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.

Maryz, that might be a good idea, however if I remember correctly, the reason that some posters didn't want such a section, thread, subsection, etc., within SN was that they didn't want the rest of 'us' who didn't have direct experience being able to read, or comment on, those threads.

In a forum, you can't exercise that level of control over posting activity.

Unfortunately, that meant that those posters who expressed those views felt that there was no 'home' for people like them.

I'm not sure the 'location' will change that.

Great heavens! Take a couple of days off and you'll miss a couple of posts, eh?

My perspective:
Harking back to 'the good old days' is daft. We have the posters we have, here and now. It's an internet forum, it has to be fluid.

It is very 'ASD heavy' however I think it's important to realise why that is - it is one of the best sources of information I have found anywhere about ASD-type things. So when people google stuff they end up here, and they tend to stay here, so like attracts like. I have tried recently to pop up in threads on other issues but as it's not my area of knowledge I tend to feel a bit useless.

I do think it's important to recognise posters' fragility, esp at the beginning of the process. However, it's also important to respect the body of knowledge. When we have a poster saying 'hmm, the doctor has said wait and see, I'm sure it will be fine that ds is doing x, y and z' surely as someone who has been through that process you feel you have to say, 'well yes, or it may not be fine and meanwhile here's some things you can do?' Treat your child as if you already had a dx is the single biggest gift someone could have given me at the start of his dx process. We wouldn't have wasted 2 years then . I personally will pass that gift on to everyone I 'meet' - if they choose not to accept it that's fine, but I will try to give it.

I would like to hear more from parents of older children too, because I think there's lots we can learn and they need their hands held too.

But essentially, for me, this is a forum on the internet. Incredibly useful, yes, but I just don't get the navel-gazing, maybe that's just me though?

Long-standing nc?d poster here (Wet for those who may remember).

I don?t post on here very often now. Neither do my pals Vic and Goblin.

I notice more posts these days that receive no answer at all. When I used to post on here regularly I always made a point of answering any unanswered posts ? even if it was just to bump them.

On any forum there will always be the dissatisfied and the flouncers. MN SN has always suffered from this. A few years ago it was usually the usual suspects and often as a result of an argument that had kicked of elsewhere (Facebook). I used to read the thread and think ? FFS, get a life!

We will always have flouncers and TBH I just ignore them because they are usually just venting and will be back within a few weeks anyway.

It does rile me when folk start bitching about little support they have received. Some poster?s expectations are way too high! People have to realise that we?re a group of mothers with DCs who have SNs who are volunteering to answer posts ? we?re not IPSEA, we?re not Ofsted, we can?t predict the future, we can?t make everything better with the wave of a wand, we can?t issue Statements and we can?t give much practical support over the Ethernet. Posters who are disappointed are usually those with strong emotional needs which his forum cannot support. Those who need tactical / strategic advice usually go away satisfied.

At least we?ve stopped invading every post in every non-SN forum. That used to make me very angry and no doubt made us very unpopular. I resented the way that some people had to put the SN slant on every single post ?upstairs?. Yes, the SN slant is needed but not in terms of Monty Python?s 2 Yorkshiremen! And once they?d been lynched by the terminally thick ?upstaurs? they?d come back down here to complain that the big boys were rough and that they felt like flouncing over it. FFS! Learn! Stop engaging with morons.

I don?t like Holland and I don?t like honking. Honking is something that could make a new poster feel very excluded ? better to save honking and caring carrots for the Friday night thread. I like to hear the positive endings ? the Statements that have now been issued, the Tribunals that have been won.

One reason I don?t often visit the SN board is bloody PDA!. It?s PDA this, PDA that. Example: OP query ? are these behaviours indicative of ASD? Answer ? Have you considered PDA? Why the fuck bring PDA into it. In my opinion, it?s a dx that until recently was limited to a small geographical area where one particular paed identified this possibility (I can?t bring myself to call it a condition), it?s not in the DSM IV or ICD and it?s validity was even questioned by the NAS in the dim and distant. After years of being around young people with Aspergers I can tell you that a lot of their behaviour is demand avoiding too! But new posters read about PDA and then get very disappointed that their local professionals have never heard of the bloody thing!

I?m looking forward to the change in SN law for no other reason that that?s when I shall stop posting on here, as my knowledge will be out of date then. Until then I still feel obliged to answer the poor sod that everyone else has ignored all day.

Have probably upset a few folk but that?s my honest feelings.

Maryz, OTBT was given to combat the fact that MN is searchable, IIRC. So those threads don't show up on google, but you can see them freely from within MN. The posters I refer to had issue (paraphrasing) with people who did not have late teens/young adults with SN viewing and commenting on their threads, including those of us with younger children with SN.

PlentyofFreeTime - welcome back. I think PDA is being more widely recognised across the country . I know what you mean though, because I started a thread last week asking 'why the shift'.

Wessex Autistic Society's conference is on PDA this year, 16th May

'I don?t post on here very often now. Neither do my pals Vic and Goblin.'

Ahem. I still have my bucket, I seem to remember you prefer red?

But new posters read about PDA and then get very disappointed that their local professionals have never heard of the bloody thing!

Many, many HCPs in Scotland haven't heard of ABA (or pretend they haven't). When I first looked into it I found that it had only been funded once in the entire country. Once! But I heard about it here, looked into it here, found a consultant here and went ahead with it. Using the argument that HCPs haven't heard of things - I dunno. I just know DS wouldn't have made as much progress without something that the HCPs hadn't heard of.

Interesting 2003 article regarding PDA and it's (asserted) need for recognition as a defined condition

Well, whatever else, it is very nice to see some old posters here.

Wet I have often wondered where you were - you along with two others in particular, were more help to me than you will ever know a couple of years ago with statementing crap.

One of the best things about this board for me is having the insight, experience and wisdom of folks with dc older than mine. It is obv me being selfish but I look out for and lurk on threads of this kind even if I don't post. Someone said earlier they were hesitant about posting as they didn't want to 'scare' people with visions of the future, but god, that's one of the most useful things for me.

Amber are you the same Amber of yesteryear (prev Amber2000)?? If so, are you ok? And if not, sorry!

And finally: wot everyone else said.

It didn't achieve the goal though - it's still not in the ICD or DSM.

Also interesting to note that 6 of the 10 references used to support the paper are by E Newson - the author of the paper.

DS (Aspie) spends half his life avoiding demands but I would never accept a diagnosis of PDA which, in my opinion, sends out allthe wrong messages about the child - even the name is vile.

bialy No, Ive always been me!

I know there is/was an Amberlight around here, Im not her either!

Late in the day but I will add my twopence worth. I found this board almost by accident about 18mths ago. I was feeling very isolated by the combination of Ds's SNs and my own health issues. It was fantastic to find somewhere where my experiences were the norm not weird.

Ds's combination of problems is a bit unusual and he at 16 is older than most. I have however found help with some practical problems and lots of support and handholding.
I am a bit wary of posting on threads by those with younger children or at the beginning of the process. Ds was not diagnosed with ASD until he was 10 and though we went through the statementing, DLA applying, almost going to tribunal stuff it was more luck than judgement that it all worked in the end. I have found it helpful reading about younger children because it helps me understand why Ds did what he did when he was younger. I hesitate to say that Ds used to do that but doesn't anymore or has improved because I know that isn't true for everyone and I don't want it to come across as
'its just a phase, he'll grow out of it' because I know people get enough of that in real life.

There are only a few posters here who have experience of full blown OCD which is where Ds's major problems lie so I don't really ask for advice about it here now. I have good professional help on that front anyway. I know I could go to an OCD specific forum but then they would probably not get the ASD and anyway I feel comfortable here.

I think the board is for each poster what they make of it. Some people use it for specific queries and it feels to me that those are answered when other posters have the specific knowledge.

Others use it more frequently for support and advice. Obviously those using it most often get to know each other and so they engage in chat, banter and use weird code words. That can feel quite alienating for new posters (I know I thought What!!! when I first read the Friday night threads. However if any one introduces themselves as new they are always welcomed. If they stick around they become one of the regulars and before they know it are engaging in the banter too.

If you are feeling fragile or exhausted you don't need to post on or even read threads you find difficult. If you are feeling like that and want support, you only need to say so and other posters will be kind.

Oops sorry Hello anyway

Does anyone know what's happened to Amberlight though? Haven't seen her for a while, and thinking about her, she was going through some 'stuff' wasn't she.

TNB are you Goblin?

I am just going to start my own spreadsheet aren't I.

Yup, from long ago and far away.
I think this is my 7th incarnation, along the lines of Dr Who.