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!
This is the typed “conversation” I had with Emma last night inspired by the wonderful comments left here yesterday. This was done with very little talking. Emma’s replies are in italics.
“Hi Emma. I know one of your favorite songs is “Beat it”. What other songs do you like?
Emma likes Fireworks. Emma likes to go swimming.
Hey! Did you go swimming today?
Yes, it cold go swimming.
Emma, was the water cold or was the air outside cold or both?
Both cold outside.
It is cold outside now because it is fall. I like the fall when the air gets colder. Do you like the fall too?
Yes, I do like the fall too.
What do you want to do this weekend?
I want to have a weekend with Jackie at the Vanderbilt wiyemseeay. And go swimming.”
This was HUGE for Emma and me. Rereading it now I’m kicking myself that I didn’t ask better questions and follow her lead more instead of directing the conversation. For example I wish I’d spent more time talking to her about swimming instead of going off about the seasons, which were of little if any interest to her. I could have asked her a great many questions about the pool and swimming and the water temperature, but didn’t. I was so surprised when she wrote, “Yes, it cold go swimming.” I literally laughed out loud when she wrote that, because this is just huge for her to introduce a new thought, to volunteer new information when typing together. Excitement doesn’t really sum up what I felt. I was ecstatic!
Emma kept trying to read my typed words out loud, but I reminded her to read silently. I made a huge number of mistakes while having this conversation with her. I corrected her spelling a couple of times, and wished I hadn’t. I never know whether it’s best to let her spell things and go over the spelling later, separately or whether its better to correct it right away or better to leave it alone. I wanted her to feel encouraged, supported and cheered on, not criticized. So that’s something I am still questioning. I also get so excited when she says anything off the grid, I get overwhelmed and can’t think what to say other than – “OMG you just introduced a new topic and I’m so excited!!” Maybe I can learn to relax a little and go with it a bit more. I am also aware that my excitement is an example of my NOT assuming competence or rather it is me feeling euphoric that Em shows her vast intelligence in a way that my NT brain can grasp. I really want to learn how to move away from that limited thinking on my part.
When Emma was diagnosed with autism I remember that first day when all the therapists came to our home to work with her. I’d done my homework, read all the materials the agency provided me with and then some. Yet, I remember how everything was “dumbed down”. Things that I knew she knew were treated as though she didn’t know them. Really simple things were suddenly a huge deal if she indicated she knew them. I remember vividly my confusion. I began to doubt everything I thought I knew or assumed about Emma. I completely capitulated to some set idea about my daughter given by a group of people who had never met her but made assumptions based on a single word – Autistic.
I’m old enough and have enough humility to admit I don’t know what I’m doing a great deal of the time. This is not a popular statement in our culture of bullshit reigning supreme, even if it’s all a lie, even if it means people who know almost nothing about a given topic, but who claim “expertise” are suddenly seen as having something sensible to say. The art of bullshit has become a well honed skill by about the age of ten these days. It’s amazing how quickly children learn to adopt it. Add a little chutzpah and you’ve got a kid who will go far in this world of ours without being particularly knowledgable in anything.
However, the art of bullshit requires a couple of things – a massive dose of ego and an ability to lie. My daughter Emma has neither of these. Still, I am feeling confident she will do well in this crazy world of ours.
Emma's Hope Book 