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

Although everyone is free to talk about their own experiences, I do cringe at talk of 'cure'. I'm not blaming TH for this, but there are undeniably hundreds of snake oil salesmen out there, promising 'cure' for asd in particular, and several parents I know (all with severely and profoundly disabled children) have spent tens and tens of thousands and put their kids through traumatic and painful treatment all in search of that 'cure'. Someone I know has their son on an unbelievably restricted diet and he is visibly wasting away, but still she believes she needs to take more extreme measures as her desperation grows. It's unbelievably sad, and I'm so angry that unethical 'practitioners' will take her money and keep selling her the lie as long as it's lining their pockets.

My son has made unbelievable progress (using ABA), without dietary changes, biomed, or anything alternative in fact. He is also happy, and outside of school we do nothing except have fun with him. So having observed my personal control group (of one) I could come on and spout how alternative therapies are nonsense and how I feel sorry for all those who do not follow our path. But I don't. What we have done is right for ds1 and right for us as a family, and that's good enough for me

Anyway peace and happiness to all on the SN board. I can safely say that it has been a true life saver over the last year and I never fail to be astounded by the knowledge of parents posting on here.

Cats...yes I agree.
My son went from being a child who made no progress from the start of formal education to year 4 (when we began TH)
Progress where none existed before is good enough for me.

You too cats x

"lougle are you honestly trying to control someone else's punctuation?"

No I was merely explaining why I felt badvoc's posts appear aggressive to me, when s/he maintains they are not expressed aggresively.

Fred Epstein was very dyslexic. He had determination, though, and became a renound paediatric neurosurgeon in spite of it.

Would you say he was cured of his dyslexia? I wouldn't. He found strategies that allowed him to progress, but that's not the same thing.

I am not talking about Fred Epstein, Lougle.
I am talking about my son.
I don't want him to have to use laptops, voice recognition software and have extra time for work.
Because he will not get any of that once he leaves school and has to make his way in the world.
I would far rather his dyslexia no longer be a problem for him.
Coping strategies are just that IMHO...coping. Not necessarily fulfilling your potential.

the genetic link may not fit for others but it does for us.

Exactly. That's the point I'm making. It's autisms and dyslexias which is why I like to hear about everything everyone is doing. I have a lot of friends doing intensive interaction, I think it's a fab therapy. Not needed for us as ds1 is so interactive anyway, he needs language work (and a communication aid). Surfing has made a huge difference to ds1, but I can see he is very sensory seeking and a child who is hypersensitive might struggle to be dunked in the sea in the middle of January.

I'm sorry Indigo has been "banned" or at least feels unable to post again within the MN guidelines. I think it is shame to lose such any such source of advice, experience and enthusiasm. I'm pleased her children have made progress and wish her well.

However I do think there is great danger in advocating a specific therapy as a cure-all, not only by Indigo but more generally too. Recently TH, previously AIT, RRT, Visual Tracking, fish oil and in the past it would have been Dore, Dyscovery Centre et al. Any one of these might provide insight and a specific turning point for a specific child but this may simply be a developmental coincidence as Lougle cites. Not all are within the scope of or accessible to everyone and to imply that parents are doing their children a disservice by not exploring any particular one is neither supportive nor beneficial. It is similar to those saying that without attending a private school a child 's future is doomed - there may some advantage but the majority do perfectly well without and, for some, it is merely a way of validating their choice.

I "cured" my leaking pipe by wrapping tape round it and then phoning the plumber. My sentence to him was its not leaking I have "cured" it for now.

My son has anxiety issues which used to result in mahoosive fall out never mind meltdown. He has learnt to curb himself, notice the build up of stress within him and choose to ask to be removed from what ever it is that is causing him pain.

So through discussing emotions, repeating coping strategies giving quiet zones etc I have in a way "cured" the fallout issue. :)

I will never take my DS autism away but I will relieve him of somethings to help him cope and be part of life and learning to cope is within itself a "cure" to living a full life.

If I choose to use the word "cure" I am within my rights as is anyone. Its just a term thats all and the word can be used in many different contexts.

xx

Oh dear I can't believe this is so hard to grasp..... It's one thing to discuss a 'cure' for ones own child's Dyslexia. It's quite another to blindly state that the same cure applies to everyone else's child and dismiss other interventions as 'useless' when there is clearly no justification for such a claim.

MNHQ did describe this as a fine line (and important one). It is clearly so fine that many on here can't see it!

high functioning does NOT equate mild autism Not at all, higher functioning just means there are no co morbid learning difficulties or speech problems.

HFA can still be very autistic.

I think autism is genetic [research backs this theory]

There are five other family members that I know of that would quite likely be diagnosed if they were in the school system now.

My Mother is diabetic [type 2], she has insulin injections, because of that she is on the whole symptomless, that doesn't mean her diabetes is cured, it just means she manages the symptoms.

I have my glasses on :)

And maybe I cant see it because I view it from a different perspective.

Indigo has her own views and different perspective, as do others. There never will be a time when everyone agrees or sees things the same way as everyone else. there never will be a time where people can be made to agree either. Thats the freedom of choice and speech.

That is my point regarding difference and accepting it and if its upsetting avoid it if necessary but you cant cut people off for having a particular view or opinion.

Yes it is a fine line.

A lot of this is to do with previous indigo issues when she was banned last time. This is not present day issues. And I have never read she has told someone its their fault etc either. I post in TH and my hand isnt bitten off just because I dont do it.

I am bowing out now as its hard as we are all mothers and its our children and our worries about them that unite us. I can understand sensitivities of others but I can also understand there are a lot of upsets that you just have to block out or ignore in life if you dont want to listen, meet or read them.

Yes some autisms are highly heritable. You see the traits pass down from generation to generation in some families. This is known as multiplex autism.

In my family there is no autism at all, except severely autistic ds1 who regressed. He has simplex autism as he is the only case in a very large extended family. He may well have a genetic susceptibility to regression - in which his autism has probably been triggered by an environmental factor. This is what the review of the Nature articles I linked to earlier was describing.

It is agreed that the genetics of simplex and multiplex autisms are different. This has been very well established. So saying 'autism' is (or isn't) 'genetic' is meaningless.

I think that's perception, Poltergoose. I don't know that this is how Indigo sees it, but if she feels that it is absolutely unreasonable to be expected to withhold her view that children with dyslexia can be cured by TH methods, then she may feel that to ask her to is to effectively ban her, even if there is no express banning.

Hi Poltergoose :)

She was prevented from posting this time round which is really the same as being prevented/banned from doing what you normally do on MN so I can see where Indigo is coming from there x

Although the email made it very clear that she could post once she assured MNHQ that she wouldn't break their conditions, Coff33andmintspies.

I think classic autism is genetic.
I think developmental delay syndrome causes many symptoms that can present and be dx as OCD, dyspraxia, dyslexia, asd and ADHD.
For me personally it all just fits, like pieces of a jigsaw.
Ds1 was an iugr baby (undx til birth sadly) and he had significant developmental delay.
Lots of red flags really now I look back.
He was under a paed til he was 2.5 then discharged. A locum who had never seen him before.
No one was interested in helping my son...not the gp, HV, paeds, teachers, Senco....I could go on.
The only thing any of them ever did was point out his problems.
Never any help/advice/encouragement.
As I said, I may have just been unlucky but a quick look at the MNSN board tells me otherwise :(

Indigo has asked MNHQ more than in the to point to exactly which thread it was they have issues with. She has asked for a list of phrases and words they want her to refrain from using.
They have still not replied.
She has just had enough I think.

Honk x