Author Archives: emmazurcherlong

Have Your Voice Heard!

For my Research and Writing English class this year I have to write a paper on a topic of my choice that weaves data and data analysis with factually based interpretation of that data. My research question for this paper is:  To what extent is it possible to compare the ways in which methods of communication are being taught to autistic students who cannot use spoken language to communicate their complex ideas?

Because many existing communication methods are underrepresented in most schools, I created a survey to find out what methods students use, what they are being taught to use and how successful each is.  Additionally I am curious to know whether a student’s school allows the communication method chosen by each student to be the most beneficial, and if not, how the student then communicates their complex thinking and knowledge.

This survey uses a google form and is completely anonymous.  You will not be asked for any contact information, your name or the name of your school.

Who I’m hoping will participate:

  • Anyone, anywhere in the world, who cannot use spoken language to convey their complex thoughts.
  • Anyone who cannot rely on spoken language most of the time.
  • If you are no longer in school you can fill the survey out by remembering your experience when in school.
  • If you are homeschooled or are doing a combination of online, non-traditional-school or other learning experiences, please consider participating.
  • Parents whose child/offspring fits the description above can fill out all factual questions and those questions that are subjective can choose “other” and explain you are a parent or give your opinion and explain that it is yours.

This is the link to my survey:  Survey

I hope you will add your voice and experience by participating in my survey.  I am glad if you do.

Have your voice heard!

Banding together with our typed words,

Emma NYC

emmaschool

That’s me, Emma, at school this morning.  Photo credit: Mom aka Ariane Zurcher

 

Can Speech Challenged Students Get an Appropriate Education?

     What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

     In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

     There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

      The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

     There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

I am Emma

“What is your name?” someone might ask.  It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward.  Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth.  I call these utterances my “mouth words.”  They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not.  My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many.  Mouth words are witty accomplices to a mind that speaks a different language entirely.  There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist.  I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier.  I have come to understand that my mind is not like most people’s.

I am Autistic.

Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings.  My hearing is excellent.  Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn.  I am compelled to imitate each one I hear.  Car horns I can respond to cheerfully.  It’s the same with light.  The harshness coupled with bloated heavy air is so intense I become overwhelmed.  I wonder if I am too aware of my surroundings.

Some people have suggested I am unable to feel empathy and assume I have no desire for human interaction and friendship.  I feel people’s intentions and feelings so intensely it can be difficult to concentrate.  I am too sensitive to other people’s sadness; it is akin to drowning or like being smothered by the weight of damp earth covering your entire body, filling your eyes, mouth and ears.  Piercing shards of past and present pain cause me to turn away or make faces or laugh outloud to lessen the weightiness.  There is no lack of empathy, but rather an unmanageable abundance that defies my best intentions.  It is during these moments that I flounder because society expects less of me and not more.  I listen to the words spoken by people who are crying or shouting.  They say things like, “I’m okay,” through tears or “No, I’m not angry,” as they clench their fists,  but their words are in direct conflict with their actions.

Others believe that I do not have feelings at all.  How do you defend yourself against such accusations?  Trying to convince those who believe I’m an empty shell is impossible.  Adding to this is my inability to use spoken language as expected.  “No, you cannot put putty in your mouth!” in answer to “what’s wrong with that girl who is crying in the corner?” does not help change the minds of those who believe me incompetent and without feelings.

If I tell my mouth to behave and demand that certain words come out, stress barks and growls, jarring my mind so that it folds in on itself and favorite scripts begin.  “You cannot throw your lunchbox at Kevin!” or “Maddie’s not here anymore” helps me control the waves of anxiety that press up against me.  Hearing my voice keeps the dark, piercing void of nothingness from engulfing me.  Clenching down on my forearm as hard as I can is another way to control the tidal wave of stress.  A complete set of teeth marks embedded into my skin might interest those in the field of dentistry, but for most people witnessing, horror probably best describes their response.

Some find self injury baffling, even terrifying and something that must be stopped at all costs, even if this means far more painful interventions inflicted by others than anything I could do to myself.  I see it as a way to care for and acknowledge the overwhelming onslaught of unruly feelings.  This idea is not embraced by “autism experts” who use words like “behaviors”, “defiant”, and “oppositional” to defend the use of isolation rooms, restraints and even electric shocks for people like me.  It seems abuse by others to prevent self injury is permitted, even applauded, though the logic is lost on me.  When my mind is caught in a downward spiral I need calm reassurance.  My frustration often expressed in screaming, repetitive scripts grind down the patience of those witnessing.  My screams threaten their kindness, I know, but I cannot stop once begun and pounding terror is all that remains.  Only the dedicated few talk of love during my episodes of furious stress and suffering.  Their love is rejuvenate and restores my faith in this awkward world.

I am exuberant, overflowing with energy and love music.  I’d rather gallop than walk, bounce than sit quietly.  I’m happiest with high volume, intense beats, jumping, arms flailing, pounding bass, total darkness or bright stage lights and a microphone in hand.  I want people to hear me.  I am as versed in making silly faces as I am in my favorite songs and my neurology.  My mind is lightening fast, hungry, logical.  I’m a seeker, determined, a lover of laughter in a body trying to keep up.  It can’t, but I’ll keep trying.

Showing kindness toward those who are different and embracing our imperfections as proof of our humanness is the remedy for fear.  Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility.  I want my hard won words to give hope and inspire people to change how they think about autism and someone like me.

“What’s your name?” people ask.

My name is Emma.

2015.10.06_Emma_PT_272Photograph: Pete Thompson Photo

A Language I am Fluent in

Gazing hungrily at the docking station that cradles my iPhone, I can already hear in my head the first song I will play.

It is a charge surging through my body.

It’s electric.

It’s stars that shower down.

It is invigorating, a power drink transforming lethargy into intensity.

Pounding beats, it’s Jessie’s Bang Bang, Lily’s Smile, Beyoncé’s Dangerously in Love and the crazy pre-rap rap of the Talking Heads.

It tastes like an explosion of chocolate hazelnut, a glop of Nutella hitting your tongue before you’ve even swallowed.

Understanding the notes is a full body experience.  It’s a world where I can be me, unedited, pure and perfect.

This is a language I am fluent in.

*Emma*

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

Poetry is Ballet in Words

Poetry is ballet in words.

Graceful, agile words, yawning and leaping while whispering and shouting all at once.

The ending is the beginning

like water colors

I had no access to any of it

no way to share the beauty

alone

the dance

with no one to answer or interact

I was alone in the intense happiness

but now

I can choose to dance with others

when I want.

Poetry is Ballet in Words

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

Don’t Be Blue

Mom prepares me,

but nothing can inoculate fear colored blue

masked in lights, shining brightly.

The terror seeps through.

Awareness disguised as tolerance is not the same as love.

An uneasy embrace may appear affectionate,

but can feel worse than a slap.

Words said with anger are not kind,

no matter what each word means by itself.

Look kindly

choose many feelings,

but please do not choose blue.

#WalkinRed2015

#WalkinRed2015

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!

Time To Dance

Hearing music alleviates anxiety and welcomes dappled drops clasping gleeful feelings, radiating inward and outward simultaneously.  Like bursts of intense flavor, music explodes in the body.  Only a few stoic souls can ignore its command to move.  Dancing is the healthy choice.  Turn on your favorite music and give yourself permission to become a part of those notes.

Beep. Leave a Message

Beep.

Waiting for a message that cannot find its way

from brain to muscles

that connect to sounds we know to be

recognizable words with understood context.

They elude, slipping and sliding

they have no legs

slithering in the muck of misunderstanding

those words that manage to escape from my mouth are heard,

but baffle.

 

Battling it out for recognition are the silent thoughts that are not

“you need to take a turn to share

“you have to wait our turn

“you want to go fast?

“you have to share”

Words, words and more words.

She has language they say, but the language she shouts is not a language at all

buffering frustration, relieving anxiety, clouding meaning

I’d whisper if I could

but I can’t.

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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

Learning to Believe

Needing time to learn, understanding concepts and refining techniques are all done on separate timelines.  Best to approach each with curiosity and patience, with a large dose of belief in the other person.

Ticking clocks of expectation become toxic.  Learning to believe is the homework for all educators.  Belief in another’s humanity, respecting different learning styles and compassion for all makes a great teacher and student.

Having a wonderful teacher is life changing.

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