Tag Archives: communication

Saying One Thing, Meaning Another

First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.

Emma ended our presentation by singing one of her favorite songs, You’ll never see me again.  We uploaded this separately and changed it from “public” to  “unlisted” as someone has already given her singing performance a “thumbs down”.  As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.

We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet.  In the meantime here it is, though this link may only work until we’ve made the new video.

As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause.  This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time.  In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.

This morning I was reminded of how Emma, when asked, “How old are you?”  will, without hesitation and in a matter-of-fact voice, say, “Nine.”  If I give her the keyboard she will then type, “I am 12.”  When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.”  She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”

I asked Emma if she was willing to say more.  She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all.  Words pouring forth like water after a dam break, do not pay attention to me.  I am so used to it I no longer fight.  I dread the smiling talkers who insist on spoken language as proof of being and serious thought.  Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”

I asked Emma why she chose this image for today's blog post.  She wrote, "I was so happy riding the horse and this post makes me happy too!"

I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”

 

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.

Tomorrow’s Presentation

Emma and I are giving an hour-long presentation tomorrow at the ICare4Autism Conference.  We have been discussing our presentation and while I would be most comfortable writing everything out and basically reading from index cards, Emma has proposed that we do a much looser, more fluid type of presentation, one where I introduce us and then she will type some thoughts about the topic she chose, My Body Does not Obey My Mind, I will respond, she will type something else and on it goes, ending with questions from the audience.

Emma wrote, “How about making this presentation more meaningful by having me talk and then writing an answer to a question and showing them what we mean when we use the words “body/mind disconnect”?

I asked her if she was okay if I brought up the topic of stimming too.  Emma wrote, “Maybe we start with something less controversial like nice questions about the weather.”

I said, “You mean I ask you a question about the weather and then wait for you to give a spoken answer? And then after you’ve said something, you will type an answer to show the difference in real-time?”

Emma replied, “You ask me a simple question like – How do you like the weather today? – because talkers like that sort of thing.”

So to practice, I said to her, “What do you think of the weather today?”  Emma said, “Pool!”

“So that’s a good example, right?” I asked.

Emma then typed, “Beautiful blue skies with whispering air that rustling leaves answer.”

I said, “That is such a perfect example of what you’ve been talking about.  What else?”

“Vanity will be put aside so that others may learn,” Emma wrote.

When I suggested I write what I would say in response, Emma wrote, “How about you talk about how my talking voice confused you and made you think what I said was my intention?”

I told Emma this way of presenting is nerve-wracking for me, but that I think it will make for a far more compelling and powerful presentation.  She then typed, “You can lean on me.”  I told her I will be practicing mindfulness and breathing to relax.  Emma wrote, “Good work, Mommy.  I will be right next to you lending support.”

I’m counting on it, Emma.  I’m counting on it.

Emma and Me

Emma and Me

Today’s Post Brought to You By Emma

Written by Emma Zurcher-Long

“Today I will tell a short story about a girl who wanted to speak to the wind.  She listened with ears attuned to wind’s song, and desired to speak with its power and beauty.  But the wind was not used to listening, and the sounds she made were ignored.  People heard her and told her to be less noisy.  The wind was loud, yet no one attempted to quiet it.  The girl understood the wind’s voice and eventually it heard her.  Neither one spoke with words.

“The End”

Emma Chose this image from a google search "Girl in the wind"

Emma chose this image from a google search “Girl in the wind”

“A Mind Like a Magician’s Hat”

This morning I asked Emma what she wanted to work on.  She wrote, “We could write a blog post.”

“Okay, what do you want to write about?”  I asked.

“I could make up a story about an Autistic girl who means well, but is not believed smart,” Emma wrote.

“Okay.  Good idea,” I said.

Emma wrote, “She has a mind like a magician’s hat.  Mysterious things are inside.   When revealed, people gasp in astonishment.  Tied to the words regular people can hear are lots of other things they miss.”

“Like what?” I asked.

“All sorts of pleasing sounds, colors and tastes that are healing, but only a special few can experience this.  As loud minds drown out hers, she must work harder than most to be heard.  The End.”

This is the image Emma chose to accompany her story

This is the image Emma chose to accompany her story

Homeschooling, Unschooling…

We are homeschooling, or unschooling or…  I actually don’t know how these terms are defined and haven’t had time to do the research necessary to speak about any of this with any authority, let alone knowledge.  In fact “time” and what that means has kind of blown up in our faces as there never seems to be enough of it.  Richard and I are scrambling to make this work, while making jokes about how many clones we would need to do so, if cloning were an actual thing.  All of this is very new and we have not fallen into a routine yet.  I guess the best description of what we are doing at the moment is – winging it.  We are winging it, though this will change as time goes on, we think.  We hope.  We expect.  What I can say is that Richard asked Emma what part of history she was interested in learning and she chose ancient Egypt and ancient Rome.  This then led to several lessons on the Druids.  Who knows where all of this will lead next!

Meanwhile, Emma and I have embarked on the exciting adventure known as the German language, as per Emma’s request.  We had a particularly hilarious conversation a few weeks ago when Emma first brought up her interest in learning German.  I was somewhat incredulous and kept saying things like “Really?”  and “Are you sure you want to learn German?”  and “What about Spanish or French?”  But no, Emma was not to be swayed, so German it is.  And guess what?  It is SO much FUN!!  We are using a couple of different programs, one is Duolingo, which was recommended by a couple of people.  It’s a free online language program.  Did you know all nouns in German are capitalized?  Why?  Who knows, lots of theories, but there is no one answer as to why, that everyone agrees with.

In addition Emma is working on several writing projects.  One is a chapter idea, in which we will write alternating chapters.  Emma wrote, “How about starting on what you presumed parenting would be before I was born.”  I said, “Can you ask me questions, things you want to know?”  Emma wrote, “Very happy to ask.”  I said, “And what will your chapter be about?”  Emma wrote, “What I presumed the world would be like when I was a baby.”  I cannot wait to hear what she has to say about that!

We continue to make our way through Malala’s autobiography, I am Malala about the Pakistani girl who fought for her right to have the same education as boys and was shot by the Taliban.  This has led to some terrific discussions about advocating for one’s rights, oppression, prejudice, violence, silencing, education, and the lack of.  Recently Emma wrote, “Her life is unlike mine.”  (Referring to Malala.)  “But the oppression is similar to what I have experienced.”

While I continue to go through periods of abject terror at the thought of what we have undertaken, these moments are tempered with the excitement and joy I feel knowing that pulling Emma from school was by far the best thing for her.  She is ecstatic and the marked change in her anxiety and stress levels makes all of us very, very happy.

Emma chose this image for today's post.

Emma chose this image for today’s post.

Ido Kedar’s Blog and Emma’s Response

I’ve written about Ido and his book and blog, both entitled Ido in Autismland, before, ‘here‘, ‘here‘, and ‘here,’ but want to devote today’s post to Ido’s latest blog post because Emma and I read his post this morning and Emma added some of her own thoughts to what Ido wrote.

Ido begins by talking about having just finished up his junior year at a non special education high school.  (I originally wrote “regular,” but then amended that because I no longer know what any of these words even mean, much less how derogatory they sound.)  Ido then addresses parents and then professionals and finally ends the post with a few encouraging words to other Autistic non-speakers.

After Emma and I read his post, I asked Emma what she thought.  She wrote, “I thought it was decidedly helpful to read Ido’s writing.  He tells strong truths lived.  Teaching wasted talkers about life not run on word fuel.”

“Word fuel.”  Can we just take a moment to fully appreciate that?  “Teaching wasted talkers about life not run on word fuel.”  There’s more, so I will disregard my urge to just end this post with that.

I asked Emma if she had anything she wanted to add to the paragraph he addresses to parents.  Emma wrote, “Parents – you must address your fears and doubts first, and then have caring words of encouragement for all word thinkers.”

I then asked for her thoughts on the paragraph addressed to “professionals”.  Emma wrote, “Teaching tedium does nothing, but water down ideas.  Lethargy is the lesson learned.”

Lethargy is the lesson learned.

Ido ends his post with a few words directed to Autistics like him.  Emma then wrote, “Work today, knowing each day pleases the necessary work of tomorrow.  Having hope, and loving, believing parents will make work easier.”

"Talkers"

“Talkers”

Homeschooling

We have sent in our “Letter of Intent” to home school.  Yup.  We have made the leap.  We are going to do this.  We will need to send in quarterly reports.  We will need to send in detailed descriptions of our curriculum.  We have begun a file.  Correction.  We have begun several files.  One of the files has the copy of our “letter of intent”.  The others will soon be filled with “history,” “social studies,” “science,” “math,” “english,” “creative writing,” “philosophy,” “geography,” to name just a few, and “German”.   You read that right.  German.  This is the language Emma asked to learn. “Language,” Emma wrote.    “You mean you want to learn a different language?” I asked.

“Yes,” she wrote back.  “How about German?”

“Seriously?” I asked.

“Yes,” she replied.

We will also be doing theatre and acting.  Emma suggested writing a musical, as well as studying art, art history, artists and doing art projects incorporating painting, collage, photography, origami, fabric, found objects and anything else Emma might show interest in doing and learning about.  Taking a page from one of my favorite artists, Robert Rauschenberg, who once wrote that he wanted to work, “in the gap between art and life” so will we!

All of this has happened quite suddenly.  I have gone from gut churning terror and overwhelm to something calmer and more peaceful.  Somehow writing and sending that letter of intent made it seem concrete…  and now, now I feel tremendous relief.  Just tremendous relief.  I know we will figure this out as we go.  I know it will be tough at times, but in the end, I no longer need to worry that she will be challenged academically.

During a recent typing session I asked Emma if she had anything more to add regarding homeschooling.  She wrote that she was excited to be home schooled and then wrote, “… what cabaret kind of life awaits me I can only guess.”

When I showed this to her just now and asked if there was anything else she wanted to add, she wrote, “I paint words on to the canvas that I think of as my life.”

This is the photograph she chose to accompany this post.

July, 2010

July, 2010

 

Silencing

“Having a voice after years of being ignored saves me from treacherous loss.  Years of nothing, makes the smart ideas percolate.  It is a strong force within, waiting for encouragement.”  ~  Emma

There are people who would like to silence my daughter and those like her.   One person recently accused me of “exploiting” my daughter to “satisfy your own vanity and craving for attention” by publishing things Emma’s said she wants others to read.  This particular person went on to write (as though to Emma), “Autistic people are irrelevant in your mother’s world.  And parenting is more of a competitive sport to her than a domestic responsibility.  That is truly disgusting.”   And yet if I do not publish the things my daughter writes and says she wants others to read and understand, then I become the silencer.  I cannot presume her competent, but then selectively do so, by not publishing what she has asked to have published.

As with my older child, we have discussed, and continue to discuss at length the internet, the importance of realizing what one says on the internet, stays on the internet.  We have discussed issues around human rights and advocacy.  We are currently engaged in an ongoing discussion related specifically to blog writing because of the book we are reading, I am Malala in which Malala writes about being increasingly threatened and silenced by the Taliban and how her right to an education was taken from her simply because she was born female.

There are those who say that the words someone like my daughter writes are not really hers.  This is a different way of silencing, but it is as equally brutal and effective.  They say that because science has not shown RPM to be an easily replicated method it is therefore suspect.  They say, parents like me are so determined to believe in their child’s intelligence and competence, we will go to any lengths to “believe” even when it’s clear (to them) our children cannot possibly be the competent beings we know they are.  This is the opposite of presuming competence.  They go on to suggest that though (in the case of RPM, where there is no physical contact of any kind) no one touches my daughter, those nearby are able to influence, so much so that they can actually force the person to point to letters, which spell out things they do not mean to write.

People like my daughter are in a perpetual state of limbo, a kind of no man’s land, neither here nor there.  For those of us speaking out, writing about all of this, giving our children a platform from which to write, we are easy targets.  There will always be people who disagree. There will always be people who are threatened by ideas that confront what they believe and have been told.  There will always be people who viciously attack for reasons that may or may not be apparent to those they strike out at.  I’ve been fortunate and have not had many who have attacked.  In fact this recent commenter is the only one who has come after me, repeatedly, with such viciousness and undisguised hatred.

But I will not be silenced, nor will I allow my daughter to be; as long as she wants to be heard, I will do all I can to make sure she is.

*Emma chose this photograph to go along with her and my words.  Yes, I read this to her, before publishing.  And sadly, it seems, I must also state the obvious,  I do not and will not publish anything ever, that she does not want me to publish.  This blog will disappear the instant Emma tells me she wants it taken down.

Emma Riding Beau

Emma Riding Beau

 

Beauty

I see you spinning, spinning, spinning.  Your white t-shirt caught my eye.  Moving back and forth so many buildings away, through floor to ceiling windows, I might not have seen, I might not have noticed… but your white t-shirt, so very white, and then, and then I noticed your long limbs, moving in different directions from your body…

In my home, music is playing.  This morning it is John Lennon’s lullaby to his son, Sean.

“Beautiful,
Beautiful, beautiful,
Beautiful Boy…”

And I wonder has someone told you how beautiful you are?  Will you grow up knowing you are beautiful?  Are you being nurtured with those words?  Are you valued?  Is your spinning, spinning, spinning seen as an expression of your beauty?  Are you being reassured that no matter what, you are beautiful?

“Close your eyes,
Have no fear,
The monsters gone,
He’s on the run and your daddy’s here…”

Spinning, spinning, spinning… I glance up and you’re gone. Where have you gone?  The white t-shirt has receded.  The spinning has stopped.  But the lyrics continue…

“Before you cross the street,
Take my hand,
Life is just what happens to you,
While you’re busy making other plans…”

When you are grown, will you internalize what others have told you?  Will the lyrics of your life be one of beauty or something else?  Will you be able to see the beauty of all that is you?

“Beautiful,
Beautiful, beautiful,
Beautiful Boy…”

Spinning boy

Spinning boy

A Stim or “Self-Care”

I asked Emma if I could write a post about her string and she has agreed.  Yesterday she told Soma about her string.  Emma wrote by pointing to letters on a letter board.

“It is sometimes like a pet, but I don’t have to walk it every day. It does not bother me with noise. It helps me think and I can have secret names for it…”

When Emma was around two she had a mermaid finger puppet that she would hold in one hand and run up and down the hallway leading to our front door.  The mermaid had long black hair and she’d watch its hair sway as she ran.  Later, Emma began twirling a strand of her own hair.  She would twirl it around, but then began putting it in her mouth.  The strand would get tangled and knotted and no matter what we did, that strand of hair would escape our attempts to keep it contained.  We were advised to always put her hair in a pony tail, or braid it, which we diligently did, but despite our best efforts, the strand would come loose, wrapped around a sticky finger, wound and unwound; no brush or comb could tame it.

Then, one day at a birthday party Emma caught hold of a balloon string, the kind that one uses for wrapping presents with.  It was yellow and the balloon had long since popped and been cut away.  I kept thinking she wanted the balloon and asked the parent hosting the party if I could take another balloon as Emma’s had popped.  But Emma wasn’t interested in the balloon.  It was the string she wanted.  I was so fixated on the balloon it took several balloons before it dawned on me that the balloon was merely an annoyance and removing it from the beloved string was necessary.

That yellow balloon string was joined by another balloon string, this time blue.  Emma would intertwine the two, twist them together and twirl them.  This then evolved to packing tape, which Emma would strip down to narrower pieces and then gather a dozen or so up and twirl them about.  A few years ago, she began adding brightly colored duct tape to a few of the pieces, thereby binding them together and it became a kind of work of art, constantly changing, growing, evolving.

Now, the packing strips count to over a dozen, some are several feet long, others are shorter, some even less than six inches, but each string is part of a larger whole and when one goes missing, the upset it causes can be terrible.  Still, we have come to understand how important the string is.  When Emma is writing she wraps it around the other hand, or will place it in her lap, or sometimes will even set it down on the table next to her left hand.  But it is always close by.  We have come to see that this is Emma’s version of a stim, or as Emma has described it, “self-care”.

Yesterday Emma wrote about her string with Soma and I once again marveled at her creative and inventive mind.  I have come to see it as a thing of beauty, ever-changing, a metamorphic reminder of life, attachment, movement, and the never-ending dance we are engaged in with ourselves and each other.

A collection of balloon strings

A collection of balloon strings

The string with masking tape.  A precursor to the colorful duck tape that would follow.

The string with masking tape. A precursor to the colorful duct tape that would follow.

The "string" with duck tape

The “string” with duct tape

Soma and Emma

Soma and Emma

Body/Mind Disconnect & Soma

Many people are baffled when they meet Emma and hear her speak.  Their confusion increases when they read things she has written, like ‘this‘, ‘this‘ and ‘this‘.  How is this possible?  How is it that someone like my daughter can speak, but not accurately answer the question, “how old are you?”  Yet, hand her a laminated number board and she has no problem pointing to the number one, followed by the number two.  Give Emma a laptop computer and she will be able to type in the password, as well as type the name of an artist to find her favorite youtube videos, but ask her what she thinks about the Emily Dickinson poem #656 that begins with “I started Early – Took my Dog – And visited the Sea” and she will say nothing in response.  Yet, when I hold her qwerty keyboard that’s connected to her iPad, she immediately wrote, “You taste the ocean, but feel man’s pursuit.”

Emma wrote, “I can tell my totally impish body – Can you please sit still – and then it will do something different.”  Is this similar to the thoughts and ideas that she is able to write, but cannot speak?

In Soma Mukhopadhyay‘s newest book, Developing Motor Skills for Autism using Rapid Prompting Method she writes, “Autism is not just difficulty in verbal interaction; it is also difficulty in tactile as well as kinesthetic interaction…”  “Because of that, an Autistic person may not be able to adapt to new clothes, eat new food, or learn new movements, even though he may have perfect understanding about them.”  My copy arrived the day before Emma and I got on the airplane to come back out to Texas for another of Soma’s four-day camps.  I’ve been reading it whenever I have time, and highly recommend it.

One of the things Emma loves doing while out here is to have a skill building session with the lovely Rebecca Cooper every day after her last session with Soma.  Rebecca uses the techniques Soma describes in her new book.  So, for example, yesterday Rebecca showed Emma how to draw with a colored pencil several boxes, one dark, one light, demonstrating the difference in pressure to obtain such variations and then went on to discuss how light causes shadows.  They then drew a picture of a tree with the sun shining to its left, casting a shadow on the ground and along the right side of the tree’s trunk and branches.

As Soma writes, “The idea of writing this book came from a necessity.  Working with my own son Tito, I realized how his mind and body were disconnected.  As a parent I had two choices – support his physical needs throughout his life or try to do something about it so that his hands that flapped to stimulate kinesthetically also knew how to soap himself in the shower, clean himself, make his bed, fold his own sheets, and assist his thoughts to handwrite independently.”

Rebecca and Emma Discuss Lighting and Shadows

Rebecca and Emma Doing Skill building Exercises

 

 

Transformations

I began this blog in April, 2010 as a document of what I thought would surely be our finding a cure for my daughter’s autistic neurology.  At the time I did not question that this was a worthy goal and one I should be pursuing.  At the time, all I could see were the things challenging her, making her life more difficult with no upside.  She was, I thought, the victim of a neurology that caused her nothing but pain and suffering.  It was not until I was confronted with the joys, things that I had witnessed right from the beginning of her life, but, after receiving her diagnosis then ignored and dismissed, that I began to appreciate the more complex truth about autism and what that might mean to her.  I could not have imagined that four years later my daughter would be posting her profound insights about life, her neurology and the impact society has on her, not because we found a cure, but because we didn’t.

For those of you who have read this blog from the beginning, or poked around and read a post or two from those early days or those who’ve looked through the archives of the pieces published on Huffington Post, you will see a transformation.  It is not a transformation of my daughter’s neurology as was once my goal, but a transformation of our thinking, and as a result the impact our thinking has had, not just on her self-esteem, but on our ideas about ourselves, individually and as a family.  We had to examine and question our own neurology and the challenges we face as a result, before we were able to fully appreciate hers.

We do not take credit for who she is becoming.  We cannot.  My daughter is strong, stronger and wiser than I have any right to claim influence on.  While it has certainly helped that we no longer fight against her neurology, but instead encourage, support and provide her with the help she needs to flourish, it would be wrong to suggest who she is and is becoming is all due to us.  Had we not found people who believed completely in her, people who saw beneath the words she spoke, the way her body moved, had they not shown us and encouraged us to question our beliefs and set them aside, to look beyond what we thought we were seeing and what that meant, we would still be lost in the horror of what we once thought and were told “autism” meant.

This concept, that of helping an Autistic child flourish to be all they autistically can be, is counter to all that we non autistics are told and urged to believe.  So much of the focus is on making our Autistic children behave and appear less autistic-like.  Appearing non autistic is the emphasis and the fact that this comes at a price, is not often spoken of or even considered among the non autistic population.  Many people see Autistic people, witness their inability to say what they feel and think, and believe there is nothing more to see.  They come to conclusions, having witnessed the person’s movement, their facial expressions or lack of, and believe what they see and what they then conclude is the “truth”.  Assumptions can create all kinds of misunderstandings that hurt a population who do not follow the unspoken rules of a majority.

(Trigger for abuse contained in links)  Misunderstandings that then lead to abuse.  Beliefs, like this and this are expressed and taken by many as fact, regardless of how misinformed, regardless of how shoddy the reporting, which further harm people and children, like my daughter.  The cure I seek now is for our society.  A cure for intolerance, sameness at any cost, and for those who seek to silence those who cannot speak with spoken language, but who have a great deal to say through the words they write, is what I dream of.

One of the many down sides of non autistic neurology is how we struggle mightily to blend in, to fit in at all and any cost.   We strive to be better than, to keep up appearances, to cover our awful feelings of insecurity and discomfort with pretense and by controlling those around us.  Some become obsessed with money and power and yet once they have both, they use it to further separate themselves.  Where and what is the cure for that?

This is the journey I now find myself on.  There are others farther ahead, I am doing my best to follow.  There are many who learned all of this sooner than I did.  There are some who will read this and because they have been on this road longer, will see how far I still have to go, but this is a trek, the best sort of trek, filled with discovery and beauty.  Emma is leading the way now.  I really am just trying my best to keep up, while remaining open to all that I still do not know, but am eager to learn.

 

“Rethinking Your Beliefs About Autism”

Emma and I are speaking at the upcoming icare4autism conference  here in New York City, July 2nd.  Over the weekend I asked Emma what she thought the topic of our talk should be.  She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”

I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means.  In fact this is one of those topics I wish I’d known about from the beginning.  It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant.  Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect.  Because she did not look at me or turn her head toward me when I spoke to her, I assumed she wasn’t listening.  Because she said things that I couldn’t understand or were disconnected from my questions, I assumed she didn’t understand the question.  I believed the words she spoke were the words she intended and meant.  It didn’t occur to me that I was wrong.  It didn’t occur to me that she was thinking a great many things, but had no way of communicating all that she knew and thought.

Both Ido Kedar and Naoki Higashida talk about how their bodies do not do as their brain requests.  Tracy Kedar, Ido’s mom, writes in the introduction to Ido’s book, Ido in Autismland, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts.  You want to speak and you know what you want to say, but either you  can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times.  Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting.”  Later Tracy writes, “Since you cannot express your thoughts, only you know that you are intellectually intact.”  And still later Tracy writes, “Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly.  You are bored, frustrated, angry, misunderstood and more than a little hopeless.”

Emma has written about some of this before, but in the next month will be writing about her experience with the “mind/body disconnect” more.  I will be reading her thoughts and insights at the conference and adding my experience of what I once believed.  Emma will then answer questions from the audience time permitting, by writing on her keyboard.

I asked Emma what she wanted to call our presentation.  She wrote, “Let’s call it – Rethinking Your Beliefs About Autism”

And so we are…

Em strikes a pose

A Documentary, Two Blogs and A YouTube Video

The following is a trailer for Spectrum:  A Documentary about Autism and Sensory Perception.  This is the documentary I cannot wait to see when it’s finished!  It features Nick Walker, Martial Artist, writer of the single best description I’ve ever read answering the question  “What is Autism?” and all around amazing guy and Judy Endow, a terrific writer, speaker, talented painter and sculptor and friend.  The third person featured is Tito Mukhopadhyay, eloquent poet, writer and son to the woman I am filled with gratitude for on a daily basis, Soma Mukhopadhyay, who taught me how to communicate with my daughter.

 

This is the first of two blogs you must know about, if you don’t already.  How to Talk to a Woman Whose Child is Dead the most recent post on Unstrange Mind.  It is so beautifully written by the multi-talented Sparrow Rose Jones, who also sells her fabulous art work in the form of t-shirts, stickers, hoodies.  Click this link Red Bubble to see and purchase Sparrow’s wonderful art work.

The second blog, We Are Like Your Child, is one I’ve been following since it was created.  It’s a group blog with a variety of people, mostly Autistic, who write about a wide range of topics.  A Checklist For Identifying Sources of Aggression is a great bullet point checklist everyone should read and Meltdown, Night Blooming Flowers: Sudden Skill Acquisition and Extreme Context Dependence,  Teaching Us to be Silent, and Please Don’t Rush Me are other examples of the kinds of posts you’ll find.

And finally I’m going to end by sharing again a video of the presentation Emma and I gave at CoNGO affiliated with the UN a month ago on World Autism Awareness Day, now captioned thanks to the beautiful and talented, Savannah Nicole Logsdon-Breakstone.  Thank you again Savannah!