What It’s Like: Life with Charlie and a Poem (and the VICP)

A simile, as my students are quick to tell me, is when you’re comparing something to something else and you use “as” or “like.” It’s a comparison of something by way of mentioning something else, and the “‘as’ or ‘like’” makes it very clear what you’re up to.

“Simile” is the title of one of my favorite poems from Line Dance (Word Press 2008) by Barbara Crooker:

My son showd me his paper from remedial
English; he was supposed to fill in the blanks.
Cool as a __________.
Smooth as a __________. Neat as a _____.

He came up with: angry as a teakettle
and when I asked, “Why?” said,
“Because it was boiling mad.” Of course,
it was marked wrong, one more red mark
in his life’s long test.

When I called from Virginia to ask him
what he did last weekend,
he said, “We bought Italian salad dressing.”

Last fall we went to a Broadway
play; what he liked the most
were traffic lights and Don’t Walk signs.

Of, my little pork chop, my sweet potato,
my tender tot. You have made me pay attention
to the world’s smallest minutia. My pea-shaped
heart, red as a stop sign, fills with
the helium of tenderness, thinks it might burst.

Crooker is the mother of an adult autistic son and a couple of poems (such as “Climbing the Jade Mountain,” quoted at the end of this post) in Line Dance are about him. Crooker being a poet, and  (like me) the mother of an autistic son who struggles especially to use words, I sense in “Simile” a certain feeling of intertwined sadness and tenderness—-linked with “helium” in the poem’s last line, and potentially explosive. Crooker’s fine attentiveness to the power and nuance of words is ever, implicitly, in quiet contrast to her son’s different way of being-in-language, in which one is “angry as a teakettle” because “it was boiling mad,” an answer evoking a certain kind of poetry of its own. An answer that is marked simply wrong, in red.

Language is, you might say, my bread and butter. I teach two languages (“dead” ones, all right, and so perhaps all the more “foreign”). I translate poetry from both (Latin more, and Virgil in particular) and sit across from undergraduates trying to turn vocabulary words and grammar into a coherent sentence. And, like Crooker, my son is autistic and language is not a medium he is readily conversant in, is perhaps not at all comfortable in. My son does speak, mostly in phrases of a few words recalling a telegraph’s message. It’s mostly the names of things—nouns—and their attributes–adjectives—and a few very literal verbs (eat, drink, want) that he says on his own.

Charlie has plenty to communicate, it should be so obvious. I learn what that might be from something very simple: We (Charlie, Jim and I) spend a lot of time together, on many good adventures (to the beach on Sunday) and for many mundane humdrum moments. Trips to Target to buy paper towels and detergent. Walks down the clean-swept, anonymous main street of our condo complex. Waits in waiting rooms where Charlie has grown too old for the toys and I’ve already read all the autism, special need, and special diet books on the shelf.

It’s a lot of dad-mom-Charlie together time. There aren’t soccer teams or JV football practice or swim team tryouts, or general hanging around with friends, or all the other things “typical” kids do. “Not just any babysitter” can watch Charlie, and we’re excessively choosy about who might. People look too long or look deliberately elsewhere on knowing there’s someone so very different in their midst; someone who doesn’t seem so like them.

While it can get wearying to keeping dealing with all that, I’ve also found that I get better at, truly and really, not letting it bother me. One reason is because I’m too busy talking with, relating to Charlie, and what others are thinking is of no consequence. And honestly, I more and more feel at my most relaxed when I’m with Charlie. Life with our boy is not a continuous stream of harried moments of late; it’s rich and busy and we do tend to do the same things over and over, and yet there’s plenty going on, plenty to learn and do.

Charlie has had and has a lot of challenges and struggles in the behavior department. Some like to go into more detail about all matters “kaka“—that’s ancient Greek for “bad things”—I can assure that we’ve seen and smelled our share of plenty. Nonetheless never would or have we thought that h would be better to be dead rather to be autistic. This very notion was the subject of a post yesterday on Left Brain/Right Brain and such a statement seems to me, in rather classical terms, a statement of hubris. Hubris describes a kind of over-arching pride and self-confidence, the sort of too-great faith that a human—even a hero, like a king or noble in a Greek tragedy—can have, and this pride can breed a kind of defiance and blind one to the truth and the reality before one’s eyes. (Such pride is the flaw in the character of Oedipus, King of Thebes, in Sophocles Oedipus Rex).

Saying that death is better than autism suggests a one-dimensional understanding of autism and of autistic persons. Jim and I have never been able to consider that vaccines or mercury or any of that had something to do with “making” Charlie autistic: A shot didn’t make Charlie Charlie.

My son has done and does some really tough things. Really tough things. There was a time we feared we would not be able to keep him with us at home, that we could not take care of him anymore, could not help him. I think these sorts of terrible, difficult feelings and thoughts drive some or many or most or maybe all of the 5000 or so petitioners in the Vaccine Injury Compensation Program, and lead them and a whole cast of others (certainly including some lawyers) to, as Kathleen Seidel on Neurodiversity points out, go to some great, great lengths. I also think the claims of a vaccine-autism link will one day seem like so much history when this hypothesis of autism causation is put to rest, after a protracted existence.

Somedays I’m just grateful that Charlie’s with us, and what’s he not able to do and what he’s able to do is so much (as Jim likes to put it) gravy. Monday night after swimming and shopping and a big dinner, Charlie was sitting on a floppy cushion chair (that happens to be personalized with his name in white stitching). Jim was working late and I was finishing my dinner when Charlie suddenly looked straight at me, and squinted his right eye, and said, “Stop it.” And, “stop it.” And, “stop it. Stop it. Stop it. Stop it. STOP IT.” Interspersed with “What’s the matter, Charlie? What’s the matter, Charlie?”

He was clearly agitated, the lines of his face drawn and troubled, and he said those two phrases over and over and over for several minutes. I believe I know where they are from: When Charlie was having immense trouble with head-banging, I’d say (what can you say) “stop it, just stop it.” (He did not.) The “what’s the matter Charlie?” was said to him at the school in the town we used to live in. Charlie was never able to answer with words. Somehow those old memories had gone live in him Monday night.

I sat across from him. I moved beside him and said “yeah.” I got up and sat on an old IKEA footstool. When Charlie paused from talking, I said something about taking deep breaths when you’re nervouse—a technique his teacher has told me they have been teaching him—and Charlie said “breath” and breathed in and sat, quiet.

He was as quickly up and into his room, where he ran furiously back and forth across the floor and then started belly-flopping on his bed. I came in and sat on the floor and Charlie started saying the name of an old teacher (whom he’d had in our old town). I said the name of his current teacher and Charlie repeated her name and sat and buried his face in a fleece blanket. He lay down to go to sleep soon after that and I sat in a chair as we pulled his blankets around him and didn’t say anything in particular.

………..You have made me pay attention
to the world’s smallest minutia

——the sound of a boy peacefully breathing, asleep in his own bed on Superman sheets, safe at home.

No similes or metaphors or fanciful figurative language here—-just the depiction of what is, and it is good.