OK nosey survey following on from another thread.

[gess]

Do you like being told that parents of SN children are recipients of a 'special gift' or chosen by God because some higher power knew we could cope? (sorry expat pinched some of your wording there).

I'm interested to know what the figures are, I reckon its 50:50 love/loathe the comments. I'm in the loathe camp

"There are some things yesterday that I haven't changed at all since the 13 years we've been together, that he despairs of me ever being able to pick up a lot of stuff."
And this should read:

"DH said things yesterday that I haven't changed at all since the 13 years we've been together, that he despairs of me ever being able to pick up a lot of stuff."

Clearly today one of the negatives is not being able to get my thoughts out properly.

bubblagirl, I'll catch up with your posts and the others on this thread later, am in and out and visitors at the mo.

I was not personally at all offended by your post on my thread yesterday.

I hate to think that you've been really hurt by any posts on this or the other thread.

I assumed when I read your post that you were the mother of an NT child trying to be helpful w/o really understanding how someone like myself feels as the mother of a SN child.

But I've been heartened by the fact that so many people such as yourself have essentially well-meaning, kind thoughts, and are willing to take the time to post on threads in an attempt to help other mums feel better about life.

bubblagirl I said ages ago on the other thread that if people were saying it to you then it was fine- just advised you to be careful of taking the lead and offering it to them as a source of comfort, as many people do find it irritating (as I think this thread shows). the parents on this thread have children with a wide range of dsiabilities

bubblagirl my dd does not have challenging behaiviour. she has cp and s severely disabled.
You have quoted what one person said on an american web site. and what some people you work with have said. sorry if on the main people on here don't agree with you.
It is not personal. this thread is not a personal attack on you. it is just people voicing there opions on the SN board as to how they feel about such comments.
Do we not have that right? can people who have 3 boys not complain when once again people comment on that? or people with twins/triplets....All girls?

bubblagirl my dd does not have challenging behaiviour. she has cp and s severely disabled.
You have quoted what one person said on an american web site. and what some people you work with have said. sorry if on the main people on here don't agree with you.
It is not personal. this thread is not a personal attack on you. it is just people voicing there opions on the SN board as to how they feel about such comments.
Do we not have that right? can people who have 3 boys not complain when once again people comment on that? or people with twins/triplets....All girls?

(bit of an echo in the room)

ds2 has cerebral palsy which only affects him in a physical sense, i still hate the special gift shite

lou I misread that as special git(seeing as she is being one at the moment it might be more apt)

Isn't it more that shit happens and you cope because you don't have a bloody choice?

yes mb

If anyone was stupid enough to tell me that DH's ilness was a gift from god, I'd fucking deck them.

well said mb. I remember getting emails from religious types when dd was born with her brain damage. Half were the 'special' type and half were that dd was a punishment because of my sinful ways. What sort of god cripples a child to punish the parents?
It was all one religion too.
I think the 'you're so brave, I couldn't cope' comment rankles more. Its not like we get a choice, we just have to get on with it.

I sit with the minority on this one.

Although I am an agnostic, I am a great beliver in fate and as an earlier poster said, I also feel that in some way, shape or form both myself and DH were prepared by life experiences for the way life has panned out thus far.

This doesn't mean I feel in anyway superior or 'special' compared to other parents (be that of children with SN or not).

It does however mean that I consider myself lucky (fortunate, blessed, whatever you choose to call it) to have 2 beautiful loving boys and a wonderful marriage that helps both myself and DH cope better with the up's and down's that life often throws at us.

I am not an eternal optomist and have my fair share of 'why me??' days (funnily enough, had to stop writing this reply half way through to deal with a 'poo makes great body lotion' game).

But when everyone is sleeping (eventually) and I am winding down reflecting on the day, especially if the day has been a particularly bad one, I do find some comfort in the idea that life was shaped this way for some reason, whatever that may be.

I also like the Holland poem, which again I think I am in a minority on, but when DS was born 16 days and I saw that he had Downs Syndrome, the first thing my DH said to me was 'isn't he beautiful, welcome to Holland again, I am sure we will enjoy our stay'.

That may sound a bit smarmy, but it reassured me straight away that as a family we are strong enough to support each other through whatever is needed and that its the love for our children that matters, no matter what 'country' we happen to be in.

Not sure if I have gone completely off tangent here, so I apologise in advance for my ramblings.

Oh I better add that I haven't yet read the other thread, just this one and the replies thus far.

Oddly enough I agree with you to some extent Gracie, I just don't like people saying it to me. Mainly cos I think they do it as a sop to their own conscience about the fact that they never help.
But I don't think only special people are picked to be parents of SN kids otherwise their wouldn't be thousands of them in homes cos they've been abandoned. Its all random chance.

ah now fate is a funny thing isn't it? I've always had a 'thing' about autism from the first time I saw something on TV about holding therapy when I was about 18. To the point that when I first began to suspect that ds1 might be autistic dh told me it was me a my bloody autism obsession again And of course I've often told the story of standing in the lab during the 2nd year of my PhD saying "I shouldn't have done a PhD on Scottish mice I'm not interested enough in them, I should have done a PhD in autism as that's what I'm interested in" (Moral of story: Be careful what you wish for). It was always the severe end of the spectrum that drew me in as well.

I'm not keen on Holland (like Schmolland though, and Beiruit), but I think that was a really sweet thing to say when your ds2 was born, and I would have liked it being expressed in that way. As you said its a way of saying 'all's fine' and movnig on to the important stuff of celebrating the birth of a baby.

yes yes needmorecoffe- that's it isn';t it- other people saying it always sounds to me as if they're just saying it couldn't possibly happen to them!

That sort of comment seems to be made by people who desparlty wish to help, but don't know how to help and say the thing they think will help.

We have a friend who keeps on saying, 'But your dh could be in the one in a million' and I feel like saying, 'And if you feel so sure, please swap places with him'

TIn the end they say it to help themselves, it slaves their counciences, more than they say it to help you, and that irritates IME

the 1 in a million comment always seems to suggest that you're not being positive enough as well which is irritating. I've been accused of being negative in the past when in fact I was being realistic. The person doing the accusing had not accepted the situation so complained that I was too negative.

i would like to say when i try to say nice things its not to make myself feel better i am there physically helping families with sn so feel i am doing my part in helping

i would just like to say there is not always an underlining thought to people being nice they genuinly are just trying to be nice but i do also understand why alot of people do not bother as i dont think it would matter what anyone says or does it will not make you feel any better about things so there really isn't any point anyone trying to be nice as you wouldn't except it anyway

it could have been me on this thread but i lost my dc thought i couldn't have children then had my ds who i feel truly blessed to have as i would if my other dc survived

just remember as hard as it may seem people do not try to help to make themselves feel good or to thank god it wasn't them they genuinly care about the family and even if it isn't what you want to hearf be grateful that they care enough to try better than turning there back on you but i know alot of people whio distance them selves from others because they struggle to except situations and think the world is against them people just dont know what to say to parents with sn dc but alot of people do care and do try it'll just never be good enough as its not them with the dc with sn

bubblagirl, my situation isn't quite the same as that of other people on this thread.

My Dh has terminal cancer and is going to die.

We (and the medics) are trying to postpone it for as long as possible, but it is going to happen.

People who help us, recognise this and help us to have fun along the way.

People who are unhelpful, refuse to accept that this is going to happen and sort of expect us to go along with their delusion.

But I can't live in that delusion, I have to cope with the reality. Dh and I have to prepare for the worst and live for the best.

I don't have the spare emotional reserves to deal with it for other people. And I don't need any extra irritation.

It seems to me that for many people on the SN board being told they must be 'Special' is doing the same sort of thing. As would the 'Einstein didn't talk till he was 3 so put on a happy face and hope for the best' line.

When it comes down to it, I may prefer to think that these people are doing it out of good intentions, but I'd just rather that they stop.

People don't have children with disabilities because they are 'special' any more than I have a dh who is dying at the age of 45. Shit happnes because we are unlucky.

oh the person who used to complain I was too negative used to do really irritating things like say 'he'll be fine" and "have you put his name down for yet?"

"just remember as hard as it may seem people do not try to help to make themselves feel good or to thank god it wasn't them they genuinly care about the family and even if it isn't what you want to hearf be grateful that they care enough to try better than turning there back on you"

yeh ok thanks

that would be why the only time i hear crap about being special and strong are from starngers

obviously they really care about me and my situation

i'm really grateful, thansk for making me realise

You can get caring strangers Lou. I have experienced a few of them in my time. I must have been lucky.

Re Welcome to Holland. Despite what others think about it, it used to be stuck to my fridge and it used to get me through the day. I still get strength from it even though our "Holland" is a place where we get beaten round the head, daily, by DS and he draws blood. Regardless. we've still met a lot of lovely people in Holland whom life would have been "lesser" without. I once wrote a list of them. They are not patronising do-gooders.. they are people who care and who have made a difference to us. Some of them in a professional capacity; some of them not.

I spent time feeling bitter, angry and just downright exhuasted by the 'hand fate dealt us' but being as the this is the hand, and the alternative would be not to have DS, I'd take the hand any day. And I refuse to be so bitter that I can't pass the time of say with a stranger who won't necessary have the right formula of words on the tip of their tongue, but who obviously is interested in us and DS. Give me one of those, with their slightly annoying questions any day if it means sparing me from those who DeepBreath mentioned below, who DS (the most sociable child in the world when out and about) just wants to greet cheerily and introduce himself to. I'd bet that on a weekly basis, I feel that kick in the guts that I get from DS holding out his hand to a stranger, while out in his wheelchair, and saying "Hello! Hello! I'm Alex! I'm seven!" (as he holds four fingers up!!)... and they blank him, completely blank him.

Give me a bit of irritation any day.

Hate it also. It's just a convenient way to enable other people to feel better about it happening to you and not to them and to let them wash their hands of you. Another one I hate is "oh it's hard work but it must be so rewarding", like scrubbing poo off the legs of your 6 year old in the middle of the car deck of the cross-channel ferry could possibly be rewarding (autobiographical example )