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SN children

Here are some suggested organisations that offer expert advice on special needs.

GOODBYE

207 replies

2shoes · 30/01/2007 17:17

Last post on sn for me.
I asked for a thread to be deleted BEcause I care about the mums on sn.
I will not have this said to me or about me.

"You parents who asked this thread to be removed, you should be ashamed of yourselves. "
I will not apologise for caring about peoples feelings.

OP posts:
2shoes · 02/02/2007 09:04

thanks for that I have heard of it but didn't know the technical name.

OP posts:
Jimjams2 · 02/02/2007 09:23

The environmental issues are not just about mercury though fusby. In ds3's case I suspect one of the biggest pluses in his case was not being given any gluten (he has the dodgy gut- we know that, although we don't know why). That may have been a huge factor in his case. Also (and its linked) avoiding antibiotics.

Richard Lathe's book, Autism the brain and the environment is the read really if you're interested in environmental factors. Again the triggers will probably be individual depending on where the problems lie- sulphation system? retinol metabolism? gut pathology? something else, a combination.

Even taking mercury - if you examine mercury in the hair oof autistic children you tend to find that the levels are extremely high (less common) or extremely low. Seems weird at first- but that is one way mercury is removed from the body. The theory is that the children who have very low levels in hair are not getting rid of it properly, it's in the body building up, doing damage, the children who have very high levels are believed to have fully functioning mercury detox systems, they just had a massive dose of mercury somewhere along the line

theheadgirl- apologies for not replying to your email yet- I'm run off my feet at the moment- wil try to get to it over the next few days.

Fubsy · 02/02/2007 17:47

I think if I had read all this stuff about mercury etc before or during my pregnancy, i would have gone stark staring mad.

The upshot is - most of it is unavoidable! Whether rightly or wrongly, i spent most of my pregnancy worrying about all the things that can go wrong (too much knowledge - how on earth do mdwives cope?. I refused all prenatal tests on the grounds that the risk from the test was higher than my risk of the conditions that were testable.

I suppose one of the points Im trying to get across is - if we get too uptight about some of these things, we spend too much time worrying - even that is supposed to harm the developing foetus.

One of the hardest things when working with some families with SN kids is trying to convince the parents, and mother especially, that its NOT THEIR FAULT. How can I do that if even having a filling in their mouth or a lightbulb in their house could be causing damage?

its like the alcohol in pregnancy thing - apparently we dont know how much can cause damage - but all the kids Ive met with FAS have had heavily alcoholic mothers. And we dont blame them either!

I dont know. I think this stuff is interesting, but it comes back to a little knowledge is a dangerous thing. If it eventually brings about a cure or way of preventing a condition, then great. If it sends ordinary families on lifetime searches for the answer to all their problems, using up their money and their lives in the process, then I prefer not to know.

It was bad enough when I used to watch families tearing themselves apart in order to take their kids to the Peto Institute, mother and child in one country, frequently partner and sibs left here for months at a time. The therapist who introduced Peto to this country actually said that she did not intend the knowledge to be used that way, ie breaking up families - she wanted professionals here to know about it so we could use the techniques. But it was never good enough - even though I told parents that I had trained in conductive ed here, because I hadnt done it in Hungary, or wasnt a real Hungarian conductor, to them it wouldnt work.

Talk about going off on a tangent.

I am also concerned about the Hyperbaric O2 bit. Apparently it cures everything - its also unproven, and has a lot of side effects, particularly to the developing eye. I knew a couple of people who tried it and saw no real difference.

2shoes · 02/02/2007 18:06

Fubsy so you are trained in conductive education. we did that for a year when dd was small. never went to the peto institute though.

OP posts:
saintmaybe · 02/02/2007 18:20

at very low levels of mercury being relevant; that's what ds2 showed and I assumed that meant it wasn't a factor for him. The nutritionist who did the test didn't mention that either; though as time's gone on (and £several hundred later) I'm suspecting she knew a lot less about asd than she was letting on.

Gluten/casein removal was very effective for him, too.
I know what you mean, fubsy, about running round in circles trying everything, but sometimes that's what I've wanted to do - to try everything. And sometimes I just want to pull back and enjoy him and not be looking for some new therapy or intervention or book I haven't read. I've not looked into anything new for ages, and I'm sort of ready to again. And some things have definitely made a difference to him.

I'm think I read about some kind of mercury-removing process involving seaweed, can that be right?

Jimjams2 · 02/02/2007 19:38

Oh god yes you need a nutritionist who knows ASD, and lots about it. Bog standard nutritionist useless. The mercury stuff is a bit guessworky in terms of trying to work out mercury load. The reference for the low mercury stuff is: Holmes AS, Blaxill MF, Hayley BE (2003) Reduced levels of mercury in first baby haircuts of autistic children" Int J Toxicol 22 277-285

Well I'm pleased I knew about potential triggers. Not in order to "cure" ds1 (I'm not curabee- would love to help him with his OCD far more than his autism), but because I think if we hadn't been careful with ds3 he would be autistic, and he's not.

saintmaybe · 04/02/2007 21:32

Thanks I'll check it out

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