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 is certainly not enough known about PDA.
I would welcome more information on it.
Until I joined MNSN I had never heard if it!

Ahhh, so pretty much gluten and dairy free, but not quite?

:)

Yep, GF CF diet. Should also avoid MSG, other additives. 'Twas big in the autism world in the early 2000's.

Silver...ah, yes. The proof thing :)
I got that too. A LOT. Which is fine.
I (or you) can only state what we have experienced, be it good or bad.
For us TH has been life changing. I am not exaggerating.
Is it for everyone?
No, of course not, just like cf/GF isn't, or ait, or rrt or any other approach.
That's what really gets to me.
I got the EP report - paid £600 for it, too! Told me what I already knew and actually damaged my relationship with school. Not one of the recommendations was put in place. Applying for SA would have been a total waste of time.
So.
Where do you go from there?
For me it was a no brainer. If the school/LA/NHS won't help him then I will.
It's worked out ok so far.
There is no one way.

Sorry, but no one has mentioned the angle to the TH 'argument' where posters were aggressively criticised for not trying the TH way.

Parents being accused of not caring about their children enough to try it etc.

I know that some people don't believe it works and have been vocal about that, but you can't say that the issue was about that and that alone.

Lots of people were very upset by things that were said by a poster that as far as Im aware is no longer here? [so I won't name]

Maryz.
How eloquently and in 2 sentances you put my entire last 5 posts! :)
Sorry to hear about your son.

Amber.
That was one poster who, as you say, is no longer here.
Did I say that? Have I ever said that? And yet I still got a kicking.
I agree with Maryz...if TH hadn't worked we would have tried something else.
(I really regret not doing cranial osteopathy for example)

Badvoc, I have learnt loads from MNSN. I'd never even heard of ABA! And I thought I was quite proactive. I do tend to post about things I've tried, like Hanen, PECs, GFCF, fish oils etc but I do find myself recommending people read up on all sorts of things I've learnt from MN.

Silverfrog - Can I just say that I tried GF/CF for my DD because of MNSN and I think it made a big difference to her. She can at least poo now rather than only going every five days and bleeding because they were so big :(

Anyway - please do keep posting about it because I think it is really important.

And zzzzzz, we don't find it that hard to be honest. It can be tricky out f the house. We are going to friends for afternoon tea this afternoon and I will take DD a sandich and we have made GF and milk free cup cakes and scones to take.

I am not a natural baker, but it's easy enough.

I think the problem is that, if you have seen a huge improvement from trying something, it can be very hard if someone dismisses it completely out of hand without even seeming to consider it.

Equally, if someone is trying to insist you must try something that, to you, seems like it would never work, it is equally hard.

However, unless it is mentioned, you will never think of trying it. And it may well be that, once you have exhausted the more 'standard' alternatives, that you are more receptive to the less erm... 'accepted' methods.

Me too Ellen.
Maryz...consider me silent on the subject :)
I haven't done cf/GF but have really cut down on carbs (so gluten) and milk (casein) and it has really helped ds's bowels (sorry for the tmi there) and saved him from having exploratory surgery to dx his stomach and bowel issues so obv we are delighted.

Galena.
Good point.

Amber.
^That was one poster who, as you say, is no longer here.
Did I say that? Have I ever said that? And yet I still got a kicking^

No Badvoc, not as far as I know you haven't, but you were defensive of her doing so and did have an attitude of your own which played a part in any 'kicking' you got. In fact I didn't see that as a kicking, more of an argument with both sides giving as good as they got. But that is just my opinion.

Anyway, I agree with Maryz, no criticism of either 'side' but any controversial treatment is going to attract debate.

I said at the time of all that, I had a lot of respect for that poster and did enjoy reading her posts even though I didn't agree with her on everything.

I was called gullible, deluded and that I was in a cult, amber.
That's enough of a kicking for me.
And as for it being controversial, we will agree to disagree on that one.
However, I don't want to derail this thread.
It's an important one.
Lots of people obv feel that MNSN is not an inclusive, welcoming place.
And that's sad.

Zzzzz....my ds2 and I are intolerant to milk.
Ds1 loved it but has adjusted to not having it.
I read a really interesting book - paleo eating - and it talked a lot wrt milk.
We are the only animal that continues to ingest milk after weaning has taken place.
And milk is - according to this book - filtered cows blood.
Ewwww.
I still miss cappuccinos though, cows blood or not! :)

zzzzz - books wise, 'diet, intervention and autism' is an oldie but a goodie, by Marilyn Le Breton. Also Natasha Campbell-McBride's GAPS book. Karen de Felice's book on dietary enzymes is also an interesting read.

PrinceRogers - I am glad your dd has found some comfor and relief. It is good to hear

Galena - gf/cf is a gluten (wheat, oats, barley and rye) and casein (all dairy and derivatives, eg whey powder etc) diet, but also MSG, and all colourings, flavourings and preservatives and artificial sweeteners. It means that mostly I can buy fruit, veg and meat in supermarkets

'Diet, intervention and autism' was the book I read, Silverfrog, so definitely an oldie. I found the style of it a bit that word again evangelical.

Zzzzz the thing about doing the urine test first is that it should give you a good indication whether the GF and /or CF diet will have any affect. At least, that's the theory. Large spikes of peptides in the casein area and/or gluten area should indicate whether the proteins are causing a problem. My DS's results were always marginal. IIRC casein leaves the system quite quickly, 2 - 3 weeks should be long enough to see a change, more like 6 months for gluten. But don't reduce them until after you do the urine test to make sure you get a clear result.

The gaps diet book is very good.

My mum is coeliac - only dx recently and I am pretty sure I am wheat intolerant too.
I am planning on making changes to my diet and seeing what happens.
I may even do an exclusion diet.
Good job I like chicken!