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June 05, 2007

Comments

Kristina Chew

I know what you mean about at first resisting reading books with the "a" word----then, once I got started, I have found it impossible to stop and I more than wish that Savarese's book had been available when we had started our journey.

jamie

hi susan
i read some of the entries and liked them a lot. you are a very skilled and thoughtful writer and i love hearing more about isaac's out of school life. i am drawn to the autism books also, as i have been drawn to people with autism for a long time. i'm sure you have read donna williams (nobody nowhere and somebody somewhere are the two i have read)--her story is also the inspiring
against all odds type but she is really just trying to communicate with a world that didn't understand her for a long time. i would like to check out savarese--i've worked with so many kids with disabilites in foster care (good and bad) and also want to read an intelligent person's experience with fc which was, at least where i worked on the east coast, being sold to parents in the form of expensive devices with no evidence of success.

have a great summer susan. i will miss isaac. he is an amazing and wonderful little boy.

Niksmom

Thanks for that, Susan. I've seen many posts lately about this book. After reading yours, and Kristina's comment about wishing she'd had this early on, I will put it at the top of my summer reading list, for sure!

Jordan

Thanks for posting this, Susan! I have ordered this book and can't wait for it to arrive! Sounds amazing.

mothersvox

Wow, Susan, I am so happy to have found your blog!!! Thanks for commenting over at Autism's Edges and leading me back here!

I haven't been surfing the blogosphere enough lately -- too many work deadlines over here -- and so I hadn't noticed your arrival.

I'm so happy to see what you're writing and to learn about your life with Isaac!

G

I have yet to read this book, (wasn't in at the bookstore or library). I am curious, does DJ ever learn to type without any assistance at all? Do they ever try to let him type while the assistant is blindfolded or can't see the board? This is what I want to find out. That would be the only way to prove to the skeptics that it is really DJ doing the communicating and not the Ouija board effect.

I really hope DJ can write an essay with either no human facilitator (perhaps they could rig up a sling or other mechanical device?) or one who cannot see, or doesn't speak English. That would be the solid proof facilitated communication needs and a huge achievement for science and autistic kids.

ralph savarese

A comment for "G." Is she aware of the new studies that confirm FC's legitimacy with at least some people with autism? (I list them in the back of my book.) Is she aware of those, like DJ, who have passed message-passing protocols where the facilitator is indeed naive? Is she aware of those who, having at the outset failed such protocols, learned, like students taking an SAT prep course, to pass them? Is she aware of those who have learned to type independently? Many of these folks took YEARS to accomplish this feat. Is she aware of those who have multiple facilitators--DJ has 15!--and whose idiosyncratic writing style remains the same across this very disparate group of facilitators? If "G" ends up reading the book, she will see that we spent four years teaching DJ how to be literate. Once he "proved" his competence by pointing INDEPENDENTLY at answers on a page or blackboard did everyone--parents, teachers, aides--feel comfortable with the notion of facilitated communication. (If your kid is not literate, FC can't possibly work--this is how the FC movement got into trouble in the early 90s.) The idea of waiting for total independence at the keyboard BEFORE one accepts the communication of people with classical autism is both cruel and unfair. At the same time, one has to be very careful about facilitator influence. And we are.
The field of classical autism is changing VERY quickly. New studies are showing that the presumption of mental retardation in classical autism is almost entirely unfounded. (Some of this material is in the book as well.) By changing the intelligence testing vehicle, many who were presumed retarded are now considered of average, or above average, intelligence. So, there's lots of circumstantial evidence suggesting that a technique like facilitated communicating--but not just this technique--is reasonable. But, again, your kid needs to be LITERATE for it to work. I find it very sad that all most people know about FC is the controversy from the 1990s, not the new developments. Ralph Savarese PhD

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