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.
"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."ReplyDelete
This is so incredibly powerful, this entire post. It seems your experience as a family is making very deep young men of your sons. i am so moved by this post, by what Sophie is accomplishing, by your boys' participation, by your voice here, full of tears and gratitude.
thank you for this. i love you so.
This looks simply fantastic and I love the smiling Sophie. She is obviously enjoying her self.ReplyDelete
This gave me goosebumps.ReplyDelete
Angella Lister said it what I thought but probably said it better.ReplyDelete
Oh, how amazing! I love reading about Sophie communicating--how powerful! How important for that to be possible for her.ReplyDelete
And I, too, loved the quote. It went with the tree image so perfectly.
Wow. Especially love the quote about disability being a west wind that blows in our lives. So true.ReplyDelete
This is beautiful. The next time I hear someone bemoan and bash our technology-driven society I'm going to tell them all about your pretty mermaid.ReplyDelete
The smile. That is what got me. Lump in my throat, beautiful smile. Oh, and there was this :ReplyDelete
"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."
Wow. On the smile and the passage.
Very cool! I loved reading this.ReplyDelete
I love the way Sophie sits with her legs astride and the one foot resting upon the opposite knee. For a girl in a wheel chair, she manages to exude a amazing amount of swagger.ReplyDelete
Loved that quote.
Elizabeth, you have no idea how winged your words are.ReplyDelete
It is so good to see the engagement in Sophie's face. And what a wonderful setting for this good work.ReplyDelete
This is how things should be.
I am in tears. There is something so powerful about finding a way to communicate. I love that this community exists to unlock the connections these kids can make with others. Thank you for sharing.ReplyDelete
Absolutely incredible. What a gift.ReplyDelete
Benevolence and protection. That's what the world needs. Sophie and all of us.ReplyDelete
What amazing photos of Sophie at work and play.
Joyful tears over this. Powerful, indeed.ReplyDelete
So beautiful, that camp looks amazing, and as always, your words are, too. xoReplyDelete
I would echo what Angella said, and add that you are THE SHIT.ReplyDelete
Very powerful. I wish we had a camp like that here for Daniel to take part in. We're going to start private therapy, so maybe there's hope!ReplyDelete
Changed by a Child is one of my favorite books, too.
This reminds me of your post about the Chinese acupuncturist (? Forgive me if I have the details wrong) who said, "She in there. She know."
I love that there are people out there willing to fight for others and their need to communicate.
Now, that's my kind of summer camp.ReplyDelete
I'm getting an iPad for my classroom this year and I'm so excited.
Thank you, Elizabeth. This piece is truly remarkable and expresses so much of what we all feel about Communicamp and what it's doing for our kids. I saw it everything you wrote of, in every child, at any given moment during this past two weeks. These are indeed the most beautiful ones...ReplyDelete
"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."ReplyDelete
Ah sweet jesus. This made me cry.
Thank you for this.
Oh, I am so glad you and Sophie had such a wonderful experience at camp!! I read faithfully and I know some of the hard things you have dealt with. It is tough to read the hard stuff (but thanks always for sharing it) but it is a joy to read the good things. And I totally agree about the "swagger" comment. :-) She looks like she is chillin' there with her bro. :-)ReplyDelete
Carrie T. - mom to 4 from Korea, including our daughter with SNs
I remember that passage.ReplyDelete
What a good use of technology.
elizabeth, in stopping to place my comment here in the comment box, to express somehow the honor i feel at this glimpse of your family, the title of the book in the column just to my right caught my eye:ReplyDelete
Even Silence Has an End (Ingrid Bettencourt).
indeed--that's exactly what i want to say about sophie and what you do here on this blog.
Oh my, what a WONDERFUL place!ReplyDelete
So great, so very great. What a terrific concept for a camp.ReplyDelete
I love the photos. Thank you, thank you, once again.
First, thank you for the quote which I will borrow. In some fashion, I believe we all have a wind which we must learn to accommodate, though clearly some much more so than others. It gives happiness to those who read you to know of the people, the moments, the participation for which you find gratitude...and happiness for Sohphie's sparkling summer.ReplyDelete
First the humor: That first photo it looks like that tree is growing out of that dude's head!ReplyDelete
Second the poignancy: It is amazing to me what this touch-screen technology really does mean to so many people. I'm continually flabbergasted by it all. Who'da thunk it?
Tears stinging my eyes at this beautiful gift from the Elks. I hope you submit this as an article for their national newsletter (assuming they have one) and your local paper. It's mind-expanding, it's encouraging, and it's a blessing to learn about it. (Apple should also know how their device is opening pathways of communication in a REAL way. They are so rich and maybe they will be inspired to donate more.) Thank you for inviting us to share in it!ReplyDelete
Wow. Communicamp looks amazing. I love Sophie's aide. I want to hug her. Look at Sophie go! So inspiring.ReplyDelete