I have a friend who, when they met over a year ago, Emma observed, “Barb doesn’t talk“. “Doesn’t talk” means she doesn’t talk with her mouth to communicate the way she can and does when writing. Her name is Barb Rentenbach and she and her therapist, Lois Prislovsky wrote a book, I Might Be You. I’ve written about Barb and Lois before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘. If you haven’t read their book, you must. (Continue reading for a surprise later in this post about that book.)
I met Barb at the Autcom Conference in 2012 and though I didn’t know it at the time, Barb and Lois would have an enormous impact on me that was far-reaching. You see, it was because of Larry Bissonnette, Tracy Thresher, a boy I saw writing to communicate, and finally Barb, all of whom I met at the Autcom Conference, that I began looking into other ways for my daughter to communicate. (You can read more about the process by clicking “How We Got Here“.) Even though Emma can and does use her voice to speak, she has described her attempts to communicate with spoken language as, “I can’t talk the way I think.” Later Emma wrote, “Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.”
In Barb’s most recent blog post (I urge everyone to read it) – Open Hearted Letter Quilt to Andrew Solomon – she writes about autism, empathy, and how autistic people are often misunderstood:
“It’s like Saxe’s (1873) poem, “The Blindmen and the Elephant” where each blind man is partly in the right as he describes an elephant piece he studies, but all are in the wrong in knowing an elephant.
This autistic pachyderm will expand perceptions by presenting more pieces.”
Barb goes on to describe herself, “I don’t look normal. I appear quite messed up and a prime candidate for nothing but pity and patronization, with a sprinkling of repulsion and fear. I am disguised as a poor thinker.”
Still further along she quotes Emma:
“To quote my mentor Emma who is 12 (This old dog is all about learning new tricks) who wrote this by saying each letter aloud she pointed to it on a stencil board, “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”
This short video shows Barb typing just a few days ago.
Now there are some people who have suggested Barb is not typing on her own. They believe that the person whose two fingers are tentatively touching her back are actually guiding her and that it is their voice and not hers that we are reading. This is a video of Barb writing four months ago…
And here is a video of Barb typing in 2011…
I am showing you these clips so you can see Barb’s obvious progress and please note, Barb is not a child. I know that’s obvious, but it seems many people forget this or have trouble believing that people of all ages can and do progress. Just as Barb works hard to become more independent while typing, so does my daughter. Emma’s way of writing is slightly different in that no one is physically touching her and she points to letters on a letter board, but she is working hard to move from pointing to the stencil letter board to the laminated letter board to a qwerty keyboard, with the eventual goal – being able to type on a computer regardless of who might be seated nearby.
As all these videos show, none of this is easy. Barb is working hard and so is Emma. Some days go more smoothly than others. As Barb writes –
“I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time. Please try harder later.”
For any of you who would like to have a hard cover copy of Barb and Lois’ terrific book, I Might Be You, I am giving away five hard cover copies. Please comment below, saying something about yourself and why this book is of interest. I will place all comments into a hat and will choose five at random. If your comment is chosen I will contact you, via the email you use to comment, for your street address, where I will send you your copy of Barb and Lois’ MUST READ book at no cost to you and in appreciation to Barb, Lois and Emma for their hard work in bringing much-needed awareness to all who are like Barb and my daughter!
Emma, Barb Rentenbach and Lois Prislovsky