dumb question.

[winestein]

This probably sounds a little odd, probably because it is, or I am, or something.

Whatever "special need" your child(ren) has, do you start to/did you once ever avoid parents of children without special needs? Are you/were you ever afraid that if they talk about a huge problem that is, in the whole scheme of things, so minor you might actually go bang?

How and when do you learn to cope?

See, that's beautiful Devient. I no longer feel alone as you have recognised me (and 2shoes.. and no doubt all the others who will read this in the same situations; that are all different).

You seem to have found peace in being alone?

so it's been a mere two months since you had the rug pulled from under you, so to speak - it's very early days indeed for you in coming to terms with the DX, and it's understandable you feel so very raw.

Thanks TC - yes, I guess I'm about as raw as it gets. I haven't been able to face Mnet honestly until now. I don't feel like I can relate to it anymore - not in the way I used to, anyway. It's like a sea-change in some ways, but in others I need to post in childrens parties section and find out how you determine food type numbers per head at a kids party (I had to postpone my sons actual birthday party until next Saturday due to everything) but I can't actually post it as I might go bang if someone says the wrong thing (IYKWIM).

I wouldn't say I had found peace just found a way to cope. It's not ideal but the only way I can manage. Like TC says it's early days for you and will take time. I found out my son wasdowns after birth...it took me at least 7 months to come to terms with that. I found out about his heart condition first which was a worry...however when we were told about downs that became my worry and the heart 2nd. When I did come to terms with having himI planned this rosy future for him...just like any other average downs (sorry if I upset anyone there) just hit numerous obstacles and other problems along the way. You just don't know how life will progress until your travelling down the road. I know it's hard to take on board but you have to live for today and don't anticipate any if ands and buts. Hope that makes sense.

Very much Devient. Very much. I can't imagine having plans any more. DS's condition ranges from no symptoms (you might have guessed he has some) to instant death, the in between being somewhere between a pain in the neck (literally) and a life of pain/paralysis and no one can predict a prognosis. It's not even like walking a tightrope as that has 2 outcomes, so I have sort of accepted that every day is whatever it is.

I suppose I do just need time. Even that is hard though as in the time I should be getting used to all this is the operation to remove part of my sons skull. I guess it's going to take a while.

Am I ok posting here if I need to? I feel like a fake.

you are not a fake, post here and there will always be someone to hand hold.

Of course you can post here, your not a fake!!
I know what it's like to worry about losing your child...my sons heart condition can't be repaired just allieviated. His last heart op was nearly 8 hours.
Will your sons symptons be releived a bit after the op??
I hope you don't mind me asking. Don't answer if you don't want to. x

Thanks 2shoes for making that sound much better than me!!

I don't mind you asking - you haven't minded my asking, after all! The answer is, just like the prognosis, no one knows. I have spent the last 2 months researching on the internet and there is an 80% success rate, but that is in surgical terms and the resultant lives are told more honestly on the forums. And then I have to factor in that my sons condition is caused by an actual malformation of his bone structure which in itself is even rarer than the condition as a whole.

Thank you both, D and 2S. I will no doubt return.

Strangely, I was aware of the heart conditions presented by DS, Devient. My partner has quite severe congenital heart disease, and, similarly, they just alleviate. It can never be repaired, just a make do and mend job.

Well I hope the chat found you a better place. I wish you all the best for the future. No doubt we will see you back here.
Youv'e now also got me wondering about your hubbys heart!! Just wondering if they have the same!
Take care x

I live on MN and a couple of ther SN fora online. I have a few RL friends with NT DC's, but some of them are from when DD was VERY tiny (before she was dxd with anything), and the other half are friends I've made through my middle child, DS1, who doesn't have extra needs. Apart from being coeliac. But a diet change is minor in the scheme of things compared to what I have to cope with with DD & DS2. Not one of those RL friends would realise what an acheivement it was for my DD to do her laces up by herself for the first time at 11.10yo. They did on here. Makes me both and all at once....

i have justmoved and without FB andmumsnet .I would go completley nuts.
Am dreading meeting nw people and watching their mouths do that jaw drop thing when they clock ds and since he does not sit nicely in one dx box have found sn groups hard