to be fed up with people saying " how do you cope, I couldn't you must be really special"

[2shoestrodonalltheeggs]

ok so dd is severley disabled but that doesn't make me specail, and what am I suppsed to do......not cope!!!

yanbu. even well-meaning comments can be very irksome at times.

I wonder whether the people who talk like that to the OP have ever really suffered. I've had comments akin to this from some friends, having been through a huge amount of suffering in a short space of time but still managing to stay positive. IMO if people haven't had a similarly weighty level of life experience they simply haven't had the opportunity to learn what levels of strength, endurance and personal growth they're capable of.

How can I explain... I can have the exact same comment made by two different people and one will pee me off and the other wont.

Its hard to say why. Its something to do with the glazed expression and the way they are not really thinking about you but themselves. Some seem to go off into a sort of daydream as they imagine just how romantically they would grieve. How much better they would be at it than you.

Whilst the majority really want to say something to express how deeply they feel for you. How they wish what happened had not.

I wouldnt be offended by a well meant remark. If you read some of the bereavement forums you may think all bereaved parents are bitter and full of hatred to all who try and offer them comfort. We arent, we just need to vent sometimes and I am assuming thats the same for parents of severly disabled children, those coping with infertility, wheelchair users etc etc.

chegirl you dd is beautiful.

I get drained by the constant of it.
I have a beautiful dd, she does not deserve to be stared at, and I am only being her mum by loving her.
now coping with ds(17 yr old teen) i deserve praise for that

verygreen I hate that one too! I have also had the suggestion that I name my new kitten after my daughter . This was shortly after she died. Now that wouldnt have confused/upset her little brother at all would it

chegirl - that was a brilliant explaination about the romantisicing of grief and why one comment is innocuous but a similar comment can cause untold heartache by the way in which it is said and the thoughtlessness behind it which is often portrayed through body language etc

stillnacht thank you

I have always tried to explain it to people how its the way something is said rather than the words i guess- thanks for explaining it better than i have done in the past

i wrote this once.

'Sunday, December 04, 2005

How do you cope? You must have a plan or stragedy in place?

one of the other patients is going through transplant assessment. he says him and his missus are going to pick mine and peters brains on how to cope. but how do we cope? i have no idea. the way i see it, we have two options in all this, option one, complain about how unfair it all is, and just lie down and give up, or option two, carry on as much as normal, and keep fighting.'

I've never had anyone tell me that I'm special but I have had people say, 'I'm sorry' when I tell them about about my ds - which I find a bit of an response.

IMO, if a person lacks experience of a particular subject, then they will make clumsy, but largely well-intentioned, comments.

Going back to the 'special' comments, perhaps it's the fact that kids such as my ds are usually termed, 'special needs' that the use of the 's' word is applied so frequently? In any case, I've yet to meet a parent who considers themselves to be 'special'...anyone??

with everything going on in our house, DH with his new cancer, DD1 possible AS and my heart doing a merry dance, we often get comments like "I dont know how you cope", "Oh your always so positive" and loads of "is there anything we can do?". I never take offence, its all meant well, and least they arent avioding us for fear of saying something wrong. At the end I normally say "well you'd be surprised how you can cope when you need it, when you have no choice and where you can get strength from".

I always look for the good in people and just think people worry so much about saying the wrong thing, they end up doing it least they try

I don't have personal experience of this but have seen my friend getting the 'you are so special' remarks. The 'God only sends us what we can deal with, he chose YOU to look after a child with disabilities'. She's VERY polite about it, I'd be steaming.

Saw quote from Mother Theresa the other day along those lines but with a twist. Something like 'God only sends us what we can deal with - but I wish he didn't trust me quite this much.'

I can understand you being frustrated by this. However I may well have said similar things in the past.

The truth is I work 3 days a week, I have 2 gorgeous sons aged 3 and 18 months who I conceived the first month of trying, a very supportive and lovely dh and supportive family (albeit at the other end of the country). I love my life. I have a fantastic life and often marvel at how lucky I am.

Yet often just getting through the day overwhelms me. At times liek this I am gobsmacked that people do all this with no dh, no family, more than 2 children, smaller age gaps, and disabilities / illness (both of them and dcs) to contend with. How on earth do you cope i think. Not because I wouldn't cope - of course i would if i had to, you can hardly send the dh or dcs back if it doensn't work out as you plan can you? I don't mean it to be patronising or belittling. I am just trying to empathise and show appreciation for the tough time you have.

I can see why you take it as you do and that when you hear it for the 50th time you feel liek saying 'change the fucking record love'. But I am sure it is not meant like that.

Not the same at all but I get similar comments about my job as a surgeon. 'Oh you must be so selfless' I get. Um no, I am incredibly lucky to be allowed to do a job I love, selflessness has nothing to do with it at all!$ So although not anything as emotive but I kind of get you. Just think that people are probably more well meaning than you are giving them credit for

I also think saying something is infinitely preferable to those who avoid you for fear of saying the wrong thing. of course I haven't been on the receiving end but i would find it much more hurtful if close friends ignored me rather than come out with mindless platitudes

TBH I would rather the word "special" than "broken"

I agree, lisa- I find it much easier to deal with myself by thinking of my dd as a bit different, a bit of a unique creature, rather than "wrong" somehow. For all that people in the past used to cock up by our standards in terms of how they talked about "SN" kids, in a way I prefer the (not sure I'm explaining this right) more "that's the way life is" attitude. In my own family, on both sides, there were siblings etc with conditions like Downs Syndrome, thalidomide etc, but people just seemed to get on with it without the level of understanding, but more of a personal acceptance of disability as part of a normal family. The diagnosis can help you access some help I guess, but it sort of puts the person with it into a box in a way, rather than just seeing them as part of your family. I really don't like seeing my dd as a medical condition tbh, I want to just have her be "her".

I agree. I don't think people are brave by choice either.

My first baby was stillborn and people would well-meaningly say things like "You are coping really well - I would not be able to survive something like that happening to me...". I used to feel a bit because although they probably meant well it made me feel like I was coping too well, iyswim?

They don't mean it but people sometimes need to think before they speak!

I think it's also a case of people wanting to show some kind of support but not really knowing what the right thing to say would be so they fall back on tired old clichés rather than ignore the situation completely.

This happens a lot when people are bereaved or when people do something that is outside of the commentor's experience.

For e.g. - I left my stable job to retrain for 2 years as a complementary therapist - I got a lot of "gosh aren't you brave, I could never do that, you're amazing" comments - none of which I really related to because for me it was something I just had to do or run the risk of seriously damaging my health if I stayed in my previous job. But so many people had never been in that situation so they felt a) moved to comment because it wasn't their "norm" and b) commented that I was somehow extraordinary because I was doing something that they didn't believe they would or could ever do.

My mum was one of these too - anything outside her sphere of experience was "weird" or extraordinary and required comment, however banal and clichéd.

chegirl I think I know you if you are who I think you are Are you B and dd also B? And butterflies & a musical person feature in your life? Hello if it is you

the only get what god thinks you can cope with is one of my all time hates i tend to at that and been known to bite few heads of say something

yes my son is differnt not special,he is no more special than my other kids are .

Now as the only red head in the family I think i might be special

So for those of us who are ignorant - what is a helpful response if a friend has a child diagnosed with a disability?

When we got the diagnosis for DS2 I don't really remember many of the comments through the fog of hurt, worry and tears.

I do remember one friend (who at that stage I didn't know very well) saying 'he is still the same boy, exactly the same.'

Apart from that I'm afraid I'm probably rather contrary as I can't think of any. A supportive smile, hug if you know the person well, and generally being supportive I guess.

Very well summed up Thumbunny.

It makes you wonder how many of the people who are living this experience and find these sorts of comments variously irritating/patronising/infuriating would unwittingly (in a harmless attempt to show support and be caring and friendly) make the same sorts of comments if being a mum to a severely disabled child was outside of their own experience too?