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 think the comments about TH are very revealing. I remember the threads, and tbh I decided to stay away from them, as I did read them as if some comments were implying that by not trying a potentially alternative method of treatment parents were failing their children. I also remember thinking some posters were being criticised for actually doing something they could not scientifically justify but which they knew was doing their children good.

This is perhaps the most excluded , and oh really I felt on MNSN, but I am quite robust.

I have felt the same about some of the debates which I have had about Botox (my ds has cerebral palsy and Botox is a standard treatment for cp) where I have read lots of comments here and elsewhere that Botox is in effect poisoning your child. Depending on my mood that could come across as a statement that I was poisoning my child by treating him. Which would be offensive, and depending on how it was written could be seen as attacking me. But I can take that and I am happy with the decisions I took, because they worked for me. If they hadn't what would I think next.

The point about MNSN is that we aren't always going to get double blind scientific trials of treatments. That most conditions are in some ways spectrums, and just like nt children all our children are different. We have to share those experiences in order to learn from them, even if the science isn't there to back it up yet and may never be. And sometimes we need to be able to say oh shit.

I may personally not understand some treatments, and think many are a bit woo, but we can't all understand everything and as a result I do think we have to defend our right to speak out about all of them woo or not.

Thereonthestair.
That is possibly one of the best posts I have ever read on MN.
Thank you.

Yes.
I think that it has become the elephant in the room as you say polter.
And I don't know what if anything we can do about that tbh.
I personally use the word cure wrt RRT for my sons dyspraxia. I also use it for AIT as it cured him of his hyper sensitivity to noise.
We have not completed the TH programme yet, so I can't use that word ATM, but who knows?
In 6 months time I might.
I can't be bothered with all the semantics of what "cure" means and what "no longer symptomatic" means.
Call it what you want.
I see the proof of our interventions daily.
And that is enough for me.

Thereonthestsir;
"I also remember thinking some posters were being criticised for actually doing something they could not scientifically justify but which they knew was doing their children good."
Again, thank you.

Which is partly the point. There is some language which we all agree is unacceptable. But cure, really? We have to allow free expression, even when we disagree, provided it is dignified. I know more about asd after having been here for a while, and what it involves or can involve and am i hope more understanding as a result, I know something about vaccine damage, and despite the fact I am pro vac for my child, I would never feel that it was right for everyone, in all circumstances. Back to cp which I know about there is a lovely lady who I disagree strongly with about the treatments which I do for my ds and she does for her ds. I think she is a bit woo, and she is trying something which I just plain don't understand, and which I cannot get my head round how it works. In fact logically I just don't see how I can believe what she says it is doing. But she says it is working wonders for her and her son, so who am I to criticise. She also says to me she disagrees with Botox, splints (Afos) and various other things I do but she makes it clear she disagrees rather than criticises. I sometimes think she is evangelical, but I don't know what it is like to be in her shoes. How can I therefore criticise, as if someone criticised me for how I parent with a child with cp unless they had a child with similar cp I would I am sure still say well what do they know.

The thins is none of us really know. We all believe, and have to share those beliefs In order to test them.

Yes, I knew what you meant polter :)
Sigh. I am aware that there are charlatans and people out there who will prey on a parents vulnerability and desire to do anything to help their child.
I try and remember that those who were so vile to me probably genuinely think that I (and others) are being led up the garden path!
Anyway, I really dont want this to derail this thread, but just wanted to explain my own reasons for avoiding the MNSN board x

It is an elephant in the room. Absolutely.

The trouble is, I'd like to say 'that was fine, that was fine, this was fine and the other was fine. This was the bit I struggled with...', which may well make someone like Badvoc realise that not everyone felt the way she perceives it. However, I couldn't do that without referring to deleted posts, absent posters, etc.

Without wishing to be overly defensive, the issues were a whole lot bigger than people 'trying something new'.

As a newcomer, I find it a shame if people don't feel they can talk about less conventional ways to approach the problem.

But I suppose the reality is that there is a big part of the population that doesn't want to hear about alternative approaches and you can find with the sn world the same percentage of people who will be strongly against it.
I do use alternative therapies, have done so for both my dcs but I am very wary to talk about it on MN on general because I know I am likely to get a hard time about it. So I don't talk about it on mnsn either even though it has made a huge difference to ds.
Perhaps I am wrong. Perhaps I will feel stronger later to post about it. I don't know. But I can see how it can put some posters off.

The thing is this isn't a mnsn issue. It is a MN or general society issue iyswim

thereonthestair to be fair, you are giving your child a toxin. It just happens to be a toxin which has been recognised to give beneficial side effects. That's what medicine is, all of it. People who suggest you are somehow harming your child by treating him/her are simply not thinking about the nature of medicine.

Nothing you put in your body can have no effect. It's simply a case of deciding whether the thing you put in your body has positive or negative effects, or more realistically, that the positives outweigh the negatives.

My niece has cancer. A nasty cancer. Her parents have had to consent to giving her chemotherapy. Chemo isn't terribly clever and every time it blasts that tumour, it also wipes out her immune system. Would anyone dare to tell her that she is poisoning her DD by giving her the only poison that may save her life?

The other thing that I think is important to. Remember is that MN is a forum and therefore very fluid. People that were on here 3 months ago and have had strong views might not be here anymore.

It is a shame if people stop posting because of others who aren't there anymore. Especially if they have lots to contribute.

As a poster I think it is only fair that I am the one to read, and then take a decision about whether PDA or gf/cf diet are relevant to me. Just as I would if I had been googling. For the great thing about mnsn is that I can ask questions, I can read experiences from both sides which I wouldn't get from google.

I know Botox is a toxin, and it's poison.... Speaking of which is it a clock yet

Botox is a toxin and a poison - but DD will be having it in the next few weeks again before going ahead for surgery later in the year (if accepted) which none of our HCPs have recommended, our PT has actively tried to discourage us from, the PCT won't fund and will cost us thousands.

Some people agree with our outlook, others think we're mad. We have chosen our path and that's what important.

And yes, it's o'clock - the girl-child is in the bath and DH is doing bath/bedtime. Cheers! :)

Botox is like anything else - if the therapeutic effect outweighs the negative side effects.

It's something I'd consider for my migraines. It's not something I'd consider for cosmetic effects.

Galena, I hope the surgery proves effective for your DD.

Thanks, lougle We're still waiting to hear whether she's a suitable candidate for it... I'm just very grateful we don't need to fly thousands of miles for it... only 40 miles down the road...

Galena, they are probably changing the funding next month, I know the south west NHS commissioning authority are looking at it..... Have they spoken to you about that. I understood waiting a few months may make a real difference to the funding overall especially now it's got 4 centres offering sdr as standard.

Not read more that the first 5 ish pages and I can see the discussion has moved on to TH. But wanted my tuppence worth on the MNSN boards.My experience has been really good. Ive been on here for about 2 years (DD is 3 now). The handholding thread was great for offering support, a place to vent, update and just feel Im not alone. It did create a little community of folk who posted regularly and that starts to show in posts but newcomers were always welcomed I thought. Otherwise I tend to start threads looking for specific advice and especially where the title makes clear what Im looking for I always get relevant help as well as support. Ive posted the occasional 'please tell me this gets better some day' posts and been really touched at responses from posters with older children. I found some of that enormously healing.
The idea of a couple of stickies is nice, there are some regualr threads that function like mini boards and at times its annoying to have to go look for them.

I dont really mind the insider jargon that develops, I think its a natural group thing and not surprising given how much other parts of our lives get consumed by SN. I also think that everytime Ive seen someone ask about what something means or intro themselves as a newbie there are explanations, efforts to be inclusive and welcomes...I know people have spats on here too - either with each other or with MNHQ but I dont really get involved and its certainly a lot less than on other parts of MN or other general online forums.

Just to say that I've taken my own advice on this thread and created an advice/chat thread about blind/visually impaired children. If there are any other lurkers on this thread, please come and join me there!

That's so sad Hothead I don't mean 'sad that you'd medicate' but sad that at such a young age it is a necessity. Your DS must be really struggling.