Tag Archives: Autism

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

It’s HERE – the link to a clip from Unspoken – The Documentary

I’m guest blogging on Emma’s Hope Book this morning to introduce all of you to the just launched IndieG0Go Campaign for the documentary Emma is co-directing with Julia Ngeow, producer Geneva Peschka, and executive producer Marquise Stillwell of OpenBox. (EEEEEEEEEEE insert happy snoopy dance here.)

Here’s the link to the campaign and the documentary clip.  It’s beautiful.  Just beautiful.

I’m going to wait while all of you click HERE

Okay so now you’ve seen the teaser and maybe you’re thinking what else can I do?  There’s so much, starting with share this with everyone you know.  Share it on all your various social media networks.  And finally, for anyone who can, please donate, even if it’s ten dollars, every dollar will help complete this documentary.

Last week in preparing for the conference  Emma and I are presenting at tomorrow in Toronto (Autism Rocks), Emma typed, “I will say things that are not truly what I am thinking and my true thoughts are not always communicated.  My talk is simple, yet my mind is intricate.  Much of my life is unspoken.”

Then she smiled at me and typed, “Cue the film.”

So go on.  Here’s the link again.  Unspoken

Unspoken

Unspoken

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

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

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.

chalkboard-copy

“Let’s Pretend You Are the Autistic One”

(A note on Emma’s post.  Because this is a fictitious dialogue that Emma wrote, for clarity’s sake, I asked her if it was okay to put the Autistic person’s words and thoughts in italics and the non autistic’s words in quotation marks.  She agreed.  My part of the conversation is in parentheses.)

For today’s blog post, let’s pretend you are the Autistic one and I should be the non autistic.

“Oh dear!  Why are you hurting yourself?”

(I asked Emma whether the Autistic person could use spoken language to speak.)

You can’t speak and I will talk for both of us, it will be more authentic that way.  Maybe you talk, but not with the words that best describe what’s in your mind.

“I don’t understand, do you want to go outside?  Why are you biting yourself?  Does that mean you do?”

You are thinking about expectations and how hitting yourself takes away the pain of not being understood and unable to say the words that will help.

“Here!  We will go outside.  It’s a beautiful day.”

I don’t want to go outside.  I want to read a story.

Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind.  Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear.  Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.

Emma's Ceramic Dish of Hope

Ceramic Dish of Hope ~ Made by Emma

Cures, Fear, Freedom and Some Advice ~ By Emma

Freedom, Fear And Questions concerning Autism

Barking in the terrible terror that comes with being something so feared and hated.
Daring tremendous love for those who fear.
Healing tears for those who are in brutish pain.
Freedom from hurtful words about cures for being a part of the human race.

Help me so I can communicate.
Give me an education so I can learn.
Treat me as you want others to treat you.
Cheer me on.
Remind me of all I am capable of and focus on what hinders you, but don’t hurt me because I do not experience this world as you do.

We can learn from each other, but learning requires an open and willing mind.  Too many have given us fear instead of hope.

Which, when, why, who, where – we ask.

We matter.
We are all capable of being kinder, more compassionate, more loving to others and ourselves.

*A word from Ariane – Emma became very upset while writing this and began banging the table with her fists and then bit herself.  When I asked if she was able to continue, she typed, “No.  No more.  No more.” – I asked her if she was okay with me adding this here.  She typed, “yes.”

Emma ~ 2015

Emma ~ 2015

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

Calling All Autistic Teen Girls ~ By Emma

Emma typed this post yesterday and asked that I post it on the blog today.  Her typed words are in italics.   This post began with Emma writing, “How about a teen girl post on the blog where I see if I can find girls that want to participate in a chat?”  (She asked that I begin this post with the above sentence.)

Calling all teen girls.
Are you Autistic?
Are you a female?
Are you an Autistic female in your teens?

If so, I hope that I have your attention.
It is a time full of confusion with many unanswered questions.
You might be fearful, curious, and feeling alone.

Let’s find each other.

Now Mom helps.

My help will come in the form of setting up a private group, probably on Facebook, if one or more teenage Autistic girls show an interest.  This group has to be a place where everyone feels safe to say anything they want without fear of being quoted or spoken of outside the group.  If anyone knows a teenage Autistic girl who might like to be a part of this project, please reach out to Emma either here in the comments or privately through email: emmashopeblog@gmail.com or on Emma’s Hope Book FaceBook Page where you can send a direct message.

Emma posing for today's blog post ~ February 12, 2015

Emma posing for today’s blog post ~ February 2015

“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…

Obsessive Compulsive Urges

Increasingly I am uneasy about writing on this blog unless Emma is an active participant.  In other words, no longer can I sit down and write something the way I once did four or five days a week, even if it is about autism in the most general sense of the word, without Emma giving her views.  After all, this is her neurology (and her blog) and not mine.  I can write about how our different neurologies intersect, even overlap at times, but without her weighing in, I am left feeling so uncomfortable I just can’t do it.

So…

I just read Emma this paragraph and this is what she typed:

“You can continue, giving an example of how you cope with your obsessive-compulsive urges and ask others to share their experiences with this too.”

“Oh,” I said, a little surprised by where this was headed, “I wasn’t thinking about writing about that.”

But you see, this is the thing…  I have another blog, Where Art and Life Meet, and that’s the blog where I can write about whatever I feel like, but this one…  this one bearing my daughter’s name…  this one is hers, not mine.  So every time I write something on Emma’s Hope Book I am a guest and I’m hyper aware of that.  I am here only because Emma has given me permission to be.

So this morning Emma has asked me to write about coping with my “obsessive-compulsive urges” and so I will.

When I think about the things I become obsessive-compulsive about it is less about a particular thing and more about anxiety, worry and stress.  It is the process that occurs in my brain that reminds me of a scratch on a vinyl record causing the needle to skip, playing the same  few notes over and over again until someone comes, lifts the arm with the needle and allows the song to continue.  My mind gets caught in the skip and it can get stuck there with just about anything, a word misspoken, a misunderstanding, an idea of something I did, but wished I’d done differently, or something I’d like to do but haven’t, I can get stuck on a conversation, something that was said to me that hurt my feelings, or something I said that I worry might have hurt another or it might be something I want to do, but have not yet accomplished.

The worst times for my obsessive thinking are in the evening hours or late at night.  There is always anxiety, often stress, combined with worry and as I spiral, it often feels as though I were falling down through blackness, bouncing from one awful thought to the next, unable to grab onto anything to steady or break my fall.  It feels terrifying and there’s an aspect of feeling completely out of control and yet trying desperately to regain control of not just myself, but of all my surroundings.

Over the years I’ve learned some tricks that mitigate how bad things get with varying degrees of success.  The first is to remind myself as I’m falling into the blackness that these are just fears and feelings and not facts.  I can listen to them, but remind myself that they will wear themselves out eventually and I do not need to believe them.  Listening and believing are two separate things.  This sounds much easier than it is.  Sometimes reminding myself of this helps and I’m able to detach enough that I can calm myself but often it does not.

Sometimes the best I can do is identify the obsessive-compulsive thought, label it, accept that I’m having it and sit tight until it passes.  When I was in a particularly dark place many years ago, I would outright lie to myself.  I used to tell myself that for the next five minutes I would not give in to the compulsion, but after the timer went off, I could do whatever it was.  Then the timer would go off and I’d set it for another five minutes, promising myself again the same thing until the urges passed.

Some other things I’ve done that have been intermittently helpful are talking to others who understand and who are also obsessive-compulsive, meditation, writing, reading, taking a walk, exercise, or learning something new, like studying a new language, some sort of mindless activity like knitting or crocheting.

Obsessive thinking, the kind where your mind feels as though it were spinning out of control, where you go from one stressor to the next like a pin ball, ricocheting from one thought to the next then finally calming yourself down only to have your mind latch on to another dreadful thought, is a private kind of hell that if you’ve never experienced this, you cannot really have any idea what it’s like.  It’s a feeling of desperation, horror and self betrayal all rolled up into one.   And the self talk usually makes it worse because the self talk can be so brutal and cruel.

Emma has asked that I invite others to share their experience with “obsessive compulsive urgings” and so I am.  Please keep in mind sharing your experience with obsessive compulsive thinking and what has or hasn’t worked for you is not the same as advice giving.  Advice giving can be annoying, particularly if the person giving the advice takes on an attitude of superiority.  This is not the place for that.

ocdcycle

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