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.

" Badvoc Sat 29-Sep-12 20:54:03

Everyone is welcome Lougle."

I beg to differ:

" IndigoBell Sat 31-Mar-12 07:38:55
If I depress you so much, stay away. Stay away from this thread and from me."

In response to someone's concern about parents not being informed of treatment.

" IndigoBell Fri 06-Apr-12 08:12:27
Moondog - Ethics is a very interesting and complicated topic. Why don't you start a seperate thread about it. "

In response to Moondog raising concern.

" IndigoBell Fri 06-Apr-12 12:27:52

RunningGal - if you want to debate the ethics of not helping children when you can, of using permission slips to reduce and restrict provision - fine. But start another thread on the topic.

If you want to join the large 'I hate Indigo' club - fine. There are loads of old threads you can resurrect to add to.

I no longer post on SN, besides in this thread, because I'm so sick of being bullied and attacked.

This thread is for people who are doing Tinsley House, or who are considering it and have questions about it.

If you're not doing TH - fine. But please don't post in this support thread. "

In response to a one-sentence clarification of concerns by RunningGal

" IndigoBell Thu 12-Jul-12 10:30:42
If you have personal bad experience of TH - please share. But if you get all your facts from the BDA, bad science and the daily mail - please take your ignorance to other parts of MN where it'll be welcomed. "

In response to a dyslexia tutor.

So, I think just from that one thread, it's obvious that people were only welcome if they went along with TH therapy.

See I don't read any of those comments in a bad way. It must be either just me or because it is just a list of single comments.

Asking someone to make another thread about their concerns is fine to me as I look at that comment to merely be saying don't choke up a TH support thread but make another for a full discussion? Tonwhich I assume she would have joined in separate to the support thread.

As for saying she didn't post on an anymore......she didn't. She chose not to leave herself open to comments that were upsetting. Which is the best way to deal with things that upset you . If it hurts block it out and carry on :)

Well I guess at the end of the day, we can debate all we like. It's MNHQ's site, it's Justine and Olivia's living, and they choose the rules. If anyone doesn't like them, they're not compelled to stay. We can't tell how many reports there were, or for what reason. All that is clear is that when MNHQ approached IndigoBell she told them to take a hike or ban her. They banned her.

and they've responded to complaints from posters

Lougle is far more eloquent than I & has given some great examples of why it became a bit "cult-like". That I think is the wrong word, but I'm too sleep-deprived to come up with another at the minute.

Normally discussions just seem so much more balanced & just plain friendly on this forum. After all it's where we all come for a bit of emotional support after yet another battering from the "caring carrots" in RL. (or even the mainstream forums of MN itself!).

For a specific example - If you compare it to threads on Daphne Keen where there is almost universal acknowledgement that it's hard to get through to her secretary and that some posters have found her reports inconclusive then perhaps you'll see what I mean. Overall consensus is that DK's fantastic, but room is allowed in the conversation for people's niggles & queries to be aired, discussed and for posters to reach their own conclusions without effectively being told to go away.

For the record I've not met Robin face to face, but I have talked on the phone.

They've always responded to complaints of posters. It's what the report button is for. They choose to have a low moderated site - they don't moderate as such, but if posts are reported, they take a look.

They won't have contacted Indigobell without good reason, and had she said 'ok, point taken' and then continued posting, there would have been no issue. It's simply the fact that she told MNHQ she'd rather be banned. They've stated that if she would contact them to discuss, she can come back. She refuses. What more can they do?

See there's a clear example of you taking a remark totally wrongly Lougle

I didn't 'take it wrongly'. It was a remark open to interpretation . This isn't about me, either. I didn't report any posts from Indigobell. I don't know who did. I do know that I saw many of her posts and felt them to be aggressive and uncalled for, so it didn't surprise me when someone said she'd been contacted by MNHQ. The fact that she was banned was her own doing from her response to MNHQ, which was posted by them.

No Lougle.
As I said unthread indigo and I have been called names, been told what we are doing is harming our kids and that robin is unethical....all from people who know nothing about TH and never will. And MNHQ allowed it.
Am not going to post anymore as it seems a bit pointless to just keep re hashing what I have already said.
And is it so odd to ask someone to stay away form a support thread when they are not being supportive?
You wouldn't say it was ok if it was a mc support thread, would you?
As far as indigo and I are concerned many issues lIke dyslexia, OCD, asd are aomething that TH can either really help or eradicate.
We see the proof every day in he kids.
We hear if great progress from others and inspirational stories.
I guess some people just can't deal with that.

Because it is a LIE to say that autism can be cured. A cruel lie. Your word eradicate is no better, btw People don't have an issue with people saying 'wow, this has helped my child so much'. People have an issue with the evangelical lies that some vulnerable parents will accept and swallow , washed down with a dose of indigo's 'you are failing your child if you don't', with a pinch of aggression when challenged. I'm ok: I know it's a lie and I know enough to be able to say that I have not failed my child by focusing my energies on a Statement,OT, SALT etc. I'm also grown up enough to say my piece, rather than running off to report it.But some parents aren't me.

Robin doesn't say he can help autism.
It's asd he can help which I am sure you know is not the same thing.
Indigo and I tried.
We tried the NHS,
And the schools and the LAs.
They all failed us.
As for being cruel?
I think it's cruel to tell people that everything will be fine if only they apply for SA and fight for years and spend ££££.
You and I both know that even when kids get statements you still have to fight to get them implemented.
There are at least 3 posts in MNSN ATM with exactly this problem.
However, like you I am very happy and confident in my choices for my son.
You fight away.
I will carry on doing what I am doing.

It's pretty depressing actually...my first posts in MNSN about my son all said the same thing...apply for SA. They always do.
Even though SA for dyslexia is pretty much impossible to get.
I paid for an EP assessment myself as I would not wait for the school and til my son was in year 5.
Had him assessed by a private paed. Didn't go down the dc route in the end as we had already started TH and massive improvements were already starting.
No one except indIgo says:
Well actually SA is incredibly hard to get and your child must have quite severe issues and even then it's a nightmare to get it implemented.
Here is an alternative.
Might not work, but give it a go!
I refuse to spend years of mine and my child's life fighting for patchy, non targeted provision which won't be implemented anyway.
I am just lazy I guess :)
Anyway, really a, off now.
Ds1 wants pancakes for breakfast :)

I agree, sickof... The guilt parents already feel that their child is struggling. The battle they face to even get the dyslexia or ASD identified. Then to be told that if only they did this and that. With no real evidence to back it up.

You say it doesn't cost money. £4 for a book. Has it occurred to you that a high protein breakfast is expensive all on its own? Baked beans, sausages, eggs, fish -there are parents who can't afford to feed their children that sorry of thing in the evening, let alone for breakfast. Vitamins, etc. Well I'm on my phone, but I think I read a thread suggesting the various vitamins were 'only' £40 per month. Then, parents who see robin pay £350 for a first appointment, £250 for the second, £75 every 8 weeks after that. TH takes at least a year, according to indigo. Then, for parents who live far away, there's the cost of travel and accommodation. Add to that the software. I mean, what parent is going to pay all that money, then turn down the vial software which is a one user license? So, if you have two children, double the cost.

ABA is controversial and expensive. Parents often go to tribunal to get it in their statement. They sometimes win, because they show that nothing else works for their child.

How many people have got TH added to a statement at tribunal? How many have even tried? I'd be amazed if the number for either is higher than 0.

vital*

'Here is an alternative' coupled with 'it might not work' is fine. Can't you see the difference between that and the cure talk/ there is only one route to avoid failing your child stuff ?

The supplements cots me £15 per month but some children can't/won't take the ones robin recommends so their parents go for alternatives.
Re food...yes I see what you mean but what is the alternative? Keep feeding your kids carb based additive based crap?
Read the diet myth by dr John briffa....a real eye opener.
I think people who go to TH like me and indigo have opted out (my term) of the NHS/LA system so adding it to tribunal wouldn't ever really happen....
Since we started TH dh and I have both oat weight too (much needed)
It's just ridiculous.
It's just a healthy eating plan fgs, and yet it's "evil" because it costs more to eat well?
Sigh.....

You know what?
I'm sorry.
You have done your best for your kids and it hasnt helped.
That's crap.
But I am doing what I feel is best for my child and it helping...enormously so.
I can see why that would find that hard.
Am going to stop posting now and head on back to the support thread.
Good luck to everyone.

Oh and I don't feel vulnerable just because I am the parent of a child with an btw.
I am a working class northerner with a pretty well honed bull-shit-o-meter.
Don't you worry about me :)
The only time I felt vulnerable - and it was for years - was when I was relying in the NHS and LA to help my son.
Now I have opted out I am just fine :)

"Robin doesn't say he can help autism.
It's asd he can help which I am sure you know is not the same thing."

Hothead.
Yes i take your point. I bought Sally Godard blythes book and it was good but I wanted ds1 to be properly assessed as I and my gp felt he could have sustained brain damage as a result of prolonged jaundice as a neonate.
Light...yes?
True autism is not the same as asd.

I confess I know virtually nothing about TH but 20 years ago I was paying much more for supplements for my son on the recommendation of a NHS doctor. We also followed the diet under the supervision of a NHS paediatrician and specialists dietician ... did my food shopping cost less because my son was on a diet to improve his ASD/ADHD under the care of the NHS than it would if he was on the same diet privately?

Hothead - my own adult experience of CBT is that my issues were too severe to use the high quality self help material available, I had to pay for a private clin psych, but he was excellent. There is a place for professional involvement that costs ££ but it has to be carefully targetted.

Hot head.
Every child is different...the neuro exercises ds1 did were targeted to his specific areas of weakness...in his case vestibular issues.
Not sure just doing activities could help?
Ds1 did plenty of activities....