Do you think there really are "cures" for sn or is it all bollocks

[2shoes]

random I know, but for some mad reason I was thinking about this earlier.
you know the stuff, swimming with dolphins.......well I know young people who have done that, had a lovely time, but still the same.
oyxgen tanks or some such thing to help CP.....yeah like that will work.
people saying take victims for epilepsy.sorry you what!!
add your own.....

riven it didn't "work" for dd, but it was then run by scope, so there was no cost. scope pulled out but it is still frre(I had to travel about 30 miles to it though, CE is rarely on your door step.
I don't class CE as one of these bogus cures as they don't make that claim, although it didn't work in the true sense of the word, we did find it helped us to see the whole child and not just the CP.

I certainly do not doubt that there are some things which can lead to massive improvements in SN children, but is there ever a cure?
No, its bollocks.
Yes, there are cures for those whose conditions are determined by a defficiency of a certain (initially unknown) compound.

My DS is now deficient in a large amount of brain matter - can anything cure it? No.

Can anything improve his condition as a result of it? Yes, I feel it can and have an open mind to many things.

But the idea that is bandied around by certain websites, that if I simply tried harder, changed his diet, gave him certain supplements then he'd be cured of his severe brain damage, intractable epilepsy and severe visual impairment, is just insulting.

Like I don't question myself enough already

yes i agree, we are in a similar situation and no there is no cure, some things have made life easier, some things i just haven't had the time for. i think that there are also people who are happy to devote their lives to their disabled child to the detriment of the other kids and husband, which is not an issue for me if that is what they want to do but it is not something i will do and i will not go to the ends of the earth to find a cure for my son as it is not there...... plus i often wonder, if you are looking for a cure then have you accepted your childs disability and accepted them for who they are ? i suppose that depends on the severity of the disability and whether things can be improved with diet etc - for us that is not possible - we need the brain transplant option .

Great thread by the way .

No cure for dd condition as brain not wired properly,but as for "Supportive" and behavioural interventions,we keep plugging away and hopefully we can work on getting the maximum out of the abilities she has,if that makes sense.

She is gorgeous and though we have a long road to travel I guess we take each blip as it comes.

"It doesn't stop me having twinges of guilt every time I read about a child who has made tremendous progress as a result of one regime or another though..."

Sphil- they probably haven't made tremendous progress because of that regime though. They've made progress because it was within their capabilities.

Don't let the fact that other children now appear near normal let you lose sight of the enormous progress ds2 has made.

I think therapies can help us reach the child's potential, but can't push past it. Ds1 will - I'm fairly sure- always be non-verbal. But I love the fact he can imitate (opened a world to him) and understand far more than he could in the past.

Agree with everyone saying that whilst various therapies can help, they're not goint to cure

Completely agree with the guilt thing. It really sets you in that mindset that if only you could do more, yr child would be 'better'. Quite hard to get out of. I do my best - both with the therapies and the reminding myself of their limits

We do CE and targeted training. There has not been a cost for this at all. We had to apply to cauldwell once dd was 4 as parent and child funding provided to NICE (where we go) by corporate sponsorship covers all children 0 - 3. PCT funded targeted training.

I think both of these therapies can offer some benefit to all brain injured children - however, being realistic that these benefits are dependent upon each child - some may get better at supporting their own head, be able to unclench a hand for brief periods, others helped to sit and walk. Those I've seen who go to CE as a fulltime school placement do appear to do very well - but that is very expensive so you've pretty much got to devote all yr energy into fighting the LEA or win yr medical negligence case

I completely agree with Saintly - progress can and is made by all children however the innate capability is an enormous factor. However I do not think this reality is stressed or even mentioned by people pushing 'cures'. Also agree with Sphil - that increasing an autistic child's desires is key to development. Have you read Clara Claiborne Park's books abut her daughter ? She likened her infant autistic daughter's state to the Buddhist idea of the extinguishing of desire - Nirvana. She had to find a way to make her daughter desire more than 'playing' with dapples of sunlight all day.

Cyber, that is the basic premise of applied behaviour analysis.

Identify reinforcers and make available contingent on some behaviour.

Well some have likened the mother's approach to ABA - everything in small steps with motivation provided. But can you really create desire ? One of the key differences I have noticed with DS2 is that he uses language to construct narrative whereas DS1 does not. This links back to the earlier failure to construct anything purposeful from his baby toys ( I think). I do use a little VB but I don't see as something that will, in itself, prompt the desire to construct narrative from his words. On the positive side, DS1 can now play functionally and enjoys simple construction with Brio so perhaps that will feed through at some stage to better language ?

The Siege and Exiting Nirvana are fascinating books. The parents lived at a time when it was widely and seriously believed that parents caused problems as serious as severe autism with nothing more than incompetent parenting. It was all completely mad as they had 3 older NT children !!!

Can uo creat desire?
Interesting question.
I'd argue that a good teacher (of any sort) does so by igniting interest and passion.

It's a little about this and a little bit about finding what it is that people (especially those whose development has been severely disrupted in some way)desire and using this knowledge judiciously.

Te spin off effect of this is that peopel involved with the child should beging to see things from the child's view and not their view. So, the child may not give two hoots about what adult is offering. Lesson there is to change reinforcer not get irritated because the child refuses to be interested in what you want them to be interested in.

i have come to the conclusion that very few peopel understand this in both practical and theoretical temrs.

Those books sound fascinationg.

Well part of the problem is that in many health and education settings reinforcers are not allowed if they're seen as undesirable (eg crisps). So if you start with a child who has no reinforcers except food items (ds1 was at that stage once) and the setting won't allow you to use them, well you're stuffed. Before you've even started.

I have tried to explain that without success on many occasions. 'it's ok we don't need to use chocolate we have bubbles' great - but he couldn't give a stuff about bubbles or teddies or toy cars or whatever others thought he should like.

His interests moved on to include things like washing machines. Had lots of trouble persuading people to use them creatively (eg put clothes in the toy washing machine rather than feed the monster nearly gave his nhs salt a breakdown- but why would you expect a child without the language to comprehend a 'monster' to want to feed one?)

Exactly Saint.
The steps we want need to come before moving onto symbolic play. I think the fact that golden rule of ABA is to fade reinforcers has not been stated explicitly enough. Also that our aim is for the child ultimately to find the task itself intrinsically reinforcing at some point in the future.

I'm good at explaining this though to peopel who are unconvinced. PECS has helped a lot to introduce this idea also. An alternative is to turn tables on someone who is sceptical.
'Do you have a better suggestion? If so , I would be very glad to hear it.'

What also makes my blood boil is that people deny reinforcers to a child with LD that thy do not dream of denying themselves. (As an example, you want to see the teachers trough down the biscuits in their breaktime.)

Token reinforcement systmes work brilliantly as well, and again they are how we all operate. What else is a Tesco clubcard?

Additionally,consider everyday scenarios such as how a woman responds in the bedroom to a man who pulls his weight around the classroom or a good colleague who suddenly asks for a really big favour.

I use reinforcement strategies in every aspect of my life. My dd really wanted to make biscuits today. She knew the score-homework, diary, bath and bedroom tidy and I was all hers.
No whingeing or moaning or cajoling or badgering on my part. I got on with my work and told her to tell me when she was ready. She did, biscuits are made and cooling on the windowsill. Everyone is happy.

For 'classroom' read 'home'!

I was reading "bedroom".

No blushing, had already mentioned bedroom.

Seriously, if people graspsed priciples of behaviour a little better, men and women would be a lot happier.

All these talks of a 'cure' for autism do get me a little excited but that usually stops when I realise we can't access them.
For one we don't live in America where it seems all the 'cures' come from and secondly we don't even see a consultant paedatrician anymore as he feels DS is well catered for at school. And thirdly our gp is crap and doesn't like to prescribe things without the say-so of the non-existent consultant paed.

DS kicks constantly, he has given his big sis a black eye and almost pushed his little sis out of her high chair when he was kicking off.

When I suggested to a dietician a Gf diet she told me that as I would be replacing almost everything in his diet there wasn't really much point.

Oh God, Moondog and Saintly - exactly! DS2 has been at school for a year and a half. Up to this term, they have consistently weaseled around the use of edible reinforcers in exactly the way Saintly describes, ('oh, he doesn't need that, he loves bouncing on the therapy ball' - true, but it's not a strong enough motivator to get him to speak or try other stuff he finds really hard). This is DESPITE the fact that they used custard creams for a while with a boy in the year above. The reason? DS2 conforms, the older boy didn't - they will only use reinforcers to encourage behaviour, not learning .

BUT - things are looking up - this year we have managed to get him a regular slot with a Language Outreach teacher who is spot on - the first thing she asked me to do was to give her a list of his reinforcers and I honestly nearly kissed the woman. They've also opened a specialist unit on site and the staff there have asked me for the same thing - in fact I had to bite my lip hard as the teacher there explained to me very slowly and carefully how they have found that 'autistic children work best if motivated by something they really want'.

Sounds promising Sphil (and can well imagine how hard it must have been to nod and smile at the woman talking of importance of reinforcers. I get similar, peopel telling me all the time 'We tried PECS, it didn't work' or 'He didn't like PECS'. Err.... no. You didn't try hard enough to find out what the child's reinforcers were so you are the one at fault.