Tag Archives: non-speaking

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…

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.”

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

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

Being Home aka When School is No Longer an Option

Last spring we made the decision to pull our daughter from her middle school.  We did not come to this decision easily or without a great deal of thought.  Ultimately we decided we had no other choice.  Neither Richard nor I are “teachers.”  We are both far too impatient.  For the longest time I thought homeschooling meant recreating “school,” but at home.  This thought was both so awful and terrifying to contemplate, and was probably the reason it took me (I can’t speak for Richard) so long to come around to the idea, that having a child at home would be a good thing, and not bad.    

In many ways I wish school was still an option, but it isn’t. Richard and I know this. The conventional route is evidently not in the cards for us and frankly it never has been, but it’s taken me awhile to come to terms with what this means. That feeling of exhilaration and freedom, so many who do not have “school” as a part of their children’s lives talk about, is only now something I’m starting to feel and experience.  So it was with great joy that I read Emma’s thoughts on not going to school.  

Emma wrote, “Bathing for the first day of school is better when your classroom is closer by.”  When asked what she thought about not going to school, she wrote, “It’s invigorating.”  Then she paused and finished with, “I am a lucky gal.”   

When asked for advice on how we can help her learn and pursue her interests, she wrote, “Relax and relax some more.”

Which… yeah.  That’s sound, solid, advice for just about anything one is doing.

Back to school

 

“What We Attach Ourselves to When We are Most Afraid”

Emma typed that she wanted to write – “How about a story about what we attach ourselves to when we are most afraid.” 

“In no particular place that anyone has ever heard of, there lived a girl who was friendly and loved to laugh.  She had a body like any other girl her age, but it moved in ways that were unusual.  This caused people to stare and even made some think that she wanted their mean looks and comments.

“Do you know anyone who likes to be the focus of such hurtful and nasty attention?

“No.  I do not think anyone enjoys being made fun of.

“The fun is a question I do not have an answer to.  Laughter is pure when it hurts no one.”

By Emma Zurcher-Long

August, 2014

August, 2014

My Imaginary Ancestor

Preface:  My mother has been tracing our family’s history for many years now.  Many of our ancestors on her side of the family were German and wrote in German script.  She has been painstakingly translating the letters they wrote and kept.  During our recent vacation my mother told us about some of our ancestors and the lives they led.  All of it was fascinating.

This morning I asked Emma what she wanted to write about.  Emma typed, “I want to write about recent stories heard.”  I said, “Okay.  What do you mean by that?  What recent stories are you referring to?”  Emma then typed the following story.

 “I will write about an ancestor who is imaginary.

“Long ago in another era there lived a writer who did not think in words.  She was fiercely independent in an age when this was not viewed favorably.  She was believed to be peculiar and could not say what she thought as words escaped her, fleeing to dark, secret places out of reach.  The only way to capture the words was by writing them down, restraining them to the confines of a piece of paper.  This made her sad for the words that wanted nothing more than to run wild and free.  So she spoke and the words rushed out, but other people did not understand and thought she needed to be controlled.  She was my ancestor.”

 

Our Ancestors - Emma, Anina, Antonie and Marie

Our Ancestors – Top and going clockwise – Emma, Anina, Antonie and Marie

Statistics and Parenting

Fear.  I have grappled with fear my entire life.  I’m 54 years old.   You’d think I’d have figured out a magic formula to ward off fear by now…  but I have not.  However I have figured out some things that used to frighten me, but that no longer do.  Things like this:

“Among all autistics, 75 percent are expected to score in the mentally retarded range on standard intelligence tests — that’s an IQ of 70 or less.” ~ Wired Magazine 2008

“Roughly 25 percent of people with autism speak few or no words.” ~ SFARI 2013

These two quotes had not yet been written when my daughter was diagnosed, instead there were countless other “statistics” spoken and/or written as though fact, that terrified me.  I had not yet learned to question everything we were told about autism.  I had not yet realized that almost everything people said to us about autism and our daughter would turn out to be untrue.  I had not yet understood that it was these types of things that caused me fear, not my daughter.

Often someone reaches out to me and they are filled with the same fear I once felt.  They remind me of all those predictions, the “statistics,” the warnings, all the things people said to us that caused me to stay up at night.  Terrified because the way autism was spoken of was filled with dire predictions, awful statistics, and because I did not yet know what autism would mean for my daughter.

It is one thing to read statistics that make you feel terrified and another to live with a person these statistics claim to represent.  A lived life, a human life, a living, breathing, feeling, human being who also has fears and thoughts and desires.  So many parents need help figuring all of this out so they can help their children flourish.  Parents who hear and read all the terrible things people say about autism and Autistic people and then are faced with their child and find all those things being said distance them from the genetically closest human being they will ever experience in this life.  (This was something Emma wrote to her brother not so long ago – “the one closest genetic person to you.”)

Statistics do not help us parent better.

One of the single most important things Richard and I began doing was to talk to Emma as though she understood, even when we were not sure she did, even when she walked away, even when she seemed uninterested, had her back to us, closed her eyes, said words that seemed completely unrelated, wandered off to some other part of the room, even then, we kept talking to her, including her in whatever conversation was going on.  And now.  Now we are so glad we began doing that, because, as it turns out, we were right, she understood it all.

She understood it all.

August, 2014

August, 2014

The Seduction of “Recovery”

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

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

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

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

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

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

2005

2005

An Erratic Life

Our lives seem to be particularly erratic these days.  We are homeschooling, trying to get some semblance of a routine, but that hasn’t happened yet.  I keep thinking it will, any time now… Each morning I wake up with a plan, fully intending for it to be put into action and assume everything will fall into place.  I’ve thought this since the end of May when we pulled Emma from her school.  At a certain point I may realize my plans will not be realized, at a certain point I may even stop making them, but I’m not there yet.

Meanwhile I’m trying to figure it out.  How is this going to work?  Why hasn’t the ceramics studio, where I’m hoping to get Emma pottery lessons, returned my calls?  What about swimming?  I’ve totally dropped the ball on setting up swimming lessons.  Then I spin off into a reverie about the word Schwimmen, which we’ve recently learned is the German word for swimming and why it is that in German all nouns are capitalized, and the stress mounts.

My latest brilliant idea is that yoga is the answer.  I hate yoga.  An emoticon does not exist for the expression on my face when I think of yoga.  I am old enough to remember when yoga was a thing back in the 70’s. Perhaps this was my first mistake, thinking this latest craze would be similar.  As I have an inexplicable dislike for yoga it made perfect sense that I would go online to see if I could find yoga for the Wii.   Some things are better done in private I reasoned.  The only DVD I didn’t already own was more than fifty dollars.  No, I thought.  This is not the answer.  And then I had to have a serious talk with myself.  This is a pattern for me.  Looking for answers to things I already have the answer to.  Yoga is out, redialing that pottery studio for Emma is in…  Wish me luck.

pottery

Emma Interviews

Emma has been interviewing various family members.  So I wasn’t surprised when she wrote that she wanted to conduct another interview.  Except this time she wrote that she wanted to interview me.  This is part one of that interview…

Emma:  What sparks your imagination more? Words? Pictures? Music?

It depends on the situation.  I have been inspired and moved by all three at various times and can think of examples of each sparking my imagination.  If I had to put them in order of most moving and inspiring, I would have to say visual, whether experiential as in scenic or static pictures, painted, photographs, sculpture, visual art.  But even as I say this I’m thinking of music that has brought me to tears, and literature and poetry that completely captivated, even non fiction writing, particularly memoirs have completely enthralled me.  Each has inspired and sparked my imagination.  I don’t know that I can choose!

Emma:  Who do you wish you could have known and why?

My grandfather, your Great-Grandfather.  He is the one your granma, my mother speaks so highly of.   It would have been nice to have had the experience of knowing him.  He was also an extremely ambitious, smart and I’ve been told, fascinating man who lived a complicated and unusual life.  I would have liked the opportunity to have interviewed him the way you are interviewing me.

Emma:  What taught you more about life – notable happiness or terrible suffering?

In a strange way, both as they are both great teachers and I’ve experienced large doses of each.  I only wish I was a faster learner so the suffering didn’t have to go on for as long as it did.

Emma:  When were you decidedly happiest and when were you easily the most unhappy?

The most difficult time in my life was the years when I was bulimic.  I felt as though I was watching life pass me by as I remained stuck in my obsessive-compulsive addictive behaviors.  It was a terrible time of feeling I was betraying myself on a daily basis and couldn’t stop, though I wanted to more than anything. Sadly that period lasted for about 22 years.  That’s an awfully long time to be so unhappy.

This period of my life is by far the happiest.  I have learned and experience daily the power of gratitude, friendship, humility, family and the gift of giving back.  I am so grateful for the many gifts I’ve been given – Daddy, N. and you, extended family and friendship.  I have so much love in my life.  I am extremely fortunate.  Gratitude encourages misery to withdraw.  People say it’s harder to talk about unhappiness, but I have found the opposite to be true.  Misery came easily to me. Happiness I’ve had to fight for and once I caught slivers of it, I wasn’t willing to let it go.

Emma chose this photo of me to accompany her interview

Emma chose this photo of me to accompany her interview (I figure since I chose photos of Emma throughout her childhood, it is only fair that she now choose the photographs posted on this blog.)

The Messiness of Blogging

Years ago I wrote about the difficulties involved in writing a balanced and yet honest depiction of life.  I just reread that post and my first response was to delete it.  But as I no longer do things on this blog without asking Emma, I asked her if she wanted me to remove it and others like it.  She wrote, “no.”  So I’m leaving it, though, for the record, if this were left entirely up to me, I would delete it, along with a great many others where I detail personal things about my daughter without thinking about how she might feel having such information made public.  To be honest, I would delete the first two and a half years of this blog, just wipe the slate clean and begin with the spring of 2012 when I began to become aware of Autistic people who were writing about their lives.  But this blog is not mine alone.  This blog is a group blog, written by three people, one of whom has their name featured on it, Emma.  (Emma has said she likes the name of the blog and does not want it changed.)

A blog is a curated version of life.  We tell what we are comfortable discussing, what we are aware of and understand at the time of writing.  But when writing about others, particularly family members, things get trickier.  Even a year ago I wrote things I am not comfortable with, but as Emma wrote a few weeks ago, “it’s important to show that times were difficult.  It is still not easy at all times.”  Emma wrote this regarding another project, but when I asked her if her statement applied to this blog too, she wrote, “Yes.”  

My dilemma in continuing to contribute to this blog concerns that difficult balancing act of writing about the things I am learning, processing and thinking about, while being respectful of other members of my family and not writing in a way that suggests I speak for them.  Even so, I am not always successful.  But more and more there’s a great deal I don’t write about.  If Emma is going through something that causes her pain, I no longer feel comfortable writing about it, even from my perspective unless she asks me to.  I argue that a certain amount of self censorship, particularly when done to protect the confidences and security of others, is not necessarily a bad thing.

The only time I’ve posted things that are personal and painful are when Emma has written, “Put this on the blog.”  Or when I’ve asked her, “What do you want to talk about?” And her response was, “I want to write a blog post.”  But these omissions, this version of life that I do feel comfortable enough to discuss here, cannot, by their very nature, give a true picture of our lives.  So for some, it may seem our lives are ideal, or some readers may mistakenly think we never struggle, or perhaps these posts give the impression that we live a pain-free life of nothing but joy and ease.

Blogging is an intimate and immediate form of writing.  Those of us who blog are far more available to those who read what we write than other people who write. Anyone can make comments and most bloggers, even those who do not or rarely respond to comments, read what commenters have to say.  It is part of what makes blogging unique, and to me anyway, particularly compelling and interesting.  Comments from others, whether they agree or not, are fascinating, often thought-provoking and some even make me reconsider what I believe or how I think about something.

Blogging is the reality TV version of writing.  But even so, there is more left on the editing room floor than gets seen.  It is the nature of the beast.  Life is far too complex and messy, particularly when it is four lives or five, if one counts our mischievous kitty, to capture in 800 words or less, even when posting Monday through Friday.

WhiteWaterRafting copy