Here some suggested organisations that offer expert advice on SN.
ZOMBIE THREAD ALERT: This thread hasn't been posted on for a while.
Can we talk about MNSN, and the community/support/ch
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.
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'm a bit at a loss, to be honest, to understand it myself. I know there have been 'kick-offs' over the years. I've been posting here on this section 4½ years, 7 years on MN as a whole.
My perception is that MNSN is a place where people can come and get what they need at the time. If they lurk, all well and good - they get the information from other threads, but don't get something specific to their situation. If they post directly, they get the information or support they need.
Personally, I get far more out of helping other people with snippets of information or resources, than having people answering my threads, but that's probably because DD1 is fairly stable right now, at a fab school. I have been hugely grateful for the support I was shown when DD2's hideous time kicked off.
This thread may be a good thing, if people can post sincerely and as fairly as possible.
I'm with lougle, almost word for word.
Sometimes, when things kick off, I do end up thinking "how the hell did that happen"?
But then it's easy to see how it does happen, because of the fact that some people are constantily running into brick walls irl and so emotionally and psychologically worn down by their own situations and just plain frustrated that they do become extremely sensitive.
And for those people, it's probably no comfort that we can listen (or read) and nod and try to empathise, but can't offer any concrete advice guaranteed to make it all better.
Hi silver, I have used MNSN for 2 years now (I have name changed because I felt I had been outed in RL) to begin with I felt understood, like I could say what was on my mind, that nobody would judge like in RL, somewhere that I could find answers or guidance when I had hit a brick wall, like I had found somewhere where I belonged with like minded people.
But over the past few months I have seen a change, it seems that anybody who appears with a new name is instantly a troll. If someone states something which, in there mind, gives them peace and makes them feel like more than a complete loser both towards themselves and their Dc they are instantly shot down with a sarcastic remark which then takes the poster back to square one.
I would very much like to see the old MNSN back, I thought it was such a wonderful place, and in a sad way I couldn't wait to come on here to help me find some kind of escapism from RL.
'But then it's easy to see how it does happen, because of the fact that some people are constantily running into brick walls irl and so emotionally and psychologically worn down by their own situations and just plain frustrated that they do become extremely sensitive.'
^ ^ ^
When RL is very hard for a long time, and you are getting very little support, sometimes it changes how you see everything you encounter, so that small disagreements over an approach or a response can hurt so much more than if you are reading when happy and positive.
I think MNSN is a supportive place, and I've been here for years under one name or another, partly because people contribute when they have something constructive or useful to offer. You don't have to wade through piles of sickly marshmallow to find the core, if people don't know how to help in a practical sense they don't waffle.
But if someone is feeling isolated, they may perceive it as being ignored, which isn't what is actually happening.
"But over the past few months I have seen a change, it seems that anybody who appears with a new name is instantly a troll. If someone states something which, in there mind, gives them peace and makes them feel like more than a complete loser both towards themselves and their Dc they are instantly shot down with a sarcastic remark which then takes the poster back to square one."
Grinnbearit sorry you feel that way. I think it is fair to say that we have had our share of trolls. We've also had posters who have found that professionals involved in their case have used their posts on here against them. Perhaps that makes them wary.
I think I am guilty of feeling that this should be a 'community' when for other people it is simply a resource they can use when they need it. I find that a sad thing, but some people just don't have the energy to help other people, I guess.
As a reader and not a contributor I would say it is just the nature of belonging to the SN club, that just because we all have a family member who has any SN, it doesn't mean we are similar people
Being a lot further into the SN world (as my children are adults) I would say that acceptance of your lot takes some people a much longer time to reach. And our world is a naturally isolating one. Some reach out to find others in similar situations and learn from them, others stay isolated and never come to terms with their life with a child with SN and all that entails.
I will say though, that sometimes on here there seems to be a divide between physical and intellectual disabilities and some people do come across as being bitter. Which is acceptable but can rub people up the wrong way. I have also seen competitive posters - my child is worse than yours type thing
I belong to another community where level of disability or presentation of disability never comes into discussion - we all have a child with additional needs and all deal with similar issues and we always celebrate EVERY inchstone a child makes.
MNSN has many, many people and it will never please everyone - some people can never see joy in their lives and never will. There will also be people that don't fit the style of MN. I'm not sure anything can be done. It is a good resource though
I'm guilty of that Lougle, when things are going well I tend to drift away from the board, and when DS 'flares up' I tend to come back - but sometimes just as a lurker. I guess it doesn't help build the sense of a community if I do that but other stuff seems to distract me when things are going comparatively well, I'm afraid.
I am also guilty of fairly random name changes so probably seem like a new poster, but I have been around since about 2006 - but in fits and starts.
OhYeaBaby - that doesn't mean you are wrong, though it means that MNSN is working for you. It's here when you need it. I lurk on lots of the sections, where actually I have no connection at all, but find the reading interesting.
I have just checked when I started posting here - it was over 7 years ago, and I had lurked for a good while by then . it was different then, but then virtually every chatboard on the internet was different then - changes happen over time, always.
I don't post as much as I used to these days - dd1 too is stable and progressing well. I have posted with you about our dd2's, lougle, and like you have been well suppported.
ouryve -I completely agree. I wonder whether a 'support indicator' (sort of like a facebook 'like' button, but more a manly-MNSN-hug-and-pat-on-the-back button would be any good? This section does work quite differently from other sections, in that we do tend to 'know' a lot more about each other than main board posters (as a community, I mean, not any particular friendship/group), and so a button like that in this section might work? It could be for a 'blimey, I don't know what to say, but you are not alone' situation. maybe?
grin - I can't keep up with the name changes. <old gimmer> I find it quite hard to support sometimes, if I don't 'recognise' a poster - ie if I know a poster is not new, and yet I don't know 'who' they are - it feels hard to guage what support to give/how to give it. I hate being in a grandmother-sucking-eggs situation, and so I maybe do shy away from posting on new-name threads.
Nebulous - agree. I have posted threads before, in total despair, which have not been answered as well as I would have liked. and have wandered off muttering to myself that now, really nobody cares, not even the internet sprites. it does feel horrid. and then, when I come out the other side of that particular low-spot, I realise that actually, maybe other poster were also having ahard time. that not many threads at all were answered at that point, not jsut my thread. and so on. but it is easy to feel isolated, especially when it is a regualr feature of many of our Rlives.
For me, I find that MNSN is not as innovative as it used ot be. It can be hard ot post about a new intervention/diet advise/vitamin regime without a lot of disclaimers and rigorous 'but where is the proof?' posts. that's not better, or worse, just different. 7 years ago, there were a lot of threads on what was new and interesting relating in particular to dietary interventions. I find most of my info on that elsewhere now, as it doesn't feel right to discuss it here.
oh, x-posts with lots of posters and now it look like I'm ignoring! will have another read in a sec - ds needs me.
I find the site very helpful, and empowering. I don't have any issues with how it is, nor do I think "it was better in the old days". I do sometimes find disagreements on line upsetting, but I think that's normal in any relationship.
I don like sn top trumps, or "I don't feel welcomed here" talk, but I get so much more out of it that really that stuff is a small price to pay.
I do sometimes wonder if there is any point in my posting here, DS is adult now, and HF Aspie. Our lives have had some challenges in them, but nothing like what the majority on MNSN have to put up with. It's one of the reasons that Vicarinatutu and I became friends before we came here, our children had similar issues and were similar in age.
I feel a bit of a fraud on here sometimes.
NEbulous - don't feel a fraud. You have a lot of experience, and some really good insights <don't want to be patronising>
MsCellophane - yes, we can't please eveybody, all of the time. But I don't like it when some people are feelign very obviously left out, and wondered whether there was anything that could be done to help with that.
I think sometimes it can feel hard when you post and don't get as many responses as you might think you would.
I think there are lots of people who 'know' each other here and naturally they get more responses than others. But when you are one of the 'others' it can be quite hard.
I read a lot and do try and offer support when I can, but I don't think I've felt particularly supported. Not unsupported, but not supported. does that make sense?
I have found this on Mumsnet as a whole though.
Inevitably people who are well known and come across well with the written word get support and interest from others. Maybe that's it. Interest. I don't feel people are terribly interested in me.
But then I don't think I write very well and I think this is part of it.
TheNebulousBoojum that's really interesting, because one of the weaknesses, I feel, of this board is that people post when their child is just being 'flagged', post about the struggles of recognition/provision, etc., then there is a big black hole where the future lies.
I (and I know others) am always wondering what the future holds and actually having posters who can say 'DS was like this at 4 also, but now, at 16/17/18 it really isn't an issue and this is how we got there.' would be so encouraging
With DD1 I am torn between moments when I think 'ahh she's not all that affected really, what's she even doing in Special School', then the crushing realisation that actually, no, normal 7 year olds are not like this...
With DD2 I feel like I'm at the top of a roller coaster ride, knowing that the descent will come, but too far up to do anything about it.
I agree about the 'competitive SN' angle, too...it's hard which ever way you slice it.
I think one of the things that Vic and I wanted to be able to say is that sometimes there is light at the end of the endless tunnel, and it isn't always an oncoming train.
But that can come across as smug or know-it-all if someone isn't at that stage and never thinks they will be.
I've read a lot of your posts over the years silverfrog, they weren't of direct help to me and DS, but the areas you discussed were eye-opening and fascinating.
I enjoyed IndigoBell's posts for similar reasons.
It's hard enough to be a parent of a child with additional needs without biting chunks off other parents, and I've never felt unwelcome or irrelevant here.
Ds was late dx and highly explosive. People who knew how to deal with children on the spectrum found their assumptions smashed to smithereens along with many other items.
But ten years later, you'd never think it.
This board has been a life saver for me and I have welcomed the help and support I have received. I really don't know what I'd do without you guys.
It's just all those daily little problems that arise when you support a child with SEN that no one else understands. The time and care posters take to explain things and advise astounds me.
I would say two things:
1. People do go through very stressful times so we can all take offence/give offence without meaning too. I don't see anyone deliberately trying to hurt anyone else
2. There have been a few threads over the last few months from a small group of the same posters which have ended up being deleted by MNHQ. These posters have an agenda but will say they are being treated badly or not welcomed into the MNSN community as new posters. I have also seen posts from posters who are clearly SEN professionals. This, and the experience of some posters with being stalked on these boards, does lead to some suspicion and questioning of those new posters. But I have only ever seen this with those who appear to have an agenda or who are aggressively promoting views. This might not be right but I understand why it happens and I have only seen questioning not rudeness.
I have never seen new posters treated abruptly in any other circumstances.
I would add that I would like to post more and often see threads where I could add thoughts but I barely have time to eat at the moment (save for chocolate ) and I am sure that is the same for others.
I suppose with limited time, those who 'know' of each other look out for each other as we follow the stories of each other's lives. But I don't think it's meant to be cliquey.
This has made me think more about responding to more threads!!!
It doesn't bother me at all if I am ignored, at the end of the day if nobody has anything constructive to say I would rather this . I will always think to myself ok there's a lack of trust there (the world doesn't revolve around me, having an off day etc etc) but maybe after a few posts I will gain it, but with some I don't think I ever will, can't say I will lose sleep over it though.
Silverfrog did you name change from Dolfrog or something similar?? if so you helped me mannnnnyyy moons ago...TAPS-3......thank you
I see that it can be a PITA when someone name changes, and not knowing the background of the Dc, or difficulties can make it hard but in my defense if I was to go filling in what wasn't known my handful of name changes would be completely pointless, thanks to my wonderful stalkers. In some ways for me my name changes have also been different chapters (for want of better words) one name was the angry with everything (school) me, another the useless me, another was the realizing me. This one is the I finally get it I have Aspergers too me, and hopefully I will stay with this name to stop causing confusion.
I am relatively new here, have posted a few time asking for advice, and a few times just downhearted about things writing to get them off my chest, and have generally had some kind of of response that was supportive, understanding and/or practically helpful to the specific situation.
I have been welcomed, and seeothers being welcomed too.
Thank you all for being here and and for being so open to share experience, being honest about how things are (good or bad), what you tried, what worked and what didn't, and giving positive vibes for the future.
I dont know what it was like years ago, maybe it has changed along with the people that use it, but for me this forum has been amazing in providing information , anecdotes, lightening the mood, sharing successes, and a general feeling that you have your hand being held when you need it.
I am probably more of a lurker than a regular poster, although I do use the SN boards often. I have missed lots of the recent threads where there has been criticism of the MNSN boards, if I had seen them I would have jumped in. DS2 has ASD, and these boards and posters have been a lifeline to me during the past 2.5 yrs since issues were first raised. I dont think we would be getting half the support we do get if it hadnt been for posters on SN encouraging me to apply for a statement etc. I have never had anything but support from the MNSN boards, so sorry I dont know how posters could be made more welcome. My experience has always been good and welcoming, and I have always had positive support, for which I am very grateful.
I have been posting here for the last 2 years, and I am often surprised when I see posters taking about not being welcome on the board, or having a bad experience here, because I have never seen this, and for me at least, it has been one of the most important places for me over the last couple of years.
But I can understand that life can be very isolating and relentless, and if you feel you don't 'fit' it would be pretty crushing.
I have noticed that there is often a tendency to see more threads about children with ASD, and so that can sometimes influence people's responses. But that doesn't bother me, because I think that a lot of us have shared experiences, whether you are at the beginning of the journey, have been here for years, we still all come up against that same feeling of having to be our children's advocate and feeling like square pegs in round holes.
There are 2 ways that mnsn has been so good for me, one of them is advice, wrt to the practicalities of dla, who to ask for advice, statementing etc. The other is friendship, I have found people on here who understand in a way that very few in rl can, and that has been an absolute saviour for me.
I wonder whether it would be good to have a general chat sort of thread stickies at the top of mnsn? There have also been a few ongoing threads - Tinsley house, Chromosomal Testing and one I started about looking for a diagnosis, with an undiagnosed condition. I think they often get lost in Active Conversations, and I think it would be great if they were stickied at the top or in their own, ongoing support section.
MNSN has been a lifesaver for me. I'm a lurker and sometimes poster, actually I'm probably more a stalker I'm on here every day numerous times. I post when I can sometimes just to honk tbh, because I just want people to know I'm here.
In terms of the board being unsupportive, that hasn't been the case for me personally. However, having watched some arguments kick off I'm really careful about how I post, especially when responding to threads. I tie myself in knots trying to think if someone will or could be insulted by what I say, which ends in a non post or i completely lose track of what Im trying to say.
As our children are vulnerable so are we and sometimes that vulnerability makes us sensitive, and sometimes I think posts are sent in haste and upset and then it rolls from there. Do I think that makes it unwelcoming or unsupportive - I think those threads do, but they are the minority and even those threads have something to offer.
There are some prominent posters here but they deserve their place tbh - they post on others threads with advice constantly, they update with articles etc etc - and if any of us post a thread (especially in the dark days of diagnosis) and someone comes back with hope, advice and hand holding, you remember them and you try to return the favour - which can make things seem cliquey - but I don't think that's intentional I just think people gravitate toward people who they know
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