do I help?

[pupuce]

Hello

Wondered if I could get some wise suggestions...
My good friend just had her 2nd baby 3 weeks ago... and she has downs syndrome. This was totally unexpected (she had the blood test done and it was a very low risk + she is 32)... anyway... I am not sure how she is finding it as she is very private, she has said things that made me think she is "OK" and then others that she isn't... (like baby won't even mummy or daddy until she is 4).

I want to be a good friend to her so I am not sure what is the best way. I am also a bit concerned as last time she had PND... She is not one to share her feelings easily and we live at quite a distance - actually she is in France so I can't just pop up...

Any advice?

BTW - she is bottle feeding her baby EBM as she won't latch on - and the extra milk she is donating to a milk bank.

Thanks Eidsvold... actually I am (almost) breastfeeding counsellor so I haad that info already... the Australian BF Assocuation has indeed done a lot on the topic.
Thanks for the poost. Hopefully it will be useful to someone else too

Hi everyone - quick update

I saw my friend and her baby this WE for the first time... baby is so sweet.... very good sleeper (are they all????) I wasn't sure what to buy as [resent but went for Lamaze toys as I thought her baby would benefit "even" more from them.. hiope that does not come across as condescending.

She is bottle feeding EBM and sometimes forumla but her baby clearly eats EBM better - it is actually interesting to see the difference.

The mum is getting use to the idea of having a DS baby but dad still struggles as he feels no one understands how hard it is for him... all support and comments are targeted at his wife...

Anyway she was lovely, smiling and "talking" a lot, I did find changing her nappy the area where she was quite different from other babies her age (as a postnatal doula I am currently working with 2 babies of her age) and she is much more atonic.
Thansk for all your words and ideas....

I think it sometimes is hard for the dads - my husband was lucky as his boss at the time had a daughter with downs syndrome and so he was able to get support there although he really is not one to seek support from others he just draws it from us if you know what I mean. Sometimes being in a parent group is so helpful there.. or talking to other parents is brilliant.

Do you mind me asking where they live - just that one of the parent groups I belong to is brilliant and it is based in Suffolk and Essex..plenty of people to draw support from.

Definitely harder for the dads- far harder in every case I know. I think the process of acceptance is harder- maybe because (gross generalisation) they tend to bottle things up, compartmentalise, not talk about things, try to forget it etc, but also because they're not dealing with it every day etc.

When ds1 was first diagnosed the HV had a long talk with me about the dad problem. In fact DH is actually very good about it in private, although hates talking about it in the outside world. He says its becuase people have such a misguided negative view that it makes them assume certain thingsabout ds1 which aren't true. I do know what he means. But it can lead to some confusion as he hates using "the a word".

Eg we arrived at our campsite- and went to the couriers. Courier said something to ds1 who blanked her and dh said "oh he doesn't talk much"!!!!!! what????? I came along and found a confused looking courier until I said "oh he's autistic" This is well over a year after diagnosis, and I know that for the men dh has been good at acceptance. It just takes time.

Glad the mum is doing well- has she made any contact with support groups? I did find being in very close contact with normal children for 2 weeks whilst camping actually pretty depressing, and some of the parents began to really grate (that sounds terrible- most were perfectly nice, I'm just thinking mainly of one mother who obviously fell into the category of being embarrassed by disability because she completely blanked ds1) I think the support groups are an absolute necessity really- especially as the children grow older.

On the dads issue I feel very lucky because my dh has taken everything in his stride and I think he copes with it very well, tells people and doesnt give a cr*p what they think. But I have been wondering for a while whether this is unusual, for example we went on a sponsored walk for our local portage service, there were about 30 mothers with their children but only one dad-my dh. We both just thought this was a one off, but the SN nursery dd goes to had a fathers day lunch and only 3 dads turned up(the nursery has more than 50 children) and he kept saying how unusual it was that there was such a small amount. And then on saturday it was the SN nurseries summer fete and again it was more mothers.

dh was so disapointed after the fathers day lunch and said because he said it would have been nice to talk to other fathers about our situation, and maybe make a friend of them. Mind you I think he enjoyed the fact that he was one of the only men and all the female staff were clucking round him

Are there alot of support groups by you ladies then? I dont think there are any round here.

NOt support groups as such, but I met some mums on the internet who are now my best friends - I see them most weeks and talk to them most days. To be honest they are my lifeline (2 in particular).

They are in Lille- France
I don't think she has been to support group - I didn't ask .... a few weeks back she had said that she wanted to wait as she was not yet ready to jump in that boat..... I think she needed to come to terms with what had happened.

JIm jams - read all this with great interset. You say that the other Mums got on your nerves depite their best intentions.
Have you any advice for how we can be helpful and "recognise" your son without being nosey or patronising?

Hope that sounds right

oh not all of them codswallop not at all. Only one really and only becuase she totally blanked ds1 once she found out he was autistic but still spoke to ds2 and all the other kids. Just treat him as if he exists that's all really.

There are a few people form my antinatal group that I don't really bother about- ,mainly because they stopped asking anything about ds1 at all, have never used the "a word" and talk at great length about their dear darlings doing this that and the other (would just like to be asked about ds1 as well if I'm going to listen to hours of sports clubs and ballet lessons). If people are obviously embarrassed then I can't really be bothered that' s all.

pupuce- sorry I forgot she was abroad. I'd recommend internet support groups, and to get internet access if she doesn't have it. It's kept me sane. Probably not really necessary at the moment, but as her baby gets older and the gap between her peers becomes more obvious contact with others in the same situation becomes essential imo. It's is such an amazing source of support. People in the same situation understand the problems, the difficulties and the good things. They also have to deal with the same idiots in health social services (who?) and education and you tend to find out that you all have problems with the same people and like the same people- ie if you are having a problem with a pro then usually so is everyone else- that can be quite reassuring to know.

Even if she is in France she can still be a member of the Downs Syndrome Association in the UK - first years membership is free - lots of helpful information via their magazine. Although I am positive there is a group in France - remember reading about it. As JimJams says - internet is such a help at finding other groups. I have some bits and bobs that might be useful to send - have our local groups latest magazine ( our daughter's story is in it) Lots of positive stories about what the kids have achieved - the local co ordinators and people who may just be at the end of a phone line for help - if you want to wmail me I can send it to you and then you can decide whether to send it on even......