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.

there were some huge blow-ups re: TH though. and in part, they are what made me more wary about posting about different diets etc. not totally (I clearly have the hide of a rhino ), but to an extent.

and about supplementing too. not 'just' a multivit, but targetted supplements, and trials of various combinations.

it isn't easy to ignore being told that what you are doing, and what you know has had a huge (positive) effect on your child is a load of rubbish, and that the money spent (variable amounts - as in all of life some things are more expensive than others) has been wasted.

that I can't know whether dd1 would have progressed ot the same degree if I hadn't been through all the faff. that I can't know that her progression in speech and communication, as well as her general awareness and willingness to participate in our world and lives, would not have switched on that very same month that I completely changed her diet and turned it all around (well, no, of course I can't know that - massive coincidence, though, huh? coupled with other massive coincidences like me being able to tell, before I was told, when she had had diet infringements at nursery; or massive coincidences like her still to this day losing continence if she consumes artificial sweeteners. but no, to some posters it is all in my head).

it is very hard to continue to post under those circumstances. I do wish that eveyone adopted more of a 'hmm, interesting, I'm glad that worked for you' stance if they disagree. it really is unnecessary to be so rude about it, as has, and does, happen.

that is jsut about the only thing I miss when I say it was different in the 'olden' days. when I first started posting here, on the whole, the board was a lot more receptive to 'alternative' therapies. and posters made up their own minds whether it was for them or not.

if I was to arrive today, with my 9 month old (as I did back then), I don't think I would find out about the things that massively helped dd1 back at the start. the things, without which, she would not have been as receptive to learning. our path, and consequently our whole lives, would have been very different without that knowledge.

Badvoc, I'm sorry you feel that way. I think we remember things differently, but I'll leave it there.

Arrgh...silver we cross posted.

"and posters made up their own minds whether it was for them or not." which was the issue with TH blow-ups, wasn't it?

I don't really want to rehash TH, especially as key posters from that time don't post here any more. It isn't fair to suggest that it was TH in itself that was the issue, though. I accept that it evolved into an examination of TH, but I feel that it was forced by the other issues which arose with that situation.

How odd and disheartening to receive those sorts of comments from people who themselves are fighting a system that often tells them that it's all in their heads, a consequence of their parenting and just the child choosing to be fussy.
That would piss me off too. It's disrespectful and unnecessary.

Nebulous...that's the TH support thread for those following the TH programme.
The comments I refer to were made on MNSN to me by posters some of who have posted on this thread.
I don't want to get into a spat - honestly - I know first hand how quickly that happens on MNSN!! But I really feel on a personal level that MNSN is a great place for support as long as you follow the same path as everyone else I.e: EP/SA/tribunal etc.
I know that the posters on here who advised me to do that did so from a sincere belief that it would help my son and me. I really do believe that.
But it didn't.
So I tried something else. In desperation tbh!! Something that I feel very positive about. Something that has changed my sons life.
I don't like being called names or being told I am in a cult.
TH isn't for everyone and I have never EVER said it was.

I missed most of it I think, which is why I didn't recognise what TH was until you explained, lougle.

I do understand what you are (not ) saying, lougle, but I have never (I think) been on a TH thread. maybe the odd inquisitive post in the early days.

yet I have still been told all of the above, in various forms, over the years. sometimes more, erm, robustly than others.

and I have been told not to talk about it so much, as new posters might get their hopes up (of what? yes, dd1 has had fantastic progression, but I am hardly saying she is cured - she is still severely autistic, at a highly specialised school with full time 1:1!), and that it is highly likely to be a huge waste of time and money for them. just like it was for us, I usppose

No, you are making sense to me badvoc. DS has no statement because he was in a fantastic MS school and getting all the help they could give him. So we never went down that route, despite the disbelief of many.

I gave up mentioning trialling gf/cf to new posters as everytime I did I got a slew of 'can't prove it!', "I know loads of peopel who tried it and it was a waste of time', 'god, hideously expensive and not worth it!'posts.

imo, and ime, it is something that really can't hurt. it needn't be expensive, although it is timeconsuming in the early days. the only 'replacement' product dd1 has is bread, which is expensive, and I should make my own really but cba.

otherwise, there is no more expense for us in a typical week than normal shopping - I spend about £70/week, and most of that is poncey organic. for a family of 5. not hideously expensive at all.

so I don't get why many (and it really was quite a few) posters have such a bee in their bonnet about it being suggested as worth a try - it remains the single most important thign we ever did for dd1. without it, she would have been totally unable to learn, imo.

yes, zzzzz, I remember that thread, and I would like to know what happened next, too.

if all 'alternatives' are not allowed to be discussed, then it leaves us with a very narrow viewpoint.

Well, the info is there for those who are interested on the support thread. That's what it's there for :)
But the verbal abuse and name calling I got shocked me tbh.
I am simply not prepared to post on MNSN anymore about something that has helped my child enormously, due to the name calling and aggression and that is a shame.

yes, probably mostly gluten and dairy free.

there is some interesting info re: eating to your blood group (I know, totally woo! ).

also interestingly, we are a group B family - if you track the course of blood groups, this shows a high Asian history. clearly we, as a family, are not so good with gluten and dairy...

was just talking to dh at lunch today, actually, about ds and weaning, and poo (I always end up talking about poo eventually ) - he is the most 'normal' baby, gut-wise, we have had. it bodes well, so far (he is, of course, being weaned gf/cf).

Silver frog...I feel the same about TH.
It really doesn't have to be expensive! A book and some supplements are all this needed and a slight diet change (not cf/GF) but I know people,who have done that with great success like yourself.
But the derailment of that thread and all the nastiness prevented that point being made.
There just seems to be a prevailing attitude on MNSN that getting an EP report, applying for SA and fighting tooth and nail for what is sometimes pretty patchy provision is the ONLY way to help your child and anyone who tries something else and - god forbid - then recommends it to others is some sort of snake oil peddler and all the other things I got thrown at me.
Deeply depressing.

well, I did the alternatives alongside doign the SA/EP route too, because we desperately needed a particualr (ABA) school for dd1.

but ikwym, and yes, it can be very depressing.

I'm not at all woo, but when things are obviously not going to do any harm, but may help, I'm all for them. I tried GF CF with DS2, via Sunderland and with my paed and GO's support in 2004. It made no difference to him, wish that it had, kind of relieved it didn't. But I often comment on GFCF threads and recommend people give it a go.

After abandoning GFCF, I tried fish oils. I wanted to try things one at a time o I could tell as well as possible, what was causing the benefit, if any. 5 to 6 weeks after staring fish oils I saw a big improvement in concentration and language.

I may have tried TH methods if I'd known about them, back then. Don't see the need for DS2 right now.

I really respected the poster who left over TH and other things. I disagreed with her a lot, but respected her opinion, if not her evangelical style.

I'm sorry you faced a backlash, Badvoc, but if I remember, you gave as good as you got.

Things that have really helped my son:
Rrt = retained reflex therapy
Ait = auditory integration training
And of course TH.
I would recommend all of them unreservedly for children with issues (dx or not) like dyspraxia/dyslexia/OCD/asd traits/add/ADHD.
Flame away....:)

(Sorry, being dense, but what is CF?)

Casein free, Galena. The protein found in milk.

Adding my voice to the consensus that Hothead needs to keep going with the PDA posts.

The only reward chart that worked for DS1 in a sustained fashion (ie for more than a day!) involved over £100 worth of lego and a DSi for less than 2 months progress on a particular issue!!!

Ellen...did I? :)
I respect that poster hugely too.
Without her I honestly don't know where my son or I would be now...
Evangelical is good description!
And I realise I am a little inclined that way myself :)
But I also realise that as parents we are all doing what we feel is best for our children and to berate another parent for not helping their child in exactly the way you are is just wrong.
I don't want to upset anyone.
Never have.
I just know what has helped my son - whether posters on MNSN approve or not.

Zzzzz, great cross post!

www.espa-research.org.uk/

This is the Sunderland research people. Well worth trying the urine test. For my DS (blood group O!) neither gluten or casein had big spikes, indicating issues, small spike for Gluten, we went GF for 7 months.