This is a photo of a boy's finger, attached to a line that activates a switch. This boy uses his brain, his remarkably damaged yet powerful brain to move his finger, to push the patch, to activate the switch and thus to communicate.
This tree, growing on the bluff that overlooks the Pacific, frames the area where Sophie and her fellow campers eat lunch with their teachers and aides each day of Communicamp. It reminds me of a passage from one of my favorite books, Changed by a Child, by Barbara Gil:
A relentless southwest wind blows in the Laramie Range of Wyoming. It has blown for eons, scraping the mountains bare of soil, carving out the landscape. It causes trees to grow at an angle and lifts into the air things that ought to stay on the ground. It complicates all manner of human activity. People who live there successfully have reached an accomodation with the wind; some who couldn't, went insane.
Disability is a steady west wind in our lives. It permeates our existence, altering the topography of our days and causing our family and our life to grow at an angle. Without judging the wind as good or bad, we can observe the truth of it, acknowledge the force of it in our lives, and take the measure of our accommodation.
This is Millie, Sophie's aide who picks her up each morning and stays with her at camp, a woman who has worked in Sophie's classroom at her high school all year but who is surprised and thrilled at all Sophie can do at Communicamp. I am filled with gratitude for the loving care Millie has shown Sophie and for all that she's been open to learn. I hope that she will pass it along to Sophie's regular classroom teacher and aide.
Sophie is using the iPad as her main communication device, and the two teachers program it so that she can participate in the games and exercises that the entire group is engaged in doing. There is music and movement and laughter and smiling. When Henry, Oliver and I visited last week, we marveled at the kids and what they were accomplishing.
Sophie can't really use her hands effectively at all, can't point and certainly can't type. But she'll swipe at the iPad, and she is beginning to "get it."
Here, Oliver is participating in a game with Sophie. She is the conductor and swipes the picture of the instrument on her iPad. It's voice-activated, and Oliver must listen to what Sophie picks and then pick up and play that instrument. Sophie actually smiled during this, something that she does only rarely.
The group of students at Communicamp ranged in age and ability. None were verbal that I saw or heard, but all of them were working on some alternative means of communicating, using various devices like Big Macs, switches, computers and iPads. What happens when you see people like this, struggling to communicate, to express their wants and needs and answers to questions is a profound alteration in one's psyche. It's about nothing less than what it means to be human.
The camp is held at the Elk's Lodge in Redondo Beach. On their website, it says that The Benevolent and Protective Order of Elks Lodge 1378 offers community service and fellowship. I am filled with gratitude for this beautiful place, for the teachers of Communicamp, for the aides and for the new friends that Sophie has made.