Tag Archives: Syracuse University

Transitions

We returned home last night from the ICI Conference (Institute on Communication and Inclusion) at Syracuse University and though it was wonderful to see those family members we’d left behind, being “back” is hard.  I don’t do transitions well. As a kid I would eagerly anticipate having a sleepover at a friend’s house weeks in advance, only to return home depressed.  It is still like that.  It often takes several days before the weight of sadness, that accompanies returning from a place where I’ve had a terrific time, is lifted.  Even though all that excitement, fun and the constant interaction with lots of people is exhausting.  Yesterday I was so emotional I knew I was in overwhelm, but we had a whole day of presentations ahead of us, so I ploughed through.

When I reach this point of exhaustion and overwhelm I become emotional.  Anything can set off a torrent of tears.  If someone says something even remotely critical the tears begin to flow, watching a movie, saying good-bye, tears and more tears; it’s as though the social dam I’ve constructed gets chipped away until there are too many cracks to hold the feelings back.  Everything becomes intense, my friends become a lifeline, it’s no longer just nice to see them, I feel dependent upon them, as if without them, I may die, words spoken with anything other than kindness, feel like knives, music induces feelings of pain and euphoria all at the same time.  I am hyper aware of and easily overloaded with the feelings and interactions and the sheer numbers of people.  This is how I’ve always been.  I understand this about myself.  I am able to function, barely, but not without lots of tears.  So much so that Ibby handed me her plaid handkerchief at one point, causing me to cry even louder and harder and then came over and hugged me as I sobbed on her shoulder.

I become hyper aware of the injustices of the world, I feel both ecstatic to be among so many wonderfully accepting people, while also horrified by the “real” world we live in and must soon return to.  The disconnect starts to feel impossible.  I begin to believe the change so many are trying to create will never come about.  I slide helplessly into despair.  And then I bolster myself up by remembering other people’s words.  At yesterday’s keynote address with Jamie Burke, Sue Rubin, Tracy Thresher and Larry Bissonnette, Tracy typed,  “Larry likes typing out poking fingers on hurtful labeling to push his wrecking ball toward brick walls of structures of old thinking.  What I intend is to push my own ball of fiery passion of change to the global stage and shatter the glass like Pascal did in the city.  Pascal clumsily broke the water glass; Tracy intends to go about the Inclusion Movement more like George Clooney.  Charming Tracy’s plan; worldly connections repairing injustices is the wretches-in-arms plan.”

I have the choice to join all those who are using their “own ball of fiery passion”.  It feels less like a choice and more like an honor.   We can join each other.  Linking our arms, united in making society understand that to include is in everyone’s best interests and all will benefit.

I am ending with photographs from the last three days spent immersed in a world that accepted, appreciated and above all else, presumed one another competent…

Ibby
Ib

Christine Ashby
Christy

Rosemary Crossley
Rosie

Em types with Leah
Leah& Em

Me, Amy & Ibby after our presentation, “Blogging to Communicate”
Ariane, Amy & Ib

Em takes the stage
*Em

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ibby & Larry Bissonnette
Ib&Larrry

Douglas Biklen and Me
Doug &Me

Doug Biklen and Ibby
Ib& doug

Doug Biklen & Amy Sequenzia
Doug&Amy

Mark Utter during the Q & A after the screening of his film, I am in here
Mark Utter

Anne Donnellan
Anne Donnallan

Typing with Emma
Me & Em

Sue Rubin
Sue Rubin

Tracy Thresher
Leading Man Tracy

Emma’s String
Em's String

Em, Mark Utter & Ibby
Em, Mark & Ib

 

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.

Live From The ICI Conference In Syracuse!

IbYesterday began with Ibby, as any proper day should.  Ib, assistant professor, blogger, activist, advocate and all around amazing human being, gave the keynote opening day address at the Institute on Communication and Inclusion here in Syracuse.  The room was packed.  Everywhere you looked people milled about from all over the country, ranging in age from under ten years to over seventy.  Some sat in wheelchairs, others moved their bodies back and forth, from side to side, some quickly in staccato gestures, others more slowly and rhythmically. Verbal utterances were not cause for stares or frowns, this was not a “quiet room” but a room filled with the sound of human beings in all their vibrant diversity, being themselves without censorship, without admonishment.  You can’t go to a conference like this and not get swept up in the beauty of unedited human beings being.

Ib & SteveJust prior to Ibby’s address I met the wonderfully talented, Stephen Kuusisto of the blog Planet of the Blind. Steve is a poet, author, professor, disability advocate and Fulbright Scholar.  Douglas Biklen, Dean of the School of Education at Syracuse University introduced us. This is Doug’s final conference as acting Dean and so I am particularly grateful to be here before he leaves.

This photo of Ibby and Steve Kuusisto was taken during Amy Sequenzia, Ibby and my presentation, “Blogging to Communicate.”

RosieAfter the keynote, we went to our “Hands-On Skill Building Workshop” with Rosemary Crossley.  Rosie is the one who developed facilitated typing more than 30 years ago in Australia, so I was very eager to meet her, finally.  Rosie went around the room and asked people to introduce themselves.  When she came to Emma, Em sat up and said loudly, “I don’t want to type!  My name is Emma.” To which Rosie said, “Oh! Hello Emma, how old are you?”  Em responded with, “I’m nine.” (Em is actually eleven, but tells people she’s nine, when asked.)  “Have you ever been to Australia?” Rosie asked.  “Yes!” Em answered. This time, however Rosie had a small machine that she held with a “yes” and “no” button on it and a laminated square with the words “yes” and “no”.  “Have you been to Australia?” she asked again.  This time Em, without hesitation pressed the “no” button.  A little later Rosie came and sat next to Emma and asked, “What’s your favorite color?”  While supporting Emma’s elbow, lightly with one hand, Em typed, “Pink.  What’s yours?” Then Em astonished me by continuing to type, “I hate yellow.”  Hate?  Seriously?  I hate yellow too, but really, I had no idea my daughter hated anything, much less a color!  Presume competence.  I’m going to reread that post I wrote…

RalphLater in the day Ralph Savarese and Steve Kuusisto presented on “Autism, the Brain and Poetic Creativity”  where they led participants in a poetry writing workshop.  After which Emma typed to Pascal, “really am telling my sameness self that its good to find different ways to that things and watching Ralph is fun.”  So there you go, Ralph.  A solid endorsement from Em.

Amy Sequenzia gave a personal and moving presentation about blogging and why she blogs, followed by me and then Ib who also spoke about why blogging is such a terrific platform, not least of all because it is interactive and immediate.  Ib then opened our presentation up for questions and comments and then…

Ib, Amy & Ariane

well, and then Em indicated that she’d like to say a few words, so Ib introduced her and Em took over, beginning with – “Ladies and Gentleman…” and ending with a list of all the various doctors, therapists, and people we once took her to see, followed by a list of all the people who now help us.  “Now we have Pascal and Harvey and Ibby and Ibbia (because Ibby has been given her own country, apparently) and Soma…”   Take it away Em!

It's the Em show

*I have to interrupt this post as I have to get to Anne Donnellan’s keynote starting in 30 minutes.  Peyton and Dianne Goddard sent me a copy of Anne’s book two weeks ago and I’ve been carrying it with me ever since.  So when I ran into Anne yesterday I pulled it out and showed it to her.  She is lovely and I cannot wait to hear her.  More to come!

One last photo though before I leave you…

Me with Amy and Ib – you guys rock!

Me, Amy & Ib