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'm going to try to be less blunt, and try to remember how I felt in the early days. I guess it got kind of lost in the everyday trudge!

Sometimes too people will share little details that might seem irrelevant but these will be like lightbulb moment for someone else.
Someone posted about their AS dc having a low sensitivity as opposed to be hyper sensitive. I had never thought about ds not complaining about a tooth with an abscess being anything else than god send (he refused to have the tooth extracted at the dentist so had to wait a long time to get sedation etc ...). But this was a key point when we was Camhs for the go ahead for the assessment.

Don't you think some of us not me, oh no are possibly a leetle bit on the spectrum ourselves, and that affects how we post? Perhaps a bit more bluntly and forthrightly than average?

Yes EllenJane, I would definitely agree that that is a possibility. not me, oh no

FeelsSad, it took me ages to realise that my DS2 had quite significant sensory issues and they were 95% hyposensitive. I just couldn't recognise him or his behaviour in all the hypersensitive examples I'd been given.

Nowadays I don't know where some of the phrases I use or the knowledge I have, comes from. Was it pre MNSN, did I say that first? Or was it Ineed, coff33, Star or Attila? I'd certainly never heard of ABA, but had used PECs with my DS very successfully in a very ABA manner.

I have certainly never felt that there is a clique-thing going on. Yes, there are a core number of posters who obviously know each other well. Yes, if one of that core posts they tend to get more responses than if someone outside the core posts. However, whenever I have posted, whatever I have posted about, someone will read, reply, offer support, offer advice, or even just say 'That must be hard, but I'm afraid I don't have any suggestions.'

I know I cannot offer much help/support with ASD matters. I have no experience. I also know that what DD faces daily, whilst to her and to us it is a big, life-changing matter, to a lot of you it is relatively minor. However, I have never been made to feel that we don't have a place here. You all celebrate her progress if I share it, you may feel very at times with our provision and so on, but you never make me feel bad about it.

Thank you all for being you!

blimey, this has really moved on since I jumped ship for an early night (just as well - ds was up partying again!)

I'll have a catch up as I feed him his second breakfast, hang on...

Not just ASD traits, some posters are fully diagnosed with ASD, or other neurological disorders and many more of us perhaps should have been as kids if you include the full gamut from dyslexia upwards. Ellen makes a very valid point.

I'd have chased harder for DS to be "labelled" dyspraxic? + SPD? + APD? + dyslexic if there was any meaningful support pathway for that locally. He's borderline on one aspect of the triad, but impacted in other ways too. I initially looked into auditory processing disorder, but while it's now mentioned in DS's statement that he has obvious problems in this area when I asked the local HCP about it and tried to get a referral to GOSH, I was laughed out of town.

Only my local ASD professionals seem to have the knowledge help me in any meaningful way - everyone else just patronised me & denied that there was anything wrong with the bolting child making animal noises all day, every day for years on end. I actually couldn't give a fook about the label, so long as he gets access to the right support.

I suspect many others at the borderline end of the spectrum have found similar and that this may impact the "slant" of the board sometimes, and make it seem rather more biased towards one thing than perhaps it should be? I stuggle with terminology a lot sometimes as I have two adult cousins (2nd & 3rd) at the severe non-verbal end of the spectrum & know that their immediate family faced rather different daily challenges to mine iykwim.

I've formally asked ASD outreach to take control of the emotional skills training DS needs on an ongoing basis. I just don't have the ability to do it myself as much as I really, really want to. In my case the "fluff" gene seems to be totally missing, and I can drive HCP's crazy at times because of it! I think it led to many of the negative perceptions towards my general parenting skills from professionals when I initially sought help as I didn't waffle on & on about my feelings to them, or even recognise that this was what they wanted me to do! Perception is everything in some quarters, the Queen is admired for her stiff upper lip approach, a Mum seeking help isn't.

I'm not going to apologise for not being able to do the emotional support type posts for others here on this board when I'm feeling so guilty at lacking the capacity to help my sprog in this area. I'd rather spend my energies on reading those posts by those who are good at that sort of thing and learning as much from them as I can. (I do get wel jel ).

Given my own vulnerabilities it just seems a healthier approach to take.

Can't we all just appreciate one another's strengths?

Maybe, if you really need one or the other kind of response then start the thread title with 'just offloading' if you want recognition and a few honks, and 'need advice' if you want more practical solutions than sympathy.

Personally I am happy with eirther kind of response. For the few that just say, 'yep feeling for you, that is typical and we see it all the time' I usually also get a few, '..and this is what you can try to make it better for you all'. And that is just perfect.

..and the odd joke never goes amiss

I think that when criticising other posters responses, it's also worth bearing in mind that at least they do respond.

This section relies on people giving support as well as asking for it. If we all just posted when we felt rubbish and didn't respond to other people who posted when they felt rubbish, there would be no 'MNSN' board.

If posters who don't feel they can post about their circumstances wanted to, they could at least be a support for other people who do feel they can post, instead of telling those of us who do spend time and effort replying to threads that we aren't doing a good enough job.

wow just read the whole thread .

I'm more of a lurker and a frequent name-changer as I sometimes give details that could out me in real life.

but I think this board is Absolutely Fucking Amazing.

I've learnt so much about my dc's conditions and about other conditions that I'd never heard of

I've let off steam - sometimes just by reading somebody else's rant and silently empathising.

I've been left aghast by the lack of support some families get

I've been confused and worried by some people's situations and seen how other posters tactfully (mainly!!) try to steer them onto a potentially more productive path

I've been blown away by the lengths some people go to help their child and by the fantastic progress their kids sometimes make as a result

the only negative thing I feel about the board is that through no fault of the posters it does make me feel guilty and rubbish because I don't do half the things some parents do to help their kids.

I've adopted "a marathon" rather than "a sprint" approach. But I also know in my heart that I could be running that marathon a lot faster rather than ambling along stopping off for snacks and little lie-downs all the time.

I am a lurker who has namechanged (couldn't remember email address linked to last name so got locked out for a while and now back to lurking) When DS first was referred for his global delay I posted a bit on this board, and some very very kind posters, enabled me through a very very bleak period where I felt completely alone in RL. Here was an amazing space where people understood every minuscule emotion I was feeling. I also got some tremendous practical advice that wasn't asked for but was offered up and has been a godsend.

I have felt so bad at not being able, to return that amazing kindness that I have felt quite awkward at times continuing to post. I am not a massive shrinking violet in RL but I do get quite humbled by people's generosity of spirit, time and experience, that I sometimes feel a bit overwhelmed that it is coming via an online faceless forum. I have struggled to work out how you manage this relationship!

I know that may no make sense but I am trying to explain how I have found the board as a newbie. I think it is an extraordinary place of knowledge, real and diverse experience that I feel guilty posting to get help or advice if I am not prepared or able to invest enough time returning that generous spirit that it kind of puts me off continuing to jump in. I don't want to be selfish and this board does feel like a great group of mates / community that I don't want to be that one that just pitches up when she wants something IYKWIM. I wouldn't act like that in RL and I don't want to act like that here. Everyone is too giving to be treated like that.

Bonkers train of thought I know, and my issue, but it's just how I have been. So basically, you are all to nice!

Apologies if I disappear now, have to take DS to physio.

*too

I think that when criticising other posters responses, it's also worth bearing in mind that at least they do respond

This sums it up for me. It seems incredibly mean spirited to complain when someone has taken the time out of their day to respond - noone has to.

For me, it's the full range of approaches from practical solutions to individual posting styles that gives this board so much value overall. We have people from all walks of life from teen Mums with babies to children's professionals, covering the whole of the UK (and several other nations besides). Where else can you get access to that breadth of opinion and knowledge, especially given the social isolation some people experience in RL?

The sheer diversity of responses & perspectives is exactly what makes this board so darn useful!!!!

I've adopted "a marathon" rather than "a sprint" approach. But I also know in my heart that I could be running that marathon a lot faster rather than ambling along stopping off for snacks and little lie-downs all the time

I can relate to that DisAstrophe.

Also the guilt in some ways.

I think Im doing my best in most aspects, but I always wonder if I should do more.

Ive had periods of time where all I did was research what to do and how etc, but I think I got overly obsessive about it [not suggesting anyone who does the same is, just saying how it felt for me] and I don't think it was helping me or my son.

I feel now that Ive found a way of being that works for me, my son and my other children too.

I think everyone has their own way of dealing with things and on the whole there is no right or wrong, just different.

But, hopefully, we do understand that not everyone has the capacity or desire to spend every spare moment on MNSN! I am happy to offer whatever support I can to anyone, old or new or NCer. Obviously I like to bump into 'mates' occasionally and have a chat, that's part of MNSN for me as well.

I'm naturally rather chatty, though, and you have to be confident in yourself to offer up advice. I just pitched straight in as soon as I found MN, I never lurked. But that's down to personality. So, I guess that most of the 'regular' contributors are confident in themselves and want to share it. That probably makes us a particular 'sort' of person. Or maybe we are just confident on an anonymous forum? rather than in RL!

Thanks Amberleaf

I've done lots of research - its what I do for a living so comes naturally to me. I'm much more of a thinker and a talker than a do-er!

My dc are well-loved and well-cared for - the type of upbringing that would be more than good enough if there was no SN. I have no feelings of similar guilt about my younger nt child.

But dc is now in a good school and has good professional involvement - with help of what I learnt on this board.

I'm much more of a thinker and a talker than a do-er!

Oh god, me too!

If only I could get motivated Id change the world!

Please do remember that a lot of the advice is what you 'should' do, not necessarily what we do do! Do as I say, not do as I do.

Amberleaf - I often think the same!

ok, have read it all, and promptly forgotten a lot

thank you to everyone who posted - nice to 'see' a few people who aren't usually over here and to meet a few more who I had no idea posted over here either

It has been really interesting to see different takes on how/why the SN runs. and to see what people want from it.

I don't have any answers - I can barely run my own life at the moment , and I am not around supporting as much as I used to be. That makes me feel bad as I am sure I am going to be in need of advice over the next few months with dd2.

wrt feeling as though problems are not as big as others' - please don't anyone feel this way. I've posted about some seriously trivial stuff over the years, which was important to me at the time. just recently I was once more asking if anyone knew how to teach music to severely disabled children - that's hardly at-the-coalface, daily slog stuff is it? wanting to know how to help dd1 harmonise/play along to her favourite songs

but it is important to her, and therefore to me.

many others have said it - it is the breadth and depth of expertise which makes this place so good. we don't (and can't) have all the answers, but usually there are a good few suggestions to try, and the shift of perspective can be refreshing too - I know I've asked one thign, but ended up taking away a very different answer (or the answer to a very different problem!) more than once.

TheBot please don't feel like you can't keep asking. Some of us share our experiences in a kind of therapy way, and share our research and knowledge because we're just so damn angry at how we've been treated we want others to have the tools to challenge too as well as avoid pitfalls. It makes the fact that we've given up so much of our lives to google a little bit more bearable.

So ask away....

merlincat I'd love to hear your DD's successes and commiserate on her failures. It's that kind of reality that we all need here. I shared this week that DD2 brought home her first ever 'creation' that another child had made for her. It was epic stuff - like a flare going off in the night sky.

Tell us...start a thread - I dare you