How honest/upfront are you about your child's sn/disability?

[Blossomhill]

I have always been open about dd's sn as I feel that it's not her fault and it does make life easier if I explain (obviously I don't broadcast the fact either!).
I am not sure how common this is as I know quite a lot of people on the "sn circuit" where I live who will only say something if they have to.
By this I mean if you are in a shoeshop etc As dd plays up in shoeshops I do tend to say she has sn and it makes life easier all round.

As ds2 is only 22 months so generally he doesnt attract that much attention. I do explain to friends, neighbours and anyone we have more than a passing relationship with. Other than that I only explain on a need to know basis. I have even stopped bothering explaining to the ladies at the supermarket check-outs, who try in vain to get ds to wave back at them, whereas in the very early days I would have been tempted to give them chapter and verse (until I noticed their eyes glaze over in boredom!)

The one time I actually blew up was when I was in the park with DD and a couple of mums wanted to get on the swings (they had only waited a couple of minutes). They were quite angsty and I said, 'We won't be long, we had to wait a while.' One blew up and said, 'You f child is old enough to go on a grown-up swing'. I said, 'Don't you dare talk about my child and actually she is severely autistic and not able to go on a grown up swing.' She said, 'I'm not surprised she is autistic having a mother like you'.!!!!!!!!!!!!!!!!!!!!!!!!!!!1
I had to be led away by my very calm friend and resist getting hold of her head and banging it on the ground.

Ds is allergic to latex, and I used to just politely say no to offers of balloons and stamps. Now I have started to say "Bob is allergic to latex and can't have that, thank you for the offer". I did this after seeing him watch about 40 children get a lovely balloon advertising a kids festival, the longing in his eyes - he really wanted one.

We recently appeared in a women's magazine and my main motivation was so that the people who see Bob a lot but don't actually know us (like the lady in the post office) would be brought up to speed without me having to talk about it in front of Bob. It worked a treat and our local shops are now balloon free!

Bloomin eck JakB, why couldn't those silly thoughtless women just tell their kids to go on something else?

JakB - with people like that in this world what chance have children with sn got?

Ignorance...

My friend actually said to me, whose child is worse off, your daughter with severe autism or her daughter with her as a mother.

jakb! - your friend is right though .

I don't go out of my way to mention dd's SN but if it comes up in conversation then I will happily and openly talk about it.

Out and about I don't think it notices much as she is still young. I guess a few people in the supermarket queue/on the train might think it is odd that she doesn't chatter back to them when they say hello.... but they probably think she is just shy.

I once had someone in a shop say "you should be walking not making your mum push you around it that thing" to dd and for a split second I was going to say something and then I just thought 'WTF I don't need to'.

I guess that is what I go by really - if it is going to make a difference to somebody's understanding of dd then I will say something. Otherwise - can't be arsed.

I find that I have people come over and talk to dd1 and I and then tell me about their relative/child who has down syndrome... then I get the stares etc especially if she is in tired tantrum mode..... I also get the stares if I am signing to her and poeple asking if she is deaf - then I will say she has down syndrome. But like hitc if it will make a difference I will say something - if not... again can't be arsed.......

JakB - I would have just lost it - so lucky you had a calm friend to take you away.... Sadly it is that kind of ignorace that you have to struggle against and that wears you down.

Bloody hell JakB think I would have had to "wipe the floor" with her!!

I am with the HITC "can't be arsed" attitude on this subject. In fact on holiday dh and decided before we went, our holiday motto was going to be "F... you, she's autistic" although we didn't actually say it to anyone (obviously) we did give each other a few "F... them looks" when other people were obviously staring

I tend to play it by ear and have gone to both extremes. Ignoring people looking and just letting DS get on with bunny hopping etc, to roaring "he's handicapped" at annoying huffy people
I do get DS some funky/punky t-shirts but hold back on something that's too overt as I don't think its appropriate to express myself ON him in a rude/unconventional way. Don't know if I've explained that, he's got a couple of Sex Pistols t-shirts and a Clash one but I wouldn't get him the Never Mind the Bollocks one as it seems exploitative as he doesn't know what it says iyswim. He doesn't know what the others say but they aren't possibly exploitative, just fun.

JakB, that's outrageous .

I've never told a complete stranger, but tell people when I've got to know them a bit. I tend to tell them when they ask about ds' special diet - I usually turn up at playgroups and the park clutching a bag of rice cakes/gf biscuits

there are ALOT of people who are very lovely though, who come over and approach you and who are genuinely interested or not bothered for whatever reason. I think it is difficult/wrong/presumptious to expect everyone to understand what is going on when alot of people have never had any contact at all with SN/illness and disabilities (luckybastards hey?!) I suppose sometimes the stares and that are done in innocence but it is hard when you and your child are the ones being stared at

obv some people are just plain old arseholes though

Yes, you're right Fio. I suppose the bad experiences stand out but there are LOTS of lovely people too.

that's true Fio- but those nice people are the ones that make me blub!

There was an incident in the bank recently (Nat West Newport Gwent to be precise) where the lady asked the kids (5 and 4) to sit in the waiting area while we discussed converting my account to a student account. Wasn't happy but didn't kick up. Sam however did, as banks trigger what we term his episodes where he runs and flaps and screeches) Dh came in, took 4 year old and left me with toddler and five year old (toddler in a buggy). Lady pointed at toddler and said 'is that the good one then?', I replied no, ds1 is autistic (I say autistic to people unlikely to know Aspergers ). She said, 'of I didnt mean anything my neice is naughty too'- I repeated he had sn, and left in tears. As I left she grabbed her coat and left too- I guess I must have detained her from knocking off early!

I DID complain and did get an apology, but I can't face going back in there.

I sadly can believe that about the bank.
Our DD has EB, which is a very rare blistering condition that scars. It affects EVERYWHERE - skin, eyes, airways, mouth/oesophagus and is very, very obvious. She is 14 months old, so we get a lot of buggy peeping and sadly we're getting used to the look of shock on strangers faces. What I can't get used to are the people saying 'what have you done to that child??!' or audibly commenting that 'it's disgusting what some people do to thir children/some people shouldn't be allowed to have kids' etc etc etc. I can cope better with people who ask, then they get the above simple version, but have turned round and said 'it's a potentially fatal skin condition - how were you planning to make my day worse?' I tend to feel bad afterwards though...

But no, I don't tend to volunteer the info, and though we were offered explanatory cards we could hand out - I just didn't want DD growing up thinking EB is the only thing that stands out about her.

My boy has a medical condition more than sn (though that is still under querry at the moment) I tell ppl on a need to know basis ie preschool needs to know and how to deal with it.