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!!!

I think - a lot gets lost in translation from real life to internet - body language/tone of voice/genuine interest. Eg. the nastiest woman I have come across with regard to DS's language impairment said "Does this child not speak English?", in an unpleasant tone and with catsbum mouth. Whereas around the same time, friendly lady in a shop said "surely he knows his name?", and that was meant nicely, so that's OK. So possibly people are coming over as too pernickety on this thread where in real life all the other factors than the wording would come into place.

afaiac it is like not daring to be honest

my friend recently adopted her 5th child

(1 birth nt) 4 adopted with ds

I asked her in an email if the baby was nt or ds and then totally strung out about it...

I just want to be able to be honest

fwiw 2shoes people say ' i dont know how you do it' all the time and my dcs are pretty much NT

i dont take offence but do feel as though they are looking for a crack

also - I think something else that's been lost in translation on the thread is that you expect good friends to speak/behave more sensitively than random cheery strangers passing by.

there is another mum in ds class with 2 severely disabled children

when the second one started showing signs of SN as a baby she said to me ' One is bad luck - two is just unfair' i really respect her voicing that

ickletickle - i have told you what i would like you to say so that you don't have to be mind readers....

Of course everyone is different (as i have previously stated) but i would prefer not to have the "special" stuff said to me. I am saying it how it is for me imho.

Lisa123 I like your attitude

I would say the same thing SuziSeis as its how i would feel - a reason why i am not pro going to have another child- i am too bloody scared it maybe disabled.

YABU, I AM really special

Luluis - i am not snippy and rude - merely trying to express how i feel as a mum to a disabled child about all this "special" stuff - i have stated clearly what i would like to be said if anything is going to be said at all. I don't mean it in a rude way - just an honest way.

Personally I think that people don't necessary mean offence. And that questions about how you cope etc are asked from peoples' own perspective. They've never had the experience, therefore they can only think of how it would affect them now.

People ask me how I cope with not being able to see. I do because I've never known any different, whereas someone who can see couldn't imagine not being able to do certain things without sight because they've never had to.

And I think we all do it on some level or another. We think of someone else's life and wonder how we would be able to live like that. How do people cope without a car/living in a flat/without a decent income/with an alergy/with six kids. It's not exclusive to disability.

I have felt like i dont know what to say to people - my friend struggling in the rain to push her big boy in his wheelchair

I want to say 'that looks so hard for you' because it does but i don;t becasue i fear sounding patronising

instead i often avoid the things i want to say and chit chat. It impact on friendships because i feel ill educated about sn

i find being told i am patronising and infantilising rude and snippy.

i have explained my rationale and it is apparently just not up acceptable to you

i am trying to see it from the other side of the coin.

damned if you do, damned if you don;t

I merely found the manner of your address a tad patronising - apologies if it was unintentional.

Do you have a child with SN Luluis? Genuine enquiry as am unsure if you have (ie not sure if we have chatted on SN board before).

SuziSeis - ask your friend about her son - if she is anything like me she will be desperate to chat to someone about it all

thanks stillnacht i will take you advice

Yay! I am sure she will be so positive about it - good for you!

I have had so many mums at the school gates who knew me when DS2 was born (when DS1 was in reception) who were fussing over DS2 until the autism set in and are now too 'frightened' to talk to me for fear of upsetting me with regards to the autism - please don't be scared as I am already upset about my son, its not going to be worse if you talk about it - it already exists - genuine words of interest and a desire to know my boy will lift and encourage me

thing is, I think it's hard to ask questions, because it can appear that you're being nosy- also if you're asking about the disability does that mean you're putting the disability before the child? iyswim.

I have a disability and even I would tread carefully when asking about disabilities which I know little about. Because although taking an interest is positive, not everyone has the same comfort levels in terms of disclosing information about their child's disability. Some people are happy to share, whereas others feel that it's nobody else's business, so it's surely a very individual thing.

I do agree with that wannabe definitely. However the disability my son has is integral to my son - without his disability he wouldn't be the same boy i think, his mental difficulties shape his personality and his character so much i couldn't imagine him being my boy without it iyswim. I am saying from my pov that i would much prefer someone to ask rather than to say all the "special" stuff.

I've read the entire thread and I have been educated by some of the comments and saddened by others tbh.

I personally have thought how difficult it must be to look after anyone with a disability or special need.
Your views change once you are a mother I believe as you know that no matter what you would love and adore and do for your child but it must be fucking knackering, confusing, unending, unsupported and largely unfinanced.

As a family we have experienced a number of problems through physical disability and I've always had the utmost respect and admiration for my family and the way they have dealt with the situations. But I've wanted at times to say I think it is a special person who moves forward with any hand they are dealt and doesn't fold and run (I know we say there is no coice but there is as unpalatible as that might be)

So I probably would come forward with a platitude which might irritate but it would come alongside some understanding and empathy. I wouldn't probably ask what was wrong with a child but would play and include and intitiate in whatever circumstance I was in. Not everyone wants or expects the level of inquisition and explanation demanded here.

I think that this thread hasn't entirely helped make it easier for any of us who just want to show some form of solidarity or humanity. Or to find the best way to include another child into some play in a playground.
People are clumsy with their words sometimes but it doesn't mean that their intentions are poor or wrong.

You're right Ronaldinhio, but as a parent of a child with SN you sometimes run out of patience, or steam even because its hard work, and badly timed comments just don't help.

It doesn't mean that you shouldn't try and say the right thing, but that maybe if its not taken well every time, you shouldn't take it personally.

I don't think all the posters here are saying 'just don't bother because you'll get it wrong', I think they're saying, sometimes well meaning comments go down badly, but sometimes they're great. Its all education isn't it.

I learned a lot from the thread a while ago about what not to say after someone has had a miscarriage. I wont' forget that.

There isn't a one size fits all suggestion here, because everyone's situation is different. But I don't think getting cross with parents who are a bit weary for all sorts of reasons is making progress either.

Ronaldinhio sorry this thread hasn't made it easier for you
of course I should have been thinking of other people and not myself when I started it. after all i am special

I know I'm the odd person out here. But I am actually quite happy to be special.

I spent so long being told that I was the cause of dd's problems, that she had no real disability, that it was all caused by my hang-ups (or possibly worse- sexual abuse was mentioned). Even when they knew she was disabled, the doctors were still going on at me, trying to hint that she shouldn't really be this bad, that she wouldn't be if it wasn't for something wrong with my parenting, I was told off when I finally let her use a wheelchair at 9 (instead of carrying her on my back).

Being told that I am special still feels rare and refreshing. You can all tell me!