Autism Fragments (#242)

mingled with all kinds of colors

That is fragment #152 of Sappho, pantodapais[i] mem[e]ichmena chroiaisin if transliterated from the ancient Greek. Just three words do not a poem make for Sappho, of course: Those three words are what was found of a whole poem on a papyrus fragment buried in the sands of Egypt, or only what some ancient grammarian thought sufficient to quote, for the purpose of illustrating his point about the uses of the dative case.
Secretlaugh_3
Three words on an otherwise blank white page.

So often, three Greek words from a lost poem seems to represent how much I really know about autism. Three words that don’t even form a whole sentence–some of the letters may not even be correct–and the rest of the page not yet touched by black ink smudges. How many more books and blogs will I have to read to know what I need to know? How many more professional opinions might one need to seek? How many tests—for heavy metals, yeast infections–EEGs, BEAMs, MRIs, PT and other evaluations, and much much more can be done?

To read those three words of Sappho, I need my big Greek dictionary, a couple of commentaries, several translations, a few books and essays about Sappho–the same amount of reference materials and resources I need to read Charlie, not to mention a home ABA therapy team, Charlie’s teachers and school behaviorist, two SLPs, our VB therapist.

“Boy brushing teeth. Doing with pen-sill. Boy p’aying wih’ toys. C’ean upp! Ride. Ride in car! Ride in bus schoolbus. Bus has wheels. ‘S g’asses, eat strawbehr-rees. Boy wahss hanns use so-opes. Bounce to Charlie! Bounce it. To Mommy!”

Sentence fragments—but Charlie strung those words together at his speech therapy session, as the therapist had him play a matching game, work on RFFC, play catch. Charlie’s words may be in bits and pieces but they are beginning to fill up much more of the white space on a page than Sappho’s three word fragment does.


pantodapais[i] mem[e]ichmena chroiaisin

The repetition of the “m” in Sappho’s Greek recalls how Charlie tends to linger over repeated sounds: “Boy wahss hanns use so-opes.” Reading poetry, listening to my boy, have been tuning my ear to hear the sounds of Charlie’s language, his idiom.

I am not trying to say that Charlie has some “special” talent for speaking in language recalling poetry; knowing how to read poetry for its sonic, rhythmic, and musical qualities has aided my understanding of what Charlie is trying to tell me, and so my understanding of autism. And the long hours and days and years in Charlie’s presence–in Charlie’s autistic presence–have taught me that the years I spent studying poetry were not such a waste as I have thought while I was trying to fill in the many gaps of my learning these past few years in ABA, education, psychology, neurology, medicine, linguistics, and a whole university of subjects.

Charlie and I were out and about our neighborhood for a long, wind-blown walk, after he had had his after-school snack. He wanted to slide and climb on the play structure but the cold must have been getting to him (as evinced when he flung himself down backfirst into a pile of leaves as we walked home across a soccer field). We shuffled home and to speech therapy and then it was “burreetoes dinn-er!” so he had a Friday treat of a tortilla-less burrito with rice and beans and some guacamole. By 7.30pm Charlie had established himself on our bed with his photos and stuffed animals and asked me “turn on Inn Dee Evening!” on his iPod. John Coltrane’s “My Favorite Things” was Charlie’s favorite–I found him listening with eyes wide open and intense. But when the Wiggles came on, Charlie said “no, all done.” And then “goo night!” and settled down amid the blankets and fell asleep.
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That is the gist of my paper on “Fractioned Idiom: Poetry and the Language of Autism” that was presented at today’s colloquium on “Autism and Representation ” under the aegis of the Association for Research in Popular Fictions at Liverpool John Moores University in the UK. The conference organizer, Irene Rose, kindly read my paper as I was unable to attend, while more than wishing to be there listening to papers on subjects such as Mark Haddon’s The Curious Incident of the Dog in the Night-Time, “Human, but more so: What the autistic brain tells us about the process of narrative,” autism and the “Metaphor of the Mind as Computer,” ASPoetry, “Self-Narration and Film for Children with Autism,” “Autism and Masculinity in Contemporary British Popular Fiction, “Autism=death: The social and medical impact of a catastrophic medical model of autistic spectrum disorders.” Jim and I had presented papers at a conference on autism and representation in Cleveland in October; it goes without saying that our commitment to this topic is not merely intellectual, but passionately personal.

It is huge responsibility to represent Charlie , in language and writing; to be his advocate to obtain the services and educational program that he needs now, and that he will need for the rest of his life. Being an autism parent requires that we constantly speak for–represent–Charlie, even though we do not–cannot–know exactly what he thinks or wants or would prefer.

What I do know is that, while my thoughts were flying across the Atlantic, my arms were straining to hoist the full weight of Charlie after his shower. When he was a toddler I used to pick him up after his bath and we’d stand in front of the mirror and I would try to get him to look at his reflection, even to imitate the movement of my mouth: “There’s Charlie! And Mommy!” Since Charlie has gotten so big, this ritual has faded off. But today something made Charlie remember and he smiled bright like diamonds, grabbed my arms, and requested “Up Mommy!”

A little bit of poetry goes a long way in Autismland, mingled as it is with “all kinds”–a spectrum–“of colors” that Charlie is slowly painting in for me.

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Comments
4 Responses to “Autism Fragments (#242)”
  1. Eileen says:

    I do the same with Andrew in the mirror after wrapping him up in a towel from the bath.

    Charlie’s sentences are really coming along nicely.

    You always do such an amazing job of advocating for and representing Charlie!

  2. Estee says:

    Kristina,

    This is one of my favourite posts. I am so interested in reading your paper.

    Can you send it to me?
    Estee

  3. Wade Rankin says:

    Representing our children is sometimes an overwhelming task, and the one constant for many of us is the presence of those who will tell the parent how badly the task is being handled. You and Jim do wonderful things, and more importantly, make it possible for Charlie to do wonderful things.

    And thanks for planting that ear worm. Now I’ll be humming the Coltrane version of Favorite Things the rest of this day.

  4. squaregirl says:

    I too would love to read your paper. The poetr in autism is important to remember.

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