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 saw a few threads a while back that I thought had a cliquey air, if I'm honest. I hadn't been on for a while, though like others have been posting for 8 years. Maryz made good points about giving newbies time to let their feelings out. It is easy for older hands like me to forget the shock and awe of initial diagnosis time. Things seem to be better now, pleased though that SF started this thread

ok, i'll stick my head up above the parapet, but please hear me out

i sometimes feel really reluctant to answer a thread or ask questions because often i read answers that mean nothing to me. I don't mean they have no interest, I mean I don't have a clue what is being suggested

being the parent of a child with SEN/SN is exhausting (yes, i know it gets to everyone, but this is MY say)

i don't think i've got the brain power to cope with all of the procedures and hoops we have to jump through, and then when i come on thread and the very 1st reply is eg 'apply for DLA/statement, don't do this, do that' it's baffling even more. sometimes, while that is the most obvious response to people who know, I find myself recoiling in fear.

that isn't to say i've not had some fantastic support when i've needed it, when i've been at some very low points, but i think it's easy to forget that even the thickest skins can have soft underbellies.

i know it's not up to other users to hold my hand or treat me with kid gloves etc, but i thought i'd throw my twopennorth in.

It's all perspective, isn't it?

Someone new comes along, absolutely blind-sided by their recent awareness of their child being 'different.' Often, they have been approached by school who start talking about CAFs, SA, SA+, IEPs.....nobody stopping to draw breath.

To those people, the posters who say 'well CAF is....., SA is...., you need to do x...' are fonts of all knowledge.

To those people who are posting the advice, it is straightforward 'SEN ABC'.

For me, quoting passages from the SEN CoP is second nature. I know it inside out, I have it in PDF, I can just copy and paste.

Then, people come along who have more complicated issues with deeper back stories, who need more specific advice which is tricky when you don't know the details...

I can see how those posters may feel ignored, criticised and marginalised, because to be of any real use, you have to ask questions to get to the bottom of the issue, then there aren't any quick or easy answers.

What an uncanny cross-post with EstherRancid.

I'm sorry that you've not had the advice you wanted, Esther. What advice did you want? Would you have preferred more answers that reflected on the experiences of being in that situation, rather than practical answers?

lougle not all posters want an answer that is of 'real use' though, sometimes just a friendly ear and a shared experience is enough

yet another uncanny x-post there

I think we all sometimes have to remember that everyone has their moments of sheer genius and those "oops" shouldn't have said that. Especially as many of us may be posting when stress, sleep deprived or feeling a teeny bit battered ourselves.

Sometimes when in a dark place ourselves perhaps we post when we shouldn't. Hopefully we are all mindful enough about others potential experiences to cut each other a bit of slack occasionally when boo boos occur.

I take great note of the forum diplomats as I totally lack this skill myself, especially in written format. (have now trotted off to many a meeting with MNSNers advice on tact firmly tucked in my back pocket!) Sometimes it really is better for me to say nothing at all than risk upsetting someone who I feel may be feeling vulnerable. Or it may be I just haven't a clue what to suggest. It doesn't mean I don't care.

I witness enough of the NT Mums cliques at the school gate, & really don't think this forum has any of that thank goodness (Though a few people may share a special interest in one topic at times, those favoured topics too seem to vary often)

One of the many good things about asking questions here is that no one patronises you for not knowing though, there are no ' FFS' responses, even if some posters have responded to the same simplistic questions for years.
I love the way that someone can ask 'Is sensitivity to noise possibly linked?' or 'He doesn't like his food touching on the plate...' and suddenly there are a number of posters saying 'Yes, welcome. have you tried...' and it's all helpful and positive and not weird or 'You are pandering to him, you must BREAK HIM!'
There is a lot of space and tolerance for a wide range of questions and levels of need.
In years past, I kept hoping that the Feminist boards would take a leaf from our COP here, but sadly not.

I have only posted a couple of times and people have been very supportive. Been lurking quite a lot latery - I talk about this stuff to some close friends but some things are easier to share with total strangers. Our issues are dyslexia rather than ASD so I feel a bit in the minority, especially as I really don't believe in specialist diets. It doesn't feel offputting, the only place I'm scared of is Am I Being Unreasonable. Although I will read if in need of an adrenaline boost. :-)

I do think that if people want to simply offload, it would be useful if that was somehow communicated.

'Please help, I don't know what to do about x.', for example, will lead me posters to tell someone what to do about x.

'I'm frustrated about x, just need a moan.' might lead to poltergoose posters offering freshly made chocolate cake.

i'm talking about (now this is entirely hypothetical) coming on thread after a really shitty meeting with senco, and the 1st thing that's said is 'statement! or 'duty of care section xyz'

if you're vulnerable and feeling very tender, this is extremely scary

that's unfair lougle, if it was similar i didn't mean it to be the same - of course there are similarities - this is the SN board, this is the sort of thing that is asked

I'm not sure what to say really.

I have been here for around 4 years now, I think. First as a lurker, then total newbie with a tonne of questions and gradually moving on from there to ... well, I don't really know what I am now.

I think it's the nature of an online forum to change, as posters come and go and things like the political and economic climate impact on our lives. I suppose I just see that as inevitable and not exclusive to this board.

I do think the board is still quite ASD heavy, but I am also aware that there are links to MNSN on various ASD related websites and the local ASD related charities in my area also recommend it, so maybe people are kind of funnelled (sp?) here through those kind of links. Also, if you google almost anything with the letters ASD in it, you will usually find a link to a MNSN thread fairly high in your search results, so, if you are actively searching for ASD related support, your search is highly likely to lead you here.

I go through phases with regard to my activities on the board. Sometimes I need support, sometimes things are going ok for us and I have the time and headspace to support others. Sometimes I have just had enough of everything and at those times, often read threads and even start drafting a response, only to feel I have nothing useful to add and not enough energy to come up with anything new or interesting. Finally, just like some other posters on here, I am dealing with my own health problems, as well as all the SN stuff and sometimes I am just not well enough to be of any use to anyone, so I disappear for a few days.

I have personally always found the board to be a welcoming, supportive place and I try to give back the support that I have received, within the parameters of my both my knowledge and my capabilities (dependent on current rl happenings and my health).

I am often confused when people get upset and indicate they feel marginalised and/or not wanted, but on those occasions, I usually assume I have missed something. I honestly believe that we are all here with the best of intentions and none of us wants anyone to feel unsupported or not wanted.

So, as usual, lots of word from me, but nothing new to add.

So do we need a special icon or something?
A flag that can be waved to let people know that although we might want advice and erudite ripostes to SENCOs and S&L and LEA at some point, at the moment what we want is a hug and chocolate and a rant.
I'm not waving for assistance and advice, I'm drowning?

maybe maryz's had it right, section the boards up?

I don't think you were being shouted down, Esther. Just that unless the OP is clear about what they want, what they will tend to get is advice based on years of fighting the system and posters wanting to offer practical help rather than tissues.
Hard to know what to do really.

One ASD site I used to frequent had a stickied thread just called AAARRRGGG!
Specifically for ranting and sympathy.

I think on the whole, we do a bit of both, TNB. I think we all need to remember that we are all here because we want to be, too, though. It takes time and effort to respond meaningfully to posts on SN.

The problem with online chat rooms is that you can't convey tone with the written word, like you can with the spoken.

Writing tactfully is hard!

Look at these two sentences which say the same thing but in different words (I know I sound lecturey, but the written word was my career):

1. Look up section 9 of the Sencop and tell them you want a new IeP pronto

1. I found one section of the Sencop really useful, would it be an idea to read up on it and then use the wording to suggest a revision of the IeP?

It is the same thing, but with some cushioning tactful words. I know not easy when we are all posting in a rush

Also think the icon for "need sympathy, not advice" is good

Can I just say, - for the record, that I have been absolutely SLATED at times on SNMN.

Sometimes it was a misunderstanding.
Sometimes it was deserved.
Sometimes it was deserved on the basis of my post but not on the basis of my intentions.
Sometimes it was deserved on the basis of my post but not on the level of my fragility at the time.
Sometimes it just wasn't deserved.

Usually, when I get a slating, it is the regular posters that slate me (and I guess I consider myself a regular poster too), rather than the new ones. It's bloody horrible, especially when it is by someone that you really respect.

But, I don't think they shouldn't have said what they said, even if I still disagree, even it it really is not deserved. I have come on a considerable journey and if I'm honest, it is the slatings that have helped the most, given me practise for real life and challenged my arguments before it REALLY mattered.

That, for me, has been one of the strongest things about this board.

yes sick

i was trying to explain why and how I felt using the boards sometimes, and that illustrates it very well

I wonder if practical advice rather than a hug and some chocolate is offered because, unless you know the OP well, you are concerned about coming across as patronising.

TNB, I like the idea of a stickied AAARRGGG! thread.

I should have said in my other post as well, that I really like to read posts from people with older and adult dcs because it helps remind me that there is more to ds's SNs and our life than the here and now, it's a long road we have to travel and there will be both good and bad times ahead. Sometimes it feels like the current 'phase' is all there is, iyswim and I need to be reminded that I have to think about more than just the here and now.

Also, just because we're not there yet with our own dcs, doesn't necessarily mean that we won't be able to brainstorm some ideas/solutions or even perhaps offer advice based on other relevant life experiences. Not sure I explained that last bit very well, but I hope you know that it basically means that I feel we all have something to offer each other and appreciate the input of posters at whatever stage of life or the SN path they are on.

Star i've not witnessed that really, where regulars have rounded on you, but it's that behaviour that can be seen as cliquey too. they 'know' you and you have taken it on the chin, and learnt by it.
a newer poster could read that a run for the hills

i'm not saying it is, just trying to play devils advocate and generate discussion