Thursday, December 5, 2013


This is the most spectacular thing I have ever heard! The webpage is here: I've never enjoyed anything quite so much in my life. I love dichotomy, the unexpected, and that oil can cello sounds pretty darn good! They said the quality of the trash instruments was better than those cheap ones imported from China for those who could afford them. Just fascinating. Maybe the people we consider junk are God's beautiful instruments. This is just so rich.

(Prelude to Bach's Cello Suite No. 1  was Bebi's performance.  I like it better than Yoyo Ma's, although they are both very beautiful!)

Monday, November 11, 2013

The Joy of Ben (Mrs. C close your eyes!)

So...we are going to KFC to pick up dinner.  I've been guarding a friends blog, and all we had was yucky leftovers.

Last time I rode with Ben driving, I nearly had a heart attack.  I swear, he was 5 feet behind the car in front of him going 60 miles an hour. I started screaming and crying hysterically, flailing my arms.  Well, maybe I just spoke up quite loudly--

"Get back, get back, get back, get back, GET BACK!!!!

He hasn't asked me along since.  Ingrate.  Who do you think taught him to drive?  All the hours,  this is the thanks I get.

"You're riding in the back seat.  I don't care what you say..."
"You aren't telling me how to drive.  You make me nervous."

We take off, headed towards the fast food joint.  I have to give directions.  It seems like he is going awfully fast to me...

I notice the trees along the creek on the way.  They are deciduous leaves and are turning. (Fall has finally arrived here in the South.)  They were so tall and thin when green, I had always thought they were pines.

"Look at those trees.  I think they might be birches." (Me)
"No they aren't, they're pines."
"No they are deciduous, they are losing their leaves."
"You are losing your leaves."
"No, I'm not. You are being a pine in the rear."
"Don't be such a birch".
"You can be so deciduous." (Me, kind of at a loss for trees.)
"Oh, go ficus yourself".
I am a little annoyed, but I laugh.  I know he didn't mean it. Because, if he did, he's getting his mouth washed out with soap. And I'm telling Grandma.

You see what happened there?  We NEVER talk.  We only banter.

When Ben was young, he had a "semantic-pragmatic disorder".  Which meant, he didn't learn to talk the way most kids do.  I used to cry and cry, afraid he would lose what little communication skills he had, that he would "regress".  Ben has no good memories of me when I was in the worry mode.  I worried even though my family told me there was "nothing wrong with Ben."  I thought I knew better.

I asked him, although he hates to talk about it.

"When did I change?  When did I quit worrying?"
"I don't want to talk about it, Ma..."
"No, really Ben.  I want to know if you can remember that I changed."
"It was sometime when we lived in Columbia." referring to a time between his age 7 and 12.

 I KNOW when it was.  It was 5th grade.  He was 10 years old.   He had a teacher who actually wanted him in his class.  She asked for him.

"I had a lot of trouble in 5th grade.  I used to have so much trouble with homework." she tells me.  It's the closest she ever came to telling me that she was Dyslexic, too.  Her last name was Hunt. God, knowing how easily distracted I am, slapped me up the side of the head  and used a foghorn with her name being the same as my mentor and Ben's Godmother.

Sunday, November 10, 2013

ABA ...your story.

I don't want to know your defense of ABA.  I want to know your story, and why you think it works.  I was a practitioner for 7 months at a residential school based on ABA tenents.  I know your trials.  I know 90% of the teachers were beautiful effective behavior managers, very kind and loving and always having the kids best interests at heart.  I know many of the kids were placed there because they couldn't go to their home schools, they were too severely impacted to take part in a typical school system.  Some kids lived there because their parents were unable to handle their behaviors at home.

My complaint, and I do have the lack of free will afforded to the children.  Skinner did not believe in it.   I could have chosen to use ABA methods on my son, and in a way I did.  But the difference between what I did for my child is, he always had a CHOICE.

Saturday, November 9, 2013

The Elephant in the Playroom.. Impacting the Bottom Line by RW.

I'm taking a chance here, I won't be sued. If they are that evil, @#$% it, have at me. They won't get much. I am the author of the article.  I signed something, but I don't remember what it said.  I believe in God, I believe in serendipity, and right after I had success with this "behavior therapy" (AKA, "parenting")for my son , I wrote up the article, and it was accepted for publication.  Maybe I helped one other person through it. I don't want to's not my intention to brag or put any jewel in my crown.

I just want to let you know what worked for me.  Since I implemented the plan, I have never gone back.  I have never gotten really upset at my son like I used to every day, except for the time he goofed around and nearly flunked out a semester at a tech college he attends.  That time, I nailed his hide to the wall and made him complete a month of work in a few days, and charged him $100 for being his secretary.  He passed, AND did well enough to keep his scholarship and a 3.0 grade average.  I'm not kidding.  I figured it was time to let the old anger rise up.  And that's what it was, old anger, although I felt it was righteous.  We can't stay angry at our kids for little crap and raise them.  ABA seems like it's always getting mad at little crap.  Like...if you let 'em get by with an inch, they'll take a mile.  I feel like if you give them a mile, they won't want to give up an inch.  But then again, I'm nuts. On the other hand, it WORKED! I think most parents learn this in time.  I remember Dad saying, "There's no need to punish you.  You're punishing yourself enough already."  He was a bartender.  Wouldn't think he'd be that wise...

Who, when their child asks for a fish, would give them a stone? Give your children everything you can, but let them know it is earned.  Life kind of works that way.  You are paid for what you do, not just for existing.  Sometimes the pay is money, sometimes the reward is far more spiritual.  I'm one of those goofy, Dore parents...I take this more seriously than my own life.  That's why I have so much fun.

It takes a long time to load but it was scanned and would turn out real fuzzy otherwise. You can click on the pages to enlarge them.

Sunday, November 3, 2013

Hey, Miss Emily...Another Crazy Diatribe from Rose

Above is a paper Ben completed for an English course at the tech college he attends.  Although it's pretty good and shows the depth of my little "quiet man", I think you have to notice the brevity he has always had with ideas; he has always gotten to the point because of the mental and physical demands of writing. There are mistakes that the teacher did not draw attention to.  She graded on what he had to say, not perfection.  This is an important point.

Okay, so I read the write-up by Gerald Grow you introduced me to here:  

He had only critique, no answers.  He took the information he had gathered and put it together in a rather wordy treatise. Obviously, words come easily to him.  Am I being flippant? I was pleased to see Dr. Silverman covered.  But dear, I am old and tired and I have no energy for that.  I could never read "experts" opinions of anything for Ben.  I had to have it from the horses mouth.  I had to know ideas that worked.

I've looked all morning for a story Ben dictated to me when he was 8 years old.  The paragraph above is very typical in it's brevity to what Ben would do in school. Below is a  true conversation we had one time he was doing his homework, writing a paragraph:

"Mom, what is the least amount of letters you can use to make a word?"
"Ben, they are usually at least 3 letters, maybe more."
"Mom, how many words in a sentence?"
"Ben, you've got to use at least 3 words in each sentence, try to have at least 5."
"Okay Mom, how many sentences in a paragraph?"
"Ben...why don't you write what you've want to say?  Three...there are at least 3 sentences in a paragraph."

And he would count them out and write a simple paragraph with as few, short words as possible.  EVERY TIME!

BUT, when he was 8 years old, I read about a mother who had her child dictate stories to her.  And I tried it with Ben.  It was 5 pages long, he told me where to capitalize, where each comma and period went, things that he was incapable of attending to when he wrote it out himself. It was very complex; very descriptive; very, very beyond his years.  It was a beautiful story about a magic egg. (I've built it up so much maybe it's better I can't find it...ha!) Ben just told me he wouldn't have given permission anyhow, it's embarrassing to him what he did as a child. His childhood is a source of pain to him. 

Sometimes, teachers can't see the burden they put on little shoulders.  Output is so difficult for some kids.  But it doesn't mean it isn't up there. Rather than trying to make the visual learner perform as a non-visual or typical learner, WHY, for the love of God, don't they give them accommodations that allow them the same success in school as the smarmy, left-brained troglodytes? Did I say that out loud? It's for the love of Ben.  I adore him. No test, no theory, no compartmentalizing experiment or maladaptive "teaching" process covers the beauty, the complexity that is Ben.

P.S.--I was one of the smarmy ones.

Now, from discussion with Dyslexics, who are 20% of the population and who I theorize are part of the hidden horde of autistics yet to be discovered once they start building up the "co-morbidities"....they are visual learners. And to a person school is a distant memory of torture. To give credence to their way of thinking would "not be fair to the other students".  Who said being forced to attend school without reward is fair?

When I was in the classroom, I could almost tell you who would have trouble, who was the outlier by their handwriting. I'm telling you our story and Ben's excuse. Typing helps, but still...what every visual learner needs is a secretary.  I've always told Ben that. Mr. Gage may want to help, but simply trying to understand the visual mind is only a curiosity.  There is no meat on them thar bones.

Thank God the architects, the artists, the writers, the poets, the dancers, the inventors, the actors, the dreamers, the crazy ones who didn't fit the mold weren't helped into being "normal". Those that don't think linearly, or sequentially or how they "should".

P.P.S.--Ben may have been concise, with errors, but what he said was perfect.

P.P.P.S.--this isn't the blog entry I started out to write.  I took what Dr. Grow very seriously the first time I read it.  Like it was "truth" about my son.  But somehow a deeper truth came out.  I'm sorry...

Okay, here I go...I have Grows work to my right.  I will go down the line of table one.
1.  Oh, God, I just can't.  This is too much.  I can't look that deeply into Ben.  I see the GESTALT of him, not the incremental "disabilities".  Forget this idea. I want to smack him, Grow, though.  He's like the dude that screams, "You misspelled 'the'..." He's going at it from the lack. I walked out of a parents meeting where the OT had 3 pages of things Ben couldn't do, and I didn't go back for a year.  You've got to realize, parent's of kids love their kids, and don't like to hear only what is wrong. What a nasty man.

Starting all over again, I know there was something rich here. Because this is a consensus of all the "visualists" Grow knew, I will break it down into people I know and have spoken with to understand Ben.

LACK of WORDS: Ben doesn't have this.  Ben is reticent to talk for some reason, but not this. He used to speak more haltingly, but he always found the word. I have an artist friend, whom I've never heard speak, who refuses to speak in public.  He says people think he is dull because he can't find the words.  A picture tells a thousand words, you know (simultaneously perceived, as Vgotsky notes).  It's not just an expression.
He says his art speaks for him.  He "talks" to me a lot online, and I love his stories.  He says writing gives him
a chance to think it over and find the right words.  He was diagnosed as Dyslexic.  He just thought he was stupid.

ABSENCE of ANALYSIS. The root of analysis is ANAL, isn't it?  Enough said. Oops, also, words used with socially shared meaning.  Sounds like Autism, eh?  Ben is the quiet man. He listens.  A lot of socialability is the ability to use your words to coerce others into doing what you want, king of the mountain games.  If thought is pure, why does it have to be shared? It has it's own merits. Nirvana is not a collective state, but an individual one.

WORDS AS LABELS OF UNSEEN PICTURES: ?Brevity? Think of autistics with severe communication problems.  They may use a word in a totally novel sense, because they "see" what it is they want, and for some reason equate those words to it.  Ben and I seldom have "conversations" of more than a few words, but we often play act out using similar scripts we find amusing, Drama-less Drama.

FEAR OF WORDS: The left brain is full of words.Words do separate.  The right brain is full of simply being one with the universe.  Visualists don't fear words, they don't use them to think. Analysis is the opposite of Intuition. And as far as I can tell, analysis has not given science any great advantage over art. Seeing IS forgetting the name of the the thing one sees!!! That is exactly what the intuit, the artist sees.  It is what the dreamer sees. And much of science has not come from grinding analytical thought into mush in order to find the secrets of the universe by straining through them, but from dreams, and ideas---the most perfect scientist being an artist, who observed without words. Leonardo Da Vinci saw the future, not the next step, but many steps.He did not theorize, he observed in detail, like the visualist running sand through his fingers.

STACKING, PACKING AND ENFOLDING WORDS.-- Literalists ("this is exactly what I mean to say") versus allowing interpretations ("make of it what you will".) My dyslexic artist friend will NEVER tell the meaning of his work to me.  He would prefer each individual interprets it for himself.  His meaning isn't importent. Ben has no desire to share his ideas, but to continue to work on them in his mind until he has the whole of it, at which time he will present it..

DIFFICULTY WITH DESCRIPTION: Look at Ben's work.  He does not dramatize, it isn't a game to coerce others with his ideas.  His sole purpose is to cut to the chase, to tell it like it is, not to convince you of anything.. My artist friend sends many, many pictures...with little "telling". Why describe when the truth is right there, unencumbered with manipulative language.  Why describe pictures to someone?  There is an essence there to behold without the "telling of what to think"---also known as "education".  (Sensory, independent interpretation shared instead of literal facts.) Sometimes a few word  tell it all, when more only serve to coerce or confuse. What is expository writing but selling your ideas? An autist, an artist, a visualist does not sell his words, but his ideas.  A person with autism must contantly be coerced into worlds of words that have no meaning to him. Life is to be experienced, not described.  The true meaning is lost in the description.

PROBLEMS OF WRITING IN SEQUENCE:  Ben, Native Americans, autists, artists, Adhd kids....all must visualize time in order to understand it.  Look up the visual clock, used with many LD kids so they know that "get this done in 15 minutes" has meaning to them. Ben never had a sense of time in that he would so easily traipse off to "lala land" as Dr Jill Nolte-Taylor described her descent into her right brain when an embolism destroyed her ability to use her left brain. Time is a construct without meaning unless visualized.  If you have no sense of time, you have no sense of sequence. Right brain thought is not linear, as a sequence, but associative. Dyslexics often lack the ability to sequence, as a student I had did.

DIFFICULTY WITH TRANSITIONS: Do we even have to go here?  Lala land is a very fine place, and it can be left more easily if the "great pulling out" is predictable.  No time sense?  It seems like you are always being demanded of something.  Ben did a great cartoon of a harried child sitting at his desk in the first frame.'The teacher, shown as only a voice caption, says, in the second frame:  "Do this, do this, do this!" and the child is working with the pile.  The third frame, the disembodied voice commands "Do that, do that, do that!"  and still the child just keeps his head down, working on the larger pile.  The fourth frame brings about the final insult.  "Do this!" and papers scatter everywhere...."ARRRRGGGGHHHH!" the child yells. My painter friend tells me he "gets lost" in his paintings and loses all sense of time, and can easily go 24 hours without stopping for anything. Time is of no essence.

OVERUSE OF "TO BE"--Everything happens all at once and in the present time...Listen to Bolte-Taylor as she describes the right brain as living in the now, and the left being concerned with the past and the future..Look to studies of dyslexics and others who must visually segment their time in order to finish projects, using calendars, coloring, alarms, to a much greater degree than others.  Planning ahead is a laborious process.  I use passive sentences a lot, we all do until we are trained not to.

NARRATIVE:  The last thing in the world I see Ben as is a storyteller.  Yet I know many dyslexics, or visualists, become award winning writers.  It is because they have learned to give words to the stories in their minds. Sally Gardner was a severely dyslexic child of successful lawyers.  She did not learn to read until she was 14 years old. and was sent to a school for the mentally ill where she had to fight to survive. She had always told herself stories to calm and ease the pain. She said out loud the stories of what she would do to the bullies, and frightened them enough to leave her alone..  Maybe the secret to her success was she sewed costumes for theatre groups, then became an illustrator of children's books before she wrote...she had the visual constructs of storytelling before her.  Her books, to me, are highly visual and read somewhat like scripts She is highly descriptive of surroundings, her heroes and heroines almost always based on those who live outside the confines of polite society who succeed because of magic. Magic and love are always a part of her stories, like the myths spoken of somewhere.  Mr. Grow's words....magic would not be my first descriptor.

PROBLEMS OF CONTEXT: Making assumptions of others  ability to "see" the context they have in mind sounds very autistic to me.  It is tiring to have to transpose one's visual thoughts into non-visual thoughts.  Visualists first language is pictures.  Ask anyone who speaks 2 languages...they "think" in two languages, too.

FORESTS AND TREES: All I can think here is yes, detail, grains of sand, wheels of cars,facts about subways.AND YET, for those who have obtained success...things like seeing the picture in your mind before you begin (My artist friend, Mr. Jones), seeing the whole code before you begin writing it, Temple Grandin building the building in her mind and working out the kinks as she travels through it, Jacob Barnett's ability to visualize mathematical relationships in the plaid fabric he loved, a dyslexic economist who feeds the details into a gestalt without being able to tell why she knows what is going to happen. (I can't think of her name right now but I see her face.(...aaaaaa, it's happening to me!! )  Is this a problem or a higher order of thinking that sacrifices the mundane middle ground? Sweeps up and uses the leftovers on each side, so to speak.

AESTHETIC INDISCRIMINATION:  Oh, Lord, give me an effing break buddy....Expository writing is a type of writing that is used to explain, describe, give information, or inform. Where the hell is the aesthetics in that??? Here, read this story by dyslexic (visual) poet Philip  Schultz

It's entitled "The God of Loneliness".  He doesn't tell you what to think, but if you have half a heart, he knows where he is taking you.

SUMMARY:  I used to think my way of thinking was superior to people like Ben's way of thinking.  I was ighly structured and analytical.  I played the game well enough to be in the top 1% of test takers. Ben has taught me how little that means. Mr. Jones and Ben are both smarter than I am, see things that I don't see.  I'm tired of people trying to tell me why my son is defective.  He is what he is.  No one arrived  at any new thought or changed the world thinking inside the box .  

If I could speak (and write) all the languages of earth and of angels, but didn't love others, I would only be a noisy gong or a clanging cymbal.  (1st Corinthians 13:1)

Friday, October 4, 2013

Studying the Right Brain...

Below is the transcript which I took from the TEDtalk.  It is formatted to lead to the original video, each sentence, so you'll have to deal with the different color.  I have placed a pink color over those parts that deal with the right brain, to begin

Fifteen years ago, I came to the assumption that Ben was "right-brained", because of the similarities I saw in an exercise I did to become a better artist. I literally attempted to use my "right brain". Typically, our bossy "left brain" determines our thinking. This is a tremendous resource in understanding the right brain, this TED talk, please watch it before you attempt to read the transcript.  If you see something that strikes a cord with you or your "autistic" child please comment.

 If you go to the blue blocked area...I was struck by what could possibly be the world of someone who was very autistic, whether verbal or not. I used to work at a residential school for kids with autism. There was the "non-verbal" side that I was never skilled enough to work in. I know those kids were much more aware than they were given credit for, their testing proved it. One student had the behavioral adaptions of a two year old. Yet, he understood as an 11 year old, I mean his understanding of language was that good. What caused this vast discrepancy between understanding and behavior? I am so sick of the "theory of mind", which would say it was because they refused to see the world from our eyes. Dr. Bolte Taylor has given me insight into another possible explanation. Perhaps it is a desire not to leave "la la land", the pull is very great. She herself used a memory of how she used to be (left-brained) to understand she couldn't stay in that world. So when we are told, "they live in their own little world", as I have often is because they live in the world determined by the right brain, which doesn't seem to have a lot in common with the left. It is as though they compliment each other, but don't mesh as easily as one might guess.

 In the old days, children who wrote with their left hands were referred to as "sinister". Look it up, it's true. Teachers, attempting to make them "normal" tied their left hands behind their backs. Now we know better, it isn't a "sign of the devil" but a natural way of being. If we came to understand those children who don't succeed in the typical classroom, would we find they, too, were naturally right-brained? Studies have been done, it seems the right brain is "lateralized", or used more in children who have labels like autism, literally have larger brains on the right side.  This blows me away, but I'm not sure how "kosher" the science is.  BUT...their brains were 27% LARGER than typical children's in the language areas on the right side of the brain.  WHY?  That's what I would love to know.  I can still see my little boy whose understanding of language was so unlike any other child I had taught or babysat.  Well, except for the little guy whose nickname was "Choo-choo".  He had language by then, but he told me in class, when he was four years old, his mother told him he might have to go to an institution.  I thought that was so awful for a mother to say, but if he had been considered "autistic", it might have been the truth. He had a t-shirt he used to wear.  It said, "Too Cool for School".  Maybe he was a right-brainer.

I grew up to study the brain because I have a brother who has been diagnosed with a brain disorder: schizophrenia. And as a sister and later, as a scientist, I wanted to understand, why is it that I can take my dreams, I can connect them to my reality, and I can make my dreams come true? What is it about my brother's brain and his schizophrenia that he cannot connect his dreams to a common and shared reality, so they instead become delusion?
So I dedicated my career to research into the severe mental illnesses. And I moved from my home state of Indiana to Boston, where I was working in the lab of Dr. Francine Benes, in the Harvard Department of Psychiatry. And in the lab, we were asking the question, "What are the biological differences between the brains of individuals who would be diagnosed as normal control, as compared with the brains of individuals diagnosed with schizophrenia, schizoaffective or bipolar disorder?"
So we were essentially mapping the microcircuitry of the brain: which cells are communicating with which cells, with which chemicals, and then in what quantities of those chemicals? So there was a lot of meaning in my life because I was performing this type of research during the day. But then in the evenings and on the weekends, I traveled as an advocate for NAMI, the National Alliance on Mental Illness. But on the morning of December 10, 1996, I woke up to discover that I had a brain disorder of my own. A blood vessel exploded in the left half of my brain. And in the course of four hours, I watched my brain completely deteriorate in its ability to process all information. On the morning of the hemorrhage, I could not walk, talk, read, write or recall any of my life. I essentially became an infant in a woman's body.
If you've ever seen a human brain, it's obvious that the two hemispheres are completely separate from one another. And I have brought for you a real human brain. So this is a real human brain.
This is the front of the brain, the back of brain with the spinal cord hanging down, and this is how it would be positioned inside of my head. And when you look at the brain, it's obvious that the two cerebral cortices are completely separate from one another. For those of you who understand computers, our right hemisphere functions like a parallel processor, while our left hemisphere functions like a serial processor. The two hemispheres do communicate with one another through the corpus collosum, which is made up of some 300 million axonal fibers. But other than that, the two hemispheres are completely separate. Because they process information differently, each of our hemispheres think about different things, they care about different things, and, dare I say, they have very different personalities.
Excuse me. Thank you. It's been a joy. Assistant: It has been.
Our right human hemisphere is all about this present moment. It's all about "right here, right now." Our right hemisphere, it thinks in pictures and it learns kinesthetically through the movement of our bodies. Information, in the form of energy, streams in simultaneously through all of our sensory systems and then it explodes into this enormous collage of what this present moment looks like, what this present moment smells like and tastes like, what it feels like and what it sounds like. I am an energy-being connected to the energy all around me through the consciousness of my right hemisphere. We are energy-beings connected to one another through the consciousness of our right hemispheres as one human family. And right here, right now, we are brothers and sisters on this planet, here to make the world a better place. And in this moment we are perfect, we are whole and we are beautiful.
My left hemisphere -- our left hemisphere -- is a very different place. Our left hemisphere thinks linearly and methodically. Our left hemisphere is all about the past and it's all about the future. Our left hemisphere is designed to take that enormous collage of the present moment and start picking out details, details and more details about those details. It then categorizes and organizes all that information, associates it with everything in the past we've ever learned, and projects into the future all of our possibilities. And our left hemisphere thinks in language. It's that ongoing brain chatter that connects me and my internal world to my external world. It's that little voice that says to me, "Hey, you gotta remember to pick up bananas on your way home. I need them in the morning."
It's that calculating intelligence that reminds me when I have to do my laundry. But perhaps most important, it's that little voice that says to me, "I am. I am." And as soon as my left hemisphere says to me "I am," I become separate. I become a single solid individual, separate from the energy flow around me and separate from you. And this was the portion of my brain that I lost on the morning of my stroke.
On the morning of the stroke, I woke up to a pounding pain behind my left eye. And it was the kind of pain -- caustic pain -- that you get when you bite into ice cream. And it just gripped me -- and then it released me. And then it just gripped me -- and then it released me. And it was very unusual for me to ever experience any kind of pain, so I thought, "OK, I'll just start my normal routine."
So I got up and I jumped onto my cardio glider, which is a full-body, full-exercise machine. And I'm jamming away on this thing, and I'm realizing that my hands look like primitive claws grasping onto the bar. And I thought, "That's very peculiar." And I looked down at my body and I thought, "Whoa, I'm a weird-looking thing." And it was as though my consciousness had shifted away from my normal perception of reality, where I'm the person on the machine having the experience, to some esoteric space where I'm witnessing myself having this experience.
And it was all very peculiar, and my headache was just getting worse. So I get off the machine, and I'm walking across my living room floor, and I realize that everything inside of my body has slowed way down. And every step is very rigid and very deliberate. There's no fluidity to my pace, and there's this constriction in my area of perceptions, so I'm just focused on internal systems. And I'm standing in my bathroom getting ready to step into the shower, and I could actually hear the dialogue inside of my body. I heard a little voice saying, "OK. You muscles, you gotta contract. You muscles, you relax."
And then I lost my balance, and I'm propped up against the wall. And I look down at my arm and I realize that I can no longer define the boundaries of my body. I can't define where I begin and where I end, because the atoms and the molecules of my arm blended with the atoms and molecules of the wall. And all I could detect was this energy -- energy.
And I'm asking myself, "What is wrong with me? What is going on?" And in that moment, my brain chatter -- my left hemisphere brain chatter -- went totally silent. Just like someone took a remote control and pushed the mute button. Total silence. And at first I was shocked to find myself inside of a silent mind. But then I was immediately captivated by the magnificence of the energy around me. And because I could no longer identify the boundaries of my body, I felt enormous and expansive. I felt at one with all the energy that was, and it was beautiful there.
Then all of a sudden my left hemisphere comes back online, and it says to me, "Hey! We got a problem! We got a problem! We gotta get some help." And I'm going, "Ahh! I got a problem. I got a problem." So it's like, "OK. OK. I got a problem."
But then I immediately drifted right back out into the consciousness -- and I affectionately refer to this space as La La Land. But it was beautiful there. Imagine what it would be like to be totally disconnected from your brain chatter that connects you to the external world.
So here I am in this space, and my job -- and any stress related to my job -- it was gone. And I felt lighter in my body. And imagine all of the relationships in the external world and any stressors related to any of those -- they were gone. And I felt this sense of peacefulness. And imagine what it would feel like to lose 37 years of emotional baggage! (Laughter) Oh! I felt euphoria -- euphoria. It was beautiful.
And then, again, my left hemisphere comes online and it says, "Hey! You've got to pay attention. We've got to get help." And I'm thinking, "I got to get help. I gotta focus." So I get out of the shower and I mechanically dress and I'm walking around my apartment, and I'm thinking, "I gotta get to work. I gotta get to work. Can I drive? Can I drive?"
And in that moment my right arm went totally paralyzed by my side. Then I realized, "Oh my gosh! I'm having a stroke! I'm having a stroke!"
And the next thing my brain says to me is, "Wow! This is so cool." (Laughter) "This is so cool! How many brain scientists have the opportunity to study their own brain from the inside out?" (Laughter)
And then it crosses my mind, "But I'm a very busy woman!" (Laughter) "I don't have time for a stroke!"
So I'm like, "OK, I can't stop the stroke from happening, so I'll do this for a week or two, and then I'll get back to my routine. OK. So I gotta call help. I gotta call work." I couldn't remember the number at work, so I remembered, in my office I had a business card with my number on it. So I go into my business room, I pull out a three-inch stack of business cards. And I'm looking at the card on top and even though I could see clearly in my mind's eye what my business card looked like, I couldn't tell if this was my card or not, because all I could see were pixels. And the pixels of the words blended with the pixels of the background and the pixels of the symbols, and I just couldn't tell. And then I would wait for what I call a wave of clarity. And in that moment, I would be able to reattach to normal reality and I could tell that's not the card ... that's not the card ... that's not the card. It took me 45 minutes to get one inch down inside of that stack of cards. In the meantime, for 45 minutes, the hemorrhage is getting bigger in my left hemisphere. I do not understand numbers, I do not understand the telephone, but it's the only plan I have. So I take the phone pad and I put it right here. I take the business card, I put it right here, and I'm matching the shape of the squiggles on the card to the shape of the squiggles on the phone pad. But then I would drift back out into La La Land, and not remember when I came back if I'd already dialed those numbers. So I had to wield my paralyzed arm like a stump and cover the numbers as I went along and pushed them, so that as I would come back to normal reality, I'd be able to tell, "Yes, I've already dialed that number."
Eventually, the whole number gets dialed and I'm listening to the phone, and my colleague picks up the phone and he says to me, "Woo woo woo woo." (Laughter) And I think to myself, "Oh my gosh, he sounds like a Golden Retriever!"
And so I say to him -- clear in my mind, I say to him: "This is Jill! I need help!" And what comes out of my voice is, "Woo woo woo woo woo." I'm thinking, "Oh my gosh, I sound like a Golden Retriever." So I couldn't know -- I didn't know that I couldn't speak or understand language until I tried. So he recognizes that I need help and he gets me help.
And a little while later, I am riding in an ambulance from one hospital across Boston to [Massachusetts] General Hospital. And I curl up into a little fetal ball. And just like a balloon with the last bit of air, just, just right out of the balloon, I just felt my energy lift and just -- I felt my spirit surrender.
And in that moment, I knew that I was no longer the choreographer of my life. And either the doctors rescue my body and give me a second chance at life, or this was perhaps my moment of transition.
When I woke later that afternoon, I was shocked to discover that I was still alive. When I felt my spirit surrender, I said goodbye to my life. And my mind was now suspended between two very opposite planes of reality. Stimulation coming in through my sensory systems felt like pure pain. Light burned my brain like wildfire, and sounds were so loud and chaotic that I could not pick a voice out from the background noise, and I just wanted to escape. Because I could not identify the position of my body in space, I felt enormous and expansive, like a genie just liberated from her bottle. And my spirit soared free, like a great whale gliding through the sea of silent euphoria. Nirvana. I found Nirvana. And I remember thinking, there's no way I would ever be able to squeeze the enormousness of myself back inside this tiny little body.
But then I realized, "But I'm still alive! I'm still alive, and I have found Nirvana. And if I have found Nirvana and I'm still alive, then everyone who is alive can find Nirvana." And I pictured a world filled with beautiful, peaceful, compassionate, loving people who knew that they could come to this space at any time. And that they could purposely choose to step to the right of their left hemispheres and find this peace. And then I realized what a tremendous gift this experience could be, what a stroke of insight this could be to how we live our lives. And it motivated me to recover.
Two and a half weeks after the hemorrhage, the surgeons went in and they removed a blood clot the size of a golf ball that was pushing on my language centers. Here I am with my mama, who is a true angel in my life. It took me eight years to completely recover.
So who are we? We are the life-force power of the universe, with manual dexterity and two cognitive minds. And we have the power to choose, moment by moment, who and how we want to be in the world. Right here, right now, I can step into the consciousness of my right hemisphere, where we are. I am the life-force power of the universe. I am the life-force power of the 50 trillion beautiful molecular geniuses that make up my form, at one with all that is. Or, I can choose to step into the consciousness of my left hemisphere, where I become a single individual, a solid. Separate from the flow, separate from you. I am Dr. Jill Bolte Taylor: intellectual, neuroanatomist. These are the "we" inside of me. Which would you choose? Which do you choose? And when? I believe that the more time we spend choosing to run the deep inner-peace circuitry of our right hemispheres, the more peace we will project into the world, and the more peaceful our planet will be.
And I thought that was an idea worth spreading.

Wednesday, September 25, 2013

Gaining Language...For Emily

I always liked to pat myself on the back, I worked so hard to teach my son language visually...I'm guessing I attempted to teach him the meaning of over 300 words, mostly verbs and prepositions when he was 3 years old. Using Catherine Maurice's book, "Behavioral Modification for Young Children with Autism",  it was based on the work of Ivar Lovaas, the man who tried to beat the gay out of young boys.  There was no "table readiness", as the radically neurodivergent Kassiane writes about here...  (I hope she doesn't mind me linking to her, I'm not exactly a friend of Neurodiversity scholars, although I understand what they are trying to say.)  You see, the first thing they ask in the book  is to "make" your child look you in the eye.  Something told me that was wrong.  Then, you manipulate the child until they stayed seated at the table ready for your commands.  That seemed wrong, too. Kassiane talks about what amounts to destruction of self.  Today, they call it teaching social skills.  It always sounded to me like it was exactly what Kassiane said it was.  I'll be dammed if I would teach my kid to kiss butt to get along.  I taught him how to cuss and flip off kids who called him names.  I am an evil mother. I could not let bullies take advantage of him...teaching him to stick up for himself...that's the only social skill one needs.  All the rest is manipulation to get what you want. Or to keep you entertained while you are putting in time on this earth.

All I did, was daily present words either through a picture, or through actions.  We might get through 1 word in and hour, we might get through 10.  I don't remember how I did it, but when I figured he understood, I checked the word off the list.  As I say, Catherine Maurices book listed around 300, maybe, words in order of complexity, if I remember right.  I made sure I was well rested, patient, and if things started getting hairy, we quit.

"Ben, look--hat....above"  and pointed to the picture of a hat above a desk, for example.  Then I might give him a hat, and say, "Above", and if he put it above the table, I try saying "above t.v." or "above chair" just to reinforce and we'd go bouncing around the room with the new idea.  Or so I thought.

At night, I would ask Ben, "How was school today?"

I knew he might not answer, or he may say just "school" at most.

OR, he would go into a long diatribe, repeating word for word what he had heard on a video.

"Oh, look, the puppy is playing with the ball.  He is such a happy puppy!  He has gone up and down the street, looking for Tommy, but Tommy isn't there.  Here, Tommy!  Where are you Tommy?  The little dog was sad.  His boy was not around.  He barked and barked, hoping he would hear him."

 It must have been a story he heard at school. 

That was how he answered, "How was school today, Ben?"  I would just cry.

I just could not understand...but I had the notion he thought he was doing the right thing.  He heard people making noises at each other all the time, and he had an uncanny ability to repeat LONG strings of dialogue he heard on the videos he loved to watch.  He might only hear these dialogues one time, yet he could repeat them word for word.  He may have known what he was saying, but the ONLY way he could say it was to have an auditory script of it in his head which he played back perfectly.  In pre-kindergarten, he attempted to give a "talk" at school, using the first three minutes of this Charlie Brown Special. He held up a paper, just as Charlie Brown does in the beginning and started repeating word for word Charlie Brown's speech on the Transcontinental Railroad. His teacher marveled and told me all about it. Can you imagine?  Listen to the first three minutes.  That is what he repeated.

What the hell????  I am teaching him single words, but he can repeat this whole dialogue?

  How could he repeat two or three minutes of dialogue, but not be able to tell me two words about what went on at school that day?  He must have had some degree of understanding because he chose the very thing he loved the most, railroads. At another time, he might have memorized a script about space. 

Jacob Barnett's mother talks about how her son quit talking when he was two years old.  The next time he spoke was at a lecture given about the planets by a college professor.  Jacob was three or four years old then, and answered a question regarding the elliptical shape of one of the planet's moon.  NO DIALOGUE for nearly two years, and he answers a college level question in preschool!

Ben had a similar difference that overshadowed conversation..the ability to memorize scripts from videos.  He didn't memorize live conversations, ever.  But video dialogue was intriguing to him for some reason.  Imagine a preschool child memorizing a script about the first American Transcontinental Railroad...

It's really, really, really, really, really, really complicated.  

 Scott Barry Kaufmann talks about an internal dialogue.  I see that in Jacob Barnett's development, the atypical intensity in chosen interests, like it can't be helped.  Ben's language was only of interest to him where it pushed his internal passions farther. Conversation is secondary in each of these cases...the idea is primary. Internal ideas, working things out...ideas, not conversations.  Conversation??  Any old words will do.  It doesn't have to make sense.

Seeing and hearing about Jacob....Scott Barry Kaufmann's attempt to map the great unknown in his own head....this is all manna to me.  It's like heaven, seeing kids aren't defective but so different few if any can understand.

This is so confusing to me, to go back over it.  WHY could Ben repeat a dialogue in preschool but not be able to answer a question without a script?  We called it "t.v. talk", and man-alive would he get mad when you said, "Use your words, don't use t.v. talk."  T.V. talk was primarily how he communicated until grade 4, when he began to use script-free speech.  Strangely or not, he spoke haltingly, almost stuttering when he used his own words.

If you can figure it out, Emily, let me know.