What comments do you get?

[bobalinga]

When I'm out with DD2 in her wheelchair (severe CP, blind etc) we get a lot of 'awww, such a shame, but she's so pretty with lovely hair'
or the 'sympathetic smile' with 'she has beautiful hair though'
I'm itching to say 'yeah, that more than makes up for having CP!'
I know its not malicious but its does strikeme as weird.

Ha ha- I had something similar at Sainsburys'

I went there with ds1 and one of my helpers. DS1 was being ds1, and the woman behind the chekcout kept looking at him. She eventually worked out that my helper was a helper and the conversation went like that:

"erm, what's up with him then?"
"He's autistic"
"oh just mildly then"
"Um no not really, he;s quite severe, he can't talk"
"oh that's such a shame he has such a dear face, he's so handsome such a shame".

etc etc I wanted to aks if it wouldn't be a shame if he was ugly, but stopped myself

some people can be complete wankers can't they!

Its like being good-looking is wasted on the disabled, cos, after all, who's gonna marry one!!
Maybe I'll come out with that one day.
In response to comments about C's hair I always want to say 'what!!! but she's ginger!'

I have said that when asked what her disability was.....'oh, she's ginger'
heheheheh

yes I always think the good looking comments come with an element of surprise attached.

We get this all the time. DD1 is a bit of a looker (takes after DH, lol) and everyone who meets her goes through the "hello, DD1!" thing (no response, of course, DD1 prop thinks they are a talking sofa or summat) and then, casting around for something nice to say... "ooh, isn't she pretty?" in a kind of "that can't be right..." sort of way.

I like it though when some people compliment his looks, the escorts for example are always saying how handsome he is, and I know they mean it, and value him anyway iykwim. It's the "it's such a shame, he's so good looking" that makes me PMSL.

You could come back with 'pity you're so ugly, still, being able-bodied makes up for it eh?'

isn't it a shame wtf hate that I have been known to say "why" and put them on the spot,.

I think you're being a bit hard tbh. These people are trying to make conversation with a child they have never met. Usually the conversation with a young nt child would be something like "are you enjoying school?" or "that's a pretty top you're wearing, is it your favourite colour?" or such like.

Well, when meeting a child with sn, but having no idea what the problem is, what on earth do you want them to say on the spot? They've got to say something or the conversation would just go dead, and that would be even worse.

qute right two... they are well meaning

I think all the children mentioned in this thread are non verbal (apoligies if not)- and they're not talking to the child, its to us the parents (or in my example my helper- although I've had similar).

I personally think its a bit odd to stand next to child and say to the mother "such a shame". But there we go.

Anyway what's wrong with letting off steam about people saying well meaning but irritating comments. I get fed up every year of the "is he looking forward to xmas" comments, even though they're well meaning, and I'd never say anything directly back to the person who said them (apart from smile and say "yes") . But to be honest they depress the hell out of me, and I'd like to be abloe to go into the equivalent of a padded room and scream when I hear them. Moaning about them here, where the well meaning person will never see them is the equivalent of doing that.

C is non-verbal and the comments are addressed to me. When I meet someone witha 3 yo I will say hi to the child if they are interested but I don't talk to the mum saying 'oh she's so pretty' 'what a shame'. The child would rarely come into the conversation tbh!
Maybe they try too hard and think ignoring the child is somehow disablist? Or we may think they are disablist?
Which is why I say nothing and just vent here. Today I had someone, after a talk about the weather - didn't know her but we were stood in a queue and making small talk - look down at C and tell me that last week she held the hand of a boy with Down's syndrome (c has CP). I'm not sure why. Establishing PC credentials? Its just a weird thing to say. Can't imagine talking to a stranger and announcing that I held a normal child's hand!
I guess when everyone is intergrated one day we can have everyday conversations that don't make you think 'weird'!

I don't mind well meant but maybe a little bit daft comments from complete strangers, I much prefer it to them completely ignoring him & avoiding eye contact. I think sometimes its nice that they try to involve him but just don't know whats correct or what my response would be if they said the wrong thing.
What does annoy me is these same comments or worse from people we know, colleagues, nieghbours etc.
Other than family the people who I like being with the most are our friends without children, they don't seem to have any preconceived ideas or expectation of ds2's abilities & behaviour & just are so relaxed with him & he loves them!

THats a good point Max. I find my friends with NT kids getting stressed about developmental stages, learning goals, piano practice etc etc. I've lost all that and know I would be happy if C ever managed to say 'mama' or knew what a book was let alone read ahead of her age group or whatever the latest fad is.
They then get all emabressed when bragging that their 3 yo is reading, glancing at C lying on the carpet and having a quiet dribble.
It's just so not important. C ishappy sp I'm happy (well, apart from the need tomoan and whinge....)

My friends with nt kids will ask how ds2 got on at an appt or what the doctors said etc but actually don't include ds2 in things in fact I had a bit of a row with a friend recently, she came round with her dd, when her dd went to try & involve ds2 in a game she jumped in & said oh no don't, just go & play somewhere else & leave him alone it will only wind him up. She thought she was doing the right thing but in fact she told her dd off for wanting to play & further isolated ds2.
In contrast we went to our childless friends & he was cleaning the car he greated ds2 with watcha get a sponge & you can help me with the car, I gave ds2 a sponge he sat on the floor cleaning the wheel for about an hour thought it was brilliant.. I was inside drinking wine.. maybe thats why I enjoyed it?

Everyone always comments on how tall Ds2 is. It pisses Ds1 off because they usually compare with him and say that Ds2 is catching him up or nearly as tall as or something. But it's really like saying well at least he's good at growing, even if he's struggling with everything else . I don't mind though really - I can see that they feel they should say something positive and they can't come up with anything else.

I agree though that prefixing it with "such a shame" is thoughtless and quite patronising really.

'Its like being good-looking is wasted on the disabled, cos, after all, who's gonna marry one!! '

Oh, yes, bob! You are not alone.

DD1 get this a lot, because she is very tall for her age and a comely lass.

She's dyspraxic. So in addition to looking like she's about 6, she talks like she's about 2.

Cue, 'What a shame. Maybe you could make her a model' (implying, because none of them is very smart).

One I got yesterday was 'well, they can do marvellous things with computers,the disabled'
Computing - the new basketweaving
Or, 'I saw that guy on TV who paints with his foot/mouth/bottom' to which my reply is 'really? C can't paint. I think her special gift was gymnastics. Bit of a shame about the quadraplegia....'

I often find childless men the best tbh, they often don;t have a clue what a child should be doing at any particular age, so they're fine, and just treat ds1 normally.

how true about people thinking won't no-one would marry the dsabled..

when I was about 16 I travelled home by coach one easter holiday. on the coach was a girl who I didn't know, but who knew my sister iykwim. anyway, it being a long trip (about 12 hours) I fell asleep, and woke up as one of the girls leaned over to get her jacket. and they had a conversation that went like this:

"mind that girl - she's asleep"
other girl - "oh yeh sorry"
first girl "she's blind".
"other girl - oh what a shame"
first girl "yes it is isn't it? you know, she's not very pretty, but she seems like a really nice person"
other girl "aw shame"
first girl "I feel quite sorry for her actually, because I don't imagine she'll ever get a husband. because not only is she not very pretty, but she's got a disability as well, and I wouldn't imagine any men would really be interested".

Good grief. Shouldn't pointed out you weren't deaf though! I think people assume disabled people don't have sex/get married/have kids but they do. Too many examples to list of course (plus David Blunkett).
I have had people assume C will go live in a home at 18 so I point out she may want to travel the world, have kids, etc despite her quadraplegia. One 'friend' even brought me a survey that rates disabilities in order of most attractive to least attractive with Cerebral palsy at the bottom. Did she think this would cheer me up?
She'll be whatever she wants to be and get married if she wants. Mind you, she isn't gonna be a great housewife

Bloody hell bob I hope you dumped that 'friend'. Wannabe- that's awful. But PMSL at 16 year old girls worrying about getting a husband!