Tag Archives: language

Can Speech Challenged Students Get an Appropriate Education?

     What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

     In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

     There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

      The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

     There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

I am Emma

“What is your name?” someone might ask.  It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward.  Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth.  I call these utterances my “mouth words.”  They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not.  My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many.  Mouth words are witty accomplices to a mind that speaks a different language entirely.  There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist.  I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier.  I have come to understand that my mind is not like most people’s.

I am Autistic.

Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings.  My hearing is excellent.  Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn.  I am compelled to imitate each one I hear.  Car horns I can respond to cheerfully.  It’s the same with light.  The harshness coupled with bloated heavy air is so intense I become overwhelmed.  I wonder if I am too aware of my surroundings.

Some people have suggested I am unable to feel empathy and assume I have no desire for human interaction and friendship.  I feel people’s intentions and feelings so intensely it can be difficult to concentrate.  I am too sensitive to other people’s sadness; it is akin to drowning or like being smothered by the weight of damp earth covering your entire body, filling your eyes, mouth and ears.  Piercing shards of past and present pain cause me to turn away or make faces or laugh outloud to lessen the weightiness.  There is no lack of empathy, but rather an unmanageable abundance that defies my best intentions.  It is during these moments that I flounder because society expects less of me and not more.  I listen to the words spoken by people who are crying or shouting.  They say things like, “I’m okay,” through tears or “No, I’m not angry,” as they clench their fists,  but their words are in direct conflict with their actions.

Others believe that I do not have feelings at all.  How do you defend yourself against such accusations?  Trying to convince those who believe I’m an empty shell is impossible.  Adding to this is my inability to use spoken language as expected.  “No, you cannot put putty in your mouth!” in answer to “what’s wrong with that girl who is crying in the corner?” does not help change the minds of those who believe me incompetent and without feelings.

If I tell my mouth to behave and demand that certain words come out, stress barks and growls, jarring my mind so that it folds in on itself and favorite scripts begin.  “You cannot throw your lunchbox at Kevin!” or “Maddie’s not here anymore” helps me control the waves of anxiety that press up against me.  Hearing my voice keeps the dark, piercing void of nothingness from engulfing me.  Clenching down on my forearm as hard as I can is another way to control the tidal wave of stress.  A complete set of teeth marks embedded into my skin might interest those in the field of dentistry, but for most people witnessing, horror probably best describes their response.

Some find self injury baffling, even terrifying and something that must be stopped at all costs, even if this means far more painful interventions inflicted by others than anything I could do to myself.  I see it as a way to care for and acknowledge the overwhelming onslaught of unruly feelings.  This idea is not embraced by “autism experts” who use words like “behaviors”, “defiant”, and “oppositional” to defend the use of isolation rooms, restraints and even electric shocks for people like me.  It seems abuse by others to prevent self injury is permitted, even applauded, though the logic is lost on me.  When my mind is caught in a downward spiral I need calm reassurance.  My frustration often expressed in screaming, repetitive scripts grind down the patience of those witnessing.  My screams threaten their kindness, I know, but I cannot stop once begun and pounding terror is all that remains.  Only the dedicated few talk of love during my episodes of furious stress and suffering.  Their love is rejuvenate and restores my faith in this awkward world.

I am exuberant, overflowing with energy and love music.  I’d rather gallop than walk, bounce than sit quietly.  I’m happiest with high volume, intense beats, jumping, arms flailing, pounding bass, total darkness or bright stage lights and a microphone in hand.  I want people to hear me.  I am as versed in making silly faces as I am in my favorite songs and my neurology.  My mind is lightening fast, hungry, logical.  I’m a seeker, determined, a lover of laughter in a body trying to keep up.  It can’t, but I’ll keep trying.

Showing kindness toward those who are different and embracing our imperfections as proof of our humanness is the remedy for fear.  Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility.  I want my hard won words to give hope and inspire people to change how they think about autism and someone like me.

“What’s your name?” people ask.

My name is Emma.

2015.10.06_Emma_PT_272Photograph: Pete Thompson Photo

A Language I am Fluent in

Gazing hungrily at the docking station that cradles my iPhone, I can already hear in my head the first song I will play.

It is a charge surging through my body.

It’s electric.

It’s stars that shower down.

It is invigorating, a power drink transforming lethargy into intensity.

Pounding beats, it’s Jessie’s Bang Bang, Lily’s Smile, Beyoncé’s Dangerously in Love and the crazy pre-rap rap of the Talking Heads.

It tastes like an explosion of chocolate hazelnut, a glop of Nutella hitting your tongue before you’ve even swallowed.

Understanding the notes is a full body experience.  It’s a world where I can be me, unedited, pure and perfect.

This is a language I am fluent in.

*Emma*

The Joys (and Terror) of Homeschooling

When we began homeschooling I was absolutely terrified.  I didn’t see how I could do it.  I closed my studio.  I set up a space in our home so that I could continue to run my business.  I told myself we would take each day as though it were one small baby step at a time.  I reminded myself when I began to hyperventilate from panic and fear that I just needed to concentrate on today and not the rest of our lives.  When my anxiety felt too difficult to manage I focused on the next moment.  I wrote lists, I purchased an old fashioned day calendar to write out subjects we would cover each day.  And then I sat down with Emma.  I asked her whether she thought homeschooling was a good idea.

Emma typed, “You believe in me and once creating versions of getting the truth, I am able to go far.”

I said, and I’m not exactly proud of my need for reassurance that she understood, but I said it anyway, “You realize it means you will not go back to school, right?”

Emma wrote, “Yes.  Taking my awesome nice teacher named mom what cabaret kind of life awaits me, I can only guess.”  A little later she wrote, “Know that love teaches more than doubt.”

I asked Emma how she wanted to do all of this.

She typed, “make a schedule mapping out lots of topics both written and spoken.”  Then she shocked me by writing, “sometime I want to learn another language, how about german?”

“Wow!  Seriously?” I asked.

“Yes.”

So here we are some eight months in and we are still finding our footing.  Each day is slightly different.  I still rely heavily on that old fashioned calendar where I fill in what we are working on and for how long.  Every morning I ask Emma for her input as to what she wants to learn.  I still, occasionally, feel I’m not doing enough.  I still, though far less frequently, find myself panicking and wondering how we are going to do this.  I still, though rarely, wonder if what we are teaching is enough.  But through out these last eight months, I have never felt so sure of anything we’ve done as this decision to homeschool.

As many of you know I am no stranger to regret.  Homeschooling is not on that list.  In fact, the only regret I have about homeschooling is that we didn’t do this sooner.

We have been blessed with a couple of wonderful family members who volunteer their time via Skype and one non-family member who teaches Emma literacy.  At the moment Emma is ripping through Act 4 of Romeo and Juliet.  Her sessions with K. are a highlight of her week.  K. tirelessly and enthusiastically comes to our home with new ideas of how Emma can make notes on text so that she can later cite parts of the play to back up her answers to questions like:  “At the end of Act 3, Scene 2, Juliet is of two minds about what has happened.  What are some words that demonstrate her split thinking?”

Together K. and Emma are exploring “writing craft” and delving into language, tension, foreshadowing, story arc and character development.  We use Khan Academy, Brain Pop, books, lots and lots of books and the internet to research and learn, as well as Rosetta Stone for German.  I also am using Duolingo to supplement Rosetta Stone for German, but Emma is not yet able to use it as it relies too much on writing.  The beauty of Rosetta Stone is that it relies on pointing to images to match text primarily.  In addition, we have a Graduate Student who comes to work on art and Emma is taking ceramics, swimming/diving, gymnastics and piano and guitar lessons.

We have created a little nook devoted to various materials we use for lessons and while it’s usually in a state of complete disarray, there is some semblance of order, even if only to me and Emma.  The single most essential item other than the keyboard and stand for the iPad in the photograph below is the Timed Timer.  Without it we would be lost.  Emma explained to me that when I forget to put on the timer she is filled with rising panic and anxiety.  She told me that without a visual timer, “time can stand still, while anxiety pushes all out of its way.”  We now own three different sizes of the Timed Timer, though Emma’s preference is the largest one they have, twelve inches, for our home sessions.

A nook of one's own...

A nook of one’s own…

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

The Seduction of “Recovery”

Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of “recovery.” There were a multitude of different diets, the gluten-free/casein free diet and the GAPS diet, that some said had “recovered” their child, making them indistinguishable from their peers.  There were the bio-med treatments ranging from daily B-12 shots, hyperbaric chambers, ointments applied topically, vitamin supplements, chelation, homeopathic and naturopathic remedies to stem cell treatments.  There were the therapies that made up the center piece of books claiming full recovery and the many doctors and specialists who supported them.

In the beginning we were terrified.  I still remember that feeling.  The nights of not being able to sleep, staring at the ceiling and worrying only to finally slip into a semi-conscious state of fitful sleep.  The next morning, there were often those first 60 seconds upon waking when I’d forget the worries that had kept me up. Then reality would come rushing back and it was like being thrown into a bottomless pit of worry, stress and terror.   The fear was relentless and was fueled by just about everyone we came into contact with.  Our child was far too young to have predictions made about her future, and yet people made them and all of them except those stories of “recovery” threw me into further fear.

People compared her neurology to cancer or Parkinson’s and likened the various therapies and treatments to chemo; a necessary horror that no one enjoyed, but that must be done.   And I believed them.  I had to save my child.  I would do anything to save my child.  Various things were deemed more acceptable than others, but dig deep enough and you can find any number of people, doctors and specialists who swear by whatever it is they believe will transform a child who does not speak, who seems so frustrated and unhappy into a speaking child who is no longer in pain.  Had this not been the case, had they not claimed complete “recovery” we would not have subjected our child to any of it, but instead, we tried all of them.

So much of what we were told seemed to coincide with what we were seeing.  My daughter could not use spoken language to speak.  She seemed to be in almost constant internal discomfort.  She cried, gut wrenching screams of pain, regularly.  Her sleep was erratic, her behavior confounding, her distress with things I couldn’t understand seemed constant, her inability to communicate what was going on made it all the more confusing.  So many of the professionals we took our daughter to seemed convinced that their treatment or remedy or whatever it was would be the thing that changed everything.  I desperately wanted her to not be in pain.  I desperately wanted her to be able to communicate.  I wanted nothing more than to ease her frustration.  For years I never thought – perhaps everyone is thinking about all of this wrong.

So on one hand we were introduced to autism as a horrible thing, but that there were people and things that could “treat” it and if we were lucky she could “recover” and on the other hand we were told no one knew what caused it and there was no cure. It is this, seemingly two opposing thoughts, that many parents are introduced to.  It is no wonder so many choose to believe the former and not the later, even when, in doing so, we head into a labyrinth from which there is no end.  The third idea, that this is a different type of neurology and to compare Autistic neurology with non autistic neurology is detrimental to all involved and to suggest that one neurology can be trained to become a different one is not only an unachievable goal, but an unworthy one, was not introduced to us until much later.

There is nothing quite so awful as to see your child through the lens of those who are seeing nothing but deficiencies, challenges and problems.  Assumptions are made about intelligence based on tests used for a different neurology.   I often wonder what we would have done had we been introduced to Autistic people who didn’t use spoken language, but who typed to communicate.  Would we have been so frantic?  I don’t know.  What I do know is that rethinking everything we once believed, refusing to submit to the idea that autism is the source of all that is wrong, seeing how non autistic neurology has its own set of deficits and challenges, and finding a way for our daughter to communicate has changed everything.  If we spent even a small percentage of the money currently being spent on autism and autism research, on finding better ways to support our non-speaking kids so that they too could communicate using stencil boards, letter boards and typing keyboards, at least some of the panic many parents feel would subside.

2005

2005

Alone? Frightened? Worried?

“No one knows how to help us.”  This was what I once said to my husband.  It was many years ago.  So many, I no longer remember the year.  Along with that realization was this one – “We are in this alone.”  And while, at the time, that thought terrified me, it was the beginning of finding another way.  It was the moment when I realized all these people we were looking to for guidance, didn’t know what was best for our daughter, even when they believed they did.

In the beginning we were told how fortunate we were, our daughter was “mild” we were told and if we followed their advice – an aggressive implementation of ABA, Speech Therapy and Occupational Therapy – she would be in a regular classroom by the time she entered kindergarten.  She was still two years old when she was diagnosed and we knew nothing about autism.  We did as we were told.  We were assured she would “skyrocket.”  We fought to increase the hours of therapy, we went to the team meetings, we took notes, we learned how to “play” with her using ABA’s techniques, we monitored her and kept charts.  We filled notebooks with our observations and we waited for her to “skyrocket.”

When she turned three we enrolled her in an ABA based pre-school.  By the end of that school year I no longer believed all that I was being told.  The therapists were no longer assuring us she would “skyrocket.”  Now words like “red flag” were being used to describe her behavior.  She had “behaviors” and these were being pinpointed and noted with alarming frequency.  We were getting reports of non-compliance, an inability to “use her words” as though she was being defiant  and then she began to self-injure. No one understood why.  Everyone was baffled.

And now, so many years later, I look back on those years and it all seems so understandable.  They say hind sight is 20/20, that looking back we can easily understand that which was once incomprehensible.  I understand now.  We didn’t appreciate what was going on.  We didn’t think we understood our child, and for the most part we didn’t and we kept looking to others to explain her to us.  The explanations they gave us, we believed.  We thought, since we didn’t understand and they seemed sure that they did, they must be right.  It took several more years for me to realize they didn’t and they didn’t know how to help us or her either.  When the methods they believed in didn’t do what they believed should and would happen, they blamed us and they blamed her.

Emma continues to remind me that “regret is not needed” and she’s right.  I am working hard on that one.  I cannot describe someone else’s experience, I can only write about mine.  This was mine.  As the mother of a daughter who was once believed “mild” and later “moderate” and finally “moderate to severe” on autism’s vast spectrum, we have learned a great deal.  And while many may not derive any solace in what I’m about to say, I would have.  No one can predict what life holds for your two, three, four, five, six or seven-year old child.  No one can predict another’s future, there are too many variables.

That my daughter has some spoken language is, and was, the single biggest red herring for those who meet her.  It never occurred to us that all that speech therapy, focusing on spoken language, would ultimately be unhelpful.  I knew nothing of AAC  (Augmentative and Alternative Communication) devices or methods and as spoken language seemed to me to be the ideal, the idea of her using something else honestly never crossed my mind.  Why would I encourage her to use something else to communicate if she could speak?  When, after years of speech therapy focusing on spoken language, she still couldn’t have a conversation with us, our answer was to try more, push harder and it would come.

So many people ask what we would have done, knowing all we know now.  This is a question that is specific to my daughter, but I know there are other children who are similar as I’ve met so many of them.  I would not have waited so long to begin using other forms of communication.  In fact, this would have been the thing I would have concentrated on right away.  There is no evidence that using an AAC device will have a negative effect on spoken language acquisition, in fact there are studies showing the opposite is likely to be true.  Had my daughter been able to communicate at an earlier age, many things would have changed.  The most important one being that we would have understood much earlier all that she knew and understood.  This may strike some as a little thing, but I can assure you, had we realized this early on, had we believed this right away, it would have changed every single decision we then made.  Not to mention the massive reduction in our stress, anxiety and fear.

There is so much we are learning and still have to learn, but we are no longer alone.  We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter.  And of course, our daughter, Emma whose patience, love, wisdom and endless compassion is teaching us more than any.

 

One year after the diagnosis

One year after the diagnosis

Presuming Competence – Revised

Over the past few years I’ve written about presuming competence as I have come to understand it, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  Over the years my definition continues to shift or, perhaps more accurately I should say, my ability to practice presuming competence continues to shift.  I still grapple with whether I am going far enough when I  presume competence, though the simplest definition, is also the best one, which is that we presume all human beings are capable of learning if given the right supports and accommodations.  But many want to know what that means for a specific person they know or are working with.  What are those supports and accommodations?

There are a couple of universal things I have found extremely helpful.  (I’m hoping others will add what they’ve found universally helpful as well as specifics that may be particular to just one or two.)  The first is being respectful of the person and speaking to them as one would speak to any human being regardless of whether they use spoken language or not.  It may take some getting used to, because unlike someone who uses spoken language easily, you may not get a spoken reply, or you may get a spoken response that you cannot make sense of.  Either way, I have found, speaking to my daughter (and I’m now talking about before we knew all that she knows and before she was typing with us) as I would any person her age, was critical.  Explaining to her what was going on, what was going to happen next, what we would do if something we expected to happen didn’t, and including her in any and all conversations that were taking place in her presence, has been key.

In situations where a meeting is occurring, as might happen during an IEP meeting at school or with a team of therapists or with a doctor and nurse, I have found the single best thing I can do is include her in the conversation.  (I have made many mistakes over the years, so please do not interpret this as my suggesting I do all of this perfectly without ever stumbling along the way.)  So, for example, when we arrive at the place we are having the meeting, I will speak to her as I would anyone her age.  I will ask if she’s comfortable in a particular chair or if she’d prefer sitting in a different one, perhaps away from direct light, or one that might have a cushion.  Today I always sit to her right so that I can hold her keyboard for her as she types.  I make sure she knows why we are all gathered.

If others begin to speak about her (as they almost always do and will) I will then politely remind them that she is right here and has no issues with her hearing.  Emma wrote during one such meeting, “My hearing is excellent.”  These days I hold the keyboard for her to write questions she may have or to add whatever she might like.  As Emma now types with us daily and is more used to this, she will often initiate a question or comment without me asking her if she wants to add something.   But in the past, if the people at the meeting continued to speak about her as though she weren’t present or seemed completely confused by my insistence on including her, (which many undoubtedly will)  I might then say something about how hurtful and disrespectful it is to be spoken of in this way and that I’d appreciate it if they would rephrase their language.

If the talk becomes an endless list of deficits I would ask them to identify her many talents and assets and point out that constant criticism is unhelpful and destroys self-confidence and self-esteem.  If they are silent (as has happened to us in the past) and seem incapable of naming any assets, I would give them a few opportunities to learn and do better, but at a certain point, professionals should be held accountable for what they are doing and how they are behaving.  If after several opportunities, they continue to disregard my daughter and seem incapable of treating her with respect and seem convinced that she cannot understand, they do not deserve to be paid for their “services”.

Another helpful tool is a yes/no laminated card.  I used to carry one or several around with me and would ask Emma to verify any yes or no question, because she often says “yes,” but means “no”.  I found that what she pointed to with the laminated card, was almost always correct, while the spoken answer wasn’t as much.  I have since seen iPhone and iPad apps that people use, which are almost exactly the same as the laminated card I once used.  A friend of mine holds up her index fingers from each hand and says, “yes” and gestures with the one index finger, or “no” and then gestures with the other index finger.  I remember being shocked that this simple method could produce accurate answers and yet it did.  Obviously if there are profound physical issues, this may not be possible, so the laminated card might work better as one can position it so that a large range of physical movement will not be required.

Yes/No

Yes/No

 

“Music is Language of the Soul”

A friend of ours sent us a link to a short piece about stuttering and singing as something that has proven helpful for some.  After Emma and I read the piece I asked Emma what she thought.  Emma wrote, “Singing is the only time words come easily.”

When Emma was very young many of her therapists would sing various songs to her, but usually repeated the same ones, “Head, shoulders, knees and toes” and “The wheels on the bus” being the two that feature most prominently in my memory of that period.  I was curious about Emma’s memory about those songs and so asked her.

“The mistake people made was in not using music more.  Music was more beneficial than anything else,” Emma wrote.

“Even though you couldn’t articulate the few words you spoke back then, I’m talking about when you were just two and three years old, you loved singing and sang a lot.  Did you understand the meaning of the words of the songs you would sing?” I asked.

Emma wrote, “Yes.”

Did you purposefully choose songs that communicated what you were feeling?

“Music conveyed my feelings more than anything else.  I might feel something that no words can describe.  Music is the language of the soul,” Emma wrote.

Yesterday Richard, Emma and I were discussing consciousness, thinking and different ways of communicating our thoughts.  Emma wrote, “Can you think about how I sense the world and then try not to use words?  My pacifist’s stance is the only way.  Fighting requires words, pacifism does not.”

Richard then asked, “Are you saying that from your perspective you see all intelligence as being linked and one, and we, who use words, fight because we cannot see and understand this?”

Emma wrote, “You are trying to define knowledge and intelligence with inadequate words.  Intelligence is not word based.  Music and words used in song come closest.”

Summer - 2009

Summer – 2009

 

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!”

 

Using Words to Describe What Cannot Be

This morning, in answer to the question, “What shall we talk about?” Emma wrote:

Today I am going to talk about using words to describe things that cannot be described.

How can it be done?

It is the poet’s attempts that come closest, but even then, much is left to the reader’s interpretation.

Poetry becomes an interactive experience then, with the poet having to cede all control of words created.

Real creating asks question of all.  The answers are unknowing.

From Ariane:  Last night I dreamt I could not speak.  I was at the airport, leaving for the Far East and realized I had left my passport at home.  I kept reminding myself this was a dream and that I could recreate the story line.   I didn’t have to stay in the feelings of intense anxiety the dream was provoking.  I could speak if I could just change the dream. I didn’t have to follow the dream’s labyrinth.  Straining against all logic, I tried to fly, literally, back home, but kept being pulled back into heavy traffic and the anxiety of knowing I would never make it home and back to the airport in time for my flight.  Not being able to use my voice to tell the cab driver where I needed to go, without pen or paper to write, I felt intense frustration and then rage.

Knowing I would miss the flight, knowing my family was at the airport waiting for me, and the nagging, ongoing critique of how foolish I was to have forgotten such an essential document as my passport made me finally wake up.  It was one of those dreams where you are so horrified by it, waking at three in the morning becomes the more attractive choice, superseding the desire to continue sleeping and the knowledge of the inevitable consequences of waking at such an early hour.

Those feelings, like so many incessant and blaring alarms, jangle the nerves, and linger long after sleep has yielded to wakefulness.  And then Emma wrote the above and I was reminded, once again, of how often words fail us.  How often things said are misinterpreted, or said in ways not meant, or how even for those of us fluent in spoken language, words can become a kind of cage from which we cannot and do not easily escape.

Richard has been editing the video of our presentation.  Hoping to post it over the weekend or on Monday…

Emma chose this image after typing in "words" into Google search

Emma chose this image after typing “words” into Google search

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.

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

 

“Let’s Talk About Communication Abilities”

*As always Emma gave me permission to post this.  Emma typed her words by independently pointing to the letters on a bluetooth qwerty keyboard attached to her iPad.

This morning I asked Emma what she wanted to talk about.  She wrote, “How about we talk about communication abilities.”

A:  “Okay, that’s a great idea!”

E:  “Especially for someone like me.”

A:  “Yes, tell me more.”

E:  I am able to communicate really well with words, but people don’t expect me to, so when they see me typing, they eagerly watch, but they don’t listen to what I write as much as they listen to the words tumbling from my mouth.”

A:  “I think that’s such an amazing observation!”

E:  “Know that believing in someone’s ability will be greeted with inward smiles, so you must never give the doubts breathing space.”

We talked about “ability” and the power of believing in both oneself and another versus doubting.

E:  “Many insist on finding proof, but when sitting with someone like me they only see the things I do that confirm what they already believe and turn their backs on all that would prove them wrong.”

A:  “Is there anything or anyone specific you’re referring to?”

E: “It is what I have experienced, sadly.”

I told Emma how sorry I was.  We talked about this more and then I said, “I think your words really do affect many people who are listening and as a result are changing how they see their child.  Even if only a few people listen, it’s worth repeating, don’t you think?

E:  “Some that change their views, teach others well.”

A:  Yes, I think so too.  Many people have reached out to us on Facebook and on the blog to tell us.  It’s always so wonderful when we hear from them.

E:  “Now we must remain patient and doggedly trudge ahead.”

I told Emma, she was leading the way and I would always follow.

E:  “Together we will eagerly tether our ideas, so having happy thoughts will woo anger.”

Ariane and Em ~ May 2014

Ariane and Emma ~ May 2014

Emma’s Take on “The Tyger”

The other day Emma chose to read and discuss William Blake’s poem “The Tyger” for one of our two sessions.  A brief aside:  When I was in graduate school, one of my favorite classes  was on Virginia Woolf’s A Room of One’s Own.  As I remember it, we spent a week discussing a single paragraph.  To me, this was bliss.  Are you familiar with Virginia Woolf?  A goddess of women writers.  A writer of imperfect perfection, truth, honesty, despair, joy and suffering, that tumultuous roiling, spilling of words on the page evoking sadness, confusion and ecstasy all at the same time, this was what I felt as I read Virginia Woolf for the first time.

But the other day, instead of pulling out my old copy of Virginia Woolf’s A Room of One’s Own, I thought of poetry and grappled with which poet and which poem?  Should we read Yeats, Wordsworth, Baudelaire or Keats?  But then, for some reason I decided on William Blake’s The Tyger:

“Tyger Tyger, burning bright,
In the forest of the night;
What immortal hand or eye,
Could frame thy fearful symmetry?”

After we’d read the entire poem to its end I asked Emma what she thought.  Emma wrote, “Beautiful illustration of torn ideas.  Rabid wondering regarding innocence and the result of omnipotence.”

Wow.

Seriously.

Wow.

This was her response after reading it through one time.  No discussion.  Nothing from me about meaning or interpretation.  Nothing.  This was Emma’s take away, having been given nothing else.

I then asked her what role if any evil played in the poem.  Emma wrote, “I am thinking evil is understood as being the tiger.”

“I agree,” I said, “What do you think about using the tiger to describe evil?”

Emma wrote, “The worst evil is the kind that is camouflaged as something else…  like an innocent lamb.”

The second to last stanza is:

“When the stars threw down their spears
And water’d heaven with their tears:
Did he smile his work to see?
Did he who made the Lamb make thee?”

Emma then wrote, “… maybe god understands what it’s like to be misunderstood.”

Emma ~ May 2014

Emma ~ May 2014