Kristina Chew

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    04 January 2013

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    Alice

    Does Charlie like the plastic magnetic letters? My sons seem to prefer those to printed letters and find them easier to recognize.
    I am curious how a doctor was able to test Charlie's vision. Did they do the usual kind of tests, or were they adapted for him in some way?

    autismvox

    The doctor specialized in kids with disabilities -- unfortunately, she stopped doing eye exams. She used some of the regular materials for testing (eye charts) with numbers and letters and was able to put in drops and look at his eyes and retinas. But that was quite a few years ago when we went to her. I do know he has a very keen eye for tiny things on the floor (like a crumb) and can tell when a small object has been moved less than .0001 mm, or so it seems.

    Charlie never really warmed up the magnetic letters or to others made of wood. Something about the letters and how they always change seems to be an issue too.

    Karen Chiara Dito

    ..." if you're not worrying about contemporary culture and, even more, belonging to it and trying live a fixed narrative."

    A thousand times, YES.

    Also, have you read Andrew Solomon's new book? It is currently blowing my mind.

    Tim

    Kristina, Happy New Year to you, Jim and Charlie. I've been reading your blog for years now (i'm Tim, formerly of Miami, now living in Denver), and I always find your writing insightful and thought provoking.

    Your family is always in my thoughts... wishing Charlie, you and Jim a great 2013!

    mamacate

    I love this. I remember reading Lacan and (a little) Derrida in college and trying to find a way that my mind existed without language. I could never find a way that mine did, though as I've gotten older I've noticed moments that are outside the code. Living with Henry, even if I can't see it my own mind, I know there is more to the world than signifying, at least the language kind (is there an autism kind? Is it language when it's not words?). I don't know if there's anyone engaging with these ideas in the context of autism (other than a couple of literary/philosophical autism moms here on a blog), and I know they're out of fashion intellectually, and I am not sure I'd want the Freudian/French psych(o) cohort abstracting autism anyway, but I like your reflection on the non-languaged world in an over-languaged society. And it makes me think about what we all can learn (and the risk of objectification that you allude to, that I even struggle with in this little comment).

    autismvox

    @Tim, happy new year and wishing you more than well! I see your FB postings--

    autismvox

    @Karen, there is plenty to worry about in raising our kids but often I feel a sort of sense of freedom, that there isn't a set path. Liberating, but a bit scary too!

    I have been reading Solomon! Initially I felt dubious on starting it as Jim and I feel with Charlie it's more and more that he is "another branch from the same stock"; we see more and more every day that he is like us and connected to us, far from him being 'far from the tree.'

    But I have been really struck by how much of what Solomon says speaks to my own experience with my own parents and larger Chinese American family, especially the part that has made more of its 'Chineseness.' Sometimes I think the alienation and different-news I felt from all that was a good precursor to wanting to be more accepting with Charlie and his differences. Jim had a similar experience growing up in a rigidly, devoutly, super-religious Catholic culture that brooked no patience with his ADHD and much else.

    I would love to know what you think! I'm taking my time to read the book.

    Linda

    My wise mother-in-law said, (in response to a worry about out son) "It's HIS life".
    Comforting to remember.

    Linda

    "our" son.
    An "out" son would be okay, too!

    autismvox

    @mamacate,

    Thank you!

    The MLA is holding forth in Boston as I type and, in my guerrilla reading of the program, I was not surprised to see autism with mention of some Simon Baron-Cohenish notions ('mindblindness') and cognitive science. The neurology of reading is on trend (as is, apparently, literature and genetics).

    I don't know if you might have ever thought this with Henry: With Charlie, I have often thought, observed and experienced that the whole business of signifying is not 'natural,' as far as the way his mind works as much as I can determine. The whole division/deferment/difference between a word/verbal utterance and some concrete thing seems absent or not at work. It's as if there is none of that distinction (which has spawned an awful lot of literary and other theory) between the signifier and the signified.

    At the risk of 'romanticizing' In the way you note, I suppose it could be said that Charlie experiences languages in the primal? 'pre-lapsarian' way before there was any division between word and thing. But it's hardly an idyllic state for Charlie as it means that (as illustrated by a 5-hour plus panic attack on Friday night on realizing that his school week was over after 3 days instead of the habitual 5), an utterance of 'school' in an attempt (on our part) to explain that he had 'school Monday' only led to more agony for Charlie, because to say 'school' meant that it had to happen, or had to happen on the next day to complete that 5 day routine.

    So often I simply say nothing at such moments, in order not to, as to were, fuel the fires, woes and worries -- even an 'ok' or 'uh hmm' can be rather deadly, those count as words full of meaning to Charlie (who was able to sleep on Friday, exhausted by all that agony and anxiety and having knocked over a chair and screamed in a primal way expressing what a scream does, and then woke up on Saturday ready for his usual bike ride on the horse country trail almost as if there had been no such panic).

    The screams were signified + signified altogether conjoined, meaning and sound one and the same. (they did not go on for long; emergency medication alleviates.)

    Of Freud and Lacan, probably awkward to bring up but I think I'm going to, but in another comment!

    autismvox

    @Linda, yes! And so the business or necessity of translating (we for Charlie, that is) is ever more pressing, given all the words in the world and how few he has to cope with it all -

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