CHANNEL .....4................TONIGHT......9.00........................BORN TO BE DIFFERENT.....

[RTKangaMummy]

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................ 9.00...........

...............PLEASE DO NOT MISS

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sorry just read back my post I meant the other children on prog

I have no idea what ds1's IQ is because he's untestable. So I don't know whether to be worried or reassured by BH's post. God only knows how we'd get medication into him.

I know a few people now with children who aren't expected to live to adulthood (there are a few at ds1's school). It's strange when the parents talk about it because they're so matter of fact. I suppose they've always lived with it. I do find going into ds1's school gives me a kick up the backside. Luckily I go regularly as I need lots of kicks!

I expect this will stir up a few comments. Part of our problem is that DS's life expectancy is not limited but OURS is Not that I want him to die, and I have a good friend whose teenage son died of cancer which gives me a kick up the arse, but we're not talking about whether he needs care for the rest of his life, but that our lives aren't going to last that long to give the care.

exactly so stop smoking your cancer sticks in the kitchen you old slapper

I was trying to be reassuring jimjams

Agree Davros. That terrifies me more than anything. One matter of fact thing that someone with a child not expected to live has said to me was that at least they didn't have to worry about adult services. It freaked me out that they could say it matter of factly - and almost as an advantage, but I couldn't disagree.

Something that I have only just realised recently is that if ds1 goes into care then we have little say over anything. Like they're going to keep him gluten free- I think not. So he'll be a headbanging crazy out of it. Or we keep him at home, spend the rest of our lives as carers and he's left completely at sea when we die.

My dd has a severely reduced life expectancy. And I'm sure this will stir up a few comments too.... but although on the one hand it makes me incredibly sad, on the other I do think 'at least I probably will outlive her and won't have to worry about what happens to her when I am gone'. So I understand where you are coming from Davros.

It is something you have to be matter of fact about Jimjams. Especially I think when you don't know when it will happen. All the medical literature for dd's condition suggests she will be incredibly lucky to live to be 10. Our neurologist wouldn't commit but said she expects to see dd as a young adult. So in my head I suppose I think she may live to be about 20 if we are lucky.

But the reality is it could happen any day. All it would take is one massive seizure. So yes, I live with that. But it doesn't affect me day to day because I can't let it.

I just felt bad agreeing with them hitc. but yes you're right.

sorry, that wasn't meant to be any comment on what you said about what your friend had said as I was writing when you posted and hadn't seen it. Just agreeing that you have to be matter of fact.

Its interesting, which is worse? The child you can have a relationship with (iyswim) but who won't live long or the child you can't but is healthy? The answer of course is neither, they're different and I suspect that many parents of one would swap to the other....
Wish I did bloody smoke! Smoke would take up room I need for drink

that is so true, my mum still thinks she was worse off having a daughter with chronic CF than her friend who has a daughter with retts......

weird isnt it?

i suppose it s a grass is always greener sort of situation

true true. DH keeps begging me to let him start smoking again

otr the grass is always worth smoking sort of situation

fio your grass is always greener comment could lead my weird sense of humour I have developed a la beirut style to say something inappropriate so I won't. Reality is all these conditions are pretty hideous aren't they?

PMSL fio

ha ha ha now I'm laughing....

Course you're not intruding Christie. I've read your posts in the past about teaching children with SN and they've always been interesting and sensitive. DO come here MORE!

Not intruding at all Christie . I too have always enjoyed your posts and your insight.

gosh snap- I love reading your posts as they're always really warm- and it reminds me of the teachers at ds1's school. PLease don't feel you're intruding- you're not at all. The fact I'm worrying about adult services more now should remind me its because school is sorted until 19