Amazing book- Lucy's story

[Jimjams]

Someone gave me this book for xmas. I am only half way through but it is amazing. Lucy appears to be very close to ds1 in terms of position on the spectrum. She's still pretty much non-verbal as an adult, but has written this book (basically she processes spoken language differently from written language- learned them seperately as well). It is such an eye opener- and has given me a much better understanding of the (totally freaky and scary) sensory problems he faces. Also interesting as she compares herself to her 4 NT sisters - and explains where her processing is going "wrong" (a lot of books written by adult autistics are either way more high functioning than ds1, or don't really see anything wrong with their way of doing things- she continually compares how she processes information with the way her sisters do).

For anyone with a non-verbal child- I would say get this book. I need to read it again to take it all in (as the language processing stuff in particular is bizarre)- but it has completely blown me away.

oh don't aloha- getting really quite worried- ds1 due to start his new school on Thursday- I really need to be around for it. At least transport is sorted- but still- could do without giving birth/brand new baby whilst trying to sort him out......

Sorry! I hope it happens very, very soon (and quickly and painlessly of course )

The book does sound really interesting Jimjams, I will try and get it from the library at some point. I am sure that sensory and movement problems must have loads of indirect effects. I have always felt that the effect of ds2's "physical" problems is a bit underestimated (by the professionals!) in terms of his overall development. So for example he didn't walk until 17-18months and missed out on loads of experiences because he was still being pushed around places or in a back carrier instead of having the freedom to explore. I remember really clearly going to an aquarium when ds2 was 15 months, with a friend and her son of almost exactly the same age who was walking. He was running everywhere, touching and climbing and exploring. Ds2 was in a back carrier - obviously we tried to talk and include him but he was totally dependent on us to dictate what he did and saw. Coupled to his lack of pointing and inability to follow a point he probably didn't have a clue what we were on about most of the time. Then when he was eventually walking he had to spend so much energy on staying balanced, keeping going etc that it is not surprising that he had less time for other things. When you couple this to problems with fine motor skills meaning he probably handled and manipulated far fewer objects than other children, he would have missed out on a lot of early input and feedback from the outside world.

I attended a talk ages ago by a woman called Rosemary Crossley who seems to be the guru of facilitated communication. She was really good. I bought her book but can't remember what its called, I'll check my shelves later. My feeling is that FC is great if it leads to someone becoming independent or independent with some prompting in using a keyboard. Where you need to be really careful is when amateurs try to do it and start coming out with all sorts of nonsense that the person with SN has "said", I've seen this happen and it can be really harmful. Rubbish about seeing angels etc!
InternationalGirl, there is a professionally trained FC person at a charity near to us, the charity is called CASTLE (associated with another charity called PALACE, I kid you not). I can dig out the number or you could probably get it on google but may need to try Palace.
I have a long article about an American woman called Sue Rubin who was considered low functioning because she was non-verbal but with FC she completed a degree! I can post it but its 4 pages long so I will start another thread, look out for one called Sue Rubin.

I have been thinking of all you kind folks ever since I posted with worries about my infant son some months ago on the development board. I occasionally check in to see how everyone here is doing. (Congratulations, Jimjams!) I recently came across the story of a boy from India, now in the United States, who sounds very similar to the girl you're describing here. I wanted to share it with this board in case it is helpful for anyone here.

The boy's name is Tito, he's 15, and he has very severe autism, but can communicate by typing and even by handwriting. This kid is brilliant, though one would never know it if it weren't for his writing...he says has an intact mind inside of a "disobediant body" and is able to describe in beautiful detail what it is like to be him. Like Lucy, it is mostly sensory issues which make him seem so unreachable. His mother through years of effort taught him to point to a letter board, to type, and eventually even to write with a pencil. (She had to do the pencil because folks doubted that Tito was really communicating via any of the other methods she had tought him.)

He has had a lot of media coverage lately so you not only read his story, but also see him on video. Here is an episode of Closer to Truth and an episode of 60 Minutes . And this is some of Tito's writing . (The writing requires Adobe Acrobat Reader).

His mum is going to be developing training materials on her methods. Unfortunately, it sounds like it's going to be very commercialized, but it does seem to be for real. Here is a video of a 5 or 6 year old learning to communicate. I was amazed when I watched it.

The folks in the US who brought him over from India are a married couple who are autism advocates and parents of an 11-year old son with autism. In a pretty short time of training with Tito's mom and her "Rapid Prompting Method" he was able to communicate with them for the first time...and it turned out he had been listening and understanding them all along...just couldn't bring his body to respond. I guess the methodology has a tiny bit in common with ABA, but it's more based on continually prompting the child to stay focussed on the task at hand, even through stims and disturbing sensory input and other distractions.

Anyway, hope this is helpful in some way for someone. I know there's a lot of snake oil out there, but this one seemed worth posting.