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

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

Science Lessons

This past month Emma has been having Skype calls with Dr. C. (PhD in bio-chemistry) Dr. C has been giving Emma science lessons three to four times a week and so far he’s covered cells, cell division, cell mutation, genetics, chromosomes, DNA, nutrition, ecological footprints, world population and so much more.  As we are now homeschooling having people like Dr. C., who volunteered to teach Emma science, has been invaluable. 

 Emma typed the other day that I should put some of the things she’s been learning on the blog.  I haven’t asked Dr. C permission so I cannot write more about their sessions other than to say they’ve been incredible.  Dr. C is a great teacher, is brilliant, passionate and has a great sense of humor.  What follows are two exchanges Emma recently had with him that were particularly great.

Regarding chromosomes:

Dr. C:  One pair is the sex chromosome and you, Emma, have two X chromosomes, while your brother, N. has one X and one Y.
Emma:  Poor N.

Regarding genetics:

Dr. C:  A brown haired mother mates with a blond haired father.  All of their children have brown hair, why is this?
Emma:  Dominant genes do not pay attention to prevailing standards of beauty.

August, 2014

August, 2014

 

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

Another Year…

It’s been eleven days since anything was posted on this blog, the longest stretch, in the more than four years of its existence, that it has lay dormant.  It was not intended, but instead just happened.

This has been a year of incredible transformation…  I’ve turned a year older today and yet see how much there is to still learn.  Learning and traveling…  nothing makes me feel more alive, more happy, more eager.  And because of my daughter, I am learning more than I ever believed possible.  But that is for another post(s).  Today…  today is a day I am celebrating my family, friends and beautiful life.

Coyote looking back at us with the same curiosity we were viewing them.

Coyote roaming the ranch, looking back at us with the same curiosity we were viewing them

Heading out on a hike

Heading out on a hike

One of a number of bucks who hang around the barn...

One of a number of bucks who hang around the barn…

Sunset - The Rocky Mountains

Sunset – The Rocky Mountains

A rare photograph of  Richard and Ariane together as Ariane is usually behind the camera and not in front of it… Photograph taken by John Kelly.

A rare photograph of Richard and Ariane together as Ariane is usually behind the camera and not in front of it…
Photograph taken by John Kelly.

Wishing all of you a wonderful day.

More will be revealed…

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.)