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 know, zzzzz, and his SALT has always said the same thing (about ds being little), she just suddenly seems to be talking very much about alternative forms of communication, and that in combination with the fact that the majority of children with Kleefstra syndrome are largely non verbal, well, it just all seems a bit more real. However, ds is signing so well, and is so motivated to communicate stuff to us, and that is so lovely and so positive, I must kick myself in the shins and tell myself to stop being daft!

I know what you mean about the deletion thing, it has riled me because I try so hard to be fair, and I try and ignore it when I see people accusing the sn boards of being exclusive or about there being bullies here, even though i worry that it will do harm in the form of putting people off posting here. But when you do stand up and say, hey that is not on, you get deleted!

'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
My worry then is that if I say for example that it hasn't improved with age, or even has become harder- well that's cruel isn't it? but if every post says it will get better by X and you know it didn't for your kids, NOT posting is a bit like selling false hope.

I rarely post here any more, mainly a time thing. I do wonder if I am one of the clearly professionals referred to up thread but that is part of why I post less, it's hard as someone who is both professional and parent to know where to fit in.

Also, my own experience is that if you are tending towards depression MN (possibly any forum of the type but MN is the only one I use barring FB and twitter) can be very unhelpful, I had a breakdown of sorts when ds4 was picked up with Sn (already had 2 with ASD) and I found myself edging towards fighty threads and indeed any thread that confirmed my low opinion of myself at that time. I suspect that's more of a board wide issue: but it's why I personally had to turn away from MN altogether for a long time after over a decade of posting, and now I post more carefully (although time limited anyway- DH trying to complete dissertation, other assignments and keep work up; ds2 needs to re-enter the SEN system at comp, need to persuade lEA to admit ds3 to a specific SN placement and just got a statement through for ds4 after failing at appeal to have his measly 5 hours a week bumped up).

Hothead PDA links MUSt be posted imo. DS1 (ASD) doesn;t have that as a dx but we (me and the asd specialists who etach him) alla cknowledge it's a factor: when I understood that I finally understood him and why we were getting nowhere with him yet so far with our younger asd boys.

Mary I agree about depression: for me, a good GP saved my l.ife absolutely. I would not be here now. Obviously most people don't get that far and we ahve ahd a rough time by being fired back into the dx system several times over, but it's always worth us on here being aware when people seem fighty or aggressive that it could well be the case.

I guess my tip would be to learn when to call it. I appealed ds4's statement at review but I won't take to tribunal as I know that whilst we are dealing with genetics and ds3's school aplcement and the rest it would be too much. But equally I know I can go back and address at a later stage. Knowing what must be done now and what later is so important.

Well, I wasn't sure whether or not to add my tuppennyworth to this thread, but that's because I wasn't sure what exactly was being asked: is the issue that there are lots of parents of children with SEND on MN who don't post in the MNSN section, or is it a thread about why some posters find MNSN is hostile/cliquey/unwelcoming ?

FWIW, I'm definitely in the first camp (although I have posted a couple of times and always met with a polite and helpful response). It's just that, for me, almost all of the traffic on this board is irrelevant to my situation - every few months or so there's a thread I can make a sensible contribution to but apart from that (and unless I keep starting my own threads!), that's all there is for me. I do find that MNSN is very heavily dominated by ASD and other neurological disabilities (and I fully understand why that is the case!) but it does make it less useful for those of us whose DCs don't have ASD! I agree with everything that MsCellophane, Galena and SallyBear said upthread - I don't think it's a coincidence that we all have children whose needs are primarily physical or medical, and I do think that gives you a very different sort of experience.

To give you an example: my DS has a very low incidence disability (severe visual impairment, which is even more unusual in such a young child, as many eye conditions are progressive). He also has a rare type of cancer that means that he has had (and continues to have) regular medical interventions. Many of the things we have struggled with are very specific to those two things and it's doubtful to me how useful other people's experiences would be unless tgey were also in a similar situation. For example, he has a slight expressive language delay (very common in children with VI) but strategies that have been used succesfully for children with ASD or other communication problems probably wouldn't help with him because tgey tend to rely on visual methods (e.g. signing, PECS...). Similarly, the other issues that I know lie ahead for us (orientation and mobility training, what literacy format will work best for him) are only really of interest to other parents of DCs with VI. My final point is I think that my actual experience of having a child with SEND is different because of the nature of DS's disability. Because he was diagnosed as a baby, and because his eye condition is seen as a "medical" condition (and therefore very clearcut), we have never struggled to get access to the support that we need, whether that is DLA, funding for one-to-one at nursery, SALT, portage or access to a specialist VI teacher. I realise that very many of you do struggle even to get a diagnosis and that you then have to fight very hard thereafter to get the provision that your DCs need but it does make it difficult to join in with many threads on here when I don't have the same feelings of (totally understandable!) rage/hostility/frustration that I see on here a lot.

Sorry, this has turned out longer than I intended! I dont know what the answer is - maybe more chat threads for particular issues, as some others have suggested?

mackarella, thanks for your comments. I think it's a shame that you don't feel that this section is relevant to you as a parent of a child with a disability. I see totally, that having a strictly physical condition, albeit with knock-on neurological effects (ie. speech delay) is different.

I think the purpose of this thread is to clear the air about the fact that a poster or posters (I say that because one poster has said that other posters feel the same way, but those posters haven't come here to say that) feel that they are unwelcome and that MNSN is a hostile/cliquey/unwelcoming place.

It's really fine for people to say 'this section doesn't give me what I want and so I'll find somewhere else.' - it's a free country and some people prefer netmums to here, for example. I, personally, think it is less fine to declare a section unwelcoming/hostile/cliquey etc., when you also make it clear that there is nothing those people can do to make it better. Additionally, it seems unfair, to me, that someone should be able to post on other posters' behalves, including stating such things around MN as a whole, with no right of reply for the posters who comprise the 'support' that is deemed to be lacking.

MNSN is fine as far as it goes.
But deviate from the "Senco/EP report/SA/tribunal" route and you soon see a different side.
I have been called deluded, gullible and that I am in a cult, all because after I went down the NHS/LA route (as advised!) and it failed my son I tried something else (which has been great for him).
I stay pretty clear of MNSN these days and know others do too.

Interesting, Badvoc.

I've got two children 'with concern.'

First one - didn't follow advice to do SA for over 1 year. Then did it through NHS/LA and accepted the first Statement I got.

Second one -I'm watching and waiting. I've changed her school and I'm prepared to see how she goes, accepting that she may have to 'fail' for a while.

The issue with TH was not that it was 'something else' as you are well aware.

Lougle.
I think you are confusing me with someone else.
I think you had issues with the way a previous poster expressed her views.
Fine. I get that.
But I was still called all those things by people on MNSN.
And just because I didn't follow the NHS/LA route and opted out of the whole sorry mess (at least it was a mess for us)
Our approach to our sons problems (and thats all it is after all, a different approach) is working really well for us.
Which is obv something that I am not allowed to say or express on MNSN.
It's not me with the agenda here Lougle.

I completely agree Maryz, and I hope you'd give me a kick up the arse if I started being dismissive and rude about what works and what doesn't.
Some weird woo stuff works for DS at the moment that he believes in and I don't, but if it helps him, then I'm not about to throw his random crystals out of the window. Or mock him for sleeping with them under his pillow.
It's about what works for you and yours, not evangelising and converting others to your personal philosophies.

"Our approach to our sons problems (and thats all it is after all, a different approach) is working really well for us.
Which is obv something that I am not allowed to say or express on MNSN."

Why are you not allowed to say it, Badvoc?

I don't understand that. Nobody had issue with anyone discussing TH in itself. You know that.

Umm, what's TH?

Tinsley House

I've just read your TH support thread badvoc, it comes up when you google.
It seems full of enthusiasm and positive supportive comments, a lot of them by you.
If anyone was being rude or dismissive, I missed it. No one seemed to be looking for a scrap.

Zzzzz good I'm glad. But I have been.
I don't talk about our approach on MNSN as we have our own thread now and I really didn't enjoy the kicking I got.
Lougle.
I repeat...
I have only discussed TH in what i consider an even handed way and I was still called all the things I quoted upthread.
People had issues with one poster and took it out on me.
So quickly got the picture of MNSN works.