Ideas, Insights and Discovery

This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.

I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views.  Thank you Emma for giving me permission to post our conversation.

Ariane:  I thought we could begin the day by discussing who you might like to interview and about what topic?

Emma:  Is the way here, thinking, knowing, and asking about another, helpful?

Ariane:  I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life.  Asking is a great way to understand another’s perspective.  Who would you like to interview?

Emma: Using questions to sing truths meaningfully speaks to all.

Ariane:  That’s so true!  Music is a universal language that can transcend words.

Emma:  What did those we cannot ask, say?

Ariane:  Who are you thinking of, Emma?

Emma:  Those who cannot speak and have no one who believes in their ability to communicate in other ways.

Ariane:  Here’s the thing though, we can ask.  We may not get an answer we understand, but we can still ask and I think that’s the beginning, right?  We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.

Emma:  Understanding that all human beings want connection is natural and fundamentally human.

Ariane:  I agree.  So Em, what was it like before you were able to type?

Emma:  Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.

Ariane:  Ah…  can you tell me more?

Emma:  Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.

Ariane:  I imagine interviewing someone must be hard, even now that you can type.  Would you say that’s true?

Emma:  Sometimes ease is not an option.

Ariane:  You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea.  I’m sorry.  What else should we do right now?

Emma:  How about a conversation using music and no words?

Ariane:  Great idea!

Some of the instruments Emma chose for us to use in our "conversation."

Some of the instruments Emma chose for us to use in our “conversation.”

An Interview with Emma About Halloween

What follows is an interview I did with Emma regarding her thoughts about Halloween.

Ariane:  What do you like best about Halloween?

Emma:  The excitement of dressing up in costumes with no attention paid for oddities.

Ariane:  There were a great many people out.  What was it like to be among such large crowds of people?

Emma:  Wanting to be a part of the crowd and not necessarily the same.  There is acceptance in that.

Ariane:  Did you like going from house to house and interacting with the people?

Emma:  Yes, I like having one day when I am not penalized by strangers for being me.

Ariane:  What else about Halloween that you like or do not like?

Emma:  I mostly enjoy being with so many, on a night when individuality is celebrated.

Family Photo - Halloween 2014

Family Photo: (from left to right) Ariane, Emma, Richard & N. – Halloween 2014

Heading out while it's still light...

Heading out while it’s still light…

Many others had the same idea...

Many others had the same idea…

Richard terrified small children everywhere.

Richard takes a seat.  It’s hard work being this frightening.

A night when individuality is celebrated.  (Random stranger who was happy to pose with dogs.)

A night when individuality is celebrated. (Random stranger who was happy to pose with dogs.)

The dead rises… and gives out candy to all who ask.

The dead rises… and gives out candy to all who ask.

Heading home...

Heading home…

Happy Halloween!

For Halloween Richard is going to be a ghoul-ish executioner, complete with bloodied axe and lots of pseudo leather and chains.  We live in Chelsea.  He’s a big hit.  Nic will be a kind of adorable bunny gone rogue.  His pink bunny costume is covered in splattered blood and the bunny head makes it clear that the bunny has gone from prey to predator.  I will be a gangster. Yes I have the plastic tommy gun and black and white patent leather heels that match my black and white pinstriped suit and black fedora.  The only thing missing will be the platinum white hair, I’m sticking with my grey-blonde, thank you very much.  And Emma decided to be a wicked witch, complete with her “witchy-witchy” shoes, black and green striped knee socks, black witch’s dress, sort of like the one in the Broadway show – Wicked and black witch’s hat with black tulle, it’s all very witchy elegance at its finest.

When I asked Emma if she wanted to paint her face green, she looked somewhat horrified by the idea and then typed, “No thanks.”  She’s very polite.

Merlin does not need a costume and will go as is.

IMG_3246

Halloween is a big deal here in New York City.  The halloween parade draws tens of thousands of people and our block is impossible to get to with all the police, crowds of people and barricades.  I would be happy to get dressed up and stay home, answer the door to the few children in our building who might ring the door bell and hand out treats.  However I am the only one who feels this way when it comes to going out for Halloween.

Even though I’m not big on the actual going from door to door and making my way through the crowds of people part of halloween, I do love preparing for Halloween.  I wrote a post about some of this on my other blog, Where Art and Life Meet and posted lots of wonderful photographs of pumpkin carving, halloween wreaths and halloween treats.  So for all you crafts and art lovers, go look at the photographs I posted.

I will end this post with a photograph of one of the many pumpkins we carved last weekend.  This one was made by Richard.  He did not use his executioner’s axe.

A Grinning Pumpkin made by Richard Long

A Grinning Pumpkin made by Richard Long

HAPPY HALLOWEEN!

The Curious Incident of the Dog in the Night-Time: an opinion by Richard Long

Magnificent.

That’s my one word review.  If you want a more detailed critical analysis of the play’s many virtues (the few shortcomings can be filed in the nit-picky drawer), check out Ben Brantley’s New York Times review. I agree with his assessment almost point for point, though I was offended by some of his phrasing, like his description of Christopher, the play’s teenage autistic protagonist as: “a parent’s nightmare.”

That aside, Brantley does a wonderful job describing the exceptional direction, lighting, set design, sound design, choreography, and tour de force acting of Alex Sharp in the role of Christopher. Plus, there’s a great slide show! And a video!

What can I add to the conversation? Well, I’m the father of a soon-to-be-teenage autistic girl, an avid theatergoer, extremely opinionated, harshly critical and always correct. Most pertinently, I’m a person.

One of the things that bugs me about many fictional works with autistic characters is the implied or stated assertion that a specific autistic character represents all autistic people. When Christopher says he thinks that “metaphor” is nonsense early in the play, I admit that I rankled a bit, thinking something along the lines of: Oh, so this playwright thinks all autistic people think and talk with absolute literalism! Emma clearly loves metaphor and uses it very skillfully! Then I clamped down on my kneejerk reaction and recognized that the author was telling Christopher’s truth, not Emma’s. Christopher was a person.

In or out of the theater, I’m really annoyed by the ASD label and the gross misrepresentations of autistic people with cookie cutter characteristics which are total nonsense, particularly when used to define a group comprised of millions of individuals: Lack of empathy and compassion. Literal thinking. I could just as easily write an essay describing the “symptoms” of NASD (Non-Autistic Spectrum Disorder): self-obsessed, easily bored, oblivious to their surroundings, ruthlessly ambitious (or woefully apathetic), etc. etc. etc.

Given the amount of buzz this play is generating, I’m certain most people in the audience knew that the main character was autistic. What assumptions were packed in their bias baggage when they walked in the theater? What new assumptions were bulging out the sides when they walked out? Did they go away thinking Christopher was Autism personified, the spectrum poster boy? I have no idea. Did they automatically assume that the characters of Christopher’s father and mother represented every father of every autistic kid? I certainly hope not.

My own bias baggage was bursting at the seams before the play began. I was hoping for the best (a dear and very generous friend had given us the tickets and I wanted to rave about how wonderful it was) but I braced myself for the worst: the usual onslaught of tired and untrue generalizations about autism. I was very pleasantly surprised that the words “autism” and “autistic” were never spoken by any character. The audience is told that Christopher is in a special-education type school, but there are no teachers or doctors hammering home his diagnosis.

I was relieved that many of my “autistic cliché” buttons remained unpushed, yet there were some scenes that were especially difficult for me, like when Christopher ridicules the non-speaking and more severely disabled kids in his class, calling them “stupid” and “lazy.” I found that very upsetting, since Emma would be one of the kids he underestimates in such a demeaning way. However, I was able to see that viewpoint as Christopher’s truth (or the author/playwright projecting himself into Christopher’s character), which made it less personally offensive. It did hurt to hear things like that, but the pain I experienced was much less than the anguish I felt when Christopher learns how deeply his father has betrayed him.

As the parent of an autistic person, the scenes of Christopher’s journey to London by himself were the most harrowing. Looking back now, I wonder if my experience was really so much different than others in the audience. Perhaps some of them were also parents of autistics, and knew firsthand how terrifying it is to lose sight of your child in a crowd, knowing he or she will be overwhelmed and/or confused by sensory bombardment, or worse, that your child will be unable to speak well enough to tell anyone who their parents are, or where they live.

I’m quite sure that many of the audience members were parents of non-autistics. Maybe they also knew how terrifying it was to lose their children, even though their kids didn’t have sensory or speech issues. And even if they had never experienced that kind of loss as parent, it wouldn’t be hard to imagine it. A lost child is every parent’s worst nightmare (not having an autistic child, Mr. Brantley).

I doubt that this type of situation would be difficult to imagine for people who weren’t parents at all, and never will be. Haven’t we all had a childhood experience of being lost and alone? Don’t we still fear it as adults?

I’m not sure whether these distinctions between audience members really matter, outside of one’s ability to openly experience the inner lives and outward circumstances of the characters. All the characters in this and every well-written play represent some aspect of our shared humanity. Most people can relate in some way to well-drawn characters (even the monsters), because their essential humanity or lack of humanity speaks to our own felt and imagined worlds.

It is mentioned on a few occasions in the play that Christopher, “doesn’t like to be touched.” As Emma’s father, I know how painful it feels to not be able to hug Emma when she’s crying after an injury or upset. I want to comfort her (and myself, if I’m being honest). But Emma doesn’t want me to hug her like that. It makes her feel even more distressed. So yes, I felt that pain acutely every time it happened in the play–and it happened a lot. But again, I suspect that people who never had a parenting experience like mine felt a high degree of empathy (with both Christopher and his parents) when he pushed away his too-huggy mother and father.

One of my favorite recurring elements in the play was a tender hand-touching-hand routine between Christopher and his parents. It was clear that they had developed this interaction as a means of conveying their mutual love, concern, understanding and trust. I wonder what our world would be like if we were obliged to communicate without words when we were hurt or upset–where only a simple, silent pressing of palm against palm had to convey all our thoughts and emotions. I suspect it would be a helpful improvement, at least for us “talkers,” as Emma refers to non-autistic people like myself.

I so often get into trouble with words. Yet as a writer, as well as a person, spoken language is my primary communication toolbox. Emma has said that she doesn’t think in words. I still don’t fully understand what that means, how Emma really does think, or perceive the world, but I imagine it’s more like Christopher than myself.

“I see everything!” Christopher exclaims on the train to London, as scenes of the countryside flash by in the windows. Then he describes everything he sees at an accelerating pace, building to a crescendo of overwhelming sound, light and sensation. Fortunately for all of us, theater isn’t limited to words. Nor was the playwright Simon Stephens and the director Marianne Elliott, who did a spectacular job of utilizing every aspect of the form, to not only entertain, but to touch us as deeply and intimately as two palms pressed silently together.

Curious Incident of the Dog in the Night-Time, TheEthel Barrymore Theatre

“Mistaken Beliefs People Have”

I asked Emma what she wanted to write about this afternoon during her writing session.  She typed, “Deconstructing the mistaken beliefs people have.”

I encouraged her to continue and asked what she was thinking of specifically.  She typed, “Mostly what people think they understand there cannot be, when talking about autism, creating lots of bad ideas that attract unoriginal therapies we must put up with.”

“Wow!  Keep going,” I urged.

“Actors playing roles the audience greets with enthusiasm, but an autistic person who doesn’t speak as expected, or at all, is booed off stages throughout the world.”

“Such a great point,” I said.

Emma typed, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

She smiled and then typed, “Put it on the blog!”

And so I am.

Austin1

Scripts – A Communication Bridge

Something happened yesterday that was hugely helpful and gave me some staggering new insights.  I’m hoping this might be helpful to others as well…  The details do not matter, so don’t get caught up in them.

Em and I do the same thing every Wednesday morning, we go visit B. whom Emma loves and also types with.  But this time someone else asked to join us and when I asked Emma what she thought, she said out loud, “Yes!”  She said it with a great deal of enthusiasm, as though she liked the idea.  However I have learned to always verify any spoken words with some other type of confirmation so I held my two index fingers up and said, while indicating the left one, “Yes” or, and then indicated the right finger “no”.  Emma repeated “Yes!” and pointed to my left finger.  Satisfied, we joined the third person and made our way up the street.

A few blocks from our destination, Emma began saying out loud, “City tree house.”  This is a place for small children and it has been the cause of a great deal of anxiety.  I could see, by both the expression on her face and her tone that she was becoming increasingly upset.  By the time we arrived at B.’s Emma was really worried, anxious and very unhappy.   I was doing my best to talk to her about city tree house and how it is one of those places that caters to very small children when  Emma sat down next to B and typed, “You did not listen to my words last time.”  I, thinking she was referring to another conversation we’d had the week before asked if she was referring to that conversation, but she said she wasn’t.  She said that she did not want this other person, who was now sitting in the room, there.  The person said not to worry and immediately got up and left the room

After they left I said, “But I asked you before we left Emma, so I’m confused,” Emma then wrote, “If anxiety rises after choices are made then it may be inaccurate.”

What followed was an incredible conversation about how a decision can be made only to realize that it is the wrong one.  When this happens, go to scripts that are based in memories of anxiety begin.  As we talked I suddenly remembered a conversation I had several years ago with my friend Ibby.  This was a time before Emma was typing with us and I was asking Ibby for her thoughts about some of the things Emma would say out loud that I found baffling.  Ibby told me that I mustn’t try to do a word for word translation, but needed to feel the emotion behind the words and try to understand the context that way.  I remember being utterly confused by Ibby’s explanation and suggestion, but now, today, I get it, in a way I have not understood until now.

I asked Emma to verify all of this before writing about it and she affirmed that I am understanding it correctly.  In the past I would have gotten all tangled up in the specifics of what she was saying.  I would have sought to reassure her about whatever it was.  But now, I understand that these scripts can serve as so much  more.  They can serve another purpose.  They are less about the words spoken and more about the emotions that are attached to them.  So when Em is happy she will often speak of some of her favorite people.  She might reference something that happened more than eight years ago, but that made her feel safe, or a specific time when she was really happy.  I’ve always thought these memories were nothing more than that.  Memories she enjoyed voicing out loud, but nothing more.  But now.  Now, from what she typed, I understand that they are much, much more than random memories.  They are a kind of communication bridge.  A way of saying, I’m happy!  Or I’m feeling really sad, or this is causing me terrible anxiety, but it’s more than just a vague statement about a feeling, it’s actually a brilliant way of trying to convey much more.  It’s a way to communicate a whole series of feelings.

The more I think about the conversation we had, the more I feel I am understanding.  Those scripts are like flashbacks in a movie.  They give us a tremendous amount of information and are symbolic of so much.

Emma ~ 2012

Emma ~ 2012 

Cynthia Kim of Musings of an Aspie wrote about scripting too – Echolalia and Scripting:  Straddling the Border of Functional Language (funnily enough Cynthia and I have done this before, written about the exact same topic on the same day!)

The Assumptions We Make

When I first heard the words “presume competence” I had no idea what that meant.  I cobbled together some ideas of what I’d read and thought it meant and did my best to put them into action.  I did a great deal of “acting as if” and reminded myself, when my daughter wandered off in the middle of my explaining something to her, to keep talking anyway.  When she didn’t seem to look at whatever it was I was showing her I pretended that I knew she was taking it all in.  I pretended I believed, even when I didn’t.  And when my energy was depleted I would not place demands on either of us.  If I wasn’t able to take actions that were centered in presuming competence then I tried not to take any actions at all.

In the beginning the best I could do to show a presumption of competence was to read age appropriate books to her.  This was when Emma was eight years old.  I still remember the first book I read that wasn’t considered “young” for her age.  It was a biography of Balto, the Siberian Husky who raced through a blizzard in whiteout conditions delivering a much needed serum saving countless people sick with diphtheria in Alaska.  After Balto, I read a biography of Helen Keller specifically for children and then, because Emma seemed to enjoy it so much, we read the autobiography of Helen Keller, all the Mary Poppins books, followed by The Wizard of Oz, Alice in Wonderland, The Secret Garden, The Tale of Despereaux, Winn Dixie, Bridge to Terabithia,  Little Women and on and on we went.

At first I was unsure whether she was even listening, let alone enjoying any of these books.  But one night as she settled into bed, and when I didn’t pull out a book, Emma sat up and said very clearly and distinctly, “Helen Keller.”  Emma was not typing yet, so I wasn’t completely sure she really wanted me to read Helen Keller or if she was just saying the name because it was what I’d been reading.  I distinctly remember questioning whether she really wanted me to read the book because it interested her or because this was just part of an established routine and then I had a moment of guilt for doubting her.

As I said, Emma wasn’t typing yet, so there was little we could point to that backed up our decision to presume competence.  There was no “evidence” to suggest what we were doing had anything to do with anything other than a hope and a wish.  As presuming competence is not typically done in the general population or at any of the schools she went to, we were definitely doing things differently.  There were times when I doubted what we were doing. There were times I didn’t believe.  There were times I wondered – what if we’re wrong about all of this.  What if what everyone says is true, really is?  What if?  What if?

In the end I just kept coming back to the thought that presuming competence harmed no one, but to not presume competence and to be wrong would do tremendous damage.   As time went on and it became clear just how many mistakes we had made, I became more determined than ever to err on the side of support, encouragement and believing in her rather than the other way around.  It is strange that the focus is so often on all that is challenging, rather than encouraging all that is not.  Often that thought was the only thought that kept me moving forward.  Sometimes one idea, just a single idea is all it takes.

To presume competence became a living amends and a way of life.  At the very least it is something I can do that is not going to add another item to that lengthy list of mistakes made.

Emma and Balto ~ 2010

Emma and Balto ~ 2010

Question for Non Word Based Thinkers

Four mornings a week Emma begins the day with a Skype call with a professor in New England who is a bio-chemist.  We call him Dr. C on this blog.  They have a close relationship and their conversations flow easily between them.  I am very much the observer most of the time.

This is a sample of one of their more typical exchanges:

Dr. C:  So if water were linear and not bent what effect would this have on life on Earth?

Emma:  Hydrogen would not be able to find connections to create networks, life as we know it could not be.

Dr. C:  Right, so there would be no dipole or tiny magnet, thus water would not align with a + or – side….

The session before this one, Dr. C asked Emma, as a homework project, to construct a Benzene (C6H6) model, which Emma then did.  It looks like this:

Benzene

Benzene

The final piece of the homework assignment was to draw the corresponding Lewis Bond Structure.  This proved much more difficult and took about five attempts before she drew the structure below. (It is awesome and fabulously impressive!)

Lewis Bond Structure

Lewis Bond Structure

The Lewis Bond Structure is basically a replica of the actual three-dimensional model, so much so that you can literally place the model on top of it and it will pair up.  While making the molecular models of things like water, ammonia, methane and carbon dioxide are now fairly easy for Emma, drawing the Lewis Bond Structures are not and it reminds me of a similar problem that writing, handwriting and to a lesser degree typing presents.

I would love to hear other people’s thoughts on why this might be so, but watching Emma cheerfully putting together these models is absolutely fascinating.  And it makes me wonder if this isn’t a key to better understanding how teaching methods might take a page from organic chemistry…

If one thinks in a more three-dimensional way, does it then follow that trying to write, formulate the words to correspond with the thoughts, would present a whole series of challenges?  Doesn’t it suggest that this is more than a “word retrieval” issue?  I’m wondering if there even IS a word retrieval issue, (I plan to ask Emma later) but instead there’s a spatial issue presenting itself as non word based and therefore very difficult to transcribe.

Thoughts?

New Beginnings

Emma suggested I write about “new beginnings and offering ways to practice tolerance and hope for those who despair.”

I asked Emma what she suggested to those who are in despair.  She typed, “Best to give despair less space.”

“Yeah, okay.  How do you suggest people do that?” I asked.

“By filling the mind with all the beauty that is life,” Emma typed.

Yesterday Emma, B. and I talked about what happens when one becomes overwhelmed and how this is a human response, no matter what the neurology.  Overwhelm and feelings of not being able to cope are things all people feel from time to time.  We discussed different ways people try their best to cope: taking a break, taking a nap, acts of kindness, identifying all one has, gratitude, helping others, being alone, quiet, taking a bath or a walk, being in nature…

Emma described her feelings of overwhelm as, “my mind becomes jumbled and louder.”  Her words certainly resonated as this is exactly how I feel as well when everything seems too much and feels more than I can cope with.  Then Emma typed, “there should be practice before it gets too jumbled.”  This then led to a discussion about meditation and how those who meditate regularly call it “practice” because it is something one does daily and can help when “the mind becomes jumbled and louder.”

At the end of a lengthy conversation Emma typed, “I do want to try meditation.” And so we will.

The Buddha with Merlin

The Buddha with Merlin

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…

And I am listening.  I am listening and I will never, never love you less.  You are safe.  You are safe here.  I promise you, you are safe.

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

Typing to Communicate & Busy Work

Typically in school life there is a certain amount of busy work that one is expected to do, forms that need to be filled out (repeatedly), words that you are expected to say whether you mean them or not, because it is what we as a society do.  “It’s just the way it is,” we are told.

However, let’s say you cannot speak and must type to communicate.  And let’s say you are in school where upon arrival you are expected to sit down, state write your name, what day of the week it is and the date.  You are also expected to say write at least one sentence about the weather and another sentence to describe how you’re feeling.   Now let’s also pretend that typing is really difficult for you and it takes you some time to do so in the best of circumstances.

For example, writing five sentences may take you ten minutes or more.  You are in a classroom with other students, most of whom speak and cheerfully say their name, the day of the week, the date, what is going on weather-wise and how they feel in under 30 seconds.  Go ahead, time yourself and see how long it takes you to give that information.   I just did -sixteen seconds and I didn’t have to think about any of the information I was giving for more than 5 seconds.  I did pause for three seconds to figure out how I would describe my current mood, and probably could have used a more descriptive word than “okay” but for the purpose of this exercise, just went with “okay” and shrugged.  :)

But what if you can’t do this.  You cannot find the words readily and when you do, you blurt out someone else’s name or maybe you get the day of the week wrong and some of the other kids chuckle under their breath, but your hearing is excellent and so, of course, you hear them.  Maybe you see that the weather is beautiful and so you say cheerfully, “Pool!” and there’s more laughter or worse confusion and silence.  The only way you can prove that you know any of this is by typing, by pointing to one key at a time with the index finger of your dominant hand, and fortunately you’ve been given the help you need to be able to do this, maybe you’re one of those lucky few that even has someone who is with you who holds the keyboard for you and gives you encouragement.

As you look for the key or the first letter you become distracted and by mistake you hit the wrong key.  You meant to press the S for September, but you hit the d, right next to it instead.  Hitting the d completely derails you, but you know there’s a month that starts with the letter d so you spell out December.  Maybe everything breaks down from there, or maybe you’re able to tough it out and with some patience and help you are able to get back on track, you type the date and the day of the week.  You must constantly check in and remind yourself to keep on task.  You must concentrate and not become distracted.  You know you must write about the weather, something you don’t particularly care about as you know you won’t be able to go outside to enjoy it anyway, so why does the weather matter?

Still you persevere.  You say that it’s sunny outside and finally you’re in the home stretch.  You have to write a sentence about how you feel.  That’s easy.  You know you must write that you’re happy because last time when you wrote that you were feeling frustrated there were questions, questions you couldn’t answer and so you write, “I am happy.”  By the time you are ready to hand in your paper you look up and find the classroom is empty.  Everyone has gone to do “movement” or morning yoga or they’ve split into smaller groups and are reading.  Those five sentences that were asked of you, those sentences that you labored over and now have finished, no one seems particularly interested in reading.

The above scenario is imaginary, but I can still remember the busy work we had to do in school that was very similar to what I’ve described.  It was easy for me.  I answered the questions without thinking twice and I answered them in under 20 seconds.  But my daughter cannot.

If you are going to ask someone who cannot use spoken language to communicate easily, or they cannot speak at all, but can type, even though it may take them five or ten minutes to type a sentence, you better be sure what you’re asking them to write is worth their time and energy.

Typing To Communicate

Typing To Communicate

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