Autism Vox

The Lift of His Eyebrows: Honoring Sgt. Shurvon Philips

by Kristina Chew, PhD on May 26th, 2008

It’s Memorial Day here in the US: We’ve seen the red white and blue flying and people lining up to watch parades in honor of those who’ve served. Last night in the New York Times Magazine, I read the story of 27-year-old Sgt. Shurvon Philips, who suffered severe traumatic brain injury (T.B.I.) after an anti-tank mine exploded under his Humvee in Iraq. He lives with his mother, Gail Ulerie, who cares for him round the clock, sister Candace and her young children, Malik and Kyla, in Cleveland. Shurvon is unable to move his body or to talk and, twice a week, does three-hour stints of physical and speech therapy.

Reading about Sgt. Philips’ speech therapy—-he uses a Dynavox for some requests—struck many familiar chords in me:

The therapist worked with Shurvon to produce an “ah” sound — he opened his mouth wide and, seconds later, a faint, agonized approximation came out. And she made him practice on his DynaVox, a computer that can speak for him, its screen fixed to his wheelchair or bed. The various icons can generate phrases, like “I am 27,” delivered in a robotic voice that sounds straight out of an old sci-fi movie.

One problem with the device, which Shurvon began trying to use at the V.A. hospital before going to R.I.C., has been how to best click on the icons. At the hospital in Cleveland he tried a nose piece that communicated with the computer whenever he flared a nostril, and at R.I.C. he tried a camera that directed the cursor by tracking his pupils. But the nostril-flaring proved too awkward, and the slight back-tilt of his head, another symptom of his injury, made it difficult to position the camera. As the mobility in Shurvon’s right hand improved, technicians at R.I.C. settled on using a thin cord attached to his right wrist; his tugs can activate an icon. His tugs are deliberate, delayed.

And the icons on his screen are limited. In Chicago, he graduated from an 8- to a 12-choice system; clicking on the “feelings” icon, with its childish renditions of smiley and frowning faces, will lead him to 12 choices including “frustrated” and “mad” and “O.K.” and “proud,” and the computer will then give robotic voice to his selection. The R.I.C. technicians programmed his DynaVox so that Shurvon can tell people that he wants the TV channel changed or so that he can name one of his favorite reggae songs, “Girls,” by Beenie Man, but his system can’t provide much in the way of nuanced personal expression, and he’s a long, long way from being able to navigate programs that would let him construct speech by picking from a wide array of words. For now, except when he’s practicing with his therapist, his DynaVox doesn’t get much use.

In the van, on the ride home, I asked Shurvon if he ever thought about going back to college. He gave the minimal lift of his eyebrows. His mother added that he wants to get a master’s degree.

It’s those seemingly infinitesimal cues—-an eyebrow movement, a squint of an eye—-that I’ve learned to read to understand what Charlie is saying to me. Charlie has not used a DynaVox but he spent a couple of years being at least semi-frustrated from using PECS (picture-exchange communication system). Charlie first learned to communicate using modified sign language and then word approximations (”yah” was “want”). The PECS icons just seemed too cumbersome and not able to keep up with the speech of what Charlie wanted to tell us.

The NYT article also describes Gail Ulerie caring—bathing, dressing, more—-her son. Charlie is very much able-bodied, but I still have to help with a lot of basic self-help skills (we’ve pretty much got tooth-brushing down; working on face-washing and, having a buzz cut, Charlie has little need to brush his hair). And Charlie might always need at least a few reminders.

Charlie will not be able to serve his country as Sgt. Philips has and I know Charlie’s story is very different. Charlie’s got the body of a very active 11-year-old boy who’s just getting a sense of his growing physical strength. His speech is very minimal and—-while we think very much that Charlie everything said around him—-the words that Charlie uses are limited. But I am another mother who looks for that lift of the eyebrow and who’ll do what she needs to do to help her son, and who cherishes every, every accomplishment, no matter how small they might seem.

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POSTED IN: Holidays, Language, Military, Neuroscience, Parenting