Tag Archives: poetry

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*

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

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.

comment-512

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

Using Words to Describe What Cannot Be

This morning, in answer to the question, “What shall we talk about?” Emma wrote:

Today I am going to talk about using words to describe things that cannot be described.

How can it be done?

It is the poet’s attempts that come closest, but even then, much is left to the reader’s interpretation.

Poetry becomes an interactive experience then, with the poet having to cede all control of words created.

Real creating asks question of all.  The answers are unknowing.

From Ariane:  Last night I dreamt I could not speak.  I was at the airport, leaving for the Far East and realized I had left my passport at home.  I kept reminding myself this was a dream and that I could recreate the story line.   I didn’t have to stay in the feelings of intense anxiety the dream was provoking.  I could speak if I could just change the dream. I didn’t have to follow the dream’s labyrinth.  Straining against all logic, I tried to fly, literally, back home, but kept being pulled back into heavy traffic and the anxiety of knowing I would never make it home and back to the airport in time for my flight.  Not being able to use my voice to tell the cab driver where I needed to go, without pen or paper to write, I felt intense frustration and then rage.

Knowing I would miss the flight, knowing my family was at the airport waiting for me, and the nagging, ongoing critique of how foolish I was to have forgotten such an essential document as my passport made me finally wake up.  It was one of those dreams where you are so horrified by it, waking at three in the morning becomes the more attractive choice, superseding the desire to continue sleeping and the knowledge of the inevitable consequences of waking at such an early hour.

Those feelings, like so many incessant and blaring alarms, jangle the nerves, and linger long after sleep has yielded to wakefulness.  And then Emma wrote the above and I was reminded, once again, of how often words fail us.  How often things said are misinterpreted, or said in ways not meant, or how even for those of us fluent in spoken language, words can become a kind of cage from which we cannot and do not easily escape.

Richard has been editing the video of our presentation.  Hoping to post it over the weekend or on Monday…

Emma chose this image after typing in "words" into Google search

Emma chose this image after typing “words” into Google search

Emma’s Take on “The Tyger”

The other day Emma chose to read and discuss William Blake’s poem “The Tyger” for one of our two sessions.  A brief aside:  When I was in graduate school, one of my favorite classes  was on Virginia Woolf’s A Room of One’s Own.  As I remember it, we spent a week discussing a single paragraph.  To me, this was bliss.  Are you familiar with Virginia Woolf?  A goddess of women writers.  A writer of imperfect perfection, truth, honesty, despair, joy and suffering, that tumultuous roiling, spilling of words on the page evoking sadness, confusion and ecstasy all at the same time, this was what I felt as I read Virginia Woolf for the first time.

But the other day, instead of pulling out my old copy of Virginia Woolf’s A Room of One’s Own, I thought of poetry and grappled with which poet and which poem?  Should we read Yeats, Wordsworth, Baudelaire or Keats?  But then, for some reason I decided on William Blake’s The Tyger:

“Tyger Tyger, burning bright,
In the forest of the night;
What immortal hand or eye,
Could frame thy fearful symmetry?”

After we’d read the entire poem to its end I asked Emma what she thought.  Emma wrote, “Beautiful illustration of torn ideas.  Rabid wondering regarding innocence and the result of omnipotence.”

Wow.

Seriously.

Wow.

This was her response after reading it through one time.  No discussion.  Nothing from me about meaning or interpretation.  Nothing.  This was Emma’s take away, having been given nothing else.

I then asked her what role if any evil played in the poem.  Emma wrote, “I am thinking evil is understood as being the tiger.”

“I agree,” I said, “What do you think about using the tiger to describe evil?”

Emma wrote, “The worst evil is the kind that is camouflaged as something else…  like an innocent lamb.”

The second to last stanza is:

“When the stars threw down their spears
And water’d heaven with their tears:
Did he smile his work to see?
Did he who made the Lamb make thee?”

Emma then wrote, “… maybe god understands what it’s like to be misunderstood.”

Emma ~ May 2014

Emma ~ May 2014

“It’s Important That Other Parents Understand.”

Written by Emma Zurcher-Long

“I will talk about the upheaval from last night”

“I toyed with downward feelings of rage then

as bountiful memories seeped into my raging mind

I surrendered to purposeful sleep

my screaming mind is momentarily spared from stormy thoughts

piercing my being

threatening no kindness

patience is ground down til pounding terror is all that remains.

Only the dedicated few

talk about love during episodes of furious pain

their love is rejuvenative and restores faith in this awkward world.”

 

From Ariane:

Emma wrote this after having a very rough night over the weekend.  I asked her if it was okay to post her beautiful words here and she agreed.  I asked because there was a time before we had found a way to support Emma’s outpouring of words, before she was able to write, before we were able to understand, before we understood…  those were the times when nights such as the one she is referring to were even more devastating for all of us and our assumptions about what might be going on were so often wrong.  Emma agreed to post this because, “It’s important that other parents understand.”  The problem with the assumptions we made was that they often led us to then behave accordingly, even without meaning to, they affected how we responded to her.

We might have thought – this is a manipulation, she is doing this to us.  We are being held hostage to her screams.  We would mistake her terror for manipulation.  We might withhold our love in anger.  We might assume that to not do so was giving in or condoning the “behavior”.  We might do any number of things to “show” her that this way of being was unacceptable.  Except that this “way of being” was so beyond the scope of our experiences, so beyond what we could make sense of.

“Pounding terror is all that remains.”

And so I remembered afterward the comments from this post, “What Others Had to Say: Love, Overwhelm, Violence” and all the people who so generously opened up their lives and wrote about their experiences with being overwhelmed and no longer able to cope.  That point when feelings completely take over and all we can do is weather the storm.  Emily K. wrote: “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

And Autisticook who wrote:  “It will get better.”

And she also wrote this:  “Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.”

And this:  “You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.”

And this:  “Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me.”

And this:  “I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.”

And THIS.  This is SO important:  “Don’t ask me questions.  If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again.

And this: “Don’t try to distract me.”

And this:  “Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.”

And finally, this:  “Please give me time to process.”

I would like to report here that I remembered each and every one of these things and that I put them all into action, but I didn’t.  What I did do was try to remain calm and loving.  And when my calm began to fray, I tried to remove myself, while reminding her of my love.  I did a number of things right, and I made a number of mistakes.   We are all learning here.  When calm was restored Emma said she wanted to write about “the upheaval from last night.”  This was in response to my question, “Is there something in particular you want to talk about this morning or would you prefer we discuss an article from the New York Times?

I was surprised she wanted to talk about it.  And then she wrote those beautiful words, which I can only describe as less prose and more poetry, a song, really.  A song borne of experience, despair, and transformed into a thing of beauty.

The beauty of Emma.

Emma ~ 2012

Emma ~ 2012

 

The Purple Tree

The Purple Tree and Other Poems is a collection of poems by Sydney Edmond who is non-speaking and autistic.  She learned how to write using a letter board when she was ten-years old, two years later she gave her first public presentation  and has presented at a number of other conferences since then.  Now ten years later, Sydney continues to write, present and is the subject of a documentary called, “My name is Sydney

“Lazy, achy lady
lived by the sea.
Lazy, achy lady,
move away, please.

You are always blabbing,
talking long and loud.
You are closing in on
my lovely little cloud.” ~ From the poem, Some Early Poems

One of the most exciting things happening now is the emergence of a growing number of non-speaking Autistic people who are writing.  Thankfully self-publishing and blogs are making their work accessible to the public.  As more non-speaking Autistic people write and publish their work, it will become increasingly difficult for the public to deny that the assumptions we have long-held about Autistic people are incorrect.  Eventually we will have to re-evaluate how we are viewing those who are Autistic and what that actually means.  Our notions of “intellectual disability”, our ideas about what someone is or is not capable of are being challenged and will continue to be until what we think we know now, what is considered common knowledge will be seen as antiquated and our limited assumptions an example of just how ignorant we once were.

“I lack the lovely peace of mind,
lack my always smile.
Who listens to a lonely girl,
Listens to a child?”  ~ From Dear Friend

The first presentation Sydney gave was in 2005, just two years after she began communicating on a letter board.  This poem, Love, Love, Love! was part of her presentation at the West Coast Symposium on Facilitated Communication.

“But Soma came along
and changed my life.
She actually lifted poor little me
out of darkness
and into light,
love,
and lovable, lovable, lovely happiness.

Soma taught Mom
how to communicate with me,
and Mom and I have been talking
ever since.
Now I can choose my own clothes,
make my own decisions,
and make lovely friends out of people.”

For those of us with children who do not speak or whose language is unreliable, or does not necessarily reflect what is meant or intended, we are entering a time of tremendous hope.  There is a great deal of work still to be done, but in publicizing the work of those who are like our children, who are communicating by typing and pointing to letters on letter boards, we will shift how people view not only our children, but all our children and people.  By questioning commonly held beliefs about any one group of people we affect change for all mankind.

Unknown

“I Want to be a Singer on the Stage!”

Emma told us she wants to be a “singer on the stage!”  She said this a few weeks ago and repeated this desire last night.  Richard and I are doing and will continue to do all we can to support and encourage her desire.

Emma’s love of costumes and theatrics, coupled with her love of music, performing and singing in front of an adoring audience will go a long way in helping her achieve this lofty goal.  It is the perfect window by which we can enter to help her acquire language, encourage her reading, writing and typing.  I am starting to print out the lyrics to her favorite songs (reading) and find other ways to encourage writing (lyrics? poetry?) or anything else she might find motivating.

Emma dressed as a knight

Emma in her flamingo costume with her favorite Alien doll

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