What do you tell accquaintances about your dc's disability?

[chonky]

I'm running a marathon this year to raise money for a charity which raises money for paediatric research and respite care. Well, so far, I've been happy to tell people about dd's disability, and how we don't have a diagnosis for her, which is one of the main reason why I chose to run for this charity. However, I do feel in two minds about whether I tell the world about her disability, or try to limit the details to my family & friends. In one sense, I don't want to be ashamed of her and her disability (she makes me hugely proud), and I feel that it's important to bring disability into the mainstream view, rather than hide it away. However, I turned into a gibbering idiot today when telling a work colleague about her disability and doing the marathon, and I felt as though I'd given a piece of her and me away (the colleague was really sweet about it all).
I'm just interested really to know what other people say to strangers/ accquaintances, as it's still something that I'm not very good at! Sorry, this is a bit rambly, I hope it makes sense.

I am very choosy about who I tell and what I tell them for exactly the same reasons you describe.
I used to be far more open then I am now and only tell people if I want to and I feel I need to rather than just telling for the sake of it.
Like you I feel like I have given a piece of dd away and almost felt disloyal.
I do have a dx now but I don't always tell people her full dx just like you don't know if someone you are talking to has depression, high blood pressure etc. I just feel like it's my business and I will judge who I feel comfortable and who I don't.
Sorry I have rambled
What I am trying to say is go with your gut instinct about who you should and shouldn't tell!

Well done on running the marathon and for an excellent cause.
My DS4 is 20 months old now and has no dx for his hypotonia and GDD. The OT mentioned Dyspraxia at our last visit and my parents and in laws have pounced and tend to tell people he is Dyspraxic. I don't as I'm not convinced and until he's had his MRI and further genetic tests I won't be.
When people ask how old he is I always tell them and then gush "but he's got this floppy baby thing so he's a little behind in his development." I'm rambling now - but like you - I don't want people to see DS4's disability and think "poor little boy". I'd rather they saw the adorable 1 1/2 year old who can crawl at the speed of sound and gives great hugs and back pats.
Good luck with the run - I'd be interested to hear about the charity you are running for.

i guess it is easier for us as dd1 has a diagnosis - down syndrome. Her face tells the world. I think you will find if you tell acquaintances the minimum they will be very supportive. I did the Flora Light Challenge and just said I was doing it to raise money for Down syndrome association as my way of saying thank you for their support to us as a family.

chonky, I don't have an answer for you I'm afraid.
BUT do you have a justgiving page or similar, I would love to sponsor you in the marathon. I don't need to know anything more than that you are a very old, old friend who is doing something v.impressive.

if you don't want to say here, say, and I will email you about it

Its an interesting question. I think it is something that changes, first as you get experienced in telling people or not telling them and how it makes you feel. Also it can make you feel different at different times. I am completely open about DS but he's had a clear DX for a long time but, having said that, I don't tell all and sundry but I will tell people in passing, it all just depends on how I feel at the time, who they are, where we are etc etc. I have probably had a lot more practice than you though as DS is 11. I also find that having a "label", whether it is a true dx or not, makes it easier to let people know that your child has a disability without actually telling them how it affects them etc. I rarely find myself telling people that he is non-verbal, has a lot of odd behaviours and that we have a hugely restricted life. I tell that to very few people, usually if they ask which many just don't.

I guess I'm very open. DD (3) is in a wheelchair with severe CP so we don't get to hide it anyhow. And I will tell people she has epilepsy too if they ask. If I see someone starting I will say 'she has cerebral palsy'
I think without a dx it is much harder. There's a bunch of kids at DD's vision group that don't have dx but are profoundly disabled. they have it much tougher because they don't know what to tell friends and familyor anyone who stares or asks. Friend of mine has a son with a genetic disorder which is so rare there'sno name. So she calls it 'Harry's syndrome'. Thats his name. makes the questions about 'what are the symproms etc' much easier cos she then just describes him!
I think in the early days I wanted people to know because I didn't want people to assume she was weird or delayed for no reason. there was also a bit of 'how come the world hasn't stopped when this has happenend to ME' going on.
But I'm also a bit of a crusader for disability anyhow and like it out in the open. Its nothing shameful and the sooner the disabled are seen as part of society and 'normal' then the better it will be/

Thanks guys, it helps to hear your views. Once you meet dd it's immediately obvious that she has CP, visual impairment etc., and I'm really happy to tell people about it (if they're genuinely interested in it that is). I suppose a little bit of it is me not wanting people to feel sorry for her/ us. I hate the 'oh what a shame' comments, although I know that they're well meant and stem from people not knowing what else to say.

MrsJC, bless you Yes, I have a justgiving page. Search on justgiving under my maiden name and you should find me, if not drop me a mail. In fact drop me a mail anyway, it'd be lovely to hear your news (you had that babe of yours yet?). I would post the link, but we're orf on hols tomorrow, and I wouldn't want to leave the link up for too long as it's full of pics of dd and I.

Megalegs, the charity I'm running for is Wellchild. They've funded/ are funding research into all sorts of things: autism, neurological disorders, premature births, cystic fibrosis etc.

Chonky, I know exactly what you mean, I work in a male environment, so not much baby talk when I returned to work after a very prem birth.
They have known I have time off for appointments but I usually don't say anythin unless people ask & then I bore them for hours. But since DS2 has started using a major buggy, I have had a few comments, one said " I was really shocked when I saw you, I didn't realise". Not sure what he meant really? But better than the other one who asked "whats wrong with your kid?, when I told him he has CP etc etc, he then said "Oh Shit will he go to a spaz school" I didn't punch him, but wish I had.
Apart from the odd insensitive comment most have been lovely & parted with money much more easily when selling raffle tickets for charities.
Good luck with the marathon

at the comments mymatemax. They make me really sad, and I think you were very restrained not to lamp that bloke.

Will do Fio - am currently in La Belle France at the moment (ooh get me ), will do it when I get back.

My dd2 also has no diagnosis, and as she is so small for her age, still sometimes her SNs are not noticed as people think she is younger than she is. When people do notice and stare, I have been through phases of being very direct to staring strangers and then they get embarrassed, which is unfair of me, but I find it hard to avoid getting angry about some people's responses.

Can I sponsor you too chonky? Hope you enjoyed France! (ps formerly Caroline5)

Hello there wombat2, hope all is well with you. I was thinking about you only today (spooky!). Could do with picking your brains on schools. Are you set-up for CAT (not sure if I have your latest e-mail addy)?