Can we talk about MNSN, and the community/support/chat etc?

[silverfrog]

This thread may not be a good idea. I am severely sleep deprived (ds has decided yet again that sleep is for the weak, and I have had about 4 hours sleep since Sunday), and had the morning from hell getting dd2 off on a school trip - change of routine, needed ot wear tracksuit not uniform, different drop off/pick up - you all know the score. If you all think it is a bad idea, please feel free to report and have it deleted.

Anyway.

Can we have a thread where we try to sort out some of the perceived isues with MNSN?

I keep seeing, on the main boards, posts saying that MNSN is not suportive. That some faces don't fit. That it's not all it's cracked up to be.

Fine. I get that not everybody is the same, and may not want the same things form this board as me, or other posters. But it isn't really said here, and so we don't reallt get right of reply.

It's a bit like talking about us behind our backs.

I know there have ben disagreements and differences over the years. I have been part of some of them, but on the whole I thought we muddled through quite well - expcially given that we are all under a reasonable amount of stress most of the time, and that we all face fairly different challenges on a daily basis.

So - what do people want form MNSN? Is there anything we (as a community) can do to welcome people who feel left out? Anythign we can do to help posters who lurk rather than post?

I am rather hoping htis might be a moving forward discussion, rather than a re-hash of any he said/she said grievances. BUt as I said earlier, maybe this is entirely misguided. Sorry if it is.

I've looked back at some of my early posts on here....how different I was then.

The idea of a statement was raised on my 2nd thread about DD1, by Atilla, that was in October 2008. It took me until September 2009 to actually apply for one, but the seed had been planted then.

Am definitely guilty of recycling other people's advice and mottos (imitation is the sincerest form of flattery )and I've never been any good at remembering where I learned something.

My brain is fudge tonight, to the poster above who pointed out how scary 'get a statement and apply for DLA' can be [thank you] for the reminder that sometimes (often?) it might be too blunt, too much and too soon. Cos that's pretty much my standard response , on the basis that whatever the SN situation, good education and more resources will always help a bit.

Lougle, I'm sorry you're a bit deflated. If an OP finds my post unhelpful i try to remember that mine is balanced by others, and hopefully the whole is more helpful than the sum of the parts. Also that in a searchable archive, one day a random lurker might find it handy.

I know that Maryz, I do know Rivens circumstances and she is having a really tough time still.

I'm at a loss to see what can change. Every poster has to take some responsibility for themselves.

If you want support on a long running issue, then don't name-change and say 'name-changed to protect my annonymity but you all know who I am...' well, no, we don't all know who you are, because you name-changed.

If you want to have a whinge but are too exhausted to take action, don't write 'what can I do' or 'I don't know what to do' or something else that implies that you want to do something. Just say 'I feel crap' or 'I'm so stressed by x' or something else that gives the clue that you want a moan, not a solution.

If you want advice and practical help, don't say 'I've got this massive problem but I'm not willing to tell you what it is because it's too private.'

I'm not setting rules, by the way! I'm merely saying that what you say in your OP will dictate the responses you get.

Yes, agree with that, Maryz. Though I do find the 'early days' are those most firmly imprinted in my psyche. Even though I'm 10 years past DX, the fear at that time is still very fresh. Despite being out of date a bit with advice, I can still empathise.

and now I feel I can't do right or say right for wrong which is another problem here, so now I will step back in fear of doing it wrong

It was nice to see someone remember friends and have a tiny reminicent (sp) moment.

Oops, was agreeing with the '2 years ahead bit.' Will catch up on later posts.

Maryz, my favourite quote that shows how naive I was:

"I think that they are thinking along the behavioural/emotional development lines rather than intellectual, as they feel she needs 1:1 during the free-play element of the session rather than the directed time."

Mmmm yes, that would by why at 7.3, she can read 21 words by sight, can only write 3 words, has no sense of danger, etc, etc

I think it is important to acknowledge when acusing of cliquage, that posters who keep their name in a post in the hope that being known to some will get support can sometimes mean they take a big risk in doing so.

Mary's, my posts were used against me in the run up to tribunal. I knew I was being 'watched' but needed to post in my usual name as my back story was relevant.

I'm not fussed who knows who I am on here either. Having said that, I self-censor anything which I wouldn't want someone to know I've said. So, for instance, I never share any knowledge I gain as a Governor of DD1's school. I very rarely post about family issues, because I wouldn't want my wider family to find out I'd been talking about them.

I couldn't care two shiny hoots if DD2's old HT sees my posts, so I was quite comfortable posting about that

Oh for crying out loud

tbh Maryz I don't have any friends, they all dumped me over the years due to not being able to handle DS. I do chat on the phone but I mostly listen to their problems. Which is maybe why it's easier to walk away. I knwo it sounds sad having no friends but it's reality, I am that isolated, made even further so due to DS, I'm sorry.