How to support a friend with sn baby

[Upwind]

One of my best friends now lives fairly far away from me and has a baby girl who has just turned one. In recent months my friend seemed oddly withdrawn and non-communicative. I wondered if I had done something to offend her but then noticed that she had not updated her myspace page either and other friends also commented. Last night I phoned and she wasn't in but her DH explained that they, and paediatricians are seriously concerned by their baby's development. She has had a lot of tests but no firm diagnosis yet.

I know the baby was a few months old before she smiled and back then my friend was extremely upset by people constantly asking whether it had happened. I guess I might have put my foot in it by asking about her crawling a few weeks ago. So what can I do now to support her? I had no idea what to say to her DH last night and definitely don't want to cause any upset when I speak to her.

your poor friend. at the moment she is likely to feel terrified and slightly cheated/feeling why us? - it's like the rug is pulled from under you as to all your assumptions about your child's future, jus the little things you take for granted (whether your child will live independently/have a job as a grownup) are thrown into uncertainty.

you don't have a child a similar age do you? if you do that may well be very painful for her to keep in touch, as there will be the inevitable comparisons (even if only in her mind) between the two children.

otherwise - acknowledge that it's a stressful time for her, don't try and be artificially positive. follow her lead as to whether she doesn't feel ready to discuss progress/appointments, or whether she wants to discuss every little detail.

even if she seems distracted/uninterested in keeping in touch at the moment, because of the stress she is under, make an effort to keep contact going or at least that she knows you are willing to meet up - it can be a very isolating experience having a child with special needs - makes it difficult around your natural peer group of mums with kids around your child's age - so even if she doesn't seem appreciative now, a good friend will be invaluable further down the line.

Thanks for the advice. I don't have any children - but we have been ttcing for a long time and hopefully it will happen this year with assistance. I have never been very open with anyone about how hard that has been & there is the temptation now to tell her more about it when I have the chance. Pretty much all of our peer group do have small children, this baby is my friend's first born.

With her DH I was artificially positive and I will avoid that in future. I really wish there was something I could do to help but all I could think of was inviting them to come and stay with us for a break?

sorry about your difficulties TTC, and for inadvertently prying into a sensitive area. I think inviting them to stay is a great idea. I imagine that your friend may find it difficult being around your other friends with small children - so if you can angle towards girls' nights out rather than gatherings with kids that may be easier for her to face.

Don't be sorry for inadvertently prying, infertility is one of those things that IME was very difficult to come to terms with, but now it is just one of life's challenges.

I am grateful for your advice and well definitely put it into practise!

just one more thing to add - she may have found the first birthday very hard - birthdays can be a flashpoint for noticing differences and thinking - why isn't my child doing the stuff that the other 12 months old are - sitting/crawling etc. the appointments/testing process will be time consuming and stressful too, especially if her baby gets wound up by being prodded/poked at!

Th birthday milestone had not even occurred to me! She must also have been thinking that this time last year I thought my baby would be sitting up and getting ready to take her first steps... I spoke to her last night and she seemed fairly positive and hopeful that the physio they have started will really make a difference. We will come visit them in a couple of weeks and hopefully have a relaxing weekend.

They have decided to tell everyone now, which I suppose means they will have lots of support.

Birthdays are hideous. I still get depressed at birthdays.

Do talk about your ttc if you feel able to - it may well lead to a sort of shared bond- being out of sync with all the parents around you.

Just ask her how things are going as well and then listen(rather than telling her iykwim).

Thanks Yurt

Upwind, opening up to her a little about your own struggles might help you both actually, when you are next chatting.

Just tell her you are there for her; that you can't know what it must feel like but you can begin to imagine the uncertainty etc. Perhaps you could refer her to us on MN - and we will be there for her too.. and counsel her through chucking those miserable milestone charts out of the window and learning to appreciate each and every tiny little bit of progress her child makes and her own rate.

You sound like a really caring friend and that is waht will matter to her ultimately.

Your friend and her dh will be in a very scary place right now, and like someone else said they'll be feeling extremely isolated - especially mum. If you could try to be positive without trying to say things like her daughter will "catch up" or that you know a perfectly normal child that didn't do such and such either at that age etc, that might help - I remember the only thing people could think to say to me was that lots of babies develop slowly and that there's nothing wrong and he'll be absolutely fine - that sort of thing didn't help at all - it felt to me like everyone thought everything could only be fine only if there was nothing wrong with my baby - they couldn't handle the idea there might be problems. Then we got the dx (there was something seriously wrong with him) he has quad cp and he has enriched my life more than you could ever imagine and on the whole, everything is fine, so there is definitely room for being genuinely positive. Am I making sense?

She needs to know that whatever happens, whatever the problems are, everything will be ok and her friends will still be around. If there is a problem discovered with her daughter, it might take a long time for your friend to accept things or to feel remotely normal again, but she will and she will come to appreciate more than ever the people who stuck by her. I've only recently been able to be around "normal" kids and their families and my ds is 2yrs 8 months old so you'll have to be patient. I still feel pain sometimes, but most days we're fine or even happy. The isolation is the worst thing, and it's at a time when you need support more than ever. I think posting here for advice is a lovely gesture and I hope you can find the time and strength to help support her.

Good luck with your baby endeavours too!

Thanks so much for all the advice. I am a bit that my first instinct, with my friend's DH was to be artificially positive. I was caught off-guard when he explained how far behind their baby really is and found myself babbling about babies I knew of who had been very late developers and turned out fine. From what you say other people have the same idiotic response! The analogy to infertility must be people saying "if you just relax it will happen" which makes me unreasonably with people who mean well.

I will recommend that my friend comes here, though that will involve admitting that I frequent Mumsnet though I have not managed to become a Mum! We are both proud so I guess she may have said nothing about her worries for the same reason I never talk about ttcing - I don't want anyone to feel sorry for me. But friendship is about honesty as well and it would be great to be able to recieve support as well as give it.

upwind - you care enough about her feelings and about how what you say/do will affect her to come here and look for advice - that shows you are a great caring friend for her . People want to be the bearer of good news - it's a very natural reaction, just not always terribly helpful!

hi upwind you are obviously a very caring friend and you have been given a lot of great advice here. I just wanted to echo the advice about keeping in touch even if it seems like your friend's not maintaining contact.

I know that when things are tough for me I lose contact with my friends. It's crazy, just when I could do with having more sympathy, I shut down because (a) I don't want to burden them and (b) I want to focus my energy on getting through whatever is going on at that time. One of my good friends who lives quite far from me suggested that we schedule regular phone calls - once every month at a time when we wouldn't be disturbed by kids. This really helped, because without that appointment written in my diary I probably wouldn't be talking to her at all. I did sometimes feel the conversations were full of my moans, but it was great to feel at least one person outside our family was up to date with what was going on, and cared enough to make sure we kept in touch.

Thanks again for great advice.

Upwind, your friend may not be ready for this yet, but I found this short essay very helpful after we got my son's diagnosis:

www.our-kids.org/Archives/Holland.html

It describes what it's like to have a child with Down's syndrome. My son doesn't have Downs, but the essay still describes eloquently the host of emotions you go through when you realise your child is not "normal". I was given a printout of it within days of having my son (he had obvious differences from the start) and I identified with strongly with the description of grieving for the life I expected to have before having my son, whilst still adoring my son and being glad he was here. It's a very difficult ambivalence to work through.

Thanks for that. I can empathise with the grieving for the kind of family life we expected to have.

Hi Upwind,

you could be writing about me! I have two children though, so it probably isn't...

I have found the hardest bit of having a delayed child is being around children of a similar age to my DS, as it is then clearly apparent that there is something wrong with him. We have no dx though, although are going through all the tests. It is so timeconsuming, and stressful. The world is a different place since his assessment back in September, and I do look at everything differently.

You and your friend are going through a tough time, and I imagine in some respects it's hard being around your friend because she does have a child, but it may be that it is easier for her to be around you (IFSWIM), because there is no child to compare her DD with.

I have isolated myself, and it's not healthy, but it is too painful for me to be around NT children at the moment / hearing what they are up to.

If you can send your friend over here, I've found it helpful knowing that there are other families out there who are going through / have been through the whole "grieving" process.

You sound like a great friend,

HI upwind, sorry if i'm repeating what someone else has already posted but my advice would be also when you do get to talk to your friend don't say that you had thought there was something wrong with her DD as i get that sometimes and it hurts as it makes me feel, if they saw it why didn't I. Funny thing is i don't think they REALLY did think there was something seriously wrong they just think it's a good thing to say.
If she doesn't want to come stay then offer to go stay with her if she would like it. I find i am more relaxed at my home with DS as i don't have to worry about him breaking anything or getting into trouble/danger. She will need you to be a good friend and just try to be patient if she seems to push you away as i did the same thing and really i wanted friends to talk to me. good luck with it all!

definitely not you mm22bys! I have been speaking to my friend and her DH a lot since I started this thread and like you they are going through what seems like an extraordinary number and variety of tests. I am still secretly jealous though - her DD is truly gorgeous and so lovable, I have no doubt that your DS2 is also.

monkeypie - that is actually what she suggested herself. I thought it might be good for them to come and visit us for a break, but she said she would really appreciate it if we came to stay with them instead. So that is what we will do. They are very isolated because they moved to a new town while she was pregnant, most of their new friends were met at their antenatal group so comparisons are inevitable.