Tag Archives: autistic

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

Advice for Parents With a Newly-Diagnosed Autistic Child – By Rina

The other day I read a wonderful piece of advice written by Rina, a friend of mine, who is Autistic.  Rina’s thoughts were what I wish I’d been told when Emma was first diagnosed, so I asked Rina if I could share them and she, very generously, gave me permission.  Rina’s words also reminded me of Kamila and Henry Markram’s Intense World Theory for Autism, which was the first “theory” I read that finally made any sense to me or even remotely reflected back what I was seeing in my child.

Rina told me she self-diagnosed early in 2007 after reading “The Curious Incident of the Dog in the Night-Time and was formally diagnosed in 2009.  Rina wrote, “…knowing this about myself has been the revelation of my life. I am exponentially happier, healthier, and more confident since learning this about myself. Now I understand myself!” A little later as we were discussing this post, Rina said, “I was over 40 when I discovered I was autistic, so I spent a large part of my life just thinking I was broken, weird, wrong…” Then she wrote,  “I was bullied terribly in public school, like most of our tribe, it demolished my self-esteem, I was depressed and suicidal…but not now. I am autistic and proud, awesome and I know it!”

I read Rina’s advice to parents to Emma before posting here.  Emma typed, “It nicely states what is important.”  So with that endorsement, here you go and thank you Rina for allowing me to reprint your words.

“You know what? I have lots of thoughts, and I’ve had them for a while, about what I’d like to tell parents of newly-diagnosed autistic children. Maybe I’m talking out of my ass. But this is what I’d tell them. (assuming a boy in this example, for ease of writing…)

Your child is autistic. His brain is wired differently than yours. Autism is a disability. He will have challenges, but with the proper supports, he will have a happy, healthy, fulfilling life.

He will follow his own developmental schedule. Ignore the usual “markers”. Throw them out the window. They will be of no use to you.

Try to remember, always, that your son is experiencing the world in far more detail, and with far more intensity, than you are. It will take a lot of time for him to learn to regulate sensory input. His experience of the world (meaning sights, smells, sounds, peoples’ energy, conversation, others’ expectations of him) will overwhelm him on a daily basis. Have compassion for your son. He will be unlike any other child, even any other autistic child. If you pay close attention, with a compassionate open mind, he will tell you what he needs.

There are four things that can be of most help to your son, especially while he is very young: quiet, calm, consistency, and comfort. More than any recommended (and expensive) therapies, these will be of most help to your son. He may have repetitive and/or sensory-rich behaviors, such as rocking, squeezing a favorite toy, repeating favorite words–these help him to find some order in the chaos of the world–if they do not harm him or others, please allow him these behaviors, no questions asked. If they embarrass you–well, quite honestly, that’s your problem and you need to find a way to deal with it.

If your son is nonverbal or semi-verbal, trust me that he is looking for ways to communicate with you. Behavior *is* communication. If there is behavior that upsets you, that seems tantrum-like, there are probably reasons in the environment, there are things that are causing your son pain–again: try to make his world quiet, calm, consistent, and comfortable.

Consistency: I cannot emphasize how important this is. If days cannot be consistent, give your son warning whenever something unexpected is going to happen. I am an adult, and it is still one of my stated accommodations that I need a head’s up whenever something new comes along, or I need a break so I can process the change. If you’re planning to take him along to his sibling’s baseball practice, to stop by a friend’s house, to go to a yard sale, whatever…plan in advance, tell him about it, tell him what to expect and how long it will last. You know what, I think this is common courtesy. Understand what your son needs and be courteous by giving it to him!”

compassion-energy

An Autistic Child is Murdered

Another Autistic child has been murdered by one of his parents.  This time it is a six-year old, little boy named London McCabe.  London joins a growing list of Autistic children who have been murdered in recent years.

A psychology professor who runs an “education” group for mothers of autistic children in California said, “quite frankly, I am surprised this doesn’t happen more often.”

Wow.

“I am surprised this doesn’t happen more often.”

The casual nature of this comment stunned me.

She then went on to say, “These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated.”  This horrifying statement is untrue, but beyond that, the suggestion that if our feelings are not reciprocated, it makes sense that we become murderous, is to make us so narcissistic, so incredibly monstrous as to be unbelievable.   This is Bruno Bettelheim’s famous “refrigerator mother” theory reapplied to Autistic children and it is just as awful in this new version as it was in the original.

Most Autistic children feel love for their parents, just as most non-autistic children do.  Even when their parents behave horribly toward them, even when they’ve been treated with contempt, ignored, bullied, ridiculed and publicly shamed by those who say they love them, even then, most children still love their parents.  As they grow older many may have more complicated feelings of despair, abandonment, become distrustful, anxious and terrified.  The idea that Autistic children do not feel intensely is an outrageously, misinformed idea.  Just because someone does not reciprocate in a way non-autistics understand, recognize or expect does not mean the feelings do not exist. 

It is extremely disturbing to read such a statement coming from someone who is treated with deference and as though she is an authoritative voice on the topic of autism and Autistic people.  This professor is one of a number of people who has a degree in psychology and has made inaccurate, misinformed and mistaken statements about autism and Autistic people, yet none stop to ask what the psychological damage is to the Autistic children and adults they demonize with their incorrect statements, not to mention the impact such statements have on a misinformed public.  Unfortunately, few seem to be asking any questions about any of this or even bothering to find out if such statements are true, including the newspaper that published her comments.

There is an increasing number of Autistic men, women, teens and even younger people who are writing about their experience of life, their relationships and the world.  I am surprised when I meet someone in the field of autism who does not follow at least some of the blogs so many Autistic people are writing.  The Resources page of Emma’s Hope Book has dozens of links to Autistic people’s writing.  The first 28 blogs listed are written by non-speaking Autistics.  One of those people is my daughter, Emma.  After a presentation Emma gave in New York City a few months ago, she and I had the following conversation:

Emma:  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…
A little later in that same conversation, Emma typed, “Worry and fear are fueled by furious words spoken harshly.  Humor soothes, shining sunny rays spreading hope.”

As the mother of an Autistic daughter who cannot communicate fluently with spoken language, but communicates beautifully by typing, I am continuously shocked by the inaccurate information that is rampant on the topic of autism and Autistic people.  Yesterday Emma typed, “Understanding that all human beings want connection is natural and fundamentally human.”  And last week Emma wrote, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

For people who do not have the ability to communicate with spoken language and/or have sensory issues that impact each individual differently, expecting them to respond the way people who do not have any problem speaking and have never been assaulted by their environment, is relying on a false idea.  It is this false idea that continues to misrepresent so many.  It is this false idea that serves to hurt Autistic people.

The psychology professor told NBC News that mothers do not have the experience of their love returned by their child.   “That is one of the most difficult things for mothers” she told the reporter.

If this were true, it would be hard.  Years ago, when I once believed a great many things about my daughter, that I now know are not true, it was an awful feeling.  But it is far worse to be that child who loves, but is believed incapable of love.  It is far worse to be so thoroughly misunderstood, to be constantly misrepresented in public, to be thought so problematic that people sympathize with the mother who murders you… that is far more horrific than anything I will ever experience in this world.

London McCabe

London McCabe

Ideas, Insights and Discovery

This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.

I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views.  Thank you Emma for giving me permission to post our conversation.

Ariane:  I thought we could begin the day by discussing who you might like to interview and about what topic?

Emma:  Is the way here, thinking, knowing, and asking about another, helpful?

Ariane:  I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life.  Asking is a great way to understand another’s perspective.  Who would you like to interview?

Emma: Using questions to sing truths meaningfully speaks to all.

Ariane:  That’s so true!  Music is a universal language that can transcend words.

Emma:  What did those we cannot ask, say?

Ariane:  Who are you thinking of, Emma?

Emma:  Those who cannot speak and have no one who believes in their ability to communicate in other ways.

Ariane:  Here’s the thing though, we can ask.  We may not get an answer we understand, but we can still ask and I think that’s the beginning, right?  We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.

Emma:  Understanding that all human beings want connection is natural and fundamentally human.

Ariane:  I agree.  So Em, what was it like before you were able to type?

Emma:  Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.

Ariane:  Ah…  can you tell me more?

Emma:  Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.

Ariane:  I imagine interviewing someone must be hard, even now that you can type.  Would you say that’s true?

Emma:  Sometimes ease is not an option.

Ariane:  You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea.  I’m sorry.  What else should we do right now?

Emma:  How about a conversation using music and no words?

Ariane:  Great idea!

Some of the instruments Emma chose for us to use in our "conversation."

Some of the instruments Emma chose for us to use in our “conversation.”

“Mistaken Beliefs People Have”

I asked Emma what she wanted to write about this afternoon during her writing session.  She typed, “Deconstructing the mistaken beliefs people have.”

I encouraged her to continue and asked what she was thinking of specifically.  She typed, “Mostly what people think they understand there cannot be, when talking about autism, creating lots of bad ideas that attract unoriginal therapies we must put up with.”

“Wow!  Keep going,” I urged.

“Actors playing roles the audience greets with enthusiasm, but an autistic person who doesn’t speak as expected, or at all, is booed off stages throughout the world.”

“Such a great point,” I said.

Emma typed, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

She smiled and then typed, “Put it on the blog!”

And so I am.

Austin1

Question for Non Word Based Thinkers

Four mornings a week Emma begins the day with a Skype call with a professor in New England who is a bio-chemist.  We call him Dr. C on this blog.  They have a close relationship and their conversations flow easily between them.  I am very much the observer most of the time.

This is a sample of one of their more typical exchanges:

Dr. C:  So if water were linear and not bent what effect would this have on life on Earth?

Emma:  Hydrogen would not be able to find connections to create networks, life as we know it could not be.

Dr. C:  Right, so there would be no dipole or tiny magnet, thus water would not align with a + or – side….

The session before this one, Dr. C asked Emma, as a homework project, to construct a Benzene (C6H6) model, which Emma then did.  It looks like this:

Benzene

Benzene

The final piece of the homework assignment was to draw the corresponding Lewis Bond Structure.  This proved much more difficult and took about five attempts before she drew the structure below. (It is awesome and fabulously impressive!)

Lewis Bond Structure

Lewis Bond Structure

The Lewis Bond Structure is basically a replica of the actual three-dimensional model, so much so that you can literally place the model on top of it and it will pair up.  While making the molecular models of things like water, ammonia, methane and carbon dioxide are now fairly easy for Emma, drawing the Lewis Bond Structures are not and it reminds me of a similar problem that writing, handwriting and to a lesser degree typing presents.

I would love to hear other people’s thoughts on why this might be so, but watching Emma cheerfully putting together these models is absolutely fascinating.  And it makes me wonder if this isn’t a key to better understanding how teaching methods might take a page from organic chemistry…

If one thinks in a more three-dimensional way, does it then follow that trying to write, formulate the words to correspond with the thoughts, would present a whole series of challenges?  Doesn’t it suggest that this is more than a “word retrieval” issue?  I’m wondering if there even IS a word retrieval issue, (I plan to ask Emma later) but instead there’s a spatial issue presenting itself as non word based and therefore very difficult to transcribe.

Thoughts?

New Beginnings

Emma suggested I write about “new beginnings and offering ways to practice tolerance and hope for those who despair.”

I asked Emma what she suggested to those who are in despair.  She typed, “Best to give despair less space.”

“Yeah, okay.  How do you suggest people do that?” I asked.

“By filling the mind with all the beauty that is life,” Emma typed.

Yesterday Emma, B. and I talked about what happens when one becomes overwhelmed and how this is a human response, no matter what the neurology.  Overwhelm and feelings of not being able to cope are things all people feel from time to time.  We discussed different ways people try their best to cope: taking a break, taking a nap, acts of kindness, identifying all one has, gratitude, helping others, being alone, quiet, taking a bath or a walk, being in nature…

Emma described her feelings of overwhelm as, “my mind becomes jumbled and louder.”  Her words certainly resonated as this is exactly how I feel as well when everything seems too much and feels more than I can cope with.  Then Emma typed, “there should be practice before it gets too jumbled.”  This then led to a discussion about meditation and how those who meditate regularly call it “practice” because it is something one does daily and can help when “the mind becomes jumbled and louder.”

At the end of a lengthy conversation Emma typed, “I do want to try meditation.” And so we will.

The Buddha with Merlin

The Buddha with Merlin

Raging Screams and Shame

The other week I was present for the following typed exchange by two people.  Both are Autistic and both cannot use spoken language to communicate.  (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)

Layla:  You have an extremely loud stomp.  (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)

Jerry:  Is that a guess or are you certain?

Layla:  If you tried to hide it then you gave away the secret.

Jerry:  That is what I am behaving like on some days but proud I am not.

Layla: I heard it all and was curious and wanted to give help.

Jerry: Really do you believe that I am not evil?  (J. turns his head so he is staring down at the table.  His body is completely still.  It is a noticeable change from the way he usually sits while having a conversation with Layla.)

Layla:  Evil is not this and best to forgive yourself.

Jerry:  Thank you for not judging me.

Layla:  I  only ask for the same respect.

Jerry:  The deal is on.

I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood.  Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment.  As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.

As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality.  Jerry expressed profound shame and upset and Layla responded with  identification and deep compassion.

Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night.  I wrote about that ‘here.’  One of the things she typed was:  “Pounding terror is all that remains.”  More recently she wrote, “The raging screams in my head are starving and want to consume me.”

Raging screams…  Pounding terror…

And I am listening.  I am listening and I will never, never love you less.  You are safe.  You are safe here.  I promise you, you are safe.

August, 2014

August, 2014

Choice

I haven’t felt like blogging lately.  I’m busy.   Emma is no longer going to school and we have a number of exciting projects we’re working on, in addition to the ones she is working on solo.  We are covering all the subjects any school would cover, only we are doing it according to what Emma is most interested in.  So instead of saying, this month we will read _________, we say, “Here are some books I thought might be interesting, do any of these interest you?”  And then if they don’t we keep looking, asking and seeing what clicks.

At the moment we are reading Shakespeare’s Romeo and Juliet (thank you K.), we’ll begin pre-algebra in another month or so, are studying ancient civilizations beginning with our earliest known ancestor (thank you Mom), learning about chemistry (thank you Dr. C), have a variety of craft projects, writing projects, music projects, and that doesn’t even begin to cover all the other things that come up in any given day.

In addition to all of that, German (Emma’s very specific and insistent request) is coming along nicely though we are very much beginners, so all you German speakers, please do not start commenting in German and expect a response, unless it’s something like – Meine Tochter trinkt Apfelsaft, aber ich will Wasser, bitte.  Yeah, I just wrote that…. like a BOSS!  You have no idea how proud I am of that sentence, particularly as two months ago I couldn’t have put more than three of those words together.  And even though this was Emma’s idea, I’m (obviously) enjoying myself enormously.  (Oh you have no idea!)

But the point of this post was not to itemize the topics we are learning about or to show off my German (!), but instead was to say, yes, we are busy and so that makes blogging more difficult to get to, but the bigger point, the point I was thinking of when I sat down to write this evening, is this:  I don’t have to blog if I don’t want to.  I can just stop blogging.  In fact, if I felt like it, I could say – I don’t feel like doing this anymore and that would be the end of it. But my daughter doesn’t get to just stop and walk away from her neurology and how that is perceived by the majority of people out there.

So here I am, because this is about countering all the negativity that abounds when it comes to autism.  There is stigma and prejudice and yes, oppression and people saying and doing all kinds of things to Autistic people that are horrifying and appalling and the vast majority of people in this world see nothing wrong with that.  We have to stand up and say, no.  This isn’t right.  People are being beaten down, literally, beaten, threatened, murdered and it’s not okay.  It isn’t.  Our children are growing up in a world where autism is synonymous with all kinds of awful ideas and beliefs that hurt them.

Autistic people are being shouted down, ignored, trampled on, gas-lighted, abused, treated with contempt and some fear for their lives.  Non-speaking Autistic people are routinely treated as though they are incapable of thought and if they type, they are faced with suspicion, doubt and ridicule.  Speaking Autistic people are presumed incapable of understanding others, or believed to be using their neurology to get away with something.  If they speak out in anger they are told they are being unreasonable and that this is yet another example of their neurology.   I’ve seen non autistic people accuse Autistic people of being unable to understand the nuances of an argument because they didn’t like what the Autistic person said.  One woman wrote to an Autistic friend, “Oh, you’re autistic, now I understand why you said that awful thing about that poor woman.”  Seriously.  WTF?

The intolerance some non-autistic people show those who are not like them is staggering and horrifying.  The prejudice that is out in the world is rampant and everywhere.  So as busy as I am, as much as I don’t feel like blogging these days, my daughter doesn’t get to take the day off.  She doesn’t get to say –  I don’t feel like being treated badly or differently or as though I’m not capable of understanding.  I don’t really feel like hearing what that rude person just said about me right in front of me.  She has no choice.  And that’s what this post is about.  Some of us have a choice and others do not.

My daughter does not.

Em!

Some Emma Quotes

Each day is a day of discovery with moments of elation and excitement…  at least this is my take away from the past few weeks.  Here are a few of Emma’s comments along the way that she gave me permission to post.

Discussing black holes  (Dr. C and Emma are kindred souls.)

Dr. C:  What has happened to the atomic structure within a black hole?

Emma:  Opportunity to riot.  Structure is chaotic.

Dr. C:  Basically this is correct.  The gravitational pull is so strong that the atomic structure has collapsed.  Thus nuclei and electrons are fused together with no space between them.

Emma: Just like society during a riot.

Dr. C:  These societal people have collapsed onto each other to further this analogy.

Emma:  Exactly.

After reading  Act 1 Scene 1 of Romeo and Juliet

Ariane:  So what do you think so far?

Emma:  Understand that it is a heady play and play on words that pities human rage and love equally.

Reading and discussing the Texas Revolution 

Emma:  Because of dissent a culture was born.

Regarding the Trail of Tears and how the Cherokee were the last tribe to make the grueling 800 plus mile trek to the “Indian Territories” I asked Emma to tell me something about this picture. 

Trail of Tears

Trail of Tears

Emma:  Exodus.  Forced displacement of people with little choice.  It tells something about man’s wish for power.  Oppression is an ongoing story.

And finally on the topic of being home and not in a classroom setting - Emma typed, “naturally living in world’s infinite candy store of learning is to be in constant awe.”

Just Another Day…

I think this has been one of the best days of my life.  We had a full day of learning.   I’m exhausted.  Seriously.  I feel as though my head is going to explode.    We began the day with our daily Skype call with Dr. C.  Emma and Dr. C. had great fun teasing me about the fact that every time Dr. C. asked Emma something like, “How many F- will bind to a single Mg^2=?” Emma typed the correct answer while I looked on with befuddlement.  Every so often Dr. C  explained something incomprehensible and then asked, “Got it?”  Emma immediately typed “Yes!” while I muttered, not so quietly, “NO!”  As I was continuously slowing them down with clarifying questions, it was suggested, jokingly, that I put a metal bucket over my head.  Emma then typed to Dr. C. “Do you have one?”

As Dr. C. gave Emma increasingly difficult and complex questions, I resigned myself to the fact that I didn’t have a clue what they were going on about, but Emma did, and that filled me with unspeakable joy.  There was lots of uproarious laughter and shouts of “Go Emma!  You can do this!!” after each question and Emma literally bounced up and down with glee.

Science was followed by a break, then math, a break, American history, a break, creative writing, where Emma wrote the most amazing piece that, sadly, I cannot post because it has been submitted to an anthology. (Any who type to communicate are encouraged to submit.  Click the link ‘here‘.  I believe the deadline is October 1st.)   After Emma cranked out her absolutely mind blowing essay, we did German and then she had her book club with K. where they discussed George Orwell’s Animal Farm and the Russian Revolution.  Oh and did I mention Emma did all of this dressed in the most fabulous red gown?

Quick aside – We are so incredibly fortunate to have people in our lives who have enthusiastically and generously volunteered their time to help teach.  To those people, a million thanks.

Now it’s time to do nothing.  Emma?  She’s in the back with Richard watching Seven Wonders of the Universe, I kid you not…

Red Gown

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

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

Intention

Yesterday we had an interesting discussion about the word “intention.”  The word was brought up innocently enough.  It was used in the context of asking about a larger project Emma has been working on.  “What does having intention mean to you?” Emma was asked.  

“To have intention is a skill.  To have intention is a hurdle to jump over,” Emma typed.  

I was sitting in the room as this conversation occurred, but was not part of it yet.  I was surprised by Emma’s answer.  I have never thought of intention as a skill or a hurdle.  Instead I’ve always thought of intention as being goal oriented.  Then Emma wrote, “the mind does not always process it correctly.”  

And I realized I have a very different idea of intention.  An idea of what it means to set out to do something and then to do it.  I come at the word from the point of view of someone who has not grappled with intention as daunting.  I have not experienced the word as a series of frustrations, not typically.  Sure every now and then I intend to do something, I set out to do it and find I do not have enough information or am not skilled enough or realize I need to do a whole list of other things first before I can accomplish what I had hoped.  But this is different from what Emma was talking about.  

“Is intention easier for you while you’re going through it, or later afterward when you are looking back?”  Emma was asked.  

“If I think too much about it the fear is anxiety,” Emma wrote.  

Richard said that what he was hearing Emma say was that the word “intention” means something that we do not necessarily mean.  He went on to say that if someone who speaks and says things that they don’t mean a great deal of the time, he could see how “intention” would be anxiety producing.

And as I listened to this exchange I reflected on how I define “intention” from my perspective of relative ease with spoken language.  As someone who has never considered intention a “skill,” but instead as a given and even an expectation, one I’ve not spent much time considering, my daughter has once again given me a great deal to think about.  This is the very essence of privilege.  Having something, being so used to having it that I do not even know I have it…  unless it was taken away from me or when someone else reminds me of how much easier it is for me than it is for them.

“To have intention is a hurdle to jump over.”

intention

“No More School” and Other Important Topics

Emma (and I) will be presenting at the TASH Conference in Washington DC December 3-5.  We haven’t been given the exact date for our presentation yet, but once I know I will inform all of you.  I will be co-presenting with Emma, but the title, Rethinking Your Beliefs About Autism, and topic are Emma’s idea and I will be following her lead (as always.) 

On the “no more school” front, we are busy.  So busy I am having difficulty finding time to write anything for this blog.  I keep thinking once we get into the swing of things that will change.  I keep thinking if I just plan better, each day will move along easily and we will (miraculously) get the list of all the things we will do and cover, that I so painstakingly made upon getting up in the morning, done.  I even bought a Daily Planner, one of those things everyone used to use before we had smart phones, so that I could record all the subjects we are covering and the length of time spent on each…  Before you fall off your chairs laughing, I DIDN’T give in to my impulse to use a color coding system, so there’s at least that.  (Not that using a color coding system isn’t a great idea and if you tell me in the comments that’s EXACTLY what you do and how fabulous it works for you I promise to be impressed and probably quite envious as well.)

Here’s the thing about all of this.  So much of the problem I’m having is less with our daily adventures and more with the ideas I have about what we SHOULD or SHOULD NOT be doing.  It’s reminding me of the presentation Emma and I gave earlier this summer here in New York City.  I wanted to write everything I was going to say out onto little index cards, which I then planned to read out loud, pausing now and then for Emma to type whatever she wanted to add.  Emma, though, had very different thoughts about how we should do our presentation.  And in the end, as it was Emma’s presentation, we did as she wanted.  We winged it.  (What the hell is the past tense of “to wing it?”)  Winging it is pretty much what we are doing now, only instead of doing this for one presentation, we are doing this every single day and I know, I really, really know there’s got to be freedom in that once I stop hyperventilating.  

Meanwhile, just as she did during our presentation this past July, Emma is having a great time amidst learning about the cosmos, Hubble’s Law, light years, our ancestors, one of whom was a Colonel in the garrison of the King of France in the battle of Seneffe, where he died, against William III of Orange (who knew?) learning German, discussing current events, creative writing, AND planning a dinner party Emma intends to have, along with making up the guest list and meal I am to prepare.

There are several more exciting things in the works writing-wise, but more about all of that another time. 

It’s time for bed, though Emma may well stay up far longer than me.  She has a number of things she wants to do before going to sleep…

The Duke of Enghien saving his father, the Grand Condé at the battle of Seneffe: painting from 1786 by Bénigne Gagneraux

The Duke of Enghien saving his father, the Grand Condé at the battle of Seneffe: painting from 1786 by Bénigne Gagneraux