OK nosey survey following on from another thread.

[gess]

Do you like being told that parents of SN children are recipients of a 'special gift' or chosen by God because some higher power knew we could cope? (sorry expat pinched some of your wording there).

I'm interested to know what the figures are, I reckon its 50:50 love/loathe the comments. I'm in the loathe camp

I have now read a bit more of the thread than the opening post and want to say I can understand why it comforts some people and I wouldn't want to have a go at anyone who has genuinely said it to be encouraging and supportive. I know it can be hard to know what to say and we can all be a bit over-sensitive.

Well, I don't have an SN child, but when I've overhead the special gift line it's made me cringe. Deeply patronising. Can only imagine it would drive me nuts if it was actually addressed to me.

There's another line that people use when profoundly disabled children die that always gets me. My sister worked with one lad with what I think are called PMLD - his parents knew he would die during childhood. His mother spoke at his funeral and said, to everyone who thought it was "a merciful release", they were bloody wrong. She loved her son as he was and would rather have him with her, thank you very much. I mean, she put it rather more carefully than that, but those were the sentiments.

Well I cannot stand it and if anyone patronises me like that be prepared for a right hook (whilst holding ds2 down as he tries to choke dd - again)! I also hate the comment 'but surely he can't be that bad'. Try coping on 3 hours sleep a night and spending most of the time making sure he doesnt damage himself or my other children or even me, I have recently finished 6 months of physio after one of his 'difficult periods'. I love him like i love all my children and thats it - he is hard to handle and we sort of cope most of the time. I would rather no comment be made at all tbh.

oh i hate that you must be special line, tis obvious that we an extrondinary special to have our 3

Shiny- we think so much alike.....!

I dont think people make comments to make us parents with sn children feel uncomfortable or to piss us off they just feel like they should say somthing, we shouldnt really expect everyone to say the right thing all of the time. Dont get me wrong Ive had some very patonising things said to me and its made me very angry but I really would rather that than people ignore or even worse, just stare at my son!!! I can then speak with people about their words and how they have made me feel ( as ive done many times!)

Moondog spoke about the irony of being a SALT who has a child with a language disorder and Im a social worker whos worked with children with sn all my working life and I now have a son with severe sn. My dp worked with adults with sn.......is this why we were given a child with sn???? the thought has crossed my mind a few times, Ive also found comfort in 'Welcome to Holland' when my son was first dx, Im by no means a saint and theres days where I feel like a shit mum. Im tired of doing my sons physio and hand-over-hand feeding and when Ive been having a selfish day Ive even been heard to say that 'i Cant do this anymore'....but of course I will because my son smiles at me and we carry on together.

There are some nasty people out there but the majority just mean well.

thread hijack....how was the macmillan nurse?????

so what else do these caring strangers do apart from spout mawkish shite at me then?

oh thats right nothing!

yes it is irony, i worked for many yeras as avolunteer for the gateway organization and was a SW spent many years working with both childen amd adults with additional needs, i did train in makaton and BSL and loads of other stuff, i then went on to have three kids with autism

MB i will post on my other thread

I don't like it when DS was diagnosed it really didn't make me feel alot better and i kind of goes hand in hand with people 'feeling sorry' for me which is nice that they are thinking of me but makes me really uncomfortable.

Maybe ive just come across more than my share of nice strangers??

Oh I can forgive well meaning strangers (even the ones who say 'is he looking forward to christmas' agghh - my pet hated question ) It's the people who should know better but either haven't bothered to think about it, or are complete denial that grate.

oooh and I recently had counselling and one of the things discussed was dealing with the feelings that these people who should know better leave you with when they're busy creating their own fantasy world & you're expected to go along with it (and are 'negative' if you don't). Some of the comments can leave people feeling very pissed off/upset so I think its fair to talk about that!

ok once again i'm being slated for being nice i would really love to see how you treat horrible people ok i'm sorry you have a hard time i too have had to suffer and i actually liked the fact that people who didn't know me took the time to say kind words when others around me couldn't give a f**k

i cared for patients dying of cancer too for 8 yrs as well as sn and was told all the time what a special person i was for doing this job as well as having to watch my best friend die of cancer and leave his wife and kids behind and my aunti die at 31 leaving small children behind she got up to make there lunch and dropped down dead dvt undetected

my nan i nursed dying of cancer i too have been through shit so spend my time caring and helping others also losing baby i worked close to families with dying patients and they werew so grateful of me being there and that makes your day and tears your heart out and your right you do have to be a special kind of person to do that as it hurts each and every time and the families become so close to you also

my uncle also died young he had brain tumour we had to also watch this hense the fact i care for anyone going through anything as i have seen enough in my short life to last me a life time and just because i want to say nice things why quote me and make nasty comments i have been through alot too and was just trying to be kind to others as others were to me i have spent years caring for people and being told i was sent from god to do so i never once believed that but did think that and never would but you make a difference to someones life and that means alot to me to have someone pass away on you and thanking you holding your hand is the most painful thing and i've done that so many times so you keep quoting me and you keep throwing my kindness back in my face because i obviously know nothing i'm sorry for being nice but thank every kind person that i didn't know that took the time to offer kind words with each and every one of my sad times when i felt evry body else couldn't give a shit

That is an annoying one isnt it...is he looking forward to christmas, and I think you would have had more than that of me though Gess as I think your son is older than mine!!!

Do you think that were expected to 'go along with' other peoples perceptions and thoughts,do you think most people would listen and accept our view and how it made us feel if we challenged them about their comment or so you think that they would defend it and blame us for being over- senstive???

bubbla, why do you assume every comment is aimed at you?

i quoted you because i disagreed with you on that point, but god we are allowed to you know. Just as you are disagreeing with the comments we make

Bubbla I think you sound a very loving and caring person and I don't blame you for trying to defend yourself. We are going to be oversensitive about this kind of thing though because we live it and there's no escape.

because you are taking what i have written sticking it at top of your message then making comments about it not first time it has been done throughout thread when i'm just trying to be nice

Now there's an interesting one. IME the one person we (actualy dh) has tried to explain it to (after years and years of really irritating and depressing comments) threw their toys out of the pram, got in a huff and still says exactly the same things as they've always said They're someone we can't lose contact with (I had the counselling instead ha ha- actually it has helped deal with the comments). If it was someone that could be quietly distanced I'd suspect I'd have done that.

If they're strangers I sort of think there's no point- I sometimes make a wry joke in response, or a comment (such as 'well he doesn't really understand xmas" or "he likes the lights") but that usually just leads to confusion so I tend to smile sweetly and say 'yes' (even to the xmas comment aggghhhh!)

well shoot me for daring to respond

i found it very patronising actually, but i guess i cant say that for fear of upsetting you

My comments were not directed at you bubba, they were my comments of how I feel copingwith my husband dying. I've had relative die of cancer, but tbh, I'm finding dh's impending death quite a bit harder to cope with.

I have no emotional reserves left to go along with the fairy stories that other people make up, to make themselves feel better..

I do find your posts hard to read, though, because you don't use fullstops. And this isn't a snide, nasty comment. I find your posts very hard to read.

bubbla I have no idea why you're taking this so personally. People are just being honest about why they don't like these comments. In RL we can't say it, but we should be able to discuss this on here. AFAIK I've never met you so nothing I am saying is about you.

agree gess

why post a pov and then get teh arse if people disagree

thanks shiny its just so upsetting i too have suffered a great deal and would loved to have had more people appear that they gave a shit even if they didn't and most of my support came from people who didn't know me and it meant so much as the people that did know me couldn't give a shit they see you cope and think how wonderful i just wanted others to know that there are alot of people like me who do understand and have been through alot of shit that are genuinly nice people who do care about others