Being called a victim

[bobalinga]

Anyone ever had 'friends' call you this because, heavens forbid, you are not 100% chirpy and happy all the time and occasionally mention that having a brain damaged child is a bit of a bummer?
Not sure what is a good comeback....

don't know the answer. but hate it whan people say it's a shame

I usually reply with 'You try living my life then see if you still think that'
Usually followed by a few choice words
But as you say, true friends wouldn't say that.

A 'friend' once said to me when I was having a particularly bad week, "It's hard for everybody with small children you know." (she has too totally NT children).

Erm, yeah, right!

This is exactly why I now avoid 'The Normals' as much as possible. They'll never get it and they always say the wrong thing. It's not fair on us or them, so I just feel I'm better off away from their ignorance.

yeah, you are right Karenthirl. Another friend can't cope with me being negative about DD at all. She'll always say, 'but she's such a JOY, isn't she?'. Yes, she is, but it's also bloody hard work sometimes and can be soul-destroying. My friend will never get this, particularly as she desperately wants a second child and has found out she can't. She doesn't understand that the 'sibling' relationship between DD and DS is SO different from the 'norm'!

People do seem more selfish and I think calling someone a 'victim' is another way of saying 'don't bother my tidy life with your problems cos I ain't gonna help'
So either we pretend that having abrain damaged child is totally fab (and thus doinga disservice to ourselves and everyone struggling) or we tell it as it is and lose all friends and get accused of being a victim and fishing for sympathy.
Gonnahave to avoid normals.
But it did hurt and I did fret that I whine too much but I don't think I do. If anything, when with normals without C I rarely mention her but I can't join in with the whole holidays/buying clothes/acheivments thingy cos we don't have any!

bobalinga. I only have about 2 friends. my choice.
and they both have dc's with sn . one with cp and one who has brain damge(pond) can't handle "normal" chit chat far to draining. (fine when I go on a meet up as we don't talk kids) people moaning about how hard it is with there child and what a handful they are. I did once turn round and say swap for a day and you will soon change your mind.

I was accused of moaning by a male colleague he asked "how are you, family alright?" He caught me during a really crap week & I replied "Not bad, a good nights sleep wouldn't go a miss, M has had me up every night"
He replied, "Your never happy, their not babies long you know make the most of it, before you know it you'll be complaining he doesn't need you"
M starts school in Sept & I have just changed his nappy & carried him to bed with a bottle!
I just can't be bothered to waste my energy trying to think of quick comebacks anymore.

Got a link to anything jimjams has said. I know I should let this get to me but I've been questioning myself all day! Do I whine? Do I come across as 'poor me' (and if I do, is that actually wrong given how crap things are?)
Sigh
So here's a whine.
I have a quadraplegic daughter who has status seizures that may kill her.
I have multiple sclerosis and am in a wheelchair.
whinge moan complain.

It seems that anyone can moan and that's ok, until someone (including me) with a sn child actually breaks the silence and talks about a rotten day (or life) and suddenly everyone is shocked.

I usually say very little about my day to friends, and stick to "normal" subjects, but inside I really really want them to know what it's really like...but they will never "get it" anyway.

Bobalinga you are allowed to moan, everyone is.
I count myself very lucky I have 2 fantastic boys & even though ds2 has sn, he is mostly very healthy despite his shaky start in life.
But sometimes, just sometimes when we've had a sh*t day I feel like really bloody moaning

Maybe its because normals don't 'get it' so they treat our moans in the same way as if a normal was going on about something trivial. A 'get over it' attitude.
But we actually have a real reason to be depressed and need to vent but because norms don't undertsnad how heartbroken or sheer exhausted we can get it looks like non-justifiable negativity.
I dunno.
That 'friend' who accused me of being a 'victim' is always moaning and complaining and telling me how stressed her life is. I keep my trap shut cos I know people#s problems are big to them yet she lives in a big house in the country, has 2 healthy teenage kids who do their own things, a stay at home husband who does all the shopping/washing/cleaning and a large inheritance on the way. Her main moans seem to be which therapist to see that week as she sees counsillors, aromatherapists, kinesiologits etc etc. But I listen becaue thats what friends so.
She has no idea! And before you think I bend her ear daily....in the 3 years since C was born with CP, said friend has visited twice.

Why do people bother asking how you are if they are going to be unhappy with your response? I wish they just wouldn't bother asking in the first place! I for one certainly wouldn't miss it! I never really tell people how things really are, I have just got into the habit of saying 'ok' even if it isn't, I just can't be dealing with other people's reactions and I tend to go into the mode of reassuring them about my ds and have actually had someone cry on my shoulder about him! I find this just as unhelpful as someone being totally unsympathetic.

I have found counselling really helpful, I don't know if anyone else has considered this. but I just don't feel like I can confide in anyone else cos they just don't understand! I pay for it but I really feel people with disabilities and carers should be entitled to free, good counselling services for this very reason, that generally other people can't cope with being supportive and understanding and sometimes you just need someone to listen to you.

Why do people bother asking how you are if they are going to be unhappy with your response? I wish they just wouldn't bother asking in the first place! I for one certainly wouldn't miss it! I never really tell people how things really are, I have just got into the habit of saying 'ok' even if it isn't, I just can't be dealing with other people's reactions and I tend to go into the mode of reassuring them about my ds and have actually had someone cry on my shoulder about him! I find this just as unhelpful as someone being totally unsympathetic.

I have found counselling really helpful, I don't know if anyone else has considered this. but I just don't feel like I can confide in anyone else cos they just don't understand! I pay for it but I really feel people with disabilities and carers should be entitled to free, good counselling services for this very reason, that generally other people can't cope with being supportive and understanding and sometimes you just need someone to listen to you.

Sorry about posting the same thing twice, I'm a bit crap today!

this gets to me too. it seems ok for them to whineg abot the problems they experiance with chidlren, like finding a house that is within budget but in a good catchment area or finding a pair of shoes teh right colour pink to match little judiths coat or wahtever but when you reply with things like "i know, there isnt a single ASD school within 60 miles of here s gawd knows what we will do with DS" or "tell me about it. Ds is refusing to wear anything that isn't red at the moment and i cannot find anything resembling shoes in red. he has had to go to school today in jus his socks because he smashed a chair and punched me in the stomach yesterday for attempting to put black trainers on him"

they just say "yeah. XXx gets like that at times" or "well cant you put him in a mormalschol and just get a special teacher"

like its all so easy.

you feel you can actually see them switch off when you talk.

or the best is when they ask when Ds will be at school as they wante to invite me for cofee and it would be so much easier if it were just me and DD.....what with Ds being so inconveniant to their social plans.

Heh, yes. C is rather inconveneint. You'd be amazed how many people have steps into their houses that you can't get the wheelchair into. I get the 'leave it outside' as if it wont get nicked and miracuosly DD will be able to walk around their house. So I unstrap her and lug in a heavy 3yo over one shoulder then lay her on the floor and despite me having explained a billion times that she can't sit up they come over all astonished that she just lies there'oh, I thought you meant she was a bit wobbly.....'
They also think hospital appointments resemble their infrequent visits rather than the mammoth all day funfests that a SN appointment entails.
doesn't occur to people that there really is nothing 'normal' at all in ourlives (except maybe poo smelling the same), nothing comparable but should you ever be foolish enough to try and explain you're 'being a victim'
argh
I think every normal should have to spend a week witha SN family.
PS. Gonna have a small moan right now. Needed new batteries for my wheelchair yesterday. £350!!!!!!!!!!!!!!!!!!!!!!! I was imagining about 50.Never bought any before. And the man dropped one of the old ones and made a giant hole in my frint door.
My husband says I'm getting too expensive!

I also think Bobalinga that all student midwives should spend a week at a special school or someone's home to see what babies turn into...if they don't do their job properly. I am sure that sounds very harsh but they never ever see the result of their work. It may just make them a better midwife.

(Am fully aware that only a small percentage of babies born are damaged, but mine is one of them).

great idea TIP for the reasons you mention but also for those who go on to have more children.

Midwives just dont seem to understand that there are times when edler siblings HAVE to come along ot visits. or why they ask lots of questions or why they want to touch everything or get worried abut the machinery used on mummy. or just why they wouldn't be ok to wait in the reception area!

there was a thread a while ago with someone having a whinge whihc got slated by the entire of mn.
the title was "if only everyone could have a Sn child for a day" or something liek that....and its true.

if only other people could understand just how difficult the small things are it wuold make our lives so much easier

With you on the midwife thing twoisplenty. Did yousee that Panorama last night? My heart bled for those women whose kids had been brain damaged because of crappy practices (celyn's brain damage was a freak accident at birth)
But yeah, people need more SN experience then they will know we moan for a darn good reason!

Mamazon- wasn't that thread started by Fio?
(apologises if I'm wrong)
It really did kick off didn't it?