Here some suggested organisations that offer expert advice on SN.
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.
grin - did you just ask if I am Dolfrog <gasp> how very dare you!
I think most of my more, ahem,
enraged spirited posts over the years have been when in conversation with Dolfrog, tbh.
I do understand why people namechange. It's jsut I am hopeless with keeping up with it - and especially if other posters have cottoned on, it can mean I think 'oh well, they're getting help' and move on.
PrinceRogers - you came across well in your post. I am sorry if you haven't been answered sometimes. I think we have all been guilty, at some point, of clicking on a thread, reading, thinking we have nothing to add/can't help, and then clicking away.
hazey - it does seem very ASD heavy at times, I agree. I don't know why we don't get as many 'other' posters here. I can see why chat threads can be a good idea, but I am wary of moving useful, helpful discussion away from the board - chat threads can be time consuming ot keep up with, and useful info can easily be lost that way <selfish>
thanks to everyone for posting - this could have gone badly wrong, but I hope it has been at least a little useful.
Oh and NEB - I want to hear about life in the future..... Light at the end of the tunnel is most welcome
If rather the board wasn't seen as a 'thing' that had to be a certain way or fixed as a certain thing. To me the board is just everyone who posts. Its very different to how it was 10 years ago. Thats cool... things move on.
Once it starts to be about ' ownership it becomes a little weirdy imo and people stop making adjustments for difference.
Think people just need to chill a bit tbh
I don't think anyone is trying to fix the board a certain way, or take 'ownership'
A few posters here have said it used to be different, but that things change, and c'est la vie. Fine, all well and good.
There are other posters who are not feelign so included, and not feeling comfortable. since the board is generally about support and helping those who are struggling for whatever reason, it might be nice to see if we could work out why some people are feeling excluded.
It would be nice and maybe we can help them with that but maybe we can't.
There are a lot of overstretched people here doing their best to live the semblance of a normal life.
If people post respectively, and try to do their best to offer help, I'm not sure what else we can or should do.
Ownership? I didn't think that's what we were discussing. In fact, I thought Silverfrog's OP was entirely the opposite - how do we address the feelings of posters who may be expressing a sense of discomfort about posting here because they feel that they do not 'belong'.
The board was ASD heavy for a while. I felt at that time, that posters only wanted to hear from people with direct (familial) exp of ASD. Either thread titles and OPs have shifted, or I am in a better place, because I don't read them as being so 'exclusive' now. I've either got to a better place with DD1 having an undefined SN or I've got a bit tougher and think 'stuff that I'm posting anyway.' Who knows?
It's interesting that there has been a massive rise in PDA threads - it's the new 'thing' to be aware of.
There is never going to be a surge of 'squiffy brain with genetic element but no known reason or identified condition', I think
'squiffy brain with genetic element but no known reason or identified condition'
This is exactly what makes this place necessary - things can be hard, and the black clouds never seem to pass...and then someone posts something that describes exactly how it is and makes you giggle at the same time.
I don't think it is possible tbh. I thought a poster (with a name I didn't recognise - so hey, was responding to a perceived 'new' poster with support) had come up with an excellent idea, so I said that, and followed it with 'cheers' and their response was that I had dampened their spirit 'as always'.
I don't have a clue where to go from there tbh .
I think most of us would have been confused by that response!
Some people have a lot of baggage that neither they or us can cope with. All we can do is make an attempt to be supportive, and not get distressed if that is not what they were looking for. We don't really know each other, so we are bound to put a foot wrong without knowing why on occasion.
I am not a big poster maybe because I am really slow at typing and the moment is gone by the time I post!
I find this board really helpful with lots of help and advice which can be gleaned just by reading people's threads.
I am a bit anxious about posting too much as I feel I am very identifiable in real life. I have two dc with disabilities including a rare distinctive condition.
Maybe I am just too self conscious!
Anyway recently I put a thread up about trying to get respite care for ds and Bigbluebus wrote a fantastic response and I followed her advice and now we have respite. I am so grateful as just one nugget of information can really help sometimes.
I feel everyone seems very kindly on here and I am staggered when people take the time to write a well thought out helpful reply.
What is the betting this thread has moved on now as I have been so slow...
???? Starlight always found you incredibly helpful and quite upbeat bit miffed at that
I think the SN section is very supportive most of the time. I don't use it so much these days as ds is much older (and technically has moved from SN to druggie ) so the problems and solutions have changed for me) - I post mostly in teenagers now.
I think there are two problems. The first is newbies who have just heard that their child has a diagnosis and are really traumatised. I think those of us who are further along the road should accept that trauma, the denial, the "why me?" resentment, the "why can't my child be normal" without immediately jumping to defensive mode and saying "your child is normal; are you implying there is something wrong with mine" iyswim. So a bit more understanding of newbies would be good - and if those posts piss you off, hide them.
The second problem is the "degree" of disability experienced by different parents. For me, school problems were the worst, with some behavioural issues at home. Compared to some, my life was easy and wasn't affected much, at the time, by SN. But to me it was majorly affected.
Again, I think if people think "oh, that isn't really much of a problem; lots of people have it much worse", then again, better to hide the thread.
I have also suggested that the SN board should be split up and instead of the present categories there should be SN - Support and SN - Discussion. And those who just want support can hide the Discussions (which are the ones that get nasty) until they feel strong enough to deal with them.
And then the tumbleweed topics (such as SN teens) should be in stickied threads at the top of the SN - Support section, so there could be an ongoing thread for example for parents of children with profound needs, parents of teens reaching 18 and theoretical independence , that type of thing. So people with similar problems looking for similar help could find each other.
Interestingly, I first posted her eleven years ago when ds was diagnosed with AS.
There wasn't a single person on the board with a child with ASD .
The SN section has come a long way since then.
I think it's easy for it to end up ASD heavy, since about 1% of children are affected by ASD. Even then, I think we've ascertained (even by my own straw poll of 2 boys) that "kids with ASD" is a far from homogeneous group, anyhow.
And lougle iirc, isn't it your DD1 with her "squiffy brain" who, written about in the abstract, seems very similar to my DS2, with his ASD? If it is, they seem to have more in common than DS2 does with DS1!
I have had great support from this board over the last 3 years and at times it has been my only support.
A few people have left during the time I have been around but generally that has been due fall out from other boards.
I think it's impossible to work out "why some people don't feel included".
There are people in all walks of life who are less secure, and need reassurance that they are alright. I find most of the threads where it ends up with "you just don't want me here" that that has never been said and is refuted by multiple posters multiple times.
I'm actually beginning to hit a sort of compassion failure, which really me. I have very very many needy people in RL who need gentle and comprehensive care. If someone is really determined to feel left out on line there is only so much I can do. I try to withdraw now.
I don't see cliques on line though there are posters I am slightly in awe of.
I love the humour and the bluntness. I love that I can share what I think about sn, and ds, and professionals and you guys get it.
Sometimes I cry at the awful endless paper cuts of horror that is part of our lives.
I love to hear the triumphs big and small.
All my "knowledge" is parenting stuff, and the things I think in the dark of the night. I hav nothing else. I will never work outside the home. I will never be off duty, having people listen to me and occasionally find what I say useful is such an extraordinary unexpected pleasure.
ZZZZ. That is an amazing post - as ever.
I agree with that zzzz.
I have never seen anyone tell anyone else they are not wanted here.
I have seen people say "you don't want me", but that is different.
I am a fairly resent poster, and must admit any issues must have gone right over my head! Having struggled to get my sons needs accepted and diagnosed ,I feel having somewhere that helps others see that is the usual process is very reassuring. I'm always on here! I use quotes from here to help me deal with professionals and stop them from intimidating me and also I must admit to having a need to talk to someone some how when things are tough without getting told he will grow out of it or that he will realise that's naughty soon.....diagnosis or not people with NT kids can't seem to get it.
So I am grateful to you all, absolutely no complaints!
I love the board just as it is. The banter along with it. Not really been here that long so dont know what it was previously like but long enough to know that when I was at my lowest ebb and in denial there was someone here at silly oclock in the morning that took me seriously and directed me in the right direction without plain saying "for gods sake its obvious!"
I am forever grateful to the SN board for this and I wouldnt change it for the world.
And no I have never read someone stating that they are not welcome or wanted here.
I like the mix of people. Some say it like it is and some approach softly softly. Remembering all the time that none of us are professionals in the SN world other than parents who have learnt a lot along the way and stored it up for future use. I like the fact that there are differences of opinion and different angles of approach. There is something for everyone here I think.
Iv'e been around for about 3 years and I have never felt excluded or marginalised... I don't do anything else internetty, IYSWIM, so I approached MNSN as I would a RL group of people, lurked a bit, till i felt comfy, posted a bit, if I felt I had something to say, got comfy with you, and then just chatted, helped when I could shared when I needed/wanted to. I have been helped enormously over the years...
Yes there have been some 'spats' and I have thought blimey I'm not gonna get into that conversation! but that's life, people feel strongly about stuff, (just like in RL again).
I am a bit worried now that (for the first time ever) I called someone a troll (but that was as rude as I got) and it was the horrid thread about being able to keep any 'thing' alive these days...
perhaps I am a bit odd, in that I kind of think of you all sort of down the pub with me, an open group anyone can join, but one that has existing conversations going on. We all budge up and make room on the seat for anyone to join us, and make them feel welcome, but if a group of people all arrive at the same time and suddenly started having a conversation about a certain topic that hadn't been discussed previously I would find it a bit odd, and it might feel a bit of a 'set up' (in my pub analogy).
Hope that made sense..
I am kind of a newbie to the SN world and I guess this board, but I have always found you guys great and I love the fact that I can get honest, straight forward advice.
I am still discovering how my DS is affected and still very much learning about his issues- this board has helped with so many areas of my life with DS, from being assertive with proffs and helping me gain perspective when getting caught up in the labels/terms used, It has also helped me see things from others points of view, stopped me getting stuck in a train of thought that is not helpful and given me a kick up the bum and take action sooner rather than later.
It's just sooo nice to have people that 'get it'.
It has also given me the confidence and conviction to stating what my son needs, and challenging the rubbish that tends to come out of people/LEA mouths.
I have gained so much insight and my family would not be as strong without my ability to vent, cry and sort out issues at hand without wearing down people in RL.
Im new and id just like to say in the short time ive been here ive felt supported included and valued.
Particularly had alot of help from Lougle, starlight and polter so a big thank you to the above posters any everyone else here who takes the time to help parents struggling.
People also seem to remember my story which doesnt happen on many other boards.
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