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.

Light...yes.
It's all about targeting the help.
Pretty pointless otherwise.
Mrz...you are wasting your breath I fear.....:)

Good.
Glad it worked out for you.

mrz - thats v interesting, what sort of supplements did the nhs suggest? did they help your child?

no I think it's a very important point Hothead you are making, bout focussing time and money, both of which are in short supply with a young child with SN.

I have done my best for my child and it has helped enormously

She has a statement which provides her a place at an outstanding special school (state) where the focus is on challenging the children, whatever their needs.

She has complex needs, and I'm sure that she will always need special school, but now in year 2, she is a very different child to the preschooler who was statemented. She has brought home 3 certificates for getting '10 counters' for behaviour, this term. When she was a preschooler, they couldn't even keep her in the room, and county advice was simply not to even try, just let her do what she wants. Her school said 'oh dear, she'll find it a bit hard at first then, because if we say to sit down, that's what we expect'

She is recognising some letters, can read isolated words (kipper, chip), can identify shapes, and can name some properties of materials.

It might not sounds like much, but it is huge progress for her. She's actually quite intelligent, she's just also got learning disabilities caused by a not yet classified, likely genetic, disability.

TheLightPassenger the supplements recommended were at that time only available in the US but from my understanding they were basically those Indigo has often mentioned here now widely available in the UK.
I don't know if they would have helped long term as he refused to take them after two months. The diet certainly helped and was as, if not more effective, as Ritalin in my son's case.

It sounds great Lougle.
Small steps...
I sometimes post in the support thread about ds1 and anyone else I am sure would think
"So what?" But on that thread they know that each piece of good news, each milestone met is such a big deal.
That's why it means so much to me and others.
To have a place where people are genuinely as delighted as I am about ds1s progress.

Mrz...it's still really hard to get supplements for kids that haven't got sucrose/aspartame etc in!
It's disgraceful.
And of course...they cost more....

thanks for the reply mrz, glad the diet stuff worked.

Mrz...the diet meant my son was spared unnecessary surgery!!
Some of this stuff is so simple it makes my mind boggle and then get upset that we didn't do it sooner...:(

I was very lucky. I made it clear that I knew why the Ed psych was saying what she was saying (she went pale when I mentioned high/low incidence statements, and spluttered that it shouldn't be the concern of a parent). I made it clear to the area inco that I wasn't going to wait until January for her to apply for a statement, so I applied myself in September. I wrote a 34 page parental advice document, detailing each and every difficulty DD had, and how it would impact on each part of the school day.

I got special school without a murmur, despite all reports saying that mainstream with support was envisaged. But I had also made it clear in my PA that I would only accept MS if she had 1:1 from the moment she stepped onto school grounds until the moment I collected her. She needed it for her safety.

I know, though, that there are lots of parents who have done exactly the same, yet still had to battle for years.

Yep.
It's a lottery for sure.
And if your child only has milder problems like mine it's even harder...

" it shouldn't be the concern of a parent"
Well, there it is in a nutshell.
The attitude of professionals towards parents of kids with sn.
Awful.

I am sorry to see Indigo go. Perhaps it could have been handled more sensitively by MN.

Indigo was always very helpful to me when I was first on her, though I have read less of her posts on main threads as she has become more involved in the TH business.

I absolutely believe that people should express their opinions but in that context - they are opinions and not definitive judgments.

I avoid the TH completely. I posted there once and was completely flamed. I raised the significant issues relating to the guy running TH and the theories he puts forward. This led to him being subject to professional action on ethical matters due largely to the fact that he holds himself out as a clinical expert when he is not. Neuro chiropractor or whatever he calls himself is a meaningless term. He is certainly no doctor or clinician.

This does not mean, of course, that people shouldn't give him their cash if they want to or believe what he says but a full, round picture is important. That was not acceptable to those on the TH thread and I never revisited.

I ignore the thread but it irritates me that it is there promoting costly, unproven, alternative strategies - unchallenged as to challenge it leads to a nasty argument.

i believe any intervention worth it's salt should welcome challenge not suppress it. Just as I challenge the worth and measurablity of my son's OT and SLT provision, I would expect any intervention to be able to explain and justify its costs and evidence base.

No, badvoc. I have done my best for my child and it HAS helped. He's gone from a violent, hyper, uncommunicative child to a model pupil who is in the top 20% of ability for his age. Through education, SALT, OT, CAMHS provision and meds, and a bloody good Statement that I fought hard for. I have not failed him, any more than I believe other fail for going the TH route.

But that 's the difference between me and Indigo. I believe in different routes, and that there is no one best way.

Please stop the passive-aggressive nonsense that anyone who challenges must be jealous. My child is also doing great with the route that I chose.

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

Huh?

My son has 'ASD' he is autistic, he has autism

Technically, there is a difference- the ADOS test, for example, defines milder scores as ASD and higher scores as autism. In practice, ASD is used interchangeably as a dx that others would dx as autism.

sickof - thanks for explaining that. I wasn't aware that asd was used in some contexts interchangeably with hf/as.

Yes it is used interchangeably now. When ds was DX April the Asia scores autism cut off and asd cut off scores.
The report itself tells that he fits criteria for asd and further down says aspergers.

Ados!

It's a spectrum & the new diagnostic terms & criteria don't help as we aren't familiar with them yet. They are only giving 2 labels now autistic spectrum disorder & Autistim. One is just further down the scale than the other & both are used interchangably in everyday language by the profs we all access for services. Confused the hell outta me as on some of the current diagnostic tools DS scores borderline for one part of the triad, but on others he sits firmly within proscribed clinical levels. It'll be really interesting to see how the assessment tools etc are all adapted to meet the new diagnostic criteria coming out next year.

TH talks about development prior to 4 months being critical. Ron Pauc may well be right - but no professional ever looks at babies this young for what we know are often v.subtle indicators of developmental issues. First time Mums without any family history don't even have a reference point against which to raise any concerns that do crop up at that age.