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!!!

Can we add 'Have you tried giving him fresh food', 'there wasn't any of this asd lark when I was a child' or even 'Have you though about aprenting clsses'?

With the non-vis disabilites, I find thats what we get

Or there's always someone worse than you 'Oh my niece 37 times removed has ASD but cant tak'

Poor her, I hopes she's getting relevant input and if not I could give you some numbers another day, but can I have a bit of a cry too please without feeling guilty that there's someone worse off than me? That's awful but changes nothing for me and mine

catski I always respond with 'oh no its fine, they're lovely' and then wonder why there's no input available.

I did once say 'Oh I'm superwoman, I did a degree as well you know, passed with a newborn' thinking the woman I'd known for a bit would realise its my suualdry sense of humour and she ahsn't spoken to me since

or (when DS was being assessed for ASD), I said to friend - yes DS still isn't trained at over 3, ASD is often associated with delayed toilet trained. Friend reply - well my friend's DS with Aspergers was trained at 10 months because he hated the feel of wet/dirty nappies. Felt like a slap in the face at the time.

I think as long as you avoid the howlers (sort of comments Riven linked too!), if you accept that parents by and large are the experts in their own child, and will have tried the obvious ways of dealing with behaviours, you can't go far wrong.

lol riven I think i've had most of those said to me. and added to the "is your husband disabled too?" I've had, "But your ds is normal though?"

I do still think it's very hard though knowing what to say to people if anything at all.

And tbh I think that even offering to help can be perceived by some as patronising - it's the opposite of "how do you cope" and could be interpreted as "You're obviously not coping." Iyswim.

Because offers of help could surely only extend to doing things for someone - or would you be prepared to allow someone who had no knowledge of your child's condition to offer to take them off your hands for a bit to give you a break?

stillenacht, if you think the way people have responded to you on this thread constitutes 'really getting it in the neck' may I suggest you haven't spent much time on message boards. This thread has been very reasonable and informative as far as I can see.

'would you be prepared to allow someone who had no knowledge of your child's condition to offer to take them off your hands for a bit to give you a break?
' no, to theextent that we refusedrespite with an untrained person

Ifds1 hits me I pick up the pieces,love him carry on. I wouldnt put anyone else at risk though, so am always there bar school or very occasionlly certain friends for maybe 2 hours max (he can hold it togtehr that long sometimes if all else is familiar)

Mum is the only babysitter

Sorry riv, not cleaning your place on friday.... well unless you'll do mine in return

But am happy to do cake, although not sure if you and your dh are Vegan or who isn / isn't in your family so not sure what to make.

Tell me and I will produce yummies (amke it before 1 and I can order the ingredients with my food shop save taking all these out LOL)

people always assume that he must be.

I also had someone say to me once about ds "Are you sure he's normal? he's just so well behaved."

I have now LOL, and even replied too.

So go on..... vegan / not vegan???????

Ah veggie can do, both sisters veggie. Not a prob. I trust you like cake?

snort. no I think Riven really really hates cake, what she would love are some chopped celery and carrot with wheatgrass juice.

Yeah I know, have seen her posts LOL

Salad of nettles and dandelions suitable Riv? from the roadside not over farmed or anything

don't you mean - locally sourced rather than from the roadside

No, I mean from the roadside

I'll try and skip the ones I sprayed with weedkiller yesterday though

stillenacht, i totally accept and realise that dyslexia is not evn the same category. however, my point was, i have seen a teeny tiny little insight into the world of having a child who is different, and how scary that was. never mind a child with severe, life limiting disabilty. but even then , i am not allowed to profess my admiration for people coping with situations so much worse, as that is patronising.

so, as i should have done last night, i will leave this thread, you seem to be deliberately misinterpreting me, or maybe i am not expressing my self clearly enough

"Like, a pregnant woman is allowed to say 'I am fed up of being told 'gosh you're big aren't you' and that is ok and she gets sympathised with. Possibly because we've all been there and had to vacant comments that are cliches because someone cant think of anything else to say.
We are'nt."

riven, i do sympathise.in a non patronising way

but there seems to be no definitive answer as to what you can /can't say. and you don;t know if the parents you meet in RL will react positively to questions, like you and stillenacht would, or if they would rather poke their eyes out than answer more questions

there is no way i can speak for all parents of NT children, and no way you can speak for all parents of SN children, so in the middle you get well meaning but irritating cliches .

because people want to say something kind, show an interest rather than ignore

anyway, i really should leave this thread! again!

I think it is probably meant kindly and they are in awe of you, but you cope with what you are handed. People asked how did I cope with twins, well you just do! (although I realise that is a poor comparison)
But I can see how it could be annoying,is there ctually any need to say anything anyway ?