Tag Archives: typing to communicate

Raging Screams and Shame

The other week I was present for the following typed exchange by two people.  Both are Autistic and both cannot use spoken language to communicate.  (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)

Layla:  You have an extremely loud stomp.  (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)

Jerry:  Is that a guess or are you certain?

Layla:  If you tried to hide it then you gave away the secret.

Jerry:  That is what I am behaving like on some days but proud I am not.

Layla: I heard it all and was curious and wanted to give help.

Jerry: Really do you believe that I am not evil?  (J. turns his head so he is staring down at the table.  His body is completely still.  It is a noticeable change from the way he usually sits while having a conversation with Layla.)

Layla:  Evil is not this and best to forgive yourself.

Jerry:  Thank you for not judging me.

Layla:  I  only ask for the same respect.

Jerry:  The deal is on.

I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood.  Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment.  As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.

As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality.  Jerry expressed profound shame and upset and Layla responded with  identification and deep compassion.

Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night.  I wrote about that ‘here.’  One of the things she typed was:  “Pounding terror is all that remains.”  More recently she wrote, “The raging screams in my head are starving and want to consume me.”

Raging screams…  Pounding terror…

August, 2014

August, 2014

Choice

I haven’t felt like blogging lately.  I’m busy.   Emma is no longer going to school and we have a number of exciting projects we’re working on, in addition to the ones she is working on solo.  We are covering all the subjects any school would cover, only we are doing it according to what Emma is most interested in.  So instead of saying, this month we will read _________, we say, “Here are some books I thought might be interesting, do any of these interest you?”  And then if they don’t we keep looking, asking and seeing what clicks.

At the moment we are reading Shakespeare’s Romeo and Juliet (thank you K.), we’ll begin pre-algebra in another month or so, are studying ancient civilizations beginning with our earliest known ancestor (thank you Mom), learning about chemistry (thank you Dr. C), have a variety of craft projects, writing projects, music projects, and that doesn’t even begin to cover all the other things that come up in any given day.

In addition to all of that, German (Emma’s very specific and insistent request) is coming along nicely though we are very much beginners, so all you German speakers, please do not start commenting in German and expect a response, unless it’s something like – Meine Tochter trinkt Apfelsaft, aber ich will Wasser, bitte.  Yeah, I just wrote that…. like a BOSS!  You have no idea how proud I am of that sentence, particularly as two months ago I couldn’t have put more than three of those words together.  And even though this was Emma’s idea, I’m (obviously) enjoying myself enormously.  (Oh you have no idea!)

But the point of this post was not to itemize the topics we are learning about or to show off my German (!), but instead was to say, yes, we are busy and so that makes blogging more difficult to get to, but the bigger point, the point I was thinking of when I sat down to write this evening, is this:  I don’t have to blog if I don’t want to.  I can just stop blogging.  In fact, if I felt like it, I could say – I don’t feel like doing this anymore and that would be the end of it. But my daughter doesn’t get to just stop and walk away from her neurology and how that is perceived by the majority of people out there.

So here I am, because this is about countering all the negativity that abounds when it comes to autism.  There is stigma and prejudice and yes, oppression and people saying and doing all kinds of things to Autistic people that are horrifying and appalling and the vast majority of people in this world see nothing wrong with that.  We have to stand up and say, no.  This isn’t right.  People are being beaten down, literally, beaten, threatened, murdered and it’s not okay.  It isn’t.  Our children are growing up in a world where autism is synonymous with all kinds of awful ideas and beliefs that hurt them.

Autistic people are being shouted down, ignored, trampled on, gas-lighted, abused, treated with contempt and some fear for their lives.  Non-speaking Autistic people are routinely treated as though they are incapable of thought and if they type, they are faced with suspicion, doubt and ridicule.  Speaking Autistic people are presumed incapable of understanding others, or believed to be using their neurology to get away with something.  If they speak out in anger they are told they are being unreasonable and that this is yet another example of their neurology.   I’ve seen non autistic people accuse Autistic people of being unable to understand the nuances of an argument because they didn’t like what the Autistic person said.  One woman wrote to an Autistic friend, “Oh, you’re autistic, now I understand why you said that awful thing about that poor woman.”  Seriously.  WTF?

The intolerance some non-autistic people show those who are not like them is staggering and horrifying.  The prejudice that is out in the world is rampant and everywhere.  So as busy as I am, as much as I don’t feel like blogging these days, my daughter doesn’t get to take the day off.  She doesn’t get to say –  I don’t feel like being treated badly or differently or as though I’m not capable of understanding.  I don’t really feel like hearing what that rude person just said about me right in front of me.  She has no choice.  And that’s what this post is about.  Some of us have a choice and others do not.

My daughter does not.

Em!

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.”

Just Another Day…

I think this has been one of the best days of my life.  We had a full day of learning.   I’m exhausted.  Seriously.  I feel as though my head is going to explode.    We began the day with our daily Skype call with Dr. C.  Emma and Dr. C. had great fun teasing me about the fact that every time Dr. C. asked Emma something like, “How many F- will bind to a single Mg^2=?” Emma typed the correct answer while I looked on with befuddlement.  Every so often Dr. C  explained something incomprehensible and then asked, “Got it?”  Emma immediately typed “Yes!” while I muttered, not so quietly, “NO!”  As I was continuously slowing them down with clarifying questions, it was suggested, jokingly, that I put a metal bucket over my head.  Emma then typed to Dr. C. “Do you have one?”

As Dr. C. gave Emma increasingly difficult and complex questions, I resigned myself to the fact that I didn’t have a clue what they were going on about, but Emma did, and that filled me with unspeakable joy.  There was lots of uproarious laughter and shouts of “Go Emma!  You can do this!!” after each question and Emma literally bounced up and down with glee.

Science was followed by a break, then math, a break, American history, a break, creative writing, where Emma wrote the most amazing piece that, sadly, I cannot post because it has been submitted to an anthology. (Any who type to communicate are encouraged to submit.  Click the link ‘here‘.  I believe the deadline is October 1st.)   After Emma cranked out her absolutely mind blowing essay, we did German and then she had her book club with K. where they discussed George Orwell’s Animal Farm and the Russian Revolution.  Oh and did I mention Emma did all of this dressed in the most fabulous red gown?

Quick aside – We are so incredibly fortunate to have people in our lives who have enthusiastically and generously volunteered their time to help teach.  To those people, a million thanks.

Now it’s time to do nothing.  Emma?  She’s in the back with Richard watching Seven Wonders of the Universe, I kid you not…

Red Gown

A Day of Learning

Emma does not go to school, instead the world has become an enormous classroom.  Here are a few snippets from today…

We began the day with our daily Skype call with Dr. C. who begins each call by asking Emma if she has any questions for him. Today she typed, “Inkling of noted capacity of space is to be reviewed?”

Without missing a beat Dr. C. said, “Recall that the inflationary hypothesis predicts that space is expanding faster than the speed of light, thus it has been theorized that if the entire universe is the size of planet Earth, the part of the universe that we can see with telescopes is about the size of a grain of sand.”  Emma replied, “Present state of what we understand, but may be limited by our perceptions.”

“Agreed,” Dr. C said and then added, “This is always the way with scientific advancement.  Every day new experiments are being run that either support or repute theories and hypotheses, thus theories are continually changing.  It may well be that the inflationary hypothesis will be abandoned and some new theory (maybe the Cyclic Universe Theory) will emerge.  That is the way of science, Emma!  It continually changes.”

What followed was a brief discussion about Cyclic Universe Theory and then the conversation returned to Units and Equivalents where Emma was asked to view a powerpoint slide showing two graphs showing weekly wages, which upon closer inspection were the same data, but because of the way they were shown, seemed very different.  Dr. C asked Emma which one she would prefer getting for a weekly allowance and Emma enthusiastically pointed to the one that appeared to be monetarily favorable.  Dr. C then explained why it was not and how this was a good example of how data can be changed, while still being legitimate.  Emma then typed, “Deceptively similar. We both need a raise.”

After much laughter, Dr. C. talked about how important it is to study data to be sure you are not being deceived.  Emma then typed, “Either one is a manipulation.  The facts are easier without ego.”

The lesson ended with a discussion about density and Emma was given a homework question where she will need to calculate the weight of a gold brick.  She has been given the dimensions, an equivalency chart to convert inches, centimeters, kilograms and pounds and the density of gold.

After our Skype call we went to see B.  Emma was asked, “Do you think you are learning more now that you are NOT in school?”

“My mind is expanding as big as a watermelon that feeds an entire school,” Emma typed.

Interestingly, and as a quick aside, earlier in the week we discussed with Dr. C Hubble’s Law and the idea that the universe may be expanding, so I found her choice of words particularly wonderful.

Later B. described a limerick, briefly talked about iambic pentameter (a limerick is typically AABBA) and gave her the “rules” of most limericks.  Limericks are five lines, lines one, two and five rhyme, with lines three and four rhyming with each other, they have a distinctive beat with lines one, two and five being longer than three and four, and they are usually humorous.

B. read the following limerick, the writer is unknown, which is about limericks!

“Writing a Limerick’s absurd,
Line one and line five rhyme in word,
And just as you’ve reckoned
They rhyme with the second;
The fourth line must rhyme with the third.”

B. asked Emma what she thought and this was Emma’s reply:

“Dancing each day is a joy,
It’s better than playing with toys,
If you disagree
Come spend time with me,
It’s fun for both girls and for boys.”

After we returned home Emma and I read the first chapter of George Orwell’s Animal Farm in preparation for Emma’s book club with K. on Friday and went on a field trip to the Museum Of Modern Art.  Prior to leaving on her field trip to the museum, she was shown the current exhibits and asked which looked interesting to her. Emma typed, “wandering through possibilities is best.”

I don’t know about you, but I want a T-shirt that says that.

“Wandering through possibilities is best.” 

"Wandering through possibilities is best." ~  Emma Zurcher-Long

“Wandering through possibilities is best.” ~ Emma Zurcher-Long

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

“No More School” and Other Important Topics

Emma (and I) will be presenting at the TASH Conference in Washington DC December 3-5.  We haven’t been given the exact date for our presentation yet, but once I know I will inform all of you.  I will be co-presenting with Emma, but the title, Rethinking Your Beliefs About Autism, and topic are Emma’s idea and I will be following her lead (as always.) 

On the “no more school” front, we are busy.  So busy I am having difficulty finding time to write anything for this blog.  I keep thinking once we get into the swing of things that will change.  I keep thinking if I just plan better, each day will move along easily and we will (miraculously) get the list of all the things we will do and cover, that I so painstakingly made upon getting up in the morning, done.  I even bought a Daily Planner, one of those things everyone used to use before we had smart phones, so that I could record all the subjects we are covering and the length of time spent on each…  Before you fall off your chairs laughing, I DIDN’T give in to my impulse to use a color coding system, so there’s at least that.  (Not that using a color coding system isn’t a great idea and if you tell me in the comments that’s EXACTLY what you do and how fabulous it works for you I promise to be impressed and probably quite envious as well.)

Here’s the thing about all of this.  So much of the problem I’m having is less with our daily adventures and more with the ideas I have about what we SHOULD or SHOULD NOT be doing.  It’s reminding me of the presentation Emma and I gave earlier this summer here in New York City.  I wanted to write everything I was going to say out onto little index cards, which I then planned to read out loud, pausing now and then for Emma to type whatever she wanted to add.  Emma, though, had very different thoughts about how we should do our presentation.  And in the end, as it was Emma’s presentation, we did as she wanted.  We winged it.  (What the hell is the past tense of “to wing it?”)  Winging it is pretty much what we are doing now, only instead of doing this for one presentation, we are doing this every single day and I know, I really, really know there’s got to be freedom in that once I stop hyperventilating.  

Meanwhile, just as she did during our presentation this past July, Emma is having a great time amidst learning about the cosmos, Hubble’s Law, light years, our ancestors, one of whom was a Colonel in the garrison of the King of France in the battle of Seneffe, where he died, against William III of Orange (who knew?) learning German, discussing current events, creative writing, AND planning a dinner party Emma intends to have, along with making up the guest list and meal I am to prepare.

There are several more exciting things in the works writing-wise, but more about all of that another time. 

It’s time for bed, though Emma may well stay up far longer than me.  She has a number of things she wants to do before going to sleep…

The Duke of Enghien saving his father, the Grand Condé at the battle of Seneffe: painting from 1786 by Bénigne Gagneraux

The Duke of Enghien saving his father, the Grand Condé at the battle of Seneffe: painting from 1786 by Bénigne Gagneraux

Emma Interviews

Emma has been interviewing various family members.  So I wasn’t surprised when she wrote that she wanted to conduct another interview.  Except this time she wrote that she wanted to interview me.  This is part one of that interview…

Emma:  What sparks your imagination more? Words? Pictures? Music?

It depends on the situation.  I have been inspired and moved by all three at various times and can think of examples of each sparking my imagination.  If I had to put them in order of most moving and inspiring, I would have to say visual, whether experiential as in scenic or static pictures, painted, photographs, sculpture, visual art.  But even as I say this I’m thinking of music that has brought me to tears, and literature and poetry that completely captivated, even non fiction writing, particularly memoirs have completely enthralled me.  Each has inspired and sparked my imagination.  I don’t know that I can choose!

Emma:  Who do you wish you could have known and why?

My grandfather, your Great-Grandfather.  He is the one your granma, my mother speaks so highly of.   It would have been nice to have had the experience of knowing him.  He was also an extremely ambitious, smart and I’ve been told, fascinating man who lived a complicated and unusual life.  I would have liked the opportunity to have interviewed him the way you are interviewing me.

Emma:  What taught you more about life – notable happiness or terrible suffering?

In a strange way, both as they are both great teachers and I’ve experienced large doses of each.  I only wish I was a faster learner so the suffering didn’t have to go on for as long as it did.

Emma:  When were you decidedly happiest and when were you easily the most unhappy?

The most difficult time in my life was the years when I was bulimic.  I felt as though I was watching life pass me by as I remained stuck in my obsessive-compulsive addictive behaviors.  It was a terrible time of feeling I was betraying myself on a daily basis and couldn’t stop, though I wanted to more than anything. Sadly that period lasted for about 22 years.  That’s an awfully long time to be so unhappy.

This period of my life is by far the happiest.  I have learned and experience daily the power of gratitude, friendship, humility, family and the gift of giving back.  I am so grateful for the many gifts I’ve been given – Daddy, N. and you, extended family and friendship.  I have so much love in my life.  I am extremely fortunate.  Gratitude encourages misery to withdraw.  People say it’s harder to talk about unhappiness, but I have found the opposite to be true.  Misery came easily to me. Happiness I’ve had to fight for and once I caught slivers of it, I wasn’t willing to let it go.

Emma chose this photo of me to accompany her interview

Emma chose this photo of me to accompany her interview (I figure since I chose photos of Emma throughout her childhood, it is only fair that she now choose the photographs posted on this blog.)

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.

An Essay by Emma

*Emma asked that I post this today.

Yesterday, during Emma’s RPM session (not with me, but with the person who does weekly RPM sessions with her) she was asked to talk about something where she compared and contrasted.

Emma wrote the following…

                             “Part of All Buildings”

“For thousands of years and as long as buildings have existed, walls are covered.

“Generational trends have shifted.  The idea of paint versus wallpaper is one to give attention to.  Ask yourself what has changed in trends.  Did you ever think to believe the walls around you influenced change?

“Wallpaper with precious patterns are torn apart in many current buildings.  Paint has won the walls of this generation.

“If you believe your environment can change parts of you, keep reading.

“I am wondering if those who surround themselves with precious patterns have bigger imaginations than those with simple paint.  It is easier to become friends with colorful patterns.

“They can both get dirty.  In wallpaper the wear becomes welcomed more.

“I can do the research and report back!”

Wallpaper versus Paint

Wallpaper versus Paint

A Look Back and Then Forward…

Em wrote just now (and said I could publish what she wrote here):

“I want to talk about the New Year.

“I know it was an important year to talk to the world.  I need people to understand what it is like to be Autistic.  I could be daring by saying that, but I think it is the only way others will become more tolerant of those of us who think differently than most, and it is opportunity that both separates and connects.”

I have so many thoughts about this…  “it is opportunity that both separates and connects.”  That sentence could be the topic for an entire semester in graduate school.

After Emma wrote this, I asked her if I could share it with Richard and on here, to which she nodded and wrote “yes.”  Richard and I had different responses to the word “opportunity” but when asked to clarify, Emma was already listening to her music and as I told her our study session would last 25 minutes and no longer, I did not press her to elaborate.

I will end this brief post by saying this past year has been a monumental one for me and my family.  As I look back on previous years, there have been none that can compete.  Here’s to embarking on another incredible year filled with curiosity and wonder.  Thanks to all of you who have read, commented and/or reached out.

As Emma has advised many times over the last few months, “Be kind to each other” and “everyone should be treated kindly and with love.”

Happy New Year!

Self portrait