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!!!

Oh Gunnerbean I ask myself that same question frequently. 'would I have said some stupid or insensitive things had I not had the pleasure of DS2?' Some I may have said, some I wouldn't. It is as mrstittlemouse said earlier though its similar to the infertility/conception thread imo, if enough people are saying that it is mildly offensive or patronising then it is best learnt from.

I get this. my kids both have autism, ds1 has erbs palsy too, ds2 has asthma and anaemia etc etc. I get people say they wouldn't be able to cope. I say "it'd be your child, you would cos you'd love them." raising a child with disabilities isn't a special thing to do. It's just playing the hand you're dealt. you get on with it. Because at the end of the day, what matters isn't the disability - it's the child. your child. The child you love. and you're a parent. A parent just looks after their child. Every parent! It just so happens that some kids have a different, or additional, set of needs.

I don't find it offensive when people say it, I just think they're wrong. And I feel sad for them that they think they couldn't look after their child in certain circumstances.

Perhaps they mean it in the sense of you have had to cope with something you didn't ask for but you have done it with dignity as opposed to becoming a whinger, and you don't complain or expect effusive sympathy. Maybe they are in awe of your fortitude - some people really wouldn't be able to cope!

I always feel a bit like this when people describe other people as a 'good mum', surely parents just get on with it and muddle through - then I remember that there are some terrible mums out there .

fizzpops I think you might be right, to me this is normal, I just get on with it, we have no support from the family, probally cos we never ask for help. yet my sil/bil with 3 boys get loads and as for my niece with twin teens(one with sn) get loads.
I just don't see this as being special, just my family.

'what is a helpful response if a friend has a child diagnosed with a disability?'

Ask questions! The type of disability will determine the type of question but asking questions and showing an interest in somebody is usually a positive way to communicate. Many of my friend's dc have disabilities which are very different to the disabilities that my ds has (and therefore outside of my direct experience) but I find their parents are always willing to talk about how their dc are developing, how they are getting on at school and so on.

chegirl,

My daughter has cancer (brain tumour), she was diagnosed at 5.5 months old, she will be 10 in July.

We have had only about 2 years off in the nearly 10 year struggle.

We battle on and on, but as the options drop off one by one, each one not working, it is hard to remain positive - i do however !

Her illness has had a massive impact on our lives. Recently the doctor said to me you have to stop waiting for a cure and accept she is chronically ill, which i think has helped. Her illness has left her with alot of side effects, again which affect what we can do and where we can go.

I am afraid i find it a bit patronising and a i am bored of hearing ' how do you cope '

I dont know how i do, i just do, i wish i didnt have to. I have tested myself in many ways. Still i long for the day when i dont have to do it anymore.

She has taught me alot of lessons, so have the children i have met along the way, who havent made it, i realise i am lucky she is still here..... but i still wish it was different,

I think there is a slight smugness to people who have simple lives, sorry but i have been doing this for a long time, and thats my take on it.

Giraffecant Yes! Are you going to give me a clue?

lydle3 Hello.

I am sorry you and your DD have been living with that crappy disease for so long. I know what you mean about the positive. How else are you supposed to live? We were always positive about DD, it didnt cross our minds to be any other way. Its not denial or anything like. Its life.

Its difficult to get across to those who dont know, just how huge the impact is on family life. How it changes the whole dynamic of the family and life plans go out of the window.

Who wants to 'cope' with all that.

Heres to the day when you and your DD dont have to. When you guys can leave the treatments and appointments behind and get on with life as it should be.

I have to say I DO think children who deal with long term conditions are 'special'. It can sound patronizing but they have to put up with so much. All the kids I met whilst DD was on treatment had something about them. A spark or something, I dunno. Its easy to sound sappy and mawkish but there it is.

I just wish their characters didnt have to be tested. I'd much rather have an average child who didnt have to go through the crap.

Speaking as someone who has had very little to do with anyone with a disability as an adult I would be interested but scared of offending. I had a sister who died when I was 3 and speaking to my mother about her she said that people had crossed the road to avoid speaking to her and that it had hurt her deeply. She also said she found it painful when people spoke to her about my sister. So I asked her what would be the right thing for people to do and she couldn't tell me.

Her preferences in this situation may differ from someone else's - I don't think there is any one size fits all approach. Just as some people may appreciate the effort of someone trying to say something supportive (however clumsy) and others may just find it patronising.

Incidentally this thread has not helped to clarify for me how I should (or even if I should) ask questions etc. If anything it has reinforced the feeling that anything I say may unintentionally offend.

That looks like a great book - may get it for DS1

Im guessing im still early on in the cancer stages with dh, maybe i will get sick of it after a while! also because dd1 is still being assessed i cant say she has ASD at the moment, but hey life sucks somedays, but as a parent/friend/carer, do you have any choice but to be positive? I know i cant afford to fall apart, i might not find all the pieces to put me back together.

lydle3, your dd sounds like a right little fighter

lisad123,

she is very special, i think an adult may have given up by now.

She has had 4 years of chemo, 4 brain operations, 6 weeks everyday of radiotherapy. she rarely complains, we attend the hospital 2 a week every week and have for about 2 years now. She is a one off !!! her hair has fallen out 5 times, that is the thing that upsets her the most.

We can all learn something from her, she amazes me and i am her mum.

I understand people are usually well meaning, but i have had adults pivot on the spot to stare at her in the street when she has had no hair ! I know people are curious, but it upsets her alot. Often people will say how is she . . . but i know they dont want the truth, the long boring tale, so i usually say fine.

Im not really sure what the right answer is, i think genuine caring interest is fine, but try not to word it with partronising phrases.

I have a friend at my childrens school and her son has a rare life-limiting illness, i care and am interested in how he is, but i am cautious how i approach things, because i dont want to come across as though i think i know it all, but i have filled in lots of DLA forms for example, so could be of help.

Tclanger, where did you get that book from? I would like one

thanks

thanks x

'what is a helpful response if a friend has a child diagnosed with a disability?'

Completely agree with MMJ about asking questions. Just a simple "how do you feel about it" (the diagnosis) and the answer to it should be a good guide as to how to carry on the conversation.

Lydle3 - sorry to hear how your family have had to deal with such an awful evil disease.

Yes, asking questions is good but don't start them with 'what is wrong with her....'!

LOL, no better to ask, 'what does the dx mean to your dc?' or 'how does the dx manifest itself?', etc.

LeninGrad - yes, I agree but I think we all do it to a certain degree.

Oh I identify with this so much. When ds2 was dx'd I had people saying the most crass things out of misguided supportiveness. One of the worst was his teacher's comment of 'if it had to happen to anyone you're one who'll cope really well with it'. I don't want to 'cope', I want ds2 not to have it!

Group hug.

Absolutely 2shoes (OP)

I'm special and a saint

oh yes

that'ws why ds1 is melting down inside a trike box, and I am sat on here trying to gnore it instead of implementing some high tech probably American shiny system to moderate the ASD

Bog standard and struggling but just about doing is thankfully enough, and every person tells me I am special makes me feel I should be better at it all and therfore a failure

''what is a helpful response if a friend has a child diagnosed with a disability?''

Best response I ever got was rom the SENCO after ds3's dx (second dx for a child of mine in a year)

'oh shit, not again' and a hug.

Worst was my Mum's 'well yes we knew that' (although my dad yelling down the phone that it was dh's fault as none of m nephews have Sn, whi;st PHSL, was amusing )

Just take they'r lead as we're all different people but let them talk and repeat themseves, dont expect them to be upbeat about it (feelin you hve to be is horrible) and neither walk away nor exopect anything of them more than you would yourself