dgeorgea

[needmorecoffee]

Did I upset you somewhere over ASD? You posted something in another thread that I read this morning and it sounded like it was from when I asked questions about the differences between difficulty and disability in learning.
I have both a child with severe cerebral palsy and a child with Aspergers in case you are wondering and what I'm exploring right now is how IQ tests and mainstream methods mean diddly with certain children and give no indication of their true potential. Like, you could assume that because DD doesn't answer a question that she doesn't know the answer. But her CP prevents her from speaking. Yet school type learning wouldn't notice this.
But I've been trying to fathom what is meant by a learning 'difficulty' and a learning 'disability'. Doctors use disability to mean something permamnet that cannot be changed and put Down's syndrome, Williams syndrome, mental retardation caused by brain damage into that column. While a difficulty is seen as something that certain techniques can overcome. Dyslexia leaps to mind. I know kids who had severe dyslexia who have learned to read.
But its with ASD and stuff like severe CP that the boundaries start to blur so I wondered out loud if some of the fault lies with teaching techniques and kids are written off as unable to learn. 50 years ago dd would have been labelled profoundly retarded because she can't speak or eye point and she would have been written off. Now we have switches and computers and she demonstrates that her 'IQ' is normal (I hate IQ measurements to be honest) but she has processing issues. She has to look at an object for 10 seconds or more to 'see' it because her brain damage is slap bang in the thalamus which deal with sensory processing. She can't see and hear at the same time.
So different methods are needed. Some are similar to kids with ASD. In fact, I learned them from having my son.
But I hope my musings didn't upset you in any way cos that ppost suggested that they did.
I think the labels of disability/difficulty are getting more and more inappropriate when we talk about brain function and really demonstrate how much we don't understand. Disability is easy to understand when you can't walk or talk but whether how the brain functions is 'disabled' or 'difficulty' now is so blurry and inter-tangled (is that a word?) that doctors are hopefully realising you can't slap a label on a child and give up on them.
So that was my rather muddled point and I think its an interesting topic to debate.

I find this interesting too needmorecoffeeC. My DS (ASD) also takes about 10 seconds before he can name something - it's almost as if he has to "switch on" his brain before he answers a question, plus I've found that if he touch points, say, a picture of a ball, he is much more likely to name it correctly. I hate IQ tests as I think they gave him one way too early, when he was unable to co-operate, and therefore I think they have vastly under-estimated his IQ. I have recently taught him to start recognising letters, and he can count objects up to 20, but the best way I have of teaching him is through repetitive watching of Educational DVDs, which is a medium that appeals to him most. I agree that they are not really clear on autism and its relationship to IQ - I think in my son's case, the autism is "masking" his intelligence and I don't yet know whether he has learning difficulties as well.

Needmorecoffee,

Yes it was a comment you made, that GDD is a disability while AS is a learning difficulty. It is something I would normally be quick to correct someone on, but honestly felt it was not appropriate in your case, I was not aware at the time that you had a child with this.

I did not in part think it was appropriate to 'correct' you because in doing so it missed the main point of your post. Which as I understood it was to avoid your child being given a lable which has the effect of writing your child off. Also I do feel for you because like many parents you are fighting for your child to have the right treatment for them, with the added worry that with the more intensive help required it would be easy for others to just write your child off.

One of my egg box themes (I can't afford a soap box) is that we all deserve the opportunities to reach our own potential and possibly exceed the expectations of others. The emphasis being on 'own potential'.

One of the things which amazed me when I first began working with more severely affected autistic children then my daughter, was the number who could read. I know it is a daft thing to say, but when you consider the number of young people leaving primary and secondary school children leaving school not being able to read it was a real eye opener for me.

Meeting a young autistic lady with poor communications skills and sensory issues and discovering she has 8 GCSEs all of which were modified to capitalise on her special interest - superman - also challenged my preconceptions.

I have never believed any child should be written off. I guess I never truly appreciated how much potential some realy have. It is a common misconception and one which must be very frustrating for parents who have to listen to other peoples ignorance. And one I openly admit to being guilty off.

There are huge problems with iq tests and some are well known and documented. How they can be applied fairly to a person with severe/complex disabilities is beyond me. If a person has severe problems simply interacting with the world around them how can they expect to fairly test them for IQ??

Though I had no preconceptions about aspergers when I first started researching it it is amazing how quickly they grew. For instance my understanding of the difference between HFA and Aspergers had to do with speach development. It took me a while to realise that comorbid conditions can severely effect the behaviour and hence the diagnosis.

To be honest between the two posts I have become very dissapointed in myself. I am fully aware that a major problem in dealing with conflict, and also in passing on information, is that the listener/reader latches onto a phrase or term which upsets them. This then becomes the focus of their attention and they fail to effectively hear/read what else is said/written, or to understand the context it is put in. I am usually good at recognising when I have done this and take a step back. This time, possibly because it happened twice in quick succession I have jumped in and made a complete fool of myself.

Fortunately doing it on a forum predominately female I know many of you will probably be rolling your eyes and thinking 'man moment'

I also used to be a psychologist before my brain fell out. The whole disability/difficulty thingy is a minefield, especially when you get some disabled people saying they aren't disabled, its the environment and society. Thats not a point I agree with. If you ramped the entire world my dd would still be unable to move.
I think the whole field needs a good shake up as does research into 'what is intelligence?'
When I did my stuff there was a suggestion that a 'disability' meant fitting into what is considered 'normal' was not possible but a 'difficulty' could be overcome or hidden and you could be 'normal'
But then what is normal? Like I said, total minefield.
Being disabled myself, and having 2 kids with very different disabilites (although I'd say ds with Aspergers was different, not disabled) I reckon that a 'disability means help is required. So I use a wheelchair or stick and get stuck at the bottom of steps. dd2 needs help with everything as she cannot move or sit or roll or use her hands while ds1.
A non-disabled person would kinda bumble along in society as it is now.
But even that isn't good enough as people will be debating this till the cows come home I imagine.

Maybe a definistion of disability could be 'does the parent have to spend hours and hours trying to get the help and equipment and statementing you need and have they torn all their hair out?'

Just spent a day trying to get SS to provide more respite plus get wheelchair services to acknowledge that a child does grow and the wheelchair we have now isn't going to fit until she's 18 dammit. I have to squash her in which is bad for her hips, posture and comfort yet they say it will be 6 months before they can assess her again because they saw her 'last summer'
ffs

don't worry about 'man-moments and I apolosgise for making you have one. I tend to ramble on without getting my thoughts very clear in a sort of 'I've been mulling this over' type thingy.

LOL your brains have realy fallen out haven't they However I'm sure one of your sisters will quietly remind you that the point of being a lady is you don't apologise to men. The rules are:

1. Women are always right
2. On the odd occassion when women are wrong rule 1. applies.
3. Men are never right, refer to rule 1.

I know this because my wife was very careful in teaching me them.

On a serious note you are not at fault because I cannot read properly

I'm realy sorry to hear about your day. It does make me angry for you, and other parents that have to put up with this cr@p.

Actually I'm gobsmacked. All the publicity about battery hens and the uproar that has gone with it yet parents like you are expected to do the same things to your children and nothing is said

Are you able to appeal this decision?

lol dgeorga.

thats given me an idea for a placard and I will stage a one woman protest outside the hospital. See you in the media