Dealing with peoples pity

[catski]

I realise I might well be alone in this, but I find it very hard to deal with people's pity when I tell them my son has autism. I know most are just trying to sympathise or be kind, but some have a way of doing it which makes me want to chew my own hand off.

I've put off telling one particular couple about my son's diagnosis because I know their response will be something like this>
"Oh my god, that's awful - I'm so sorry!" and then (turning to look at each other) "God, we're just so blessed aren't we. So so lucky."

I can't really explain why this makes me want to respond with "Oh fuck off. I'm incredibly proud of my son and I wouldn't swap him for yours in a million years." But it does. Lack of strength of character I suppose.

They are coming to my son's birthday party on sunday and the above situation will inevitably come up. Can you give me a quick lesson in character building and some more reasonable responses before then?

Can't help sniggering at your response there , would be tempted to say the same thing I have to say!

Will come back and see if I can think of something useful to put but DS is nagging me to look at the butterflies he has made on the PC

TTFN,xx

just say they have nothing to be sorry and that having a diagnosis in no way changes your son, he is still the same as he always has been

I'd say something along the lines of.. 'Oh, no, i'm blessed! He has a wonderful personality - and makes me laugh every day. We appreciate the milestones so much more, and - yes its hard sometimes - but the high's are just magical. I just don't think you get that with a "normal" child..'

I'm a fan of the sarcasm route

PMSL at that.

Catski, most people I have told have been on the non-believer scale. Either they don't believe that there is such a thing as the autistic spectrum or that don't believe DS1 is on it.

I just say that DS1s brain is wired differently and that's the way it is. If anything it makes things more exciting and him delightfully eccentric!

I'm sure it's the same with your DS

BR

LOL - Thats actually exactly what i wanted to say bunny. Yours is much more polite though

mmm yeah but your's is what we're all thinking!!

lol at Dante's sonata. Your DS has got class!

Hehe tht was funny, yeah I knw what u mean, I HATE when ppl are like "Oh, wat a shame, hw do u cope?" !!!!

My ds1, 2, has severe epilepsy because of an unnamed genetic disorder, he has other problems too. We go through a tough time, but everytime I go outta the house it's like I am reminded of it when ppl keep asking hw Jack is...I KNOW they mean well and I would probably be the same if I knew someone who had it tough with their LO, but the pity does get too much, it's hard enough sometimes

Thanks for the support and suggeted responses! Some of the them have really made me laugh.

smallwhitecat - I understand what you're saying, and most people have been pretty sensitive with their responses, but this couple do have prior history (had a similar response when my son didn't sleep well for the first six months whereas their son was sleeping through - it was very much "oh I wouldn't be able to cope, how do you do it, god we're so blessed" response).

I feel it's a shame some people don't concentrate more on the positives rather than the "poor you" side of things. For EVERY child there is surely something positive to say about them is there not? Whether it's lovely eyes or a beaming smile or his musical taste (!)- a positive remark always leaves me feeling much better than a "poor you".

"Oh my god, that's awful - I'm so sorry!" and then (turning to look at each other) "God, we're just so blessed aren't we. So so lucky."

Ha ha - I have a friend like that too - I don't know why I'm not allowed to say the same thing about all her problems 'I'm just so blessed not to have your DP' {grin]

I still avoid telling anyone who is not a real/close friend. Sometimes I feel like I'm hiding it which is wrong but at the same time, I haven't got time to go over the whole autism story again

How soon did you know?
Very soon
Are the local services good?
No
Where will he go to school?
Don't know
Has DS2 got it too?
No
and so on ad infinitum

I agree catski, we all know ppl mean well, but def, why not ficus on the positive things they can do, or if they r gorgeous kids ir watever it may be? Not "Oh wat a shame. I dunno hw u cope"!!! Aarrrrrrrggghh!

And believe me I just wanna shout "Fuck off!" too

Cyber, I hate the whole questioning thing when I tell people about DS2.

"How did you know he had autism"
"Will he grow out of it"
"Will your DS3 have it"
"Well he looks normal to me"

Aaaarghhhh

Catski, I once said to someone who tried to put their false pityness on me "It's not as if it's terminal". Not the best of responces, and not my proudest of moments, but it shut them up.

From a mum who comes into contact with you and your son, just how would you like them to respond
'oh right' change subject
'really? That's great'
'Oh'

Seriously, I'm not meaning to upset anyone, but just what would you like them to reply?

You ask a valid question Bradford Mum and I have in the past started threads asking for examples of positive responses. As a respondent you can feel trapped. If you talk to the child you risk learning that the child does not understand you. If you don't talk to the child, you risk learning that you have patronised the child, etc, etc.

I think that a positive and specific observation about the child is best. If you haven't had time to make one, the next best thing is probably a question like "and does s/he enjoy nursery?" - nice and open so the SN mum can elect whether to provide more information about the SN or just to say "yes, she really likes Mrs X the teacher".

I cannot help the OP however as I believe her suggested response is far too mild and producing a machine gun is the only appropriate response to anyone who announces that they are "blessed" in comparison to the person they are conversing with. If you cannot find your machine gun in time Catski then perhaps saying "Really? Is that what you really think?" with a raised eyebrow and then walking off - or even staring at them and letting them think about it a bit - has the advantage of not involving swearing and turning the tables on them a bit. But I still think you should kill them.

PMSL at you Lingle

I have to say though that being a mum with possibly a SN child even I don't know what I actually want people to say to me when I tell them.

If they respond with "he looks fine to me" then I feel I have to provide all the examples that of course they don't see and that reinforces to me all the negative behaviours.

If they respond with pity I feel very upset and tearful that he 'isn't the same'.

I guess what I personally want is people to say "Oh? Gosh I had no idea. Well as far as I can see he is just little DS with a few little quirks, he's lovely!"

At least I think thats what I want.....

bradfordmum - I reckon if you know the person reasonably well - how do you feel about that? is a good start or - do you want to talk about it all? put the ball in the mum's court. If it's a casual acquaintance, than oh yes, right, change subject probably isn't a bad response at all.

The best response for me is when people ask genuine questions tofind out more. 'How is he getting on at school' 'How does it affect him on a daily basis?'
I too have a huge dislike of the pity response. It has happened twice, once with a family member and once with a playground mum who is a psychiatrist. With the psychiatrist, she sort of went down in my estimation because I thought she should have known better. With the family member it was harder to forget. I'm always slightly taken aback when people express pity as it's not remotely the way I would describe our life.

Of course it depends how well you know the mother and child in question. Here's an example of an email I received from one of my friends after giving her an update on my son's diagnosis:

"Thanks a lot for emailing us. I had been thinking of you guys and wondering how it was all going. I'm sure its really upsetting for you but I also know that X has two fabulous parents and that will make all the difference. You are both fantastic with him and he's a great super-cute little boy.

Let us know what we can do to help you in any way at all. Emails, phone-calls, Facebooking etc. Maybe another trip out to see you guys soon too. Seriously though, just let us know what you need and we'll make it happen.

Chin up kiddo and re the below - I find that a seriously good cry is just the ticket every now and then, so make sure not to be too worried about maintaining your composure."

She found something POSITIVE to say. It made me feel supported, not pitied. I really found her response uplifting whereas the "poor you/I feel sorry for you/I'm so lucky/It must be awful/I couldn't cope with that" lines just make me want to stick my head in the gas oven.

I find the 'oh right' approach fine too with people you don't know well. I had it on monday walking my younger daughter to school when a dad asked about her sister. It was quite nice that he treated it like no big deal and didn't try to make a drama out of it.

I HATE it when people do a pained expression afterwards!

I think "oh right" from an acquaintnce type is the best way to go - after all, the information being imparted is just a fact.

I tend to tell people if they are expecting a response form dd1 (she si 4, but big and looks 6ish, so people are often baffled when she blanks them). It is just a fact to let them know she isn't being rude. I might as well tell them that ehr favourite colour is blue - another fact, and one where no one woud find "oh right" an odd response.

I am not sure if i am saying what I want to say very clearly.

the way I see it, it is just something that needs to be known about dd1, like the fact that she can't eat dairy or gluten. Simple.

although i do also appreciate that it can come as ashock to people - i had about 18 months to come to terms with the fact that dd1 is ASD (slow process, day by day realisation) before she was actually diagnosed. Everyone I've told (other than friends who shared that 18 months with me) is confronted with it suddenly.

Well done Catski on holding your tongue - I am guessing that those people are unbearably smug and insufferable in general?
I have a theory that only people who think themselves immune from the ups and downs of life give the 'pity response'. Anyone with any life experience or imagination just doesn't.
As silverfrog says, there are many facts in life and sn is just one of many.
I have to go and lie down in a darkened room now.

A good answer I got from my boss (a mother herself btw) when I told her was 1) take time off if you need it; 2) she told me of a child with ASD she knew who's now a teenager and is doing very well in school.