Tag Archives: writing

Asking Emma

Imagine for a moment if you had an idea.  It was an idea that was in keeping with a conversation taking place by others in the same room as you, but when you opened your mouth to share your thought, instead of using words that would convey what you were thinking you said something that sounded like, “Peacock!”  Not only did you say “Peacock!” but your voice was loud, some would suggest you were shouting, even though you hadn’t meant to shout, even though you weren’t thinking of a peacock, that was the sound that came from your mouth.

Now imagine that, in addition to this, you smiled and maybe laughed too.  Maybe you laughed because as you said what sounded like “peacock” you were also hit with a memory of a time that was funny, or maybe saying those two syllables made you happy, maybe the act of saying them made you laugh, or maybe you laughed, but nothing struck you as funny, the laughter was merely a response to anxiety or maybe it wasn’t any of these things.  Maybe the laughter just escaped from your mouth, unbidden.

Whatever the “truth”is about why the person suddenly shouts what sounds like “peacock!” and then laughs, while others are having a conversation about global warming or are discussing their concerns with a project they’re working on or are talking to each other about what to have for dinner, they are unlikely to assume the peacock shouter is listening to their conversation, much less that they have anything relevant to add.  In fact, the people having the conversation may regard this outburst as an intrusion, or an unwelcome distraction.  Or maybe they don’t, instead they stop their conversation and smile, or laugh and say something like, “is that funny?”  “Are you thinking of something funny?” or “Oh!  Do you like peacocks?” and when all of this is met with silence or some other utterance unrelated to both peacocks and the conversation they were having, they continue  with what they were saying to the other person.

Richard is good about saying to me, “we should ask Emma” or “Emma, what do you think?” or “Let’s find out if Emma has anything to add” or just turning to Emma and saying, “Hey Em, we’re talking about _____.”  Including Emma in our conversations is not something we regularly did.  It’s not that we never did, it just wasn’t something we regularly did.  Including Emma in conversations was not something we once considered doing, not because we didn’t want to, but because it didn’t occur to us that she was listening and understanding, much less had something she might like to add.  This is where her being able to write her thoughts has changed everything.

Once we began presuming her competent we began including her, but as she didn’t have a way to express herself, the – “do you have something you want to add? or so what do you think?” questions were not asked of her.  But once she began writing, all bets were off.  Suddenly and quite dramatically her words propelled me to reconsider even more what I’d once thought.  All of my assumptions, all those misunderstandings, I now view differently.  Now when Emma shouts, “peacock” I do not assume she is interested in talking about the colorful bird.  She may be, but she may not be.  But and this is a big but, I’m able to ask her and she is able to reply.

Emma has written often that the words that come out of her mouth do not always reflect her thoughts.  I used to think that whatever she said out loud, was indicative of what she was capable of and, in addition, was what she intended to say.  My misunderstanding of what was going on for her made for a great many misunderstandings.  Had Emma not found a way to communicate, had she not found a way to write what she knows, thinks and feels, many people would not question that her spoken language is representative of her mind.  They would not be able to believe that she has the complex and brilliantly observant mind that she has.  For most people this is a very difficult concept to fully grasp.  It has taken me daily exposure to such a mind to begin to stop making incorrect assumptions about not just my daughter, but all people I meet who do not speak or whose language is not an accurate reflection of their thoughts.

Emma

Emma

“It’s Important That Other Parents Understand.”

Written by Emma Zurcher-Long

“I will talk about the upheaval from last night”

“I toyed with downward feelings of rage then

as bountiful memories seeped into my raging mind

I surrendered to purposeful sleep

my screaming mind is momentarily spared from stormy thoughts

piercing my being

threatening no kindness

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

Only the dedicated few

talk about love during episodes of furious pain

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

 

From Ariane:

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

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

“Pounding terror is all that remains.”

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

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

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

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

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

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

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

And this: “Don’t try to distract me.”

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

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

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

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

The beauty of Emma.

Emma ~ 2012

Emma ~ 2012

 

Dare to Hope

Trigger Warning:  Parental despair

Five years ago I was in a bad, bad place.  Life felt unbearable.  The future loomed ahead shrouded in fear.  I could not imagine a life that was not bleak and filled with pain.  There were times when I could not bear the thought of another day.  There were times when I felt it was all too much.  People would make kind suggestions, but none of their words made sense to me.  I was sinking and saw no light.  I thought it was because of my specific circumstances.  I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her.  I was told she couldn’t comprehend this world.  I was told concepts like less and more, time, currency were beyond her ability to grasp.  I was told she was in her own world.  Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children  had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed…  There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry.  I cried for myself, but I also cried for my child.  I loved my child.  I ached for my child and what seemed to be her inevitable future.  Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being.  I had fantasies of “heading north”.  I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.”  Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing.  There was a part of me that meant it.  I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description.  There are those who will judge me and what I once felt.  There are those who will point out how self involved all of this sounds.  They will say, but how could you not see that what you were feeling was affecting your child?  There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror.  I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours.  She is writing now.

She is writing such incredible words.  Sometimes a sentence may take her five minutes to construct.  I would cheerfully sit for thirty minutes or however long it takes for her to express herself.  Parents hear about my daughter and they say, “Ah, but my child isn’t like that.”  And so I ask, “How do you know?”  Parents say, “I know my kid.  He/she isn’t able to understand.”  I once believed that too.  And so again I ask, “How do you know?”  Parents say, “I know my child better than anyone.”  I once said this as well.  I thought I knew.  I believed what others told me.  She would laugh and then run full force into a cement wall, using her head as a batting ram.  We would get the dreaded phone calls from her school.  All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.”  “She does not know the value of a penny.”   “We will continue to work on sight words.”

Today my daughter is enlightening me.  If you want to know more, read “How We Got Here“.  Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.”  Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that.  I cried because I didn’t know until recently.  I cried for all the years when she had no way of telling us.  I cried for all the times I didn’t believe.  I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams.  I cried for every single parent who has ever felt the way I once did.  I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them.  I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.”  I didn’t dare hope that one day my daughter might be writing the things she now writes.  I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair  – I was once just like you.  Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant.  I’m grateful now that I didn’t find such a group because there’s another way.  I found another way, but not before making many, many more mistakes.  This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope.  Without that we are all lost.

*As always, I asked Emma for her permission to publish this post.

Watch:
Wretches and Jabberers
Mark Utter’s I am in here

Read:
Ido Kedar’s book:  Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.

Emma getting ready to write

Emma getting ready to write

The Power Of Understanding

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now.  Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”.  Both agreed.  What has occurred as a result is nothing short of incredible.  Understandings have been forged, exchanges of ideas and beliefs have been made.  They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer…  Many people take these types of conversations for granted.  But we do not.

Listening and learning…

Nic & Em

And the Winners Are…

Emma randomly chooses the winners...

Emma randomly chooses the winners…

This morning  I placed all the names of those who commented on yesterday’s post into a bowl and Emma randomly chose five names to win Barb Rentenbach and Lois Prislovsky’s hard cover book, I Might Be You

Be prepared to be blown away.  This book is absolutely wonderful.

To all the winners – Julie L., Edie, Kathy Quoyerser, Corinne Joly and Jill – I will be contacting you by email. Your book will be sent via United States Postal Service after I’ve received your address.

And for those who want to read it, but didn’t win, please consider purchasing this terrific book either as a hard cover or as an ebook available for all eReaders, or the audiobook, which I had the honor of recording with Barb and Lois in New York City last year.  I am the “voice of Barb” and documented that amazing experience ‘here‘, ‘here‘, ‘here‘ and ‘here‘.

2

without looking…

And the winners are...

And the winners are…

“Barb Doesn’t Talk” ~ Emma

I have a friend who, when they met over a year ago, Emma observed, “Barb doesn’t talk“.  “Doesn’t talk” means she doesn’t talk with her mouth to communicate the way she can and does when writing.  Her name is Barb Rentenbach and she and her therapist, Lois Prislovsky wrote a book, I Might Be You.  I’ve written about Barb and Lois before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  If you haven’t read their book, you must.  (Continue reading for a surprise later in this post about that book.)

I met Barb at the Autcom Conference in 2012 and though I didn’t know it at the time, Barb and Lois  would have an enormous impact on me that was far-reaching.  You see, it was because of Larry Bissonnette, Tracy Thresher, a boy I saw writing to communicate, and finally Barb, all of whom I met at the Autcom Conference, that I began looking into other ways for my daughter to communicate.  (You can read more about the process by clicking “How We Got Here“.)  Even though Emma can and does use her voice to speak, she has described her attempts to communicate with spoken language as, “I can’t talk the way I think.”  Later Emma wrote, “Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.”

In Barb’s most recent blog post (I urge everyone to read it) – Open Hearted Letter Quilt to Andrew Solomon –  she writes about autism, empathy, and how autistic people are often misunderstood:

“It’s like Saxe’s (1873) poem, “The Blindmen and the Elephant” where each blind man is partly in the right as he describes an elephant piece he studies, but all are in the wrong in knowing an elephant.

This autistic pachyderm will expand perceptions by presenting more pieces.”

Barb goes on to describe herself, “I don’t look normal.  I appear quite messed up and a prime candidate for nothing but pity and patronization, with a sprinkling of repulsion and fear.  I am disguised as a poor thinker.”

Still further along she quotes Emma:

“To quote my mentor Emma who is 12 (This old dog is all about learning new tricks) who wrote this by saying each letter aloud she pointed to it on a stencil board, “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”

This short video shows Barb typing just a few days ago.

Now there are some people who have suggested Barb is not typing on her own.  They believe that the person whose two fingers are tentatively touching her back are actually guiding her and that it is their voice and not hers that we are reading. This is a video of Barb writing four months ago…

And here is a video of Barb typing in 2011…

I am showing you these clips so you can see Barb’s obvious progress and please note, Barb is not a child.  I know that’s obvious, but it seems many people forget this or have trouble believing that people of all ages can and do progress.  Just as Barb works hard to become more independent while typing, so does my daughter.  Emma’s way of writing is slightly different in that no one is physically touching her and she points to letters on a letter board,  but she is working hard to move from pointing to the stencil letter board to the laminated letter board to a qwerty keyboard, with the eventual goal – being able to type on a computer regardless of who might be seated nearby.

As all these videos show, none of this is easy.  Barb is working hard and so is Emma.  Some days go more smoothly than others.  As Barb writes –

“I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time.  Please try harder later.”

For any of you who would like to have a hard cover copy of Barb and Lois’ terrific book, I Might Be You, I am giving away five hard cover copies.  Please comment below, saying something about yourself and why this book is of interest.  I will place all comments into a hat and will choose five at random.  If your comment is chosen I will contact you, via the email you use to comment, for your street address, where I will send you your copy of Barb and Lois’ MUST READ book at no cost to you and in appreciation to Barb, Lois and Emma for their hard work in bringing much-needed awareness to all who are like Barb and my daughter!

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

 

 

 

What Are State Assessments Assessing?

Yesterday, while at Emma’s school, her teacher showed me a sample of the state assessments that Emma is required to take, though there were record numbers of parents this year who protested them by opting out.  These assessments are done twice a year and take an enormous amount of time and energy from all involved.  The page the teacher showed me was about Ronald Reagan.  It was a series of facts that are read and then the student is supposed to choose the correct answer from two choices related to the facts just read.  I decided to use the page as an example of why I so vehemently object to these state required assessments as they are currently laid out.

I read the facts to Emma and then asked her to give me the answers by saying the correct answer out loud.  This is how the test is typically done.  Emma chose the last choice to each question every single time.  I then said, “Okay.  Now let’s do this using your letter board.  I asked the same questions, only this time, offered her the letter board and without any hesitation she got 100% correct.  I then asked her to circle the correct choice and she was able to do that too, which was interesting to see.

We did not go over more of the assessment, but for all those students who are like Emma, these assessments are useless.  They are not telling anyone anything helpful.  In fact they are giving inaccurate data.  If Emma had not been given the opportunity to learn to communicate using a letter board, she would have no way of proving she knows the correct answer.  How many children are just like Emma?  I do not believe for a second she is the only one who cannot say what she knows, but if given appropriate accommodations would be able to.

It is incredibly frustrating to have the state require her to take such assessments, which, as they are currently written, do not accurately assess what she is capable of.  This is my biggest objection with so much that is done when it comes to autism.  Far too often the current conversation is by people who are looking at things, similar to these assessments, and basing their beliefs on the information they are getting from them.  Incorrect information that tells us nothing of what a child is actually capable of.  Assessments, that in fact are assessing nothing.  What is being learned?  What a massive waste of time and money.  We should be doing better.  Our children deserve better than this!

*We are hoping to have the video of Emma’s presentation at CoNGO up on the blog tomorrow!

April 9, 2014

April 9, 2014

Respectful Engagement

Respect.  I think about this word a great deal.  There are things I do, things I think in any given moment are examples of me teaching respect and yet in the teaching I am not modeling the respect I am trying to teach.  Here’s an example of what I mean –  (this example is fairly mundane, but it serves my purpose because it’s something that most of us can relate to.)

Let’s say Emma and I are in a new place.   Somewhere, perhaps like the place we recently went to give a talk on Autism Acceptance, where most or all of the people are strangers.  As we enter the room I notice someone I do know and they walk over to say hello.  My upbringing dictates that I introduce this person to my husband and daughter.  I do this by saying, “Hello _______, this is my husband, Richard, and my daughter, Emma.”  The person nods and says hello, maybe they even extend their hand.  My husband without thinking, says something along the lines of “Hello _______, it’s nice to meet you.”  Maybe they shake hands.  My daughter turns away saying nothing.  I am aware that this is not the conventional way (polite) to greet someone so I, without thinking, direct her, “Emma say hello to _________.”

I know enough not to ask her to touch the other person, even if they’ve extended their hand, but I forget that there may be a good reason for her non-greeting.  Perhaps the lights are too bright, or all these strangers are too much, perhaps she is overwhelmed, or the noise is making it difficult for her to concentrate on any one thing.  Perhaps she senses this person is not someone she gets a good vibe from, perhaps the person is standing too close to her.   Regardless of whether I know what could be causing her not to say hello, demanding that she do so, is not the best thing for me to do.

Instead, I might lean down and whisper in her ear, “Do you want to try saying hello to _____?”  If she does decide she’d like to and can, fine and if she cannot, for whatever reason, then that’s fine too.  But before I say something like this I will want to have done a lesson plan around “social niceties” or the things people say to each other and why they do so.  This is the ideal.  However this is not what I always do, because I forget, but these are the little things I constantly think about.  How can I parent better?  How could I have approached that situation more respectfully?  How can I use this as a teaching moment, not just for my daughter, but for myself?

One of the things I’ve learned over the years is that kindness, directed toward myself and others is the single best way most of us learn.  When someone yells at me, I don’t learn, in fact, I shut down.  Even if the person does not yell, but criticizes me, scolds me, directs me to do something without explanation, I feel myself becoming self-conscious or worse, shutting down.  I close in on myself.  I can’t hear what the other person is saying.  I become engaged in an internal battle.  When someone is respectful and kind, I am open and much more likely to listen to them.

People say things like – “oh but that takes such patience,” or “who has the time to do all that?”  I understand.  But I know that the other way, while easy and perhaps quick, is nothing more than a quick fix, if that.  The person may say the words I’ve just directed them to say, but the next time I will go through the same process.  But there’s an even more important piece to all of this, because one can argue, who cares about social convention?  Why should any of us care?  Why should we say hello to one another?  None of this matters.  And I agree, none of this is really the point, the bigger point is that I want my children to understand that we live in a world filled with other people who may or may not share their neurology and that many of those people when met for the first time may offer their hand, if in the United States, and say hello.  I want my children to not be put off by this, but know that they have the option to say hello if they are able to, or not and that I will be respectful of them no matter what their response is.

Directing my daughter to say words that I give her, is not being respectful of her and it also is not presuming competence.  When I give her words to say, I am allowing my issues around social convention to take precedence over respect for my daughter and her sensitivities to her environment.  I want to do better than that.

*I purposely have used the present tense, as this is something I continue to explore and am trying to do things differently.  This is very much a work in progress!

Dressed for spring rain - April 8th, 2014

Dressed for spring rain – April 8th, 2014

Thoughts On Thinking

Friday evening I asked Emma whether she wanted to use the laminated letter board or a qwerty, bluetooth keyboard connected to the iPad.  She told me she wanted to write using the keyboard.  Emma has written on the keyboard during her RPM sessions with B., but this is not something I’ve attempted.  I have been reluctant to use the keyboard because Emma has done so well using the laminated letter board with me and I’m always worried about changing something that’s working well.  But when using the letter board I have to transcribe as she writes or hope that I’ll remember what she’s written, whereas with the keyboard it automatically types directly onto a document within the iPad.  Often I can’t remember what she’s written, or think I have remembered correctly, only to find out later I did not.

This was the case Wednesday night when Emma wrote in front of an audience at CoNGO.  I hadn’t stopped to transcribe her words as she wrote them, thinking I’d be able to remember, but once she’d finished the sentence, I couldn’t remember.  Afterward, when we thought we hadn’t recorded our presentation, I tried to remember what I thought she’d said – “Autism is not what parents want to hear, but I hope that will change as more people meet someone like me.”  What she actually wrote, once we found the video recording, I was disconcerted to learn, was – “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”  That is a subtle, yet significant difference.  I’m so sorry Emma for getting your words wrong.

Our goal has always been for Emma to write on a keyboard and eventually be able to write with the keyboard resting on the table, so that no one need hold it.  That she wrote both Friday evening and over the weekend on the keyboard is a huge leap forward and very exciting!!

So.  Friday evening Richard asked Emma for permission to ask her a few questions about thinking.  Now for those of you who know Richard, you will smile as you know this topic is one of his favorites.  He loves nothing more than to read and discuss thinking, consciousness, dreams, reality, and anything remotely related.  These are the topics Richard explores in his writing and the things he is fascinated with.  Richard wrote on Emma’s Hope Book FaceBook page – I “think” of “thinking” as my constantly chattering internal dialog.  I have long suspected that Emma has either NO internal dialog, or very little, and that what she “thinks” of as “thinking” must be very different from what I “think.”

Emma generously agreed to allow her dad to ask her a few questions though she did remind him that she had the timer on.

*I need to interject here that the following conversation is representative of Richard’s “thinking” and Emma’s as she describes it.  No one is suggesting that ALL people, either autistic or non autistic think as either of them do.  It would be a mistake to assume Richard is somehow representative of ALL non autistic people, though many may relate, or that Emma is representative of ALL Autistic people.

Richard:  Mom and I have this internal dialog going on all the time and that’s what we call “thinking”. How does this differ from the way you think?

Emma: I only think in voices when I am working with you (Ariane).

Ariane: Is this also true when you write with others?

Emma: Yes.

Richard: Do you see our internal dialog as an advantage or disadvantage compared to your own way of thinking?

Emma: It is more distracting than the way I think.

Richard: Tell us more about how you think. If it’s not with an internal dialogue, what is it like?

Emma: Know that I am almost always happy and take great pleasure in sounds, color, fabric.  Everything in life is beautiful if you are able to be here.

*Whoa!  “Everything in life is beautiful if you are able to be here.”  

Richard: I’m so used to thinking with an internal dialogue. It’s hard to imagine thinking without talking to myself.

Emma: Have you felt this always?

Richard: When I was a kid I didn’t talk to myself all the time. I was probably a lot happier. As I grew older, my internal dialog became stronger and now it’s there most of the time. I have to meditate or concentrate to temper it.

Emma: It’s too bad that you have difficulty.

Richard and I looked at each other and shook our heads in amazement.  Then Emma began to laugh and we joined her.

*The keyboard we are using is a Kensington Keyboard.

**A brief update on Emma and Ari Ne’eman’s presentation at CoNGO last week that we video taped, thought we hadn’t then found we had.  We have not had time to upload it and we haven’t received approval from Ari yet, so it may take a few more days before we can post all or part of it here.  Bear with us.

Emma types on a qwerty keyboard

Emma types on a qwerty keyboard

How Do We Put A Price on Communication?

As I was downloading a couple of photographs just now, I found the video we took of Ari and Emma’s presentation Wednesday evening.  Intact.  We’ve got it all!!  Woot!  Woot!  But before I put the video on here, I have to get permission from Ari and Emma.  So let me do that and then, if both agree, you should be able to view it next week.  I’m hoping by Monday.

In the meantime, there’s something else I want to talk about.  And that is the experience of hearing your child’s thoughts and opinions, interests, questions, and desires, when you weren’t sure you would ever be able to do so.  Now this is a little loaded because there are some who believe it’s wrong to suggest all Autistic people will be able to express themselves.  Those people believe there are some who cannot and it is creating false hope to suggest otherwise.  There are still others who feel that communication comes in myriad forms and we must stop insisting one way (speech) is the only way. They believe we should honor all methods of communication, whether that’s through words, sounds, body language, or silence and using our other senses.   Those people believe, and I am one of them, that we all have the wish to connect with our fellow humans in some capacity, at least some of the time, and it is incumbent upon all of us to figure out how we can support each other so that all have the opportunity to do so.

When Emma first wrote an unexpected sentence, described in detail ‘here‘ it was the beginning of what would turn out to be nothing short of an odyssey for all of us.  From that moment, on November 25th, 2012, we have experienced what can only be described as a dream-like adventure with Emma leading the way.  The degree to which she was underestimated by almost everyone who met her, including us, is beyond my ability to describe.  I say “almost” because there were a few people who met her who were not fooled.  It is interesting to note that those few were Autistic.  My friend Ibby was the first and we’ve written a little about this in two pieces she and I wrote featured in Parenting Autistic Children With Love and Acceptance’s first addition of their terrific new magazine, which you can read ‘here‘ (It begins with a piece by Ibby on page 17 and then ends with my companion piece beginning on page 21.)  By the way, the entire magazine is filled with wonderful pieces by Beth Ryan, Nick Walker, Cynthia Kim, Amy Sequenzia, Renee Salas, Sharon davenport, Alyssa Hillary, Kimberly F. Steiner, Juniper Russo, Amy Caraballo, Jane Strauss, Kelly Green, Steve Summers, Leslie Rice, Zita Dube-Lockhart, Leah Kelley, Lei Wiley Mydske and others who donated their art work.

When someone sees Emma, who now communicates by pointing to letters on a letter board, (which is different from when she wrote that first sentence a year and a half ago) I sometimes hear the following comments – “I just don’t see how this can translate to a school setting” or “It takes too long” or  “economically it’s not feasible because it requires a one on one ratio that most schools won’t be able to pay for.”  Except here’s the thing…  The way Emma communicates is tailored for an academic setting.  Just as in any classroom, a student is called upon to give an answer or thought, about any given topic, so could Emma be given the opportunity.  All it requires is for the teacher to say, “Emma when you’re ready just signal and you’ll be next.”  The aide can then raise their hand when Emma has finished writing.  This would also deal with the comment that it “takes too long” and I’ll just add that our society’s increasing desire, that everything be reduced to a sound bite, should be tempered, and having someone like Emma in a classroom, would be beneficial to all, by the very fact that we all need to slow the f*ck down.

As far as what this means economically, I argue that there is a great deal of money being spent on a great many things that are NOT working.  Things like trainings for methods that do not produce the type of complex and nuanced language we are seeing.  How do we put a price on communication?  How can anyone suggest that having someone who was thought to be unable, or worse, incapable of expressing their thoughts, not be supported to do so because of the cost associated with it?  How can any of us seriously object?  And yet… people do all the time.  And it catches me by surprise every, single time when they do.

To see your child express their thoughts, as we have had the opportunity to do, is beyond anything I’ve ever experienced.  It has changed everything.  Literally everything.  Some people have said to me, “Oh you’re so patient.”  No.  I’m not.  When Emma is writing something, I am filled with eager anticipation for what she’ll say.  Patience?  No.  Ecstatic is a better way to describe my feelings as I witness the outpouring of her words.

How we engage with our daughter, how we speak to her, what we think and now believe, all of it has dramatically changed as a direct result of her communication.  I haven’t even begun to discuss what this has meant to Emma.  And here’s just one more massive difference between then and now.  Instead of me guessing or making assumptions about what this means to Emma, she can now tell us.

“I want to tell you that I am capable.  Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.”                                         By Emma Zurcher-Long

How does anyone put a price tag on this?

Emma Wears A Pretty Dress To School ~ April 4th, 2014

Emma Wears A Pretty Dress To School ~ April 4th, 2014

Emma Discusses – Awareness

“Awareness is deciding something is worth your time and attention.  It is not necessarily good.  Real awareness needs to be balanced.” ~ Emma Zurcher-Long

I asked Emma whether she wanted to write something about autism awareness since April 2nd is World Autism Awareness Day, designated by the UN in 1989.  Emma wrote,

“Autism awareness really does me very little.  It is not honoring or making my life easier.  So many believe I am unintelligent even though I write well.  Until they see me writing, it is not what they assume.  What good is awareness if it doesn’t tell people the truth?”

Ariane:  “What is the truth?”

“The truth is, so much of what we perceive compared to another, isn’t known.  People see me, but don’t understand what they are seeing.  I want people to know what it is like to have smart thoughts, but not be able to prove it.

“No one wants to be treated with impatience.  I am happy when people are aware of how bright I am.  Maybe they have a special light bulb for that.  Shine some awareness on those of us who can’t talk the way we think.”

Texas ~ September, 2013

Texas ~ September, 2013

Experiencing Without Words

Over the weekend we played a story telling game.  The round robin story telling was an idea Emma came up with during an RPM session she had a few weeks ago and it seemed like a great idea for a rainy Sunday morning.  (Unfortunately, I didn’t get everyone’s permission to print our story here.)  Suffice it to say, it involved rain, a family made up of two parents, a girl, a boy, and a tornado carrying a herd of walrus.

Emma began the story with one sentence, then each person added a sentence and we continued going around in a circle.  Emma spelled out her sentences by pointing to letters on her laminated letter board, my husband and son said their sentences out loud while I transcribed what they said, but when it was my turn, I found it very difficult to think of what to add out loud, and so I wrote my sentence down first and then read it to the group.

After each person’s contribution there was much laughter and ad-libbing.  At one point Richard, who, it must be said, couldn’t help himself, constructed perhaps the longest, and wonderfully, creative run-on sentence every spoken.  He did look a bit sheepish afterwards, but the story moved along until it was Emma’s turn again, where upon she said, “All done.  No.  You have to work!”  Her comment reminded me that for Emma this “game” that was intended as fun, was “work” for her.  As no one else was viewing it as work we stopped after the fourth go around, at which point Emma raced off.

I think a great deal about how hard it is for Emma to communicate, whether that is through spoken language or writing; they are both hard.  This surprises many people who assume, as did I, at least in the beginning, that someone who cannot rely on spoken language to communicate, would be more than a little relieved to finally find a way to express themselves by writing instead.  However Emma has told me on several occasions that while she is relieved that people finally can understand her when she writes, it is also very, very difficult for her.

Emma recently described writing as, “It’s too hard work,” but it’s easier for the rest of us, particularly as it tends to be more accurate of her thinking than her spoken language.  Not long ago Emma wrote, “I can’t talk the way I think.”   But it would be a mistake to then assume writing is easy or that she eagerly does it.  And I was reminded of all of this when it was my turn to come up with a sentence for the story.  I couldn’t come up with a sentence through spoken language, but had to write it down first.  What if everyone had insisted that I say my sentence out loud, what if someone had said that it was against the rules to write the sentence down first?

I can tell you it would have been much more difficult for me, though it still would have been fun.  But what if I experienced the world in other ways and not with words?  What if my experience of people and things was not through pictures, words or anything that can even be described with words?  Wouldn’t both written and spoken language through the use of words be equally difficult for me?  What if my experience of the world was completely different and having to translate this experience into words was actually impossible?  What if so much was lost in the translation that it no longer represented my experience?  What then?

Em with her string

Em with her string

Seeing Others Write To Communicate

I often think about that first time I saw someone who was unable to express themselves through spoken language, but who spoke through writing.  There is nothing quite like seeing to believe or at least to begin to believe what many of us have been told is impossible.   So I’ve compiled a few Youtube videos of different people who communicate the way Emma does.  A couple of them show people who have graduated from the laminated letter board and now type independently on a stationary keyboard.  This is our goal and what Emma is working toward.   For those who may feel someone holding a laminated letter board is cumbersome and suspect, please keep in mind the letter board is a stepping stone, which all hope will eventually lead to full independence.

The first video is of Ido who now types independently on a keyboard.  Ido’s blog is Ido in Autismland where, in a recent post, A Challenge to Autism Professionals, he wrote:

“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.”

At the end of this terrific post he writes:

“Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.”

Ido wrote a book with the same title as his blog – Ido in Autismland.  I cannot recommend this book enough and have written about it before ‘here‘ and ‘here.’   It should be required reading for all parents with an Autistic child as well as anyone who is considering entering or is already in the field of special education and/or autism.

This second Youtube video is of a boy who writes a letter to his church.

Jackie Dorhurst is a speech/language pathologist shown here working with Gavin.  Jackie has an organization called RPM+ located in Wisconsin.

This next video is of my friend Sue Finnes’s son Chris.  Sue has a wealth of videos that she’s posted on Youtube over the years of Chris working with a number of people whom she’s trained to work with him.

And finally this video is of another independent typer, Mitch Helt who writes a letter to his aide.

This post was inspired by a comment from Ari,  who has a wonderful blog, Pixie Perceptions.  You are not alone Ari.  Doing all I can to make sure others realize this…

Talking By Writing

*Emma gave me permission to write about the following…*

Every Tuesday afternoon I go to Emma’s school where Emma and I do a sample lesson, or Emma answers questions from staff or sometimes someone wants to share what they worked on with her and what her answer was.  As Emma “talks” by pointing with a pencil to the letters on a laminated letter board she twirls her string, and often, while she is “talking” by writing, she is also talking, as she describes it, “with my mouth” at the same time.  When I mentioned this to her at our last training session she smiled and wrote, “It is hard for non autistic people to multitask as well as I can.”  Which was one of those frequent – oh-my-gosh-Emma-you-are-so-fabulous – moments, because, really, not only does she have a wickedly wonderful sense of humor, but whoa(!) how right she is!

Later Emma wrote in answer to the question, “Is it problematic for you to switch from the letter board to a qwerty board, she wrote, “No.  It’s not a problem.  Is it hard for you?”  I was so taken aback by her response, because, honestly I had not ever considered that it isn’t a problem for me, so why did I assume it would be for her?  And yet, I have.   This was yet another reminder to me of how I presume competence as best I can with all that I know and yet, am humbled by constant little nudges urging me to go farther.  How beautiful is that?  Seriously?!

When I began witnessing people who use spoken language like my daughter does or who do not speak at all, but write, often poetically, often beautifully, I was astonished.  It was unlike anything I had ever seen before.  It’s been close to two years now since that first time I witnessed in real life someone communicating this way.  At first I was so incredulous, all I could do was watch and try to take in what I was witnessing.  After many encounters, repeated by so many people, men, women, teenagers, boys and girls as young as seven or eight I went from shocked amazement to a more calm feeling of  excitement, but even now, having spent nearly every day watching my daughter write this way, I often still feel like I’m in a dream.   It is as though I have been allowed into another dimension, and it is more beautiful than anything I ever believed possible.

"Talking" with the letter board

“Talking” to Soma using the letter board

 

“How Did You Learn To Read?”

A few days ago someone asked Emma, “How did you learn to read and spell?”  Last night, in response to this question Emma wrote, “I learned by watching the words my mom read to me.”  She went on to write, “I was able to read many years ago and could write, but didn’t have any way to show it.”

I asked, “Were you able to read as a very little girl?”

Emma wrote, “Yes.”

“As a toddler?”

“Yes,” Emma wrote again.

What is interesting about this is that for years, when Emma was very young, I assumed she didn’t like being read to because when I tried she would grab the book, insist on flipping the pages faster than I could read them, and generally seemed (to me) uninterested.  But from what she wrote last night, it suggests I was incorrect about these early assumptions or at least was partly incorrect.  I am no longer shocked by all that I didn’t understand.  It no longer surprises me to find out, even now, how wrong I was and continue to be about so much when it comes to my daughter.

Because Emma did not sit quietly while I read to her, I thought she didn’t like being read to.  Because Emma preferred holding the book and would turn the page before I had time to finish reading the words I assumed she wasn’t interested in the story.  Because Emma protested if I tried to take the book from her to continue reading, I assumed she wanted to be left alone.  Because Emma seemed distracted while I read, I believed she didn’t like the story, didn’t care for the book, didn’t like books in general.

How would I have viewed her various therapies, preschool, and later grade school, had we understood that she already knew how to read at such a young age?  Our decisions on how to proceed, our opinions regarding what others told us, so matter-of-fact, so sure of themselves… who knew how wrong they all were?   How wrong we were?

People say things like – parents know their child better than anyone.  In our case no one knew our child better than anyone.  We didn’t.  All those therapists who worked with Emma didn’t.  All her teachers, everyone who came in contact with her, not a single person during those early years ever said, “I’m guessing she already knows how to read” or “maybe she already knows, but we haven’t found a way to help her show us all she knows.”  Emma’s need to move, her inability to consistently say out loud what she intends, her deep need for sensory input, her attempts to regulate herself, none of that was understood by anyone, including us.

Had we not begun to find ways for Emma to communicate through the written word, had we insisted on her “speaking,” we would continue to be in the dark. All the things emphasized in  school for a child like Emma who is physically capable of articulating words made us believe spoken language was what we needed to concentrate on.  What we are seeing is that the less we focus on her speaking and the more we focus on her writing, the more she is speaking.

“Hey Em, do you want to put the smaller string in your backpack, just so you have it?” I asked as we headed down to meet her school bus this morning.

“N” “O” Emma said, as she bounded toward the elevator.

A self portrait in the making

A self portrait in the making