Tag Archives: spoken language

The Fan Stays Off

Seeds there

Virulent shoots hamper process

ingrates they throw everything into chaos,

disruptive and noisy I shout the same thought

weeding out the bad from the stillness.

Whispering calm directives – keep it cool, Emma –

but the thrashing divas hold the spotlight and won’t exit without a fight.

 

Timing is crucial.

Nobody can help bring order to the bothersome braying

that brutish tyrant who won’t allow others the time or space.

Patience is needed.

I am here

sometimes insistently so

but there is so much more to discover.

Loud-noise

Beep. Leave a Message

Beep.

Waiting for a message that cannot find its way

from brain to muscles

that connect to sounds we know to be

recognizable words with understood context.

They elude, slipping and sliding

they have no legs

slithering in the muck of misunderstanding

those words that manage to escape from my mouth are heard,

but baffle.

 

Battling it out for recognition are the silent thoughts that are not

“you need to take a turn to share

“you have to wait our turn

“you want to go fast?

“you have to share”

Words, words and more words.

She has language they say, but the language she shouts is not a language at all

buffering frustration, relieving anxiety, clouding meaning

I’d whisper if I could

but I can’t.

comment-512

Hindering Progress

Digging through ghostly shards

pummeling the words that shout from within

understanding too much,

the vice grip of constant anxiety

offers the spoken words access that no one can fully know.

 

I fight to voice what I mean,

but “Mindy” and “Rebecca” crash through

and grab the microphone from my hand

that finds tenuous comfort in the string

I wrap around and around like a carousel.

August, 2014

August, 2014

I am More Than My Body

Wavering, derelict shouts hold different ideas about want.

Careening words push and shove their way out of my mouth,

the chatter cannot be reined in no matter how hard I try.

My mind is a starving questioner

with a body that pushes mute buttons in people’s minds.

Moments looking for connections to the two separate entities

knowing the possibilities are within reach,

if only I could beat those troublesome, noisy words back

to give the more contemplative thoughts equal opportunity.

Contemplative

Autism ≠ Developmental Delay

There were few things that led us more astray than the idea of autism being a developmental delay.  Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan.  (This post is not about Stanley Greenspan or his method.  His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal.  The private hell of regret is a cruel place to linger.  Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.”   In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell.  Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood.  Because people assumed  she spoke what she intended and meant, she was penalized for the words she managed to utter.  “Do you want to go fast or slow?”  “Do you want to stop or go?”  “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions.  We assume she has no interest in engaging.  We assume she doesn’t want to spend time with us.  We assume she is “in her own world.”  We make assumptions and we behave according to those mistaken beliefs.  We believed each word was a milestone, paving the way for more language acquisition.  We believed it made sense.  Lay the foundation, create a strong base of words for more to follow…  Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed.  This idea of a developmental delay bled into every single aspect of her being.  It was believed that her speech was delayed, as were her fine and gross motor skills.  Therapies were structured around this concept.  All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six?  At the time we didn’t question any of this.  Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know.  We listened to the many professionals we consulted.  Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter.  It never once occurred to me that maybe, just maybe what she said was not what she intended to say.  It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider.  We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma.  Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing.  Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Emma’s Presentation

Tomorrow’s Presentation

“Rethinking Your Beliefs About Autism”

When the Body Does not Obey the Mind

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004.  The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between.  It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else.  One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

Cynthia Kim, author of Nerdy, Shy and Socially Inappropriate ,  I Think I Might be Autistic, the blog Musings of An Aspie and owner of StimTastic said, “That waiting to catch up feeling is so insidious and one that I subconsciously lived with for a long time.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal).  It meant pursuing all kinds of therapies that never questioned the push for spoken language.  It meant not considering AAC devices, because she “had language.”  It meant encouraging my daughter to “use your words.”  It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught.  It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot.  Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it.  My daughter amazes me every, single day.  As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

Emma - 2006

Emma – 2006

Typing to Communicate & Busy Work

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

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

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

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

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

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

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

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

Typing To Communicate

Typing To Communicate

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

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

Sensing Another

Last week I wrote a post, Speaking vs Typing, which sparked a terrific discussion about language, communication and how we interpret what others say and do.  My friend Barb, who wrote (with Lois Prislovsky) the not-to-be-missed book, I might be you commented:

“my dear neurotypical friends, first, let me say i love that you all are putting your heads together to break down this truth into practical ideas to help me and my autistic peers who struggle mightily with spoken language communications. em is right, “language is an awkward way to communicate” and i argue that is true for everyone but highly challenging for those of us who are autistically wired in the “vanilla cake” or “mail truck” way that em and i are. it took me years to think in language. but prior to that my thinking was not faulty it was just not language based. thinking in language is not efficient for me. i wish i could give you a pretty little fact package about what works so folk like me could get such treatment and soar socially and academically. of course, the problem is…it is hard to say in language. typing makes it way easier, because i can control the speed of each thought and break it down to smaller parts to be better described by letters one peck at a time. speaking requires a rather unnatural process for me perhaps like you singing a song you heard in another language. u may be able to imitate the sounds but the meaning in each mimic is not precise. since most folk are not yet well practiced in telepathy the best way for me now is to communicate through typing. but still my thinking is not easily translated in to words. feelings, sensations, visions and perceptions that are cleanly processed in my mind dont fit well into letter symbols. there i said it – or something close. thanks for caring. trying b”

Barb’s comment made me wonder whether my daughter is able to “hear” my thoughts, even if just a little.  And that if she were able to, it would make sense that either typing or speaking would feel like an inferior, less efficient form of communication, perhaps it would be viewed as somewhat barbaric, and certainly a less sophisticated way of communicating.  So I asked her, “Can you hear my thoughts?”  To which she answered, “No.”  Not undone, I asked, “Do you feel them?”  To which she did not reply.  This post is not about mental telepathy, but is more about how we sense each other.  Some of our senses we are taught to fine-tune and others society either doesn’t recognize or doesn’t place as much importance on.

But what if we lived in a culture that did encourage sensing another’s presence and feelings?  What if, from the time we were born, our sense of other people’s state of mind, their feelings, was nurtured.  Would that change how we communicated with each other?  What if spoken language took a back seat to our intuition?  What if we lived in a society that placed more importance on our presence, than on our words?

All of this reminded me of a conversation I had with a couple of friends, both of whom are Autistic, about disability and society’s role.  I wrote a post about that, ‘here‘.  One friend said that if we lived in a world where everyone used a variety of alternate forms of communication, where a longer time period was allowed and expected between words, and supports were anticipated and provided, then people who do not speak would not be considered disabled, just as I am not considered disabled because I cannot juggle or jump as high as an Olympic high jumper.

If children were taught at an early age to sense each other without relying on language, would we evolve into a species where language was viewed as unreliable and untrustworthy?  Does my daughter view language as a lesser form of communication?  Is she not as motivated to communicate, either through typing or verbally because her other senses are more finely tuned?  Does motivation even enter into all of this?  My brain is constantly looking for intent, motivation, but what if this isn’t what’s going on at all?  What if this has nothing to do with any of that?  What if she is trying so hard to communicate by typing and speaking because she understands I want her to, but not because she has the same need that I have?  Does music call to her because it is less about the lyrics and more about the beauty of the music, the feelings the music evokes?

Is all of this way too esoteric and ethereal?  EmTypes ICI