I've been banned again!

[SadIndigo]

FFS. MN HQ has banned me again!

It appears there is one rule for everyone else on MN and one rule for me.

Apparently you're allowed to discuss everything on MN - except how to cure dyslexia. :( (Because apparently that subject is distressing to parents of dyslexic children)

So, I lose the support I need.

And MNers lose information about treatments that work for dyslexia.

I've made some good friends on here and provided and received lots of support and information and advice.

But this time I'm really going. MN HQ are a law unto themselves and they can't be reasoned with.

If you post nasty replies to this thread, please be aware that of course I will be reading them, and of course they'll hurt.

Indigo Bell

I thought we didnt do bun fights on MNSN!!

No matter what anyone else thinks indigo has given great advice to many people on here.

Nobody forces anyone to take the advice.

I do sometimes feel gutted that I am not in a financial position to try any of these therapies but thats not indigos fault.

Good luck indigo whatever happens and fwiw we are just about to embark on a gf diet for dd3 to see if we can sort out her pooing once a week issue.

I'm far too tough to have ever been upset by any of it. My ds's autism has been 'cured' by Statementing and traditional input to the same extent that Indigo's dd's dyslexia has been 'cured' by TH I.e not cured but improved beyond all recognition. Do I go round berating TH believers for not trying Statementing, SALT etc? No.

But some parents are vulnerable to guilt and huge promises. It is for that reason that I object to your posts, Badvoc, and presumably why some object to Indigo's.

I have put on the new 'cure' thread how the posts appear to me. As I say, personally I have no regrets about my chosen route. My son is amazing in his transformation, but my route is not the only one. I hate the implication to new or vulnerable people that their parenting is at fault. AND that they're choosing for their child to have SN if they don't choose TH.

It just seems such a shame, when so many of our children have a different perspective on the world, and we fight for them to be accepted for it, that we can't be accepting of others opinions/perspectives.

Amberleaf - I see your point with everything you say, except your point about accepting diagnosis. You seem to imply that that Indigo doesn't....I disagree strongly with that. She like many others on this board accept the diagnosis, but do not accept there is nothing they can do to help their DC, and will look beyond the mainstream to find things/try things that may, or may not help there DC.

For many GF/DF diet helps their DC, for mine, it made no difference, would I tell someone not to try it - no, because for some children, it really does help them. Will it stop me trying other things - no, as I accept my child has dyspraxia, but I don't accept that I can't make things easier - better for him.

Aggressive?
No.
Just simply stating the truth as it pertains to my situation.
I am sorry that you think that me stating that my sons dyslexia is no longer a problem = aggressive.
And it's not TH mums against the world!! The TH thread is a great pace for support, tips and advice. They are a wonderful bunch of people.
I was vulnerable last year sick....so vulnerable I paid myself for a useless EP report because that's what everyone in MNSN advised me to do....I should have just put my £600 in the recycling bin frankly for all the good it did.
I realise that not all EP reports are rubbish, but my sons was. The dx of severe dyslexia did not mean anything in real terms...he got no more interventions or help, no 1-1 as was advised, nothing.
So.
I opted out of the whole school/LA system and its has been a massive success for us.
But I am not allowed to say so??
Why is that?
This isnt a bun right.
This is - yet again - people assuming that anyone who doesn't apply for SA, fight the LA and school for years and spend ££££ doing so is wrong.
Btw, I have also done ait and rrt with my ds1 as well as TH and would recommend them all unreservedly.
Sick...can I ask you a question?...if my son is removed form the sen register (as seems likely next year) how would you phrase his huge leaps in the last year?
If not cured, then what? What is an acceptable term to you?

Mrslaughen...a very perceptive post.
Thank you.
The only thing I want for my son - for all our kids - is that they are able to fulfil their potential.
My son is now working to his potential for the first time since he stared school.
He is 10 next year.
I really do not care whether people think I am "deluded" or "gullible" or in a "cult" - all insults that have been thrown at indigo and myself in the past by people on MNSN...

I am not going to post in this thread again.
I have said all I have to say.
Good luck to all of us travelling this road x

Sickof you are right. Strong sense of deja vu about this banning, I agree it was inevitable.

There is absolutely nothing wrong with trying TH methods if it floats your boat (and surely it all has to be about 'belief' since I am unaware of any scientific evidence supporting it) but there is everything wrong with saying that TH is the 'cure' and everything else is 'useless'.

And this is the bottom line. If Indigo had said things like 'some people find TH helps' or 'you could also consider this' then there would be no problem. Acknowledging other people have different views is key to being supportive. Badvoc seems to think that because she agrees with IB then ipso facto they are both supportive but I am sorry this is naive and incorrect, MNHQ and many of us here can see what IB and Badvoc cannot.

The recent thread was a classic example: the OP asked about access to Ed Psych assessment and IB in a nutshell said "Ed Psych is useless, go gf and cure instead". This is an either/or stance. It is not supportive because it doesn't acknowledge where the OP is at.

IB is clearly passionate and wants to help but is unable to 'accept' other people's approaches and will therefore will have a hard time influencing them. This is a shame. IB would be better off on TH sites/threads where she can share her knowledge and experiences without coming across as evangelical and unsupportive.

I hope she goes quietly because flouncing is never pretty.

Handywoman x

^I have seen the e mail mnhq sent to indigo amber.
They stated that she wasn't being banned for the same reason as last time.
So...what is the reason?^

I have no idea, I havent seen the email, nor do I know where MNHQ are coming from with all this.

Amberleaf - I see your point with everything you say, except your point about accepting diagnosis. You seem to imply that that Indigo doesn't....I disagree strongly with that. She like many others on this board accept the diagnosis, but do not accept there is nothing they can do to help their DC, and will look beyond the mainstream to find things/try things that may, or may not help there DC

I don't know, I just think of the person with the diagnosis and how they feel.

I know there are things I can do to help my son, I know I can help him learn ways to cope with societal expectations despite his difficulties. But I know I can't change the way his brain works and it does work, just differently to NTs.

He is not broken, he doesn't need fixing.

I do take on board what you are saying, but I will say that IMO accepting a diagnosis doesn't = not wanting to help your child, which is sort of implied too.

I don't know, it's difficult.

I am not totally au fait with the background so I am musing in general - not having a go at anyone.

I just find it hard to see how many people who could post positively to help each other, chose instead to post in a manner that seems all about being right.

If you want to support someone then you consider the impact your words have upon them. If you wish to persuade and encourage, you don't try to prove them wrong.

I think my sons autism is specific to him.i think there are many different types of autism so why should there not be different types and presentations of dyslexia etc. and if each version is different, if each child is different should we not contemplate that no one thing will help all our children.

When ds1 was small I was told that aba would save him, would cure him. I tried and it didn't. But the guilt I carry about tht lives in me today, 14 years later. In my head I know I tried but all the glowing 'brave mother who refused to give up' success stories made me feel I just hadn't given enough , sacrificed enough.
Then I was told gfcf would cure him. I tried that and it hoped enormously. But he remains profoundly disabled and late at night my guilt remains huge. It is a fight to forgive myself.

We are mothers (parents/fathers/but mostly mothers) who live lives tinged with grief and sadness. We fret about the paths not taken. We struggle to find the thing that helps and blame ourselves if it doesn't. We often do this exist trying to maintain a happy home life for our other children, for our partners and for ourselves.

I have some suspicion that the Tinsley House approach may help many. But help should be a branch offered not a stick to beat each other with.

Perhaps if we wrote to each other with more kindness and less determination to be right. Our children should not be an argument we want to win and screw other people's feelings.

This whole thing is pretty sad tbh.

This is - yet again - people assuming that anyone who doesn't apply for SA, fight the LA and school for years and spend ££££ doing so is wrong

I don't think that though.

I think it's fine to do that if you want to, I wouldn't knock anyone for their chosen path.

I just think it's off to knock those of us who either don't want to take your chosen path or can't afford to.

Pegwatch = nail on head.

Badvoc, I would say he has improved massively, and that is great. I also agree that Statementing isn't the only route. That's my point! There isn't just one way. We absolutely should be accepting of other viewpoints and saying that TH is the only way ISN'T accepting.
Zzzz, maybe being told you're choosing the wrong route hasn't happened to you, but it has to some.

I would just like to take the opportunity to say a BIG THANK YOU to Indigo. She was behind me all the way with my issues with my DD. She gave me amazing advice and because of that I have now won for my daughter to be assessed. It as taken nearly 2 years but I am on the right path. What happened to freedom of speech, surely you either take the advice or you don't. I personally had mixed advice when I started this journey. I was new to it all and some advice did upset me (not all) but I didn't listen to the negatives. Anyway good luck Indigo, Massive Thanks and have a great Christmas.

Indigo needs to have this discussion with MNHQ. It's not about popularity

It's very simple. MNHQ own and or run MN. They are entitled to say what is acceptable or unacceptable. They told Indigo to stop claiming cure on the forum. She didn't.

Whether the methods used by Indigo resulted in major improvement in her DD or not is irrelevant. You cannot go around saying something cures dyslexia when there is no independent research to suggest it does.

If you stuck to the facts, which may be 'some children have food sensitivities or sensory issues which present as dyslexia type symptoms. Those sensitivities/sensory issues, in some children, may be helped by dietary changes and exercises. For some children the result will be that the dyslexia symptoms will be resolved.' then everything would be ok.

Yep to lougle.

Madprest, it's not advice when you're told that what you are doing is wrong.

Personal experience is not the best way to determine whether a method works. When someone feels better after having used a product or procedure, it is natural to give credit to whatever was done. Most ailments are self-limiting, and even incurable conditions can have sufficient day-to-day variation to enable some methods to gain large followings. In addition, taking action often produces temporary relief of symptoms (a placebo effect). For these reasons, scientific experimentation is almost always necessary to establish whether health methods are really effective. Individual experience rarely provides a basis for separating cause-and-effect from coincidence. Nor can the odds of a treatment working be determined without following participants in a well-designed study and tabulating failures as well as successes.

A good example here:

DD1 has been out of daytime nappies since she was 2.5. She literally got it over night -I said 'you are a big girl now. Big girls don't wear nappies.' Night-time just didn't happen. Finally, 4.6 years later, she has just had 4 nights in a row without nappies and with a dry bed.

If I had started a therapy which aims to improve such areas, I may well have thought the therapy was responsible, when in fact she simply matured. She has enough understanding now, that I can explain that we have to say 'night-night bladder' and then as soon as we wake in the morning, we wake our bladder up and go to the toilet.

So what if I say to other parents 'your child will be dry at night if you do x,y,z. If you don't succeed, you aren't trying hard enough'?

Aw, indigo, I will be sad to see you go. Over the years, under my many varied names, a lot of your advice has made a huge difference to my DC's. it's not right for HQ to ban someone because of their belief in a particular treatment, IMO, it would be wrong for them to ban someone for saying that anticonvulsants cure epilepsy, when I disagree because they just CONTROL the symptoms for SOME people with epilepsy, but it's just terminology really!

I will be sorry to see you go.

Couthy I think it's pretty clear that Indigo is not being banned for holding any particular belief. You are mistaken on that.

Attila and Lougle - very good points.

I have a pre-diabetic condition - or at least I did have in terms of manifestation of symptoms and the results of assessments. I no longer have the condition. But, crucially, I am not cured. I learned how to control insulin production through dietary means rather than using meds such as Metformin. But if I stopped eating an insulin control diet, the condition would remanifest. I do not have the manifestation of the condition at present but if I ate a 'normal' diet I would.

Is a gf df diet supposed to fix things once and for all or is it more a lifelong commitment?

If you have a 'leaky gut' you will always have a leaky gut and the consequences would not be limited to neurological development but neurological functioning throughout life imo

I wonder if the key issue is that the neurodevelopmental conditions are not discrete natural conditions. As we are always saying, if you know one person with autism, you know one person with autism. The same is true of all the neurodev conditions - dyslexia, DCD (dyspraxia), tourette's, OCD. They are diagnosed by observing a cluster of behaviours.

Take autism, for example. We know that the behavioural features that result in a diagnosis of autism spectrum (I am including aspergers) include:
Genetics - and the genetics are highly complex and expressed on several genes, and in one family the 'non-NT' manifestations can include a multiplicity - eg one child classically autistic, another with aspergers, another with ADHD and Tourette's.
Brain injury can (does not always!) produce autism symptoms (eg after meningitis in a baby).
SEVERE neglect (think Romanian orphans left alone in cots) can produce autism like conditions
There is a strong correlation between learning difficulties and autism, and some types of epilepsy and autism
Some genetic conditions such as fragile X can include autism manifestations.

If you understand that autism is not a unitary condition, then it is no surprise to find that what is a highly effective 'treatment' for some does not work for others. That is why GFCF works amazingly in some kids, and has no effect in others, likewise auditory integration therapy, brushing, ABA etc etc.

This is also true for dyslexia, which is usually diagnosed when a child has failed to learn to read despite appropriate teaching. They added in the 'despite appropriate teaching' bit because they found that a large number of 'dyslexic' children were 'cured' once someone actually properly taught them how to read, eg through reading recovery. Nowadays they often don't diagnose unless you've had an intensive reading programme and still not made progress. Some dyslexic children have severe memory difficulties. Other have a core difficulty in phonological processing - they can't hear the differences in sounds well (though their acuity of hearing is fine). Others have scotopic sensitivity - the words appear to vibrate or move or cluster on the page. And so on, you get the picture. So what works for you is marvellous, but it may not work for the next person. And that is why there are a range of supports for youngsters, and that is why it is hard to get strong evidence of efficacy, but people swear that this is what worked for their child. And they aren't lying, but they don't understand that these behavioural clusters are just that, behavioural clusters, caused in many different ways, to which someone has given a name.