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.”