Now, Charlie had a pleasant day with good talking, few behavior squalls, and a few bug bites; certainly nothing as exciting as happens to the Fraudulent Counselors in Canto XXVI (clothing on fire) or the Traitors of Their Kin in XXXII (it involves a lot of ice). Even on the tough days, as chronicled in Why Charlie might sometimes be a tiger, but never a tragedy (#15) and Not a bathroom story; or, more on Charlie's words (#11), I know my life with Charlie--Jim and I know our life with Charlie--is the best that can be, and we only love our feisty guy all the more in his struggles as much as his triumphs. Some call autism "a daily hell" on a par with the suffering of the inhabitants of Dante's Inferno. I have tried to show that, while Charlie's and our days are rife with awful, messy doings that contain words like "self-injurious," "helmet," and "severe," life with autism, however tough and messy (literally and figuratively) is not a tragedy.
When a child is diagnosed with autism, one can never think (as Dante read on the gateway as he was about to enter the Inferno) "Abandon every hope, who enter here" (Canto III.9). In our life with autism, hope just keeps on coming back, and no more so than through the many people we have chanced to meet through a flyer on a bulletin board, a hastily sent-off email. They have taught Charlie to learn how to learn (as described in The Magic Pill (#21) and Learning How to Learn (#19)); today, Charlie spent some happy hours talking and playing with the latest "descendant" of his original therapy team. It's a joke of his to talk constantly about one of those therapists, Stella. Charlie will say "Stella, Stella red car, Stella!" and then catch himself, grin at me, and say "Miss Greene"--a more recent therapist who (as I taught him) "looks like Stella."
Perhaps it is the fallout from the terrible legacy of Bruno Bettelheim, who promulgated the notion that autism is caused by bad parenting from "refrigerator mothers" (the term was coined by Leo Kanner in the 1940s; he later retracted it). We autism parents are ever on the defensive, whether about the causes of a child's autism or the therapies and treatments we have chosen or the back-arching-atop-a-manhole-cover-on-a-train platform-with-loud-screaming a crowd of onlookers once gawked at and ignored. Life with Charlie--life with autism--is very rich, frequently difficult, and always worth it. I first came up with the notion of finding out one's child had autism as the "end of a love affair" when I was asked to speak "as a parent" to a class on early intervention, to an audience of speech pathology graduate students. I wanted to convey the terrible sense of loss and hopelessness and, for the students, it worked. When I explained my wording to Jim, he responded:
"Don't say it's an ending!"
"But it kind of is."
"Then say it's the beginning of something. Life with Cholly. You know how to put it."
Jim's words in my head, I typed that an autism diagnosis is "the start of a new, lifelong, really beautiful relationship."
"Better?" I asked.
"Better," he said.
"I'm uploading it." A big part of my "autism survival toolkit" has been to hang on to "something of myself," to interests and parts of myself that have (at least at first glance) "nothing" to do with autism: Dante, Latin, the phragmites growing in the Meadowlands. Charlie is The Main Subject of this blog, with forays into Sappho, poetry, and the Classics. Mom-NOS's blog is about "raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction" (with a happy cheer from me for the last item; I take mine black and strong). In my case, I have been able to work as a college teacher, of writing, Great Books, literature, and now of the Greek, Latin and Classics I schooled myself to learn.
Thanks to Charlie, the meaning of a favorite Sappho fragment has deepened. After his diagnosis and for a long while afterward, it seemed the height of triviality to me to be reading an ancient Greek poet's love poetry. Life with Charlie frequently brings roller-coasters of feelings and pain--those head-bangs, those desperate "I want"' 's with no direct object. And so when Sappho writes this of love,
Eros once again limb-loosener whirls me
sweetbitter, impossible to fight off, creature stealing up (LP, fr. 130)
I say to myself, that is life with Charlie, sweetbitter and bittersweet, from one of my favorite Greek words, glukupikron (gluku is "sweet," pikron, "bitter"). The translation is from my favorite book, Eros the Bittersweet (1986), by my favorite poet, Anne Carson. "One moment staggers under the pressure of eros; one mental state splits," Carson writes. Sappho renders love as "a simultaneity of pleasure and pain"; as sweetbitter. Substitute "love" for "life" in that previous sentence and there is something of my sadly beautiful "philosophy of life," as I mused about it this afternoon, having watched Charlie swim and somersault in eleven feet of water, and then poke at the gunk in the gutter in the shallow end.
Canto II of the Paradiso begins "The waves I take were never sailed before; / Minerva breathes, Apollo pilots me, / and the nine Muses show to me the Bears." Minerva spira, e conducemi Appollo: Minerva breathes, and Apollo leads me, and in our "little bark" ( piccioletta barca), we move on under the guidance of the goddess of wisdom and of the god of the sun, and Charlie leads the way.