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.

You want indigo to get the recognition she deserves? In what way should she be recognised? For what reason?

Badvoc - DS(2)'s primary school has an early bird club set up in conjunction with the CPOC clinic at Colchester who trained the staff in delivering exercises. It was set up by the previous head but is not supported by the present head and is often cancelled with no notice and parents feel that it will simply disappear. Whereas in this area GPs used to be able to refer to CPOC they no longer do so - they question effectiveness and insist that regular opthalmologists are consulted as a first step - at private cost of course. The CPOC clinic no longer dispenses and is much impoverished. What makes you think that this will be the way of the future?

In the future if this line of "banning" continues all I can see happening is a whole load of mothers talking nappies and hugs and kisses and a there there hope it's all better soon........

Parents will be worried about posting their achievements to benefit others for fear of being classed as an expert and complained about.

I don't "do" TH and ds is on meds but he is still getting the supplements along with it and now is on a med every other day due to my personal choice as I don't want him on them.

Now in the near future I hope the sups work and he is off meds. There is two ways of saying DS is succeeding, either it's the meds started to help him to take a breath and learn coping strategies or its the supplements that are giving him the benefit. I personally don't give a monkeys which one it is but will have a go. Not because indigo the "expert" has told me to do it but because I am my own person and indigos posts as a "mother" have given me ideas I wish to follow.

If this site ends up with tea and biccies talk then its going to be of no use to anyone.

I still would like to see indigo back.

People don't have to be talking nappies and biscuits. It is possible for indigo to send a similar message without overstating her case, and without critically challenging posters for following conventional advice.

We all fight for it children.

Lougle my stupid phone responded to the report button not reply button. Don't think it's gone through but if it has its just a case of trigger finger :)

Yes I agree we all fight for our children and the majority of our waking hours is fighting no matter which route we go down x

I just think that ppl who are either sensitive to a situation need to think that others posts are not personal attacks on their motherhood and we are all able to spell out on here when we are offended in anyway and resolve it ourselves without reporting someone for expressing views.

Keeping...Because there are already trials going in schools.
I am sorry the current head does not support the group.
My sons HT thinks I am quite mad and yet since his return to school 4 weeks ago she has been handing out certificates and awards to him quite happily :)
That has always been such a problem wrt provision for kids with an/sen...it's so archly and all too often dependant on a single person such as a HT and if that person is not forward thinking and progressive then it's tough luck for the kids
:(

It's the cure terminology that sticks I think but if indigo believes that who are we to judge? They are her children. I don't believe in cure but I so believe in improving coping and well being.

Schools are a pain and a lot of the time it's too long a wait. I see no problem with attempting new things whilst waiting but that is me alone because I hate sitting still others are happy to follow their own path and they know their own children best.

Quite often there is a post on what can we do to improve.....

I read about therapies and such that costs money and yes gutted I can't afford it but don't go reporting the poster because I feel down that I can't do it.

Coff.
Yes I see that.
It's a tricky ine for me and I don't express myself very well but this is the way I see my situation:
My sons life was being made hell due to his sn/sen.
I won't go into the whole sorry thing as I would be here all day and I have posted about it before.
He has done a course of ait, rrt and is now following the TH programme.
Some people think these things are very alternative and a bit Whoo.
Prior to having a child with sn/sen I would probably have thought the same.
But.
After years of my son being failed and in some cases downright neglected by the NHS and LAs responsible for his care I realised I had to look elsewhere.
Thanks to indigo I researched these therapies and decided to try them.
There were no guarantees. There never are in life.
We have spent a fair sum I guess (but have had help from GPS) and it has of course taken time and commitment at times (not so much now)
We began these therapies in march last year.
Since then ds1 is finally realising his potential. The potential that has always been there but hidden by the prison of his severe dyslexia/OCD/asd.
Do I think. He is cured?
Honestly?
Yes.
Ha brain and eyes now work together and his convergence is gone he is no longer hyper sensitive to noise. He sleeps better, eats well and is no longer on the NHS waiting list for exploratory surgery for his bowel problems.
Since this time last year he has moved up an ability table at school in all subjects. He can now read and write well.
He enjoys his life now. He believes in himself at last.There are few things more distressing than a 5 year old child weeping and telling you they have "a stupid brain" :(
I had to help him. No one else would.
However, if I hadn't been desperate I would never have gone down this route and I am sure indigo would say the same.
Does that help?
If people are offended that I think my son is cured then I am sorry.
But I am not sure how else to describe it.

coff33pot I think it's down to semantics. Indigo calls it a cure because the difficulties her children have had all their lives are no longer a problem for them ... what would posters like her to call it?

Frankly the TH stuff has got to seem a bit cult-like, as people with info from other sources quietly drifted away. That's no criticism of the people who have benefited from TH by the way, just a regret at the loss of a potentially much, much richer discussion.

What upsets me most about the whole TH thang is that over the last few months it's actually totally stifled debate on this board on a range of really interesting areas that could help lots of posters with various issues. At one point I was learning LOADS, as people posted links to really interesting research papers etc.

I'd like to see the discussions open up again as TH is only ONE supplier iykwim. I happen to believe the field is too damn wide for anyone to have the "complete answer", (& no I do not believe that last comment to be a cricitism of TH or those families that have benefited, esp as TH itself admits it cannot help ALL children or difficulties). If you believe in the theoretical foundation of any aspect of the treatments that TH offers then you have no reason to objecting to more in depth discussions such as I'm trying to suggest we attempt to resurrect.

I'm so fed up with the evangalistic jingoism on just one clinic & 2 books by the same author that I'm gonna take the time to list some of the other potential thread search terms that have died away in the last few months in the hope that the discussions will once again open up.

1. Dietry Interventions

I personally found the GAPS diet book actually explained more about the link between neurology and the gut in simple non-scientific jargon than any other I'd read in over 20 years of having a personal interest in this area. The Sunderland protocol is another "supplier" and actually this is based on clinical research that is still ongoing at a major UK University - what happened to these threads? There are other experts on the link between diet & neurology in the UK and it would be fantastic to hear more about their work too.

1. Physical Therapy

Retained reflex therapy, astronaut training, developmental versus functional OT, vestibular training, computerised visual tracking therapy, behavioral optremetrists, sensory intergration training, auditory integration training. That list is just some of the buzzwords a parent looking for appropriate physical interventions to help their child.

Wouldn't it be nice to see some of these split out and discussed individually once more so that people who do only have enough cash for one option or are based in the wrong location can choose the most appropriate for their circumstances?

Bochead.
The TH support thread is for those of us following TH and those interested in it.
Frankly if you want a broader field of discussion then go and do the research!
The clue is in the title...support thread.
For those of us who have taken this - big - step.
If you feel it is cult like then start another thread detailing what you have said in your last post?
I have always maintained that ds1 did very well on both ait and rrt and have posted links for both many many times
TH is what we are doing NOW.
And I am delighted with the results.

Badvoc frankly if people are offended then its tough on them x

I don't find it offensive or wrong and I was badly trying to explain that some people do battle about the "it can be cured terminology" as opposed to "it can assist with this issue" or "it can allieviate symptoms of" it's just words and the way it is put iyswim.

You have done marvellous and so has your ds and I enjoy reading the TH achievements I wouldn't use the word cure but I wouldn't tell another parent they can't use it if that us what they truly believe which is why I feel indigo should have that right also :)

That post was started an hour ago and finished after a tesco shop lol I forgot to post send!

Hothead.
Yeah.
That's what school kept telling me.
For years.
"Oh he is a summer baby, he will catch up"
No concern over his many many other issues.
I agree in some cases immaturity can cause some developmental delay but it was utter bollocks in my sons case.
LAs will not assess for dyslexia until at least age 8 here.
And - this is just my opinion of course - that's at least 2 years too fucking late.
Also, not all the interventions are expensive.
Expensive means different things to different people of course.

Coff..I keep popping off to do jobs too. :)

Wrt indigo I dint want to speak for her but I know that 2 years ago she, like me, was desperate to help her son.
She was sure she would end up home schooling him as she felt he would never cope with high school due to his asd.
(Indigo has posted about him many many times)
He started high school 3 weeks ago and is fine.
She, like me, is thrilled.
The scary future we saw for our kids is no longer there.
Their future is bright.

I was doing head sprout when da1 was 5 too!
I really feel that he needed to do ait and rrt before TH.
It's been a process we had to go through I think.

...and for me I had a bit of an epiphany of sorts..
School can't help him.
They dont know what dyslexia even is let alone what to do about it!
Once I realised that they can't help rather than they wondktn help it all got much better for me.
I was less angry and just got in with it.

But nobody can block other posters from posting. You can call it a support thread, but if people wish to come along and question or even challenge, then surely if it's robust enough to stand, people can intelligently answer, rather than being aggressive and rude.

I was horrified that a school would put in place an intervention on the say so of a parent (whether governor or not) and then discuss whether to give fish oils secretly too. I was similarly shocked that the school had discussed the difficulties of the children the intervention was aimed at (even vaguely). I am a parent governor at DD1's special school, and the children are all afforded confidentiality even though it's obvious that all the children there are struggling with education.

Everyone is welcome Lougle.
But it's a bit odd to post in a thread and then call it a cult?
Whatever.
The thread is there and will continue to be so.
However much it pisses some people off :)

There's a level of aggression towards queries not found on other threads tbh.

I shared the horror at the idea of interventions being implemented without parental knowledge or involvement. Put me right off going to TH & sent me looking elsewhere for a more ethical supplier tbh.

We don't always know the answer I guess bochead.
You are entitled to your opinion obv wrt ethics, but I have no worries on that score.
And I have actually been to TH and met Robin.
There are things that go in in schools that worry my much more tbh.

Oh, and every intervention my son has had at school .(all shit but never mind) I was never informed of...that includes my son being put in the sen register and having an ISP...had no idea.
He did an intervention in year 3 called switch on.
?
Still dont know what the point was. He had a plastic wallet with cut up sentances in?
Anyway.
Your kids are doing interventions at school that you dont know about.
Trust me.
Up til end of last term ds1 was having s&l group every week.....!
Still don't know why and when I asked they didn't really have an answer.