The ICI Conference – Day 2

Anne DonnallanDr. Anne Donnellan, Professor in the School of Leadership and Education Sciences at the University of San Diego gave the keynote address yesterday morning.  She said,  “I’m very happy to say, when it’s true – I don’t know.”  This sentence should be framed and placed inside of every doctor’s, educator’s and professional’s office.  In fact, this should be in every human being’s home, office, place of work, car… well, you get the idea.  Anne went on to say, “If you don’t know the answer, if you’re not sure, what are you going to say?”  She waited for those in the audience who speak to shout, “I don’t know!”  I have pages of notes from Anne’s speech which centered on how autism is mischaracterized as a communication, behavioral and social deficit, yet the massive sensory-movement issues that most Autistics experience is completely ignored.  Early in her presentation she said, “We didn’t notice people with autism have bodies.”  And a little later she said, “We tend to invent knowledge.”  I will be reading Anne’s book, Autism: Sensory-Movement Differences and Diversity by Martha R. Leary and Anne M. Donnellan.

The bulk of the day was spent supporting Em in her typing.   (I dreamt last night Em had taken over Emma’s Hope Book Face Book page!) Our session with Rosemary Crossley was terrific, with a young woman who is aiding Rosie, and all of twenty years old, came over and expertly supported Em in her typing.  Em proceeded to inform us that “math is not my favorite subject in school” and “The subject I like is english.”  Which… yeah…  because excuse, me young lady, but there’s this blog with YOUR name on it, all set to go!  Trying hard to contain my excitement.  Em then typed, “I am very creative.”  And in answer to my question about whether she’d like to maybe write something for the blog at some point, she typed, “I would like that.”  Yet as I write this, I paused just now and asked her if she’d like to write  something now, to which she gave me a resounding “NO!”  But she did say that she didn’t mind if I quoted her in the sentences above.  This is a work in progress for both of us!

Emily and Mark UtterAfter lunch Em and I watched a wonderful documentary by Mark Utter called, “I am in here.”  Before the movie began Mark typed, “i am totally happy you all are moving with me down this fine river.”  Mark is wonderful, and I have to say, he is one of my new favorite friends, even though we have exchanged few words.  I intend to devote a post to his creative and moving movie about what daily life is like for him and how he would respond to people were he able to talk.  Mark is one of a number of people we have met that I hope to stay in touch with.

PascalLater Em and I met with another family who also live in New York City hoping to have a conversation between Em and a non-speaking teen.  Pascal agreed to help facilitate, but as it turned out, I was able to work with Em pretty well with only a few pointers from Pascal.  It was a great day, though it’s really hard work for Em.  Later she typed with Pascal, “Much of my work with people is patterns and things like spelling is like that…”  And then she added, “And I love to work with Pascal.”
This photograph of Pascal was taken by Emma.

I must end this post now, but not before saying, these conferences are profound.  They are profound because of how they are completely unlike the world we live in.  They include, embrace and celebrate difference.  Every person is treated with respect.  People are allowed to be, without judgment.  It is bittersweet to be here, because this afternoon we will have to leave and return to the world that is not even remotely like this tiny piece, of what can only be described as, paradise.

8 responses to “The ICI Conference – Day 2

  1. Oh how I wish our life had allowed Emma to attend.

  2. Love these updates and insights. So happy for you and Em!

  3. It’s so great that you’re getting to know your daughter I’m so happy for you.

  4. Alexandra Woods

    I continue to learn so much from your posts, Ariane. Really amazing.

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