IndigoBell support thread

[betterwhenthesunshines]

I see from another member that Indigo Bell has been banned from MN. I would just like to say that it was her advice that led me to look into help for my DD. Without that I truly believe she would not have made the advances she has.

Indigo's views mat not have been proven scientifically, but she certainly helped open many people's eyes to alternative ways of helping their children. People could choose to listen or ignore as they wished. She always took time to help people who were stuck and frustrated. I miss her and MN is a poorer place without her.

AT the top of this page Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts.
So I propose that MN reconsiders. Please.

I'm torn on this. I know that I have in the past been quite angered when people have come on the SN board and stated categorically that there is a cure for ASD (or specific other SNs). I think it is misleading and especially hurtful to those that have newly diagnosed children. Why? Because they are still struggling to accept the diagnosis and will sometimes grasp at ANYTHING to change it - even if it may not be the best for their child. I don't really recall Indigo saying this, however, based on the above post it does appear she's walking a bit of a fine line there.

I find it interesting to look at different approaches people have, and I'm happy to see alternative things pop up on the board for info. As long as they are clear it is for info - not coercing or using emotional blackmail (ie if you cared or wanted the best for your child, you'd do this...).

I'll be the first to admit that TH is not for us, for various reasons. Do I want info on TH to stop being posted? Of course not. It seems to benefit others, and as far as I am concerned, if I am not interested in it, I simply ignore the thread. We're all adults here, we're all capable of that.

I think in this instance, everyone has to be willing to compromise a bit. I'd love to see Indigo back - her experiences can only enrich the board, just as everyone's do. But a measure of temperance has to be there as well - posters are expected to keep in mind how they are presenting the information they post as well as what effect it may have on others, within reason. Parents on the SN boards are an interesting mix - and many of us tend to post and respond to posts in rollercoaster fashion, much like our lives - extreme support and extreme anger can be a post apart. We get a lot of bashing IRL as well as on other boards, so sometimes tempers can flare here with little provocation. And we can be cynical as well as vulnerable when something new pops up.

I don't ever recall Indigo presenting herself as an expert, so that doesn't really seem a huge concern. But my biggest concern over this is that it seems to be a sticking point that she is offering advice. That is a huge cornerstone of this board - offering advice as to what has worked for some of us - along with support. If this becomes an issue, then the SNs board will spiral downward. We all offer advice and experiences, knowing that this is NOT in a professional capacity. I think that, as adults, we are capable of understanding this. I don't want to see this become a situation where anyone that offers advice is censored or regarded as putting themselves forward as an expert. It should be noted that the board does state that posters are not experts - perhaps MNHQ can put it in bolder print or highlight it in some way, so if someone complains, they can refer them to THAT instead. There is a huge difference between claiming to have some experience in a situation and claiming to be an expert. It's important to note that difference IMO.

Yeah, I'll shut up now.

But I still don't think that that post would warrant, effectively, banning. Which IS what has happened

No it isn't.

That post and posts like it is what prompted complaints. Which then prompted MNHQ to request she tone it down.

They didn't ban her.

the cure/alleviate symptoms thing is always a difficult discussion.

do I believe other people's stories of 'curing' their children? well, yes, I have read some convincing ones. written by educated people, who set forward clear points on what they have done, and what effects it has had.

have I 'cured' dd1? no, not at all. she is, and always will be, autistic. she is, however, also a very very long way forward from the severely ASD, non-verbal, unengaged child she used to be, and a lot of this has come about due to interventions. we have 'cured' her dairy intolerance via biomed, and are rpobably close to curing her gluten intolerance (only fear stops me challenging this one, as there is so much to lose). her dietary issues brought with them a lot of ASD symptoms, which she now does not have since biomed. those aspects are cured, imo. they have not returned when dairy was re-introduced, so are not reliant on the cf part of her diet (we are still a largely dairy free household, atm)

I do understand why people find the 'cure' side of things hard to listen to, but it isn't always mentioned in an evangelical way. sometimes it can be mentioned in a 'bloody hell, I never knew that was even possible' kind of way, and a 'why the hell didn't people tell me this was possible' kind of way.

There is a balance though.

I know the SEN CoP fairly well. I know DLA legislation fairly well. It is documented, everyone can access it freely on the internet, but some people will be able to see how a particular part of it is relevant to a situation more clearly than others.

I might say (with authority) "No, they can't do that because paragraph xx:yy says " blah blah blah" and that means that they can't say it isn't possible."

I'm not an expert, and I'm not professing to have a special knowledge. I still often caveat any advice with 'I'm not a legal expert..this is just what I've read', but still it is possible that someone might think I'm giving 'expert advice'. I don't think that matters much, because all I'm doing is quoting published documents.

It's entirely different, I think, to claim to have 'cured' a medical condition, then tell other people that they too should do x,y,z expensive therapy to 'cure' their child, when there is no published evidence to say that it is a 'cure', and no linking to any such evidence which may be available.

HONK HONK HONK in support of IB.

I have been on several threads on primary ed where IB was too. The OP was always looking for ways to help with dyslexic type symptoms - as they often felt unsupported at school'cos none of us have been there, eh? . They were looking for advice.
IB gave advice from her perspective. If they didn't want to hear it, then tbh, they shouldn't have asked for it.
IB spoke from experience of her own children, and spoke of many avenues to look into - many on NHS, or free/minimal cost to do as a parent. I have gone down several routes suggested, and have found them to be of benefit. Each on its own may not have 'cured' dyslexia, but they have contributed.
If we are talking being a bad parent, then I also get what IB said. If you know there is a problem with you child, but you do nothing, does that make you a 'good' parent? If you try and try, but can't get help it is a different matter, but doing nothing can hardly be described as 'good'.
I can understand why IB felt offended. I only ever felt she shared her experiences with her peers - other parents. When you put her posts against some of the other crude, offensive and bigoted comments I have read on other MN boards, IB is positively mild.
Oh, and there are 'experts' on the education boards. There are SENcos, admissions experts etc - and they are very welcome and sage. If you don't like the advice they give - ignore it. Feigning offence and complaining is trollery at its worse.

I totally agree with nooka. Some of IB's posts, while well intentioned, definitely overstepped their mark, and the tone portrayed her as someone who has cured their child's dyslexia and so therefore had inherent credibility. This is not an acceptable line to take and intervention from MNHQ was appropriate and inevitable. I applaud them for it.

I have seen such posts from IB and sat on my hands, also. She has sent me software and I wouldn't touch it with a bargepole, not because there is necessarily anything 'wrong' with it, but because I like to see some evidence about the benefits of interventions before getting my dd to spend valuable time on them. I am grateful and touched that she took the time to send it, but I would be mad to blindly get on and do it.

As regards whether IB felt 'backed into a corner' or not ? ultimately she has flounced, as is her right. Sad as it may be to lose someone who regularly took the time to reply to parents here, a line needs to be drawn to protect parents who are vulnerable to the suggestion that they are inadequate (which is practically all of us!) or that there is some 'cure' out there if they just start believing and do X, Y or Z.

Flouncing and honking and boycotting in defence is daft, because the IB has made her own decision and if we truly 'stand by her' we would leave it at that.

HW x

Hi Indigos DH i can state that she will not be back ,she is moving on to all her good friends good bye i am sure she will stay in contact with you.
Bye X

Sorry to hear this Indigos DH, I hope she can take a little time off and maybe return in the future, even under a different name maybe if she wishes to?

"IndigoBell Fri 14-Sep-12 12:18:32

Dysleixa is a medical problem which is totally curable.

It is not an educational problem that can be helped by school.

If you are lucky enough to chose the right interventions and treatments for your child, you can cure him.......

If you leave him to school he will get worse and worse."

I feel that I may have been responsible for provoking this response. There have been a couple of posts to the SN board recently re dyslexia to which Indigo gave her usual response. This opinion remained the sole one and so I posted to say that at the same time the OP should address practical matters regarding support in school. I also half-jokingly pointed out that there are other BOs available.

I have a particular perspective on this because DS1 is dyslexic (amongst other things) and we are lucky enough to live in an area where referral to the NHS CPOC clinic was routine and did not entail an inexpensive or insecure foray into alternative medicine. He was referred in 2008 but not diagnosed as dsylexic until September 2011. My introduction to SN was via retained reflexes, tracking, crossing the mid-point, convergence, auditory processing, working memory etc. Despite the fact that we did the exercises religiously (plus diet and supplements) he is still dyslexic. However, the problems that he has may have been more severe without the intervention. That is, to speak of a 'cure' makes me feel very uncomfortable as the same treatment does not work for every child. However, Indigo appeared to suggest to me that other BOs or the CPOC clinic did not cure DS1 because they did not choose the right interventions - with the strong implication that only TH can do this. This also makes me feel uncomfortable. If I am convinced by the theory underlying retained reflexes or neurological developmental delay then I place my 'faith' in the theory rather than any particular practitioner.

The ideal place to hammer out disagreement can only be on a board such as this if all opinions and experiences have equal validity. This has never felt like an equal debate not because Indigo claims to be an expert but because she believes that her DC are cured and nobody wants to play the role of the big baddie snuffing out hope. But an unwillingness to hear of experiences of these interventions outside of TH is limiting to open discussion. The TH thread is called the 'support' thread and so posts raising questions and misgivings are rather like pissing on a parade. I am interested in discussing all approaches and experiences openly and there has to be space to say 'I tried that and it did not work for my DS - it may work for yours' about the TH and similar approaches just as there is with all other advice proferred.

Just one thing though - before thinking that this is the way of the future we need to learn from the histories of the Dore programme and the current shrinking of the only NHS provision.

There has to be space to say 'I tried that and it did not work for my DS - it may work for yours' about the TH and similar approaches just as there is with all other advice proferred

This, absolutely

Me too, mumsnet please reconsider

I'm sorry, but having read the TH support thread, Indigobell was incredibly hostile to challengers. She roundly instructed them to back off. Her attitude was that anyone who challenged Robin was either deluded, jealous, or threatened.

To be honest, I'm not sure why MNHQ have given this thread so much air time. They usually don't comment on these sorts of situations, and I can see why.

As for asking MNHQ to reconsider, it seems that it's for Indigobell to reconsider. She's been told what to do if she'd like to continue posting. It's not hard - stop portraying yourself as an expert and proclaiming that people who haven't paid out for expensive 'therapies' are responsible for their child's dyslexia.

hear hear, Lougle!

Lougle speaks a lot of sense. I dont think it should be assumed that it's a minority of DA tutors who have complained. I personally have never reported a post or poster but have felt very uncomfortable about the way the dyslexia "cure" business has been pushed on MN lately. And you know they say for every complaint there are several people who hold the same view - and you've no idea what other MNers are PMing each other.

To be frank, any Svengali character that offers you a cure for something that modern science says isn't curable and wants to charge you a small fortune for the benefit needs to be approached with extreme caution. It shouldn't be forgotten, whilst every speaks of us all being adults, that the parents of SN children are often rendered very vulnerable by their despair and desparation to help their children.

I haven't read the thread yet, but would like to express my dismay at MNHQ for banning Indigobell. She has spent a great deal of time helping me and others on the forum both in public and privately through PMs. I would not be able to say that my son had made so much progress without her in all honesty. As with all things on the internet we have to weight up what we are told, but on balance Indigo has been brilliant!

Please reconsider, MN x

Ok, I have read it all now - Indigo - if you are reading this, please come back!

Indigo or info-dh i hope u are reading this - I'm really sad to see you go. You, Ellenjane, coff and stars came back to me one night on my first thread - we'd just had our dx and it was one of my darkest nights ever. You all responded and dragged me back to level ground. I've always been grateful for that. Also thank you so much for the AIT stuff we are going with and again I am grateful.
Take care to both you and your family xx

I don't agree with a lot of what indigo says about dyslexia being curable and diets and vitamins and stuff.
but she has every right to say what she thinks has helped her DCs.

Schools are truly useless in this area and it is understandable that people will seek out alternatives.

Sometimes I have wished indigo would shut up, and let us discuss education based solutions, but I'd never ever ever think of reporting her.

I don't often visit SN so have just come across this thread and I'm truly appalled by MN ...perhaps they should ban anyone with an opinion!

Quite mrz.
It's disgusting and MN to keep bleating "she asked us to ban her!"
When what she actually did was refuse to stop posting her experiences and tone down the facts -as she sees it - of her posts.
It's Ludicrous really when you consider what MN let's slide....
Anyway....indigo is fine and enjoying her break from MN.
In a thread some time back both indigo and I were called variously, deluded, gullible and that we were in a cult!!
But that was ok, obv.....

I would also like to express my concern.

I admire Indigo for standing by her convictions.
MN's role in all this on the other hand disappoints me greatly.

The stupid thing is what indigo and I - any many others are doing with our kids - is not really alternative at all!
How many of us give our kids vitamins? The majority I would say.
How many of us try and make sure our kids eat well? The majority I would say.
How many of us help our dc by using computer programmes or websites like mathletics/education city etc.
I just don't see hw what we are doing is any different to that...the computer programme is just focusing in eye tracking that's all.
Indigo and I have seen first hand how this approach has helped/is helping ours and many other kids.
If other people dint want to listen, then don't.
Its a free country after all.
Or at least it is as long as you aren't on MN.....

I left MN for a while after posting to find some help, support and advice about my ds who has some specific SN. She was first to reply and made me cry at a time when I was very worried about my son. She was very hostile and berated me for being a bad parent. Maybe I shouldn't have posted if not anticipating being challenged but she basically told me he was failing badly and it was all my fault.

I have since been back (of course) but I do now think long and hard about where and what I post...