It's early morning in Austin, and we are back here for Roman. Thing is, of all our traveling adventures this summer, the most absolutely extraordinary thing happened right here in the Lone Star State. It took only twenty-five minutes, and napalmed the way we think about Roman. He remained completely unchanged, if a little cranky afterwards. All it required was a pencil, a piece of paper, a stencil, and an Indian woman named Soma.
It's impossible to study autism therapies without stumbling on the controversial facilitated communication minefield. This method uses letter boards to bridge the autism communication gap, most often with nonverbal kids or with those who lack functional speech. Questions are asked, knowledge tested - as kids point to their answers, one painstaking letter at a time. The ultimate goal is to get the kids to keyboard independently on a device like an iPad, and the controversy detonates around if and to what degree the kids are actually communicating for themselves.
Roman is mostly silent or hyperverbal- that is, when not quiet, he talks all in a rush, words melting together, and mostly out of context. Like asking an absolute stranger about how a plane lands, and what about those hydraulics? Roman isn't the typical facilitated communication candidate, and I wondered if it could work at all with him.
I first heard of Soma Mukhopadhyay and her Rapid Prompting Method years ago- her now grown son has nonverbal autism and writes beautiful poetry. I bought Jeff a book of Tito's poems, The Mind Tree, several years back. I read a blog written by a mother of a girl with nonverbal autism, who was helped by Soma. Then I saw Soma work with another nonverbal kiddo in the Icelandic movie A Mother's Courage. The boy, Keli, was thought to have the IQ of a three year-old; doctors told his parents that they should consider institutionalizing him. Yet when he worked with Soma, the first sentence he spelled out was "I am real." POW! Now he's in grade level high school, loves Mark Twain, has just shy of a 4.0 GPA, and is composing a piece of music for Carnegie Hall. Beautiful!
The idea that there is a secret life, hidden capabilities, and unknown intelligence to these kids is seductive indeed for parents like me. I've learned to be happy for what Roman can do NOW, but a piece of me always wonders what he could achieve with better communication skills. With more independence? With less anxiety and more choices?
We wanted to find out. Problem is: Soma is super-booked. So when one of her regulars canceled, and an appointment became available the day after we planned to motor out of Austin in July, we took it as a sign. <-- thanks, karma!
We arrived a few minutes before our appointment and were trying to coax Roman out of the car without his beloved garbage truck, with little success. Soma bustled out into the parking lot, ushering us in, truck and all. She's Roman's height and dressed in a bright sari; speaking to him in her lovely, musical accent, she sits him down in the waiting room and gets right down to work.
"I'm thinking of some flowers. Can you tell me what color they are?," she asks Roman, handing him the pencil and holding out a stencil for him to point out his answer. Unsure, he starts out. M-R... "No no," she clucks, the letters have to make sense. Try again." She hands him back the pencil. Roman points to R-E-D. Personally, I'm pleased- Roman has been working on his CVC sight words (consonant-vowel-consonant) at school.
"What else can you tell me about the flowers?" Roman points to K-E-P, and the cynic in me starts to wonder if we should have saved our cash and driven straight through to Marfa as planned.* Then he points to a T. KEPT. Whatttttt? Then V-A-S-E. And this is right about when I burst into tears- not dainty, dignified Meryl Streep rivulets, but snorty, gaspy waterworks (that may have been accompanied by a snot bubble. I can neither confirm nor deny.)
And on they went, she chatting conversationally about why the sky was bright, while Roman tapped out L-I-G-H-T. With the -ght, mind you. This is uncharted territory, far beyond his school sight words. I try to get ahold of myself.
Just then, there was some noise in the room above us, and Roman became preoccupied with what was going on up there. Soma asked him to talk about the stairs, and he pointed to each of these letters, tapping out one of the first purposeful sentences we have ever heard:
I O-F-T-E-N L-I-K-E G-O-I-N-G U-P A-N-D L-O-O-K-I-N-G D-O-W-N
And he does too, because the best Nerf wars are waged from high ground in our house. Mind? Blown. I believe that was an ADVERB and two instances of the GERUND tense for 5,000. I'll take Math for 200 please. (<- Jeopardy! reference, kids.)
They did a little work on a number board next, and it turns out that while he's working on 1-10 in school, he can point out 367, add 1 to 8, and add 3 to 684. Um. Ooooookay.
So here we are again, for a four-day camp, to find out some more particulars of what's in Roman's noggin. Stay tuned next week for part two!
* After all, I hear that the best way to double your money is to fold it in half and put it back into your pocket.