Tag Archives: typing to communicate

Educating Resting Minds (The Documentary: Unspoken)

Educating resting minds means patient repetition of mobile thinking.   My mind is lightning fast in a body whose parts often do things that give people a different impression.

How best to sway doubting minds?

They say write what you know and what could be better than having a film crew follow you around to document the lightning and the thunder.

Mom will add some things about the documentary, Unspoken, here now:

While Emma just wandered off, confident in my ability to take the baton she’s handed me and run with it, I’m not as sure.  So be kind to me.  I’ll do my best, but first, a couple of things about the documentary, Unspoken.

Unspoken is the name of the documentary Emma is co-directing with the very talented Julia Ngeow, produced by the equally talented Geneva Peschka and executive producer Marquise Stillwell from Open Box.   This is Emma’s project.   Not mine.  And if you’ve never heard of any of these folks, please go to the links I’ve provided.  Emma is working with an exceptionally talented group of people!

When Emma recently had a meeting with Unspoken’s editor, Marco Perez, he asked Emma, “Why are you doing this documentary?”  

Emma typed in response, “This is my life.  Mostly the positive, but sprinkled with salt on tough beliefs thought by others who decide they know what it’s like to be me or worse, don’t care.   This is about prejudices, segregation, human rights and fear.”

I then went on an impassioned, okay more like enraged, rant about societal expectations and so-called norms, the way autism and Autistic people are typically spoken of and to, how the voices of Autistic people are continually silenced, how infuriating it is, not to mention insulting (to say the very least) to Autistics and when I stopped to catch my breath I became aware of how loud my voice had gotten.  I mumbled something about how I obviously felt strongly about all of this and would stop talking now, thank you very much.  

And then Emma typed, “Let’s change people’s perceptions with love.  Can Mom be angry?  Yes, because she loves intensely.”  

Yeah, because that’s the way Emma is.  And I gave birth to her.  And how she is, the way she is, astonishes and amazes and I could go on and on and on and on about how proud and grateful I am to know such a person as her, let alone be her mother, but then that just might fall into the whole ranting thing again and I promised I wouldn’t do that.  So I’ll just stop now.  Again.  Really.  Enough.  

 Unspoken is in the hands of the very capable and extremely gifted editor Marco Perez.  Everyone is hoping for a release date sometime in 2016.  

Unspoken has a Facebook page – Unspoken Documentary.  So go over to Facebook and show it some love.   Okay there is no “love” button on Facebook, but the “like” button works really well.  (Or/and you can leave some of that love here too.)

Ready?  Set,  
Go!

Emma - 2015

Emma in Santorini, Greece August, 2015 Photograph by Ariane Zurcher

Life and Expectations

Wading into the world takes achingly long when comparing the expectation with the reality.  Vibrant expectations swirl and dance a tempting flurry of ease and take no time to build the skills needed in real life.  Disappointment embraces ecstatic expectation when stories walk along a more difficult path.  Finding the wonder and natural tempo in working to achieve shimmers and eventually outlasts fleeting expectation.

expectations

When Awareness Harms

Let’s talk about needing green minds, eager thinking, waiting for butter to spread onto toast.  Let’s talk about excitable pink ideas, ah-ha moments of lovely surprise filling the cavernous space of other understanding.  Now we can behave differently.

None of wisdom’s stars ached for commonly held beliefs without questioning them all.

Have you asked yourself whether the awareness campaigns are helping?

What exactly have they made you aware of?

Does your newly found awareness help you understand an Autistic person?

How so?

What about Autistic neurology?

Do you believe you understand what the brightest minds in the world admit they are baffled by?

How about treating Autistic people the way you would hope to be treated?

I vote for love and laughter.

Laughing in Red

Laughing in Red

Food: Friend or Foe?

Food understands emotions in ways no words can, but sometimes the body disagrees and chaos ensues.  Mind begins to roar and everyone feels misunderstood.  Trying to appease all parties is impossible.

Have you ever felt full, but ignored the body’s message and eaten more or eaten foods your body is not friends with?  Do certain feelings prefer certain types of food?

Understanding that some foods emotions are in love with are enemies to the body is a devastating realization.  Being kind to all involved is challenging and maybe only a few people have truly accomplished this.

Pancakes!

Pancakes!

Becoming Change

Change is upon us.

Look around.  What do you see?  Do you see changes in your life?

Backwards movement can be labeled bad, but sometimes it is not.  Maybe like human evolution, lasting change must be slow.

Meandering along with inevitable change benefits some, whose go-with-the-flow attitude is like starlings flying in formation, but if only a few break away, everything changes.

Have you ever watched starlings?

Here.

Aren’t they beautiful?

Oh, how I should like to be one of the starlings to lead a new way.

Starlings

Starlings

Story About A Teen Girl

This is a story about a teen girl chasing a dream to be a singer, despite being unable to talk…

The first time she heard a voice being used as an instrument, was the day she would mark as euphoric.  How hard able bodied people have to work to make their visions come to life, caused her to doubt whether she could dare to desire such a career for herself.  Speaking was almost impossible though she was given the tools to sing words by hitting letters on a keyboard.  She knew with determination, practice and patience she could, at least, try.  A challenge she embraced and will tackle greedily.

Easy and challenge are not friends, but joy and challenge can be.

Find joy in challenges and life changes.

Emma Singing

Emma Singing

A Case for Merlin ~ By Emma

This is Merlin

This is Merlin

Nothing vanishes without questioning Merlin’s participation in the disappearance.  He never admits to wrong-doing, but instead greets the attention with purrs.  Even dog lovers fall under Merlin’s spell, charming the most biased minds to rethink what they had assumed true of all cats.

Merlin is unusual because he plays fetch and follows his favorite humans around with devotion.  If you don’t like cats it is because you have not yet met our Merlin.

But if you ever lose something, don’t blame Merlin.  He had nothing to do with it.

Merlin approved this post.  🐾

Where's Merlin?

Where’s Merlin?

Merlin among the cookie jars.

Merlin among the cookie jars

“Outside Looking In” ~ By Emma

Outside looking in on a world with a  different reality.

There is room for all.

Benign feelings contradict human thoughts about survival.

We treat others with care and feel the joy that comes with that.  We treat others harshly and then pain is felt by both.

Problems arise when people take pleasure in other’s pain.  Words cause joy, but also can cause pain.

Better to sing and dance!

This is what Emma wrote this morning in answer to my question, “What do you want to blog about this morning?”

We have been studying gene mutation, evolution, Darwin and how species adapt to their environment.  We have also just finished reading Romeo and Juliet.  I see the influence of all of these topics as well as Emma’s own unique and exquisitely compassionate take on this world and life.

Emma's Bowl made in ceramics

Emma’s Bowl made in ceramics with cookie cutters and then painted.

The Joys (and Terror) of Homeschooling

When we began homeschooling I was absolutely terrified.  I didn’t see how I could do it.  I closed my studio.  I set up a space in our home so that I could continue to run my business.  I told myself we would take each day as though it were one small baby step at a time.  I reminded myself when I began to hyperventilate from panic and fear that I just needed to concentrate on today and not the rest of our lives.  When my anxiety felt too difficult to manage I focused on the next moment.  I wrote lists, I purchased an old fashioned day calendar to write out subjects we would cover each day.  And then I sat down with Emma.  I asked her whether she thought homeschooling was a good idea.

Emma typed, “You believe in me and once creating versions of getting the truth, I am able to go far.”

I said, and I’m not exactly proud of my need for reassurance that she understood, but I said it anyway, “You realize it means you will not go back to school, right?”

Emma wrote, “Yes.  Taking my awesome nice teacher named mom what cabaret kind of life awaits me, I can only guess.”  A little later she wrote, “Know that love teaches more than doubt.”

I asked Emma how she wanted to do all of this.

She typed, “make a schedule mapping out lots of topics both written and spoken.”  Then she shocked me by writing, “sometime I want to learn another language, how about german?”

“Wow!  Seriously?” I asked.

“Yes.”

So here we are some eight months in and we are still finding our footing.  Each day is slightly different.  I still rely heavily on that old fashioned calendar where I fill in what we are working on and for how long.  Every morning I ask Emma for her input as to what she wants to learn.  I still, occasionally, feel I’m not doing enough.  I still, though far less frequently, find myself panicking and wondering how we are going to do this.  I still, though rarely, wonder if what we are teaching is enough.  But through out these last eight months, I have never felt so sure of anything we’ve done as this decision to homeschool.

As many of you know I am no stranger to regret.  Homeschooling is not on that list.  In fact, the only regret I have about homeschooling is that we didn’t do this sooner.

We have been blessed with a couple of wonderful family members who volunteer their time via Skype and one non-family member who teaches Emma literacy.  At the moment Emma is ripping through Act 4 of Romeo and Juliet.  Her sessions with K. are a highlight of her week.  K. tirelessly and enthusiastically comes to our home with new ideas of how Emma can make notes on text so that she can later cite parts of the play to back up her answers to questions like:  “At the end of Act 3, Scene 2, Juliet is of two minds about what has happened.  What are some words that demonstrate her split thinking?”

Together K. and Emma are exploring “writing craft” and delving into language, tension, foreshadowing, story arc and character development.  We use Khan Academy, Brain Pop, books, lots and lots of books and the internet to research and learn, as well as Rosetta Stone for German.  I also am using Duolingo to supplement Rosetta Stone for German, but Emma is not yet able to use it as it relies too much on writing.  The beauty of Rosetta Stone is that it relies on pointing to images to match text primarily.  In addition, we have a Graduate Student who comes to work on art and Emma is taking ceramics, swimming/diving, gymnastics and piano and guitar lessons.

We have created a little nook devoted to various materials we use for lessons and while it’s usually in a state of complete disarray, there is some semblance of order, even if only to me and Emma.  The single most essential item other than the keyboard and stand for the iPad in the photograph below is the Timed Timer.  Without it we would be lost.  Emma explained to me that when I forget to put on the timer she is filled with rising panic and anxiety.  She told me that without a visual timer, “time can stand still, while anxiety pushes all out of its way.”  We now own three different sizes of the Timed Timer, though Emma’s preference is the largest one they have, twelve inches, for our home sessions.

A nook of one's own...

A nook of one’s own…

Friendships

“Both of us writing this post is fine.  We are working together,”  Emma typed just now.

But first a short explanation is needed:  Twice a week Emma has an in person typed “chat” with her friend, Joey.  Yesterday’s chat was a little different because the person Joey usually writes with on Mondays was ill, so I asked Joey if he’d be okay with me holding the keyboard for both him and Emma.  He gave me the go-ahead and so I alternated between them, each taking a turn to type.

During their chat, Emma did what she often does, which is talk out loud.   Often she will talk about things that happened in the past, as in, “Maddy needs to sit down.  Maddy wasn’t nice to Emma” or it can be about the future as in, “chat with Joey,  get groceries, German, Math, Skype call with Granma, see Daddy, have dinner, sleep, wake-up, Skype call with Dr. C….” Emma wrote, “When my brain gets busy it remembers things that have been said to me or what I have heard.”  I wrote about this recently – Scripts – A Communication Bridge

As Emma and Joey typed with each other, Emma said aloud her nickname for Joey – JoeyAllison.  This is a nickname Emma came up with a few months ago when Joey unexpectedly appeared in the same place that someone named Allison had been, the last time we were in the building.

What follows is their chat, which they both agreed to share on this blog (I added punctuation to clarify with Emma’s approval):

J:  I begin this, you go next, not Monday schedule threw me.

(J. has a daily schedule and his and Emma’s “chat” wasn’t listed for Monday.)

E:  How was your thanksgiving?

J:  Good food I like, how about yours?

E:   Thanksgiving in two parts is the best way to celebrate holiday of gratitude.

(Emma kept saying out loud “JoeyAllison”)

J:  Liking nickname not much, but tolerating since hoping you will find another more likable.

E:   Joeyallison is etched into my brain, so hard to overwrite, but I will try.

J:   Knowing you make an effort helps, thanks.

E:  I don’t mean to hurt your feelings.   It’s meant in friendship.

Later Joey’s mom told me Joey’s middle name, which is oddly similar to the name Emma has taken to calling him.  I told Emma what his middle name was and she said it out loud several times, as though she were trying it out and then said, “good.”  Then she typed, “I will call Joey by his first and middle name to his face, if my mouth obeys, because he’s my friend while secretly saying JoeyAllison to myself.”

Friendship

Ideas, Insights and Discovery

This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.

I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views.  Thank you Emma for giving me permission to post our conversation.

Ariane:  I thought we could begin the day by discussing who you might like to interview and about what topic?

Emma:  Is the way here, thinking, knowing, and asking about another, helpful?

Ariane:  I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life.  Asking is a great way to understand another’s perspective.  Who would you like to interview?

Emma: Using questions to sing truths meaningfully speaks to all.

Ariane:  That’s so true!  Music is a universal language that can transcend words.

Emma:  What did those we cannot ask, say?

Ariane:  Who are you thinking of, Emma?

Emma:  Those who cannot speak and have no one who believes in their ability to communicate in other ways.

Ariane:  Here’s the thing though, we can ask.  We may not get an answer we understand, but we can still ask and I think that’s the beginning, right?  We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.

Emma:  Understanding that all human beings want connection is natural and fundamentally human.

Ariane:  I agree.  So Em, what was it like before you were able to type?

Emma:  Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.

Ariane:  Ah…  can you tell me more?

Emma:  Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.

Ariane:  I imagine interviewing someone must be hard, even now that you can type.  Would you say that’s true?

Emma:  Sometimes ease is not an option.

Ariane:  You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea.  I’m sorry.  What else should we do right now?

Emma:  How about a conversation using music and no words?

Ariane:  Great idea!

Some of the instruments Emma chose for us to use in our "conversation."

Some of the instruments Emma chose for us to use in our “conversation.”

An Interview with Emma About Halloween

What follows is an interview I did with Emma regarding her thoughts about Halloween.

Ariane:  What do you like best about Halloween?

Emma:  The excitement of dressing up in costumes with no attention paid for oddities.

Ariane:  There were a great many people out.  What was it like to be among such large crowds of people?

Emma:  Wanting to be a part of the crowd and not necessarily the same.  There is acceptance in that.

Ariane:  Did you like going from house to house and interacting with the people?

Emma:  Yes, I like having one day when I am not penalized by strangers for being me.

Ariane:  What else about Halloween that you like or do not like?

Emma:  I mostly enjoy being with so many, on a night when individuality is celebrated.

Family Photo - Halloween 2014

Family Photo: (from left to right) Ariane, Emma, Richard & N. – Halloween 2014

Heading out while it's still light...

Heading out while it’s still light…

Many others had the same idea...

Many others had the same idea…

Richard terrified small children everywhere.

Richard takes a seat.  It’s hard work being this frightening.

A night when individuality is celebrated.  (Random stranger who was happy to pose with dogs.)

A night when individuality is celebrated. (Random stranger who was happy to pose with dogs.)

The dead rises… and gives out candy to all who ask.

The dead rises… and gives out candy to all who ask.

Heading home...

Heading home…

“Mistaken Beliefs People Have”

I asked Emma what she wanted to write about this afternoon during her writing session.  She typed, “Deconstructing the mistaken beliefs people have.”

I encouraged her to continue and asked what she was thinking of specifically.  She typed, “Mostly what people think they understand there cannot be, when talking about autism, creating lots of bad ideas that attract unoriginal therapies we must put up with.”

“Wow!  Keep going,” I urged.

“Actors playing roles the audience greets with enthusiasm, but an autistic person who doesn’t speak as expected, or at all, is booed off stages throughout the world.”

“Such a great point,” I said.

Emma typed, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

She smiled and then typed, “Put it on the blog!”

And so I am.

Austin1

The Assumptions We Make

When I first heard the words “presume competence” I had no idea what that meant.  I cobbled together some ideas of what I’d read and thought it meant and did my best to put them into action.  I did a great deal of “acting as if” and reminded myself, when my daughter wandered off in the middle of my explaining something to her, to keep talking anyway.  When she didn’t seem to look at whatever it was I was showing her I pretended that I knew she was taking it all in.  I pretended I believed, even when I didn’t.  And when my energy was depleted I would not place demands on either of us.  If I wasn’t able to take actions that were centered in presuming competence then I tried not to take any actions at all.

In the beginning the best I could do to show a presumption of competence was to read age appropriate books to her.  This was when Emma was eight years old.  I still remember the first book I read that wasn’t considered “young” for her age.  It was a biography of Balto, the Siberian Husky who raced through a blizzard in whiteout conditions delivering a much needed serum saving countless people sick with diphtheria in Alaska.  After Balto, I read a biography of Helen Keller specifically for children and then, because Emma seemed to enjoy it so much, we read the autobiography of Helen Keller, all the Mary Poppins books, followed by The Wizard of Oz, Alice in Wonderland, The Secret Garden, The Tale of Despereaux, Winn Dixie, Bridge to Terabithia,  Little Women and on and on we went.

At first I was unsure whether she was even listening, let alone enjoying any of these books.  But one night as she settled into bed, and when I didn’t pull out a book, Emma sat up and said very clearly and distinctly, “Helen Keller.”  Emma was not typing yet, so I wasn’t completely sure she really wanted me to read Helen Keller or if she was just saying the name because it was what I’d been reading.  I distinctly remember questioning whether she really wanted me to read the book because it interested her or because this was just part of an established routine and then I had a moment of guilt for doubting her.

As I said, Emma wasn’t typing yet, so there was little we could point to that backed up our decision to presume competence.  There was no “evidence” to suggest what we were doing had anything to do with anything other than a hope and a wish.  As presuming competence is not typically done in the general population or at any of the schools she went to, we were definitely doing things differently.  There were times when I doubted what we were doing. There were times I didn’t believe.  There were times I wondered – what if we’re wrong about all of this.  What if what everyone says is true, really is?  What if?  What if?

In the end I just kept coming back to the thought that presuming competence harmed no one, but to not presume competence and to be wrong would do tremendous damage.   As time went on and it became clear just how many mistakes we had made, I became more determined than ever to err on the side of support, encouragement and believing in her rather than the other way around.  It is strange that the focus is so often on all that is challenging, rather than encouraging all that is not.  Often that thought was the only thought that kept me moving forward.  Sometimes one idea, just a single idea is all it takes.

To presume competence became a living amends and a way of life.  At the very least it is something I can do that is not going to add another item to that lengthy list of mistakes made.

Emma and Balto ~ 2010

Emma and Balto ~ 2010

New Beginnings

Emma suggested I write about “new beginnings and offering ways to practice tolerance and hope for those who despair.”

I asked Emma what she suggested to those who are in despair.  She typed, “Best to give despair less space.”

“Yeah, okay.  How do you suggest people do that?” I asked.

“By filling the mind with all the beauty that is life,” Emma typed.

Yesterday Emma, B. and I talked about what happens when one becomes overwhelmed and how this is a human response, no matter what the neurology.  Overwhelm and feelings of not being able to cope are things all people feel from time to time.  We discussed different ways people try their best to cope: taking a break, taking a nap, acts of kindness, identifying all one has, gratitude, helping others, being alone, quiet, taking a bath or a walk, being in nature…

Emma described her feelings of overwhelm as, “my mind becomes jumbled and louder.”  Her words certainly resonated as this is exactly how I feel as well when everything seems too much and feels more than I can cope with.  Then Emma typed, “there should be practice before it gets too jumbled.”  This then led to a discussion about meditation and how those who meditate regularly call it “practice” because it is something one does daily and can help when “the mind becomes jumbled and louder.”

At the end of a lengthy conversation Emma typed, “I do want to try meditation.” And so we will.

The Buddha with Merlin

The Buddha with Merlin