Have your friendships changed as a result of SN?

[chonky]

Just mulling this over really.... For me, I'd say I'm far closer to some of my friends than before dd was diagnosed as having SN, but with others our friendship is sadly almost non-existent now.
One friend for example made helpful comments like 'hmmm...maybe it was something you did , but hey, you'll never know so why worry about it?' to 'well, you won't be needing the family home you always dreamt of, it's not like you'll be needing a garden with swings is it?' (WTF?). Needless to say we don't see much of her these days :o.

I'm sad to have lost the friendships I have, although maybe I should be grateful to disability for allowing me to see people in their true colours. Likewise, the friends who have been supportive and have remembered that chonky does still like to have the odd bit of fun I am eternally thankful for.

Just pondering and wondering what others experiences have been like.

I don't think I have lost any friends through having dd but then, like eidsvold I have tended to 'prune' friends over the years anyway so the few who are left are good positive people to have around anyway.

Also, and I do think this has quite a bearing, dd isn't 'challenging' to other people really. I mean, at the moment she looks like any other cute 3 year old. She can't stand up or walk but then it isn't shocking for anyone to see a 3 year old crawling or being carried. She doesn't really talk but she is 'communicative' so people do feel they can have some interaction with her. Yes, she sometimes makes weird noises or faces but then so do a lot of NT 3 year olds! She doesn't have any challenging behaviour. I do wonder how many people who find it easy to be around dd now will find it so easy when she is 10 and possibly still crawling and making weird sounds and faces!

I know exactly what you mean about being around 'NT" parents. Even here on mumsnet I have kind of dropped out of my ante-natal group thread. It's not that they aren't nice people on there. It's just that I find that my priorities, my concerns, my 'parenting life' really is different. And I don't think that will change so much even assuming this baby will be NT. I just don't care about the things they care about or see things necessarily in the same way. I'm sure that would have been different if dd was NT.

Its ironic that my best friend has become less of a friend to me since DS was dx AS but that a childhood friend that i had not seen for a while got in touch and has been brilliant, she sends me emails, takes me out invites me and the kids to her house for tea, doesnt care about DS tantrums or funny ways, she,s just lovely.

jimjams - I knew a couple of women who had baby girls within a week of dd2 and I can't stand them.... they have tended to become a little clique - simply because one had a much older child who was at school and the other it was her first.... I still had dd1 to be entertained and they just could not understand simple things like asking them to lock their front door so dd1 couldn't open it and wander into the street.....

I am actually having withdrawal from the sn playgroup that I attended with dd1 until she graduated to the sn kindy part..... sometimes sneak in with dd2 for a visit - asked if I could reenrol with dd2 and the teacher just laughed... I am thinking of doing something like a music class for dd2 one of the mornings or the day dd1 is at kindy - poor dd2 has spent her life being dragged to playgroup, around the shops, therapy, hospital visits - just wanted something to be for her iyswim.

your friends wouldnt like me eidsvold- I go round people's houses closing and locking all the windows shouting "Hope you don't mind but I;m just shutting your windows".

HITC you've described exactly how it is.

I did host a bumps and babies coffee morning after having ds3 in an attempt to get more involved with people with babies and I cancelled after the first one couldn't bear it. Hence my idea of setting up SN coffee moring within the NCT- I want to make them open to people with newborn siblings of children with SN as well.

have to say what a lovely idea coffee mornings for likeminded people. I wish I could have gone to one when dd was little(still do)

For me, I have definitely got a closer relationship with one of my friends as a result. She kept me sane when I was losing the plot, by just taking me shopping and getting me out and about and well...just accepting ds2.

I havent lost any old friendships, but some seem to understand more than others.

Sounds like a bit of friendship pruning is what I need to do. It is very hard, as we used to be very close, but I guess it's important that I can look back and think that our friendship was very good at that point in my life. As you all say, you meet other friends, and my new friends have been great.

I don't think I'll ever be able to do the 'NCT thing', even if I have another child who is NT. Everyone has their worries, but I think that mine are very far removed from what most parents worry about. Jimjams, think the coffee morning is a great idea.

This article articulates the shifts in friendship better (and more charitably) than I can!

\link{http://www.nikishisler.com/default.aspx?ctype=db&cid=7\scary monsters}

ps - hi merlot, how are you doing :)?

That's a good piece chonky- thanks for the link.

brilliant piece chonky.. .can relate to the - you don;t see it after a while... I could never understand why dd1 and I drew such stares when we were out and about prior to her cardiac surgery... even the woman in tescos who said eww what's that - to dd1's nasal gastric tube and apnoea monitor - you know we never saw it and I had to stop and think what she was talking about - it had just become part of the background....... I did realise after we got our first photos back how poor her skin colour etc was and how blotchy she looked along with a ng tube and an apnoea monitor - must have been a little scary for some.....

Really good piece. Identified with nearly all of it. Have you read her book chonky?

Yep - just finished it a few weeks ago. It made me bawl my eyes out at points, but I thought that it was exceptionally well written. She comes across as a very together, positive sort of woman, so it was also very uplifting in places.
The last three chapters are really dedicated to her talking about her life since the diagnosis and what life is like parenting a child with SN. There's even a chapter dedicated to how helpful SN internet forums can be in helping to connect you to other parents (no mention of mumsnet though - pah!). Well worth a read, just a shame it's so sensationally advertised on the dustcover, but I guess that's to make it more appealing to Joe Public.
If anyone wants to read it CAT me and I'll send on my copy.

oh I managed to miss that it was from a book. What's the book about? SN obviously. Is it worth reading then?

eidsvold- it was funny- last week was the first time I've been out in crowded public places with ds1 for over a year. I'd forgotten how much people stare. I was with one of my direct payments helpers and she said her friend has a brother with DS and her friend gets really cross with people staring.

The nice thing about last week though was although 80% of people stared, 20% either gave supporting smiles or made friendly comments.

It's an autobiography of her life - mainly about her twin pregnancy & then finding out that her twin boys were born with a very rare form of muscular dystrophy. Took ages to get a diagnosis, and sadly one of her boys died.
Well worth a read if you can brace herself, she writes in a very 'matter of fact' way, bit like Charlotte Moore's style in George & Sam.

ps - meant to say, glad the outing went OK jimjams, shame about the staring though.