First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.
Emma ended our presentation by singing one of her favorite songs, You’ll never see me again. We uploaded this separately and changed it from “public” to “unlisted” as someone has already given her singing performance a “thumbs down”. As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.
We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet. In the meantime here it is, though this link may only work until we’ve made the new video.
As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause. This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time. In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.
This morning I was reminded of how Emma, when asked, “How old are you?” will, without hesitation and in a matter-of-fact voice, say, “Nine.” If I give her the keyboard she will then type, “I am 12.” When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.” She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”
I asked Emma if she was willing to say more. She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all. Words pouring forth like water after a dam break, do not pay attention to me. I am so used to it I no longer fight. I dread the smiling talkers who insist on spoken language as proof of being and serious thought. Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”
I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”
Posted in Autism, icare4autism, Parenting
Tagged autism conference, autistic, body/mind, body/mind disconnect, communication, conference, language, non-speaking, presentation, presume competence, public speaking, Rapid Prompting Method, RPM, speaking, Speech, unreliable speech, video, writing
Emma came up with the title of yesterday’s presentation – My Body Does Not Obey My Mind. In preparation for our talk, Emma wrote, “how about discussing gleeful shouts and irreverent clapping as expressions of joy, but that many will see as indications of simple mindedness?” I told her I thought this was a great idea.
During our presentation Emma found a number of people in the audience who happily engaged in making faces with her. One of her favorite faces is one she refers to as “fish lips”. She proceeded to demonstrate “fish lips” and then, after successfully encouraging others to participate, she typed, “Doing fish lips to the audience is an expression of funny playfulness, but can be misinterpreted as simple mindedness. Silliness is acceptable in those who are believed smart, but for those like me, it indicates stupidity.” It was a powerful demonstration of yet another way in which someone like Emma is often misunderstood.
Before leaving to give our presentation yesterday, Emma and I had the following conversation:
Ariane: What other examples can you give that would demonstrate the body/mind disconnect, besides what you think and then what you might say out loud in contrast?
Emma: Things like not being able to sit still and needing to jump up. There are many examples like that. In my mind I am graceful and move like a dancer and speak with passion and the articulation of an acting coach.
Ariane: Aw… that’s really beautifully expressed, Emma. Really, really powerful.
I need to be careful not to take control of our presentation, because you must take the lead.
Emma: You will be very good. Don’t worry, I will be charming and will have your back.
Ariane: Oh, Emma, thank you for the encouragement, that means a lot to me.
Are you going to ask me questions if you think there’s something I’m missing or not talking about?
Emma: Yes, thoughts of fear worry you, but I know what I want to say.
This morning, we again discussed our presentation, which began with me asking Emma how she thought it went:
Emma: Spoken words cannot compete with typed power house wording of dramatic charm.
Ariane: You were charming! And, as always, so insightful! I’m so proud of you.
Emma: Teaching by real life demonstration, pleases all.
Ariane: I agree! What was the experience like for you, sitting in front of such a large audience?
Emma: Happiness, overwhelming joy to be able to show off my inner eloquent and funny self.
Ariane: You were eloquent and very funny! I think you touched a great many people yesterday. I think many will rethink what they have believed about autism and those they care for, who are autistic, because of you.
Emma: Brave honesty opens minds and hearts. I hope people will question what they have been told.
Ariane: I do too.
Emma: Horrible ideas about people cause many to do terrible things, and treat someone like me with repetitive demands for compliance.
Ariane: Perhaps meeting you, will make them pause and reconsider their approach.
Emma: Showing humor and compassion for them is my belief and way of prodding them to venture down different roads.
Ariane: You are such a wonderful example of loving kindness put into action!
Emma: Worry and fear are fueled by furious words spoken harshly, humor soothes, shining sunny rays spreading hope.
Ariane: It’s a much needed hope. I’m so proud of you.
Emma: Knowing pride brightens, giving gifts of hope dulls years of lingering sadness for schooling gone awry.
Richard videotaped our presentation and we are hoping to have at least a few clips of it available on our YouTube channel
this afternoon. Emma ended our presentation by getting up on the stage with the microphone and belting out a rousing rendition of September’s You’ll Never See Me Again. We have that on tape as well! Stay tuned…
Emma chose this photograph, taken last week while in Cape Cod, until we can pull some photos from the videotape of the conference.
Posted in Autism, icare4autism, Parenting
Tagged autistic, body/mind disconnect, communication, humor, icare4autism conference, language, Performing, presentation, public speaking, Rapid Prompting Method, RPM, RPM Autism, Speech, talkers, typing to communicate