More than words: what i learned from parenting and teaching People with speech-Language pathologies (SLP)
After working with therapists to help my daughter's speech delays related to Down syndrome and having a student who has Tourette’s syndrome in a writing class, I’ve been thinking about speech and how the ways I think about linguistic capacity have kept me from seeing others and myself as fully human.
I was born tongue-tied. The diagnosis was ankyloglossia. My frenulum, the string of tissue underneath the tongue that anchors it in the mouth, stretched too far down the length of my under-tongue, so far that it was thought that I couldn’t nurse and perhaps, would not be able to make the sounds that eventually would make words. In infants, ankyloglossia is corrected with a frenotomy; the frenulum is cut so the tongue can have a greater range of motion.
When my mother tells it, she says I had my tongue “clipped.”
The procedure did what it was supposed to do.
I have no memory of being tongue-tied, though I do feel as if the literal has been somehow transfixed as a part of my lived experience as a poet, that sometimes articulation actively resists language. The compression of poetry under the sign of ankyloglossia. And other times, it’s the opposite: an inverse of Ariel’s trauma in The Little Mermaid, whereby my tongue-clipping loosed the speaking (and writing) voice.
I was frantically grocery shopping after putting it off to finalize last minute course details for the first week of class: changing required readings, printing syllabi, posting documents online, etc. Both my 10-year-old and three-year-old were with me, though neither wanted to be. The store was packed with shoppers and inventory, and I was focused on attending to my list and keeping my kids from melting down. I was tired and already felt a little frazzled even though the semester had not yet begun.
We were among the yogurts and cheese coolers, making our way to my daughter’s favorite brand when Jesse, also perusing yogurts, saw me and called out, Dr. Illich.
I smiled and gave him a little wave. I didn’t know him by name, but I recognized him from campus. Let me revise that: I recognized his barking. Jesse has Tourette’s syndrome.
When my cart approached, he told me he signed up for my writing class.
I said, “Great!” I was still pushing the shopping cart, determined to keep moving. “I’ll see you on Thursday.”
I was leaning against the kitchen counter, reading the speech pathologists’ evaluation report sent from the school where my daughter was enrolling, when my eyes fell on the word “nonverbal.”
Nonverbal? It felt wrong. It sounded like a clinical euphemism for mute.
I thought about the words and signs she uses with us.
In a gesture that looks like jazz hands, she tells us she’s “all done” with her meal or whatever activity she’s engaged with (painting, reading books, puzzles). She says no, ok, milk, ass (applesauce), go. She sings Coldplay’s “Sky Full of Stars” with the sign sky (an open hand pulled in an arch over her head) and stars (pointers of both hands pointing up, rubbing against each other). She understands and follows directions when we ask her to put her cup in the sink, throw away a paper towel, or put her dirty clothes in the hamper.
There is a laugh that is amused, and then the cackle-shriek, a laugh that is about body elation when she’s tossed in the air. When she’s tickled, it’s eyes closed please stop laugh. Her head turned suddenly, she’s heard something in another room. Her brother or father coming through the back door, perhaps. She takes my hand and leads me to her room and sits down; she wants me to read to her. The deep squat, potty time.
And when it’s time to rest, we are face to face, in that intimate body closeness you rarely are with anyone, and she tells me everything with her eyes. They are the conduit of her emotive life, and I receive her messages.
I was reading some poems of benediction at the beginning of class, something I do with some regularity. I was reading Sharon Olds’s “Topography”:
After we flew across the country we
got in bed, laid our bodies
delicately together, like maps laid
face to face, East to West, my
San Francisco against your New York, your
Fire Island against my Sonoma, my
New Orleans deep in your Texas, your Idaho
bright on my Great Lakes, my Kansas
burning against your Kansas your Kansas
burning against my Kansas, your Eastern
Standard Time pressing into my
Pacific Time, my Mountain Time
beating against your Central Time, your
sun rising swiftly from the right my
sun rising swiftly from the left your
moon rising slowly form the left my
moon rising slowly form the right until
all four bodies of the sky
burn above us, sealing us together,
all our cities twin cities,
all our states united, one
nation, indivisible, with liberty and justice for all.
Jesse was sitting to my right at the seminar table, and as I read the poem aloud, and as the poem built up to the final crescendo of the last three lines, the moment of patriotic orgasm as we are, I think to understand it, an American liturgy ecstatically uttered at the moment of arrival— by the time we got to the last three lines of the poem, I was learning one way Jesse’s condition manifested: echolalia.
He was echoing words emphasized by the poem’s phrases, the taxonomy of parallels paralleled with his echoes.
The effect was electric. Like a choral arrangement to amplify Old’s evocations of America and desire.
Thinking back on that first time reading to the class when Jesse was in the class, and knowing what I know now of Jesse’s strength as an attentive reader of poetry, his involuntary reiterations served as evidence of his understanding and satisfaction, his pleasure in the poem. The words were fulfilling a sense of expectation that they would appear.
This happened again when we were reading Richard Siken’s “Scheherazade”: “Tell me how all this, and love too, will ruin us./ These, our bodies, possessed by light./ Tell me we’ll never get used to it.” From Jesse’s direction, I heard “ruined” and “light.” Then “used to it,” our words almost coterminous.
Of course, there are times she is opaque. On a bus in the Italian countryside. It was late summer. The air-conditioner had broken. It was almost a hundred degrees outside, and the windows were inoperable. She howled. Her arms and legs grew red and hot. Aside from her obvious discomfort, I was hyper-aware of the other passengers. Her screams were the only sound on the otherwise quiet yet disquiet bus. (I didn’t know then that some children with Down syndrome have very low tolerance for extreme temperatures and can’t regulate their body temperature. She was going into a heat stroke, and we didn’t know it.)
And then, other times when I don’t understand her, it’s less urgent. She goes in her room and closes the door. I watch, wait a bit, then open it to see what she’s doing. She was in front of her floor mirror, performing for herself, pretending what I’m not sure. But I don’t feel like I need to know. She was doing her thing, being herself to herself and isn’t in any immediate need to communicate with anyone.
Writing poetry is not a singular experience, but often it feels like what Wayne Koestenbaum has described as “reckless verbal improvisation.” The goal for me in this kind of composing is “to get out ahead of the internal editor,” as CAConrad put it to Rachel Zucker describing his composing process involving somatic ritual followed by a series of fast writes. Trying to get around habituated streambeds of thought.
The look on my daughter’s face, talking in the mirror to herself--I recognize the attitude of composition that I have when I’m writing poetry. I’m seeing how the words feel in my mouth, the muscles in my lips, seeing how they land.
I think that I’ve been equating linguistic capacity with personhood, pushing the limits of the idea that language is constitutive of thought and applying that to the individual rather than the collective. That being the language animal, there was something fundamentally subhuman about speech pathology.
But limiting my orientation to the world to the linguistic is becoming what I think has kept me from becoming fully human. By privileging the linguistic, I’ve injured touch, the aural (off the page), the athletic, color, the feeling of weight and density.
She doesn’t have the word love, but she loves me. She doesn’t have to know or to speak the word for it to be true.
On Thursday nights during our writing class, it’s the case that I’ve been on campus for twelve hours, my first class being the first class of the day and my last class being the last class of the day. And when I’m tired, one of the first things to go is my ability to access words. My mind simply can’t find the word I need.
We were workshopping a story about a mother who had cancer. She called her three children in her room and told them that “No one is going anywhere,” as a way to calm their fears about what her body was experiencing. We talked about this lie; we’re all going to die. One student said, “I hate that.”
I said, “But that’s what gives the moments in our lives weight, because they are---.” My mind went blank. Like my infant self, tongue-tied.
“Finite,” Jesse blurted. It wasn’t his deliberate speech but his involuntary speech, the difference noticeable to anyone for his attempt to muffle it, sort of like when someone says a word and tries to cough at the same time.
“Exactly,” I said.
Site powered by Weebly. Managed by Porkbun