Tag Archives: RPM

The Fan Stays Off

Seeds there

Virulent shoots hamper process

ingrates they throw everything into chaos,

disruptive and noisy I shout the same thought

weeding out the bad from the stillness.

Whispering calm directives – keep it cool, Emma –

but the thrashing divas hold the spotlight and won’t exit without a fight.

 

Timing is crucial.

Nobody can help bring order to the bothersome braying

that brutish tyrant who won’t allow others the time or space.

Patience is needed.

I am here

sometimes insistently so

but there is so much more to discover.

Loud-noise

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!

Hindering Progress

Digging through ghostly shards

pummeling the words that shout from within

understanding too much,

the vice grip of constant anxiety

offers the spoken words access that no one can fully know.

 

I fight to voice what I mean,

but “Mindy” and “Rebecca” crash through

and grab the microphone from my hand

that finds tenuous comfort in the string

I wrap around and around like a carousel.

August, 2014

August, 2014

I am More Than My Body

Wavering, derelict shouts hold different ideas about want.

Careening words push and shove their way out of my mouth,

the chatter cannot be reined in no matter how hard I try.

My mind is a starving questioner

with a body that pushes mute buttons in people’s minds.

Moments looking for connections to the two separate entities

knowing the possibilities are within reach,

if only I could beat those troublesome, noisy words back

to give the more contemplative thoughts equal opportunity.

Contemplative

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

Mirror, Mirror, What do you See?

I have a piece of writing to share.

When your eyes are drawn to a mirror, what do you see?

Is it familiar or unfamiliar?

Do you like what you see?

There may be a struggle with recognition.  Stay with it.

Imagine something beautiful.

Make yourself smile and hold it.

Recite a favorite story or joke.  This can be done in silence or in speaking.

Repeat your name however you would like to.

Do you like what you see?

The End ~ By Emma Zurcher-Long

Mirror, Mirror, What do you See?

Mirror, Mirror, What do you See?

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

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

Some Emma Quotes

Each day is a day of discovery with moments of elation and excitement…  at least this is my take away from the past few weeks.  Here are a few of Emma’s comments along the way that she gave me permission to post.

Discussing black holes  (Dr. C and Emma are kindred souls.)

Dr. C:  What has happened to the atomic structure within a black hole?

Emma:  Opportunity to riot.  Structure is chaotic.

Dr. C:  Basically this is correct.  The gravitational pull is so strong that the atomic structure has collapsed.  Thus nuclei and electrons are fused together with no space between them.

Emma: Just like society during a riot.

Dr. C:  These societal people have collapsed onto each other to further this analogy.

Emma:  Exactly.

After reading  Act 1 Scene 1 of Romeo and Juliet

Ariane:  So what do you think so far?

Emma:  Understand that it is a heady play and play on words that pities human rage and love equally.

Reading and discussing the Texas Revolution 

Emma:  Because of dissent a culture was born.

Regarding the Trail of Tears and how the Cherokee were the last tribe to make the grueling 800 plus mile trek to the “Indian Territories” I asked Emma to tell me something about this picture. 

Trail of Tears

Trail of Tears

Emma:  Exodus.  Forced displacement of people with little choice.  It tells something about man’s wish for power.  Oppression is an ongoing story.

And finally on the topic of being home and not in a classroom setting – Emma typed, “naturally living in world’s infinite candy store of learning is to be in constant awe.”

Intention

Yesterday we had an interesting discussion about the word “intention.”  The word was brought up innocently enough.  It was used in the context of asking about a larger project Emma has been working on.  “What does having intention mean to you?” Emma was asked.  

“To have intention is a skill.  To have intention is a hurdle to jump over,” Emma typed.  

I was sitting in the room as this conversation occurred, but was not part of it yet.  I was surprised by Emma’s answer.  I have never thought of intention as a skill or a hurdle.  Instead I’ve always thought of intention as being goal oriented.  Then Emma wrote, “the mind does not always process it correctly.”  

And I realized I have a very different idea of intention.  An idea of what it means to set out to do something and then to do it.  I come at the word from the point of view of someone who has not grappled with intention as daunting.  I have not experienced the word as a series of frustrations, not typically.  Sure every now and then I intend to do something, I set out to do it and find I do not have enough information or am not skilled enough or realize I need to do a whole list of other things first before I can accomplish what I had hoped.  But this is different from what Emma was talking about.  

“Is intention easier for you while you’re going through it, or later afterward when you are looking back?”  Emma was asked.  

“If I think too much about it the fear is anxiety,” Emma wrote.  

Richard said that what he was hearing Emma say was that the word “intention” means something that we do not necessarily mean.  He went on to say that if someone who speaks and says things that they don’t mean a great deal of the time, he could see how “intention” would be anxiety producing.

And as I listened to this exchange I reflected on how I define “intention” from my perspective of relative ease with spoken language.  As someone who has never considered intention a “skill,” but instead as a given and even an expectation, one I’ve not spent much time considering, my daughter has once again given me a great deal to think about.  This is the very essence of privilege.  Having something, being so used to having it that I do not even know I have it…  unless it was taken away from me or when someone else reminds me of how much easier it is for me than it is for them.

“To have intention is a hurdle to jump over.”

intention

The Three Boxes ~ A Story

Emma’s story, which she edited slightly from the original:

There were three boxes that were left on three different doorsteps.  They appeared to be identical in physicality.  The size, shape, and color made them far from unique.  The way they each arrived is still unknown.  Assuming they are identical on the inside would be ignorant.

When the people opened their doors and saw the boxes left, their reactions varied.  One questioned why there were no markings on the box.  The other tripped over the box when leaving, but did not pay it more attention right then.  The third opened it immediately since she loved getting mail.

Inside the boxes were lives – a kitten, a puppy, and a baby.  We will never know who abandoned these precious lives.  The focus is on how these lives adapt to new environments.  The easy answer is not that easy.  The longer version is that once the boxes were opened – the kitten quickly scampered out, easily scaling the box’s cardboard sides, the puppy tried to get out, but the box was too deep and he was too little, so he looked around for help, and the baby lay there, too young to even roll over and simply cried.

Luckily the enthusiastic mail-lover became the baby’s new mother.

That is food for thought.

The End

The box with the kitten

The box with the kitten

Saying One Thing, Meaning Another

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!"

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!”

 

Emma’s Presentation at The ICare4Autism Conference

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.

Emma chose this photograph, taken last week while in Cape Cod, until we can pull some photos from the videotape of the conference.

Today’s Post Brought to You By Emma

Written by Emma Zurcher-Long

“Today I will tell a short story about a girl who wanted to speak to the wind.  She listened with ears attuned to wind’s song, and desired to speak with its power and beauty.  But the wind was not used to listening, and the sounds she made were ignored.  People heard her and told her to be less noisy.  The wind was loud, yet no one attempted to quiet it.  The girl understood the wind’s voice and eventually it heard her.  Neither one spoke with words.

“The End”

Emma Chose this image from a google search "Girl in the wind"

Emma chose this image from a google search “Girl in the wind”