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!!!

portoeufino - i agree with your post particularly the last part that justboutme highlights

Of course if you met a stranger you wouldn't offer help only if they were struggling with shopping etc with a tantruming child/wheelchair/major maclaren buggy and they look like they could do with help (in days gone by i wonder if it was any different before we all got too scared of offending people...)-the best thing for me if a stranger comes up to me would be for them to ask about my son - isn't he tall etc , what does he like doing and then broach his disability if you feel comfortable.

If its a friend (and yes friends spout the 'special' shite as well) then offer help - we get very very little and soooooo many people say to me "I expect you get lots of help" errrrr....noooo!!!!!

You could always ask 'is there anything i can help you with?'...if you see a lady in ASDA struggling with her autistic son she will be vereeeee grateful

transfers wads of cash as doesn't want to get her hands dirty

with a sneer on her face

gets pa to jot a terse note explaining transfer

Ron, no it wasn't you I was think of . Actually probably no-one who has posted on this thread. I could go so far (very uncharitably) to say they probably hide threads like this!

yes riven I have some friends who treat my DS as if he is going to break and others who treat him as a regular 5yo...do i treat him day in day out as if he is going to break...i don't think so as i wouldn't get through each day if i did. It is a difficult thing to explain isn't it really....

If saw anyone struggling with a screaming child and a buggy/wheelchair I would offer to help. And I do, as I travel by bus every day and this isn't a rare occurence! Same in the supermarket. (I have a few language barrier things in Belgium which does slow me up a bit). I would always speak to the child directly - if the circumstances were such. Like I said, I'm crap at small talk. Should i be avoiding weather like conversations and talking more about Johnny Depp? And your dd does have beautiful hair, Riven - though I am biased! My dd started off like that but it is getting "mouseyer" by the week.

thats fab riven

Mine refuses her dinner too. I do wonder that i'm just crap at cooking as she has double helpings at school! "Oh I had pasta with brocolli today and it was delicious". (french accent). Does she eat brocolli at home, does she feck.

Do you know, I just remembered something. Nearly seven years ago, after ds1's twin had died, I was sat in the hospital - ds1 about to be born, dire warnings that he would die or be brain damaged, truly a desperate time for me.

The drs and midwives were generally kind, but tended towards either the very blunt (having said no to a termination apparently gave people the right to refer to my unborn child as a "vegetable") or the ridiculously naive ("I'm sure it will be OK").

There was one very young dr. who looked at my notes, just stopped and said "you know what, I just don't know what to say to you. I can't imagine what this is like for you. I honestly, honestly don't know what to say to you."

It just struck me that sometimes you come across someone who has the humility and compassion to say - well, nothing! He presumed nothing about me or my situation, and maybe that's how it should be?

Sorry have rambled! This thread has been really interesting and I'm so glad to have read ALL the different views on it.

this thread is so informative and interesting
minipinkscottish when my children stare or make comments about people I do say not dont look but ' dont point or stare it is rude'

off topic but today ds and i were on a train and ds said ( extra volume!) 'Is that a boy or a girl' and I said it is a boy. then I added 'remember when people commented that you looked like a girl ? People come in different shapes and sizes and everyone is different'

That is the type of response i would give...maybe the mum meant 'it is rude to stare

Hmm..Riven, now that is where I am different...I would always talk to any Kid around their mum too...try to engage them...and that is any child....I would try and hope that I get it right...and no, I would not assume that anyone "looking" disabled is learning disabled....I suppose I observe how the mum is treating the child, etc....in order to gage the situation...
I possibly still get it wrong...

And, I am, hopefully not a complete oaf...a few years ago I met a few people (mums and their Kids) at a Softplay...as we all went on the same days, we started to go together and become friends....initially I just thought that my firends little boy might be on the autistic spectrum, but I would never broach the issue until I did know her better...and whilst I was able to say that he is doing so so well...I also was able to immediately realise the little ones problem....and my friend is very strong and very patient, more so than I ever will be...but I know there are times she struggles....and that makes her human... and if she needs help she gets it where I can help...

I get what you're saying "suziseis* but if you had been there you would have known that the children weren't the ones with the problem......the children were naturally curious and if I had had the chance I would have explained that ds1 was born with only one arm but the mother made the children turn away.....this was rude and ignorant.

Of course ds1 was my first child and as time went on I was more able to engage people when they stared and explain the situation....it's not always easy to know how people are feeling.
I had reason to address my own insecurities and prejudice when ds1 was 2. We were at hospital and a lady in a motorised wheelchair was coming along the corridor...she had no legs or arms and hands on her shoulders. In one of her hands she carried a mobile phone. ds1 said "look mummy, look mummy.....look look at that lady"...I said "yes darling the lady has to use a wheelchair because she can't walk...say hello to the lady" but I felt a bit embarrassed by the way ds1 kept jumping up and down and saying "look look mummy"... eventually I said " look at what?" and bless him he said "look at the ladies cool phone".......that taught me a lesson that day!!!

Verygreen I am so touched by your post, a wonderful contrast to what Mum experienced some years before. Mum lost 4 babies at a point that now they may have survived (25 weeks). Then her child contracted rubella in uteroa nd she had a termination for a baby whose development was incompatible with life . The MW for the next baby (me) took one look at her notes, stared at mum and told her she was lying about her history!

Mum doesn't do self sympathy or anything but even she remembers that story with evident pain.

Peachy, I do hope things may be changing slowly in these areas. A friend of mine who is a retired MW told me that they were encouraged in those days to tell women who had a miscarriage or stillbirth that their babies were like baby birds that had fallen from the nest - like some awful proof of survival of the fittest. She herself had a termination nearly 30 years ago, and it was meant to be a "comfort" to her that the baby would've had serious disabilities - better off dead, eh? (Mind you my MIL still subscribes to that view, so maybe VERY slowly would be a more appropriate description).

justaboutspringtime, the hospital chaplains who looked after me were lovely .....

I Know justabout, but I think Mum just thinks she was lucky that she had three after wards that lived (3 girls, lost all boys).

minipink how lovely!