Tag Archives: God

Emma’s Take on “The Tyger”

The other day Emma chose to read and discuss William Blake’s poem “The Tyger” for one of our two sessions.  A brief aside:  When I was in graduate school, one of my favorite classes  was on Virginia Woolf’s A Room of One’s Own.  As I remember it, we spent a week discussing a single paragraph.  To me, this was bliss.  Are you familiar with Virginia Woolf?  A goddess of women writers.  A writer of imperfect perfection, truth, honesty, despair, joy and suffering, that tumultuous roiling, spilling of words on the page evoking sadness, confusion and ecstasy all at the same time, this was what I felt as I read Virginia Woolf for the first time.

But the other day, instead of pulling out my old copy of Virginia Woolf’s A Room of One’s Own, I thought of poetry and grappled with which poet and which poem?  Should we read Yeats, Wordsworth, Baudelaire or Keats?  But then, for some reason I decided on William Blake’s The Tyger:

“Tyger Tyger, burning bright,
In the forest of the night;
What immortal hand or eye,
Could frame thy fearful symmetry?”

After we’d read the entire poem to its end I asked Emma what she thought.  Emma wrote, “Beautiful illustration of torn ideas.  Rabid wondering regarding innocence and the result of omnipotence.”

Wow.

Seriously.

Wow.

This was her response after reading it through one time.  No discussion.  Nothing from me about meaning or interpretation.  Nothing.  This was Emma’s take away, having been given nothing else.

I then asked her what role if any evil played in the poem.  Emma wrote, “I am thinking evil is understood as being the tiger.”

“I agree,” I said, “What do you think about using the tiger to describe evil?”

Emma wrote, “The worst evil is the kind that is camouflaged as something else…  like an innocent lamb.”

The second to last stanza is:

“When the stars threw down their spears
And water’d heaven with their tears:
Did he smile his work to see?
Did he who made the Lamb make thee?”

Emma then wrote, “… maybe god understands what it’s like to be misunderstood.”

Emma ~ May 2014

Emma ~ May 2014

“I Want to Know What God Thinks About Autism”

*Emma approved this post before I published it.

Yesterday was our second day working with Soma.  And just when I thought I could not be more blown away by anything Emma wrote, she wrote the title to this post.  It was in response to a conversation about Mesopotamia, ancient civilizations, buildings and building materials, which led to Soma discussing the types of structures built, one being temples.  Soma asked Emma why people would go into a temple, to which Emma wrote, “pray”.  Soma then asked her if she went into a temple what would she pray about.  Emma then wrote, “I want to know what god thinks about autism.”  

I have to interrupt this to say, I am not a believer.  I had a moment, a very brief moment in my teens and again in my thirties when I so wanted to believe, I needed to believe and yet still could not really believe in any way that made sense to me.  God is not something I obtain any solace or strength from believing in, and well… truthfully, I’ve stopped trying.  I don’t need to believe.  Having said that, my husband and I talk about god, religion, spirituality, the practice of acceptance and staying present, meditation, doing the right thing, and what a power greater than ourselves means on any given day.  So there is a fair amount of “god-like” talk going on.  In addition, my mother is a theologian and has taught bible study classes for many decades.  She used to attend a Torah study and I believe does again now.  She is one of the most knowledgable and interesting people I know of to talk to about religion and god.

The point is, Emma has certainly been present to a great many conversations about god, the bible and religion.  But never has she said the word “god” let alone, used the word in a sentence.  And it must be said, we never thought to ask her…   When both children were still very young I bought a number of children’s books on a variety of religions, and made some general statement about the importance of learning and deciding for yourself what you believe.  We still have those books; I’ve never seen Emma look at them, but that doesn’t mean she hasn’t.  And anyway, as I said, it’s not as though she hasn’t heard a great deal of talk about God.

Later I asked Emma if she believed in God and she wrote simply, “yes”.

If there is a god, I’d like to know what god thinks about autism, too.  I’m guessing here, but I should think god is embracing and celebrating all neurologies.  After all, most people I know who believe in the existence of god believe that god created us the same and equal and beautiful beings, given the gift of choice.  We can choose to act with love, compassion and kindness or we can choose to behave in hurtful ways that cause tremendous pain and suffering.  Either way, according to those I trust and respect on the topic, God is always there for us, all of us, all the time, and without exception.

Em Texas

Beauty in Being

A couple of years after my daughter was diagnosed with autism, a well-meaning acquaintance said to me, “God must think you very strong.”  It was one of those comments you wish the person hadn’t said.  I understood they meant well, I understood it was some sort of convoluted compliment, I understood they meant to be something like supportive, but it felt awful.  Least of all because I have never gained any solace from the existence or non-existence of the G-word, but mostly because of its obvious prejudice to those who are Autistic.  The person then followed that sentence with this next one, which was like a second jab to the solar plexus.  “I could never handle an Autistic child.”  I stood there in stunned silence.

At the time I think I probably looked away and tried to untangle the multitude of feelings that surged through me.  But today, now years later, I have a couple of things I want to say.  Let me tell you about my beautiful, perfectly wonderful, very human, child.  She is like the sunlight that glimmers off the leaves of an Aspen tree.  She is that first ripple that appears on a crystal clear lake, extending outward in ever-widening arcs.  She is the sound of rain on fallen autumn leaves, she is the smell of sage brush after an electrical storm, she is the glimmer of morning sunlight when it first appears rising up over snow capped mountains, she is imperfectly perfect and a gift and yes, a blessing.  And if I’m going to be completely, utterly selfish, I must say this:  she has taught me more in her short eleven years of existence than any book, spiritual leader, graduate class, academic study or person I’ve ever read, listened to or met.

I know Emma’s life will have challenges because of her specific neurology.  I know she will often have to fight harder, prove herself more often, work more doggedly and persistently than her non Autistic peers to accomplish things that many do not even consider accomplishments, but assume are a given.  Yet there are some things she can do and will learn to do that will be easier for her than many of her non Autistic peers.  I no longer see autism as a road block, but more as a different road all together.

Every morning I wake up filled with gratitude for my family.   But it is my daughter, my beautiful, beautiful daughter who has introduced me to a world I never knew existed.  A world that is beyond anything I could have imagined, a world filled with other Autistic people who enhance my life and the world on a daily basis because of their existence.  Emma has taught me the true meaning of gratitude.  She impacts my life in ways I will never be able to fully describe or express.  Gifts are like that.  Strength has nothing to do with receiving gifts.  It does not require strength to see the good in others.  It does not require anything actually.

That is another lesson my daughter has taught me –  the beauty in being.

Em testing out her new pogo stick.  Her record?  62 bounces.  

*Blue Pogo Stick

  • Reflection (whereartandlifemeet.com – Ariane’s other blog)

 

Letting Go and Trust

Yesterday Emma did another “catch” at her trapeze school.  Yesterday’s catch was more complicated than the one she perfected a month ago and I cannot wait to see it.  I asked Em last night whether I could post it here and she said, “Yes!  Post on blog!” Since Em’s therapist, Joe, hasn’t had time to upload and send me the link from yesterday , I’m sorry, I can’t help myself, I am posting her first catch from a month ago AGAIN.  Watch all the way through to hear what Em says at the end, it makes me teary just thinking about it.

2Watching her flying through the air makes me happy.  Seeing her joy and sense of accomplishment, makes me happy.  The first time I watched her swooshing through the air I felt a mixture of joy and trepidation, the second time a soaring hopefulness of all that is possible, the third time pride, knowing how hard she has worked, trained and practiced to get to this point.  Years.  Years of practicing.  Just now, as I watched it again, I was reminded of how, it is the connections with other people who make our lives full and joyous.  Connections rooted in trust, compassion, love, and a sense of belonging.

3When Emma releases the bar and reaches out to grab the forearms of the other person, I cannot help but hold my breath.  Even though I know the ending to this particular story, I still hold my breath.  Will they catch her?  Will she fall?  Will she get hurt?  Can she trust them, rely on them to be there for her?   As I write this I know these are universal questions.  Questions I have asked with both my children in mind, questions I have asked about everyone I’ve ever loved.  But in this one instance Emma trusts the other person will be there to catch her and the tears fill my eyes because they are, yet I know this won’t always be the case.   As much as I want to convince myself that I have that power to always be there, to have every situation in my control, there will be times when I won’t be able to protect her from the disappointment and heartache that will come from trusting someone who cannot be relied upon.

But before I drift off into a melancholy laced reverie, I have to remind myself that this is my interpretation of how my daughter may or may not feel when faced with disappointment and the deep sadness that comes with trusting someone, only to feel let down by them or worse, betrayed.  My daughter has a very different outlook on life than me.  She has proven to me repeatedly that my life experiences are not accurate lenses with which to view or predict her life.  The beauty of being a mom is realizing my ideas about how my children will or won’t cope with the things thrown at them are not necessarily correct.  I believe this is what older parents of children who are now adults refer to as “letting go”!

In the twelve-step rooms there’s a great deal of talk about the g-o-d word.  It’s not a word that brings me any degree of solace, so I’ve learned to do what my friend Ibby calls a “work around”.  I don’t do the g-word, but I have faith.  Faith that if I am kind, generous and try my best to be of service, I will be better off than if I’m not.  This thinking doesn’t ensure those I love will always be safe, but it helps me stay centered and present one day at a time.  I can hear Richard’s voice in my head saying, “What?  That’s it?”  And my answer is to laugh and say, “Yup.  That’s pretty much the extent of my wisdom.”

4

Two Strangers, Two Responses to Autism

Stranger number one:  A man seated next to me on the flight from New York City to Denver.   He was distressed and upset because of the extensive delays we experienced and assumed he would miss his connection home to Vancouver where his two sons and wife awaited him.  As he spoke to me, he looked over at Emma, seated in the window seat and who appeared to be sleeping, thumb in her mouth, head resting on her horse pillow, a small scrap of her green blanket clasped in her fist.  Her hair fell over her face, covering part of it.  He nodded toward her, “She’s tired, huh?”

“Yes,” I said, looking over at her and smiling.  Emma opened one eye and made a little grunting noise, before closing her eye again.

He asked me if I was traveling alone.  I explained to him that in fact we were all spread out over many rows.  Because of all the delays the airlines changed our seats, giving most of us middle seats, making it impossible to convince anyone to switch with us so that we might sit together.  At a certain point, I took a lapse in the conversation as an opportunity to pull out my book, Representing Autism.

“Are you a teacher?” the man asked.

I told him I was not, that my daughter was autistic and it was a subject I was particularly interested in.

“Ah,” he said, knowingly.  “My eldest son is too.”

He went on to relate how his son had been poisoned by high levels of lead because his wife had drunk tea throughout her pregnancy from a samovar.  This was confusing as, strictly speaking, his description would make his son’s issues lead poisoning and not autism, but before I had time to think of an appropriate response, he told me that because they had him chelated he was now high functioning and that God had blessed him with a child who could speak.   And while I think it’s wonderful many people find solace in “God” I really hate comments like this, where it has to then be concluded that God is not blessing others with things like poverty, starvation, murder.  I know, I know, don’t get me started.  

He then told me his wife contributed to his son’s autism because it was genetic and “the mother carries the genes that cause autism.  That’s why more than 80% of them are boys.”  This last remark was so staggering in it’s complete lack of logic I was thrown into a state of stunned silence.  Then he capped the conversation off with a nod to Emma and asked, “Is she functioning?”

Do NOT say another word,  I pleaded silently, while also thinking,   You have the chance to say something that might change this man’s point of view.  But I couldn’t.  I was too angry and tired, the delays had taken their toll.  I had hit a wall, silently cursed this man and just wanted to escape into my book.  I no longer felt magnanimous or in the mood to offer an opposing view.  I felt hateful, furious and resentful.  I was disturbed by the man’s, seemingly unintentional, but never-the-less confused ideas of cause and blame, not to mention the casual comment about chelation coupled with how his son’s heart stopped twice while doing so and that didn’t even cover the comment about God, which would have taken me down a whole other path.

“Does she speak?” he continued.

“She’s autistic.   Her hearing is actually excellent,” I snapped.  “And I do not speak about her as though she cannot understand.  Her intellect is as sharp as her hearing.”

“Oh!” the man said, taken aback.

All thoughts of offering patient opposing views in a kind tone went out the window.  I pulled out my book, a pen and my notepad and began reading.  End of conversation.  It must be said, this was not one of my prouder moments, but I didn’t have it in me, I just didn’t and it depressed me that so many are so misinformed.

The second stranger was a woman with two small children who asked me, as Emma and I were waiting for the bathroom, if I would keep an eye on her two kids so that she might use the bathroom.  Emma peered with curiosity at her daughter who was four-years old and son, who was not quite two.  “Boy,” Emma said, pointing at the little boy.

“Yes,”  I said, kneeling down.  “What’s your name?”

We learned that the children, Alice and James were also headed for Aspen on the same connecting flight as us.  Their Dad couldn’t go with them, but their Granma was meeting them in Denver.  When Emma and I returned to our seats, Emma said repeatedly, “Go see  Alice and James.  All go together to Aspen.  Go to Granma’s house and play with Alice and James.”

When we found the gate for our connecting flight, there was Alice and James with their mother who proceeded to ask Emma questions.  “What was her name, how old was she, did she have a brother, his name, age, where we were going, etc.  All the questions she directed to Emma and she waited for Emma to answer, even when it seemed she might not.    A couple of Emma’s answers were somewhat cryptic, as when asked what she liked doing when in Aspen and Emma answered, “Make cake.”  But all in all it was really nice to see someone behave in a sensitive manner while respecting Emma’s need to process, giving her the time to do so. It was in stark contrast to the first stranger.

This morning when I told Richard I was posting this piece, I said, “I’m too tired to find the humor.”

“My brain is operating on a case by case, need to know, basis,” Richard replied.

And that remark made me laugh.

English: Looking south from Top of the Rock, N...

(Photo credit: Wikipedia)

Tolerance, Despair and Hope – Autism

A follower of this blog emailed me this morning about a new app for the ipad called, Pop It.  It’s a “book” that when one shakes the ipad, the perspective of the story changes.  The creator, an artist named Raghava, gave a talk on Ted.com, which is terrific – about perspective and tolerance of others and the role of art and creativity.  Listening to Raghava made me think of a book I am currently reading by the extremely talented and insightful theologian, James H. Cone.  His book – The Cross and the Lynching Tree is a deeply touching and powerful investigation of suffering and hope.  James Cone writes at length about the nature of faith, how God “could make a way out of no way”, how “hope could remain alive in the world of Jim Crow segregation.”

I do not claim to know of the existence, nor can I claim to know of the non-existence of a god.  I cannot even define that word.  It is not a word that holds any meaning for me.  But I do know what it is to struggle with hope.  Hope for Emma, hope for all our children who will grow up to become adults, who many will fear, ignore or just wish would go away.  Our children with autism are often misunderstood, in their inability to fall into line with societal norms they are in turn rejected by society.  The continued negligence and worse, abuse, of people with disabilities is rampant.  Their abuse is done by people who have deemed them incompetent, imbeciles and without value.  This is the common thread that exists in the abuse of all groups of people throughout history.  It is our intolerance of those we believe to be “less than” that makes us believe we have the “right” to punish, shun, ignore, hurt, torture and kill.

James Cone writes:  “The cross is a paradoxical religious symbol because it inverts the world’s value system with the news that hope comes by way of defeat, that suffering and death do not have the last word, that the last shall be first and the first last.”

When I was in my late teens I began using food as a way to quell anxiety and emotions I felt incapable of dealing with.  My overeating turned to full blown bulimia and the bulimia became a way of life – for 22 years.  I remember when I finally stopped, the idea of “surrender” seemed antithetical to all I had, up to that point, believed.  I thought that if I just had more will power I would be able to stop the destructive behavior.  I believed that the bulimia was something I could control.  I believed that my lack of control simply proved how despicable I was, which only served to fuel more of the same behavior.  It wasn’t until I took a leap of faith – really took in that I was, in fact, out of control, that I received a respite from the behavior.  Early in my “recovery” from bulimia someone said to me, “don’t you think that if you could have controlled the bulimia, you would have by now?  Isn’t it true that in fact you have tried to control it all these years and this is where that control has gotten you?”  With a great deal of support from others who had eating disorders and had come out the other side, was I finally able to find a way out from under it.  In surrendering to the fact that I was unable to control it, was I finally able to find freedom from it.

I’m all over the map with this post, but perhaps some of these thoughts will prove helpful to someone else or if not at least encourage thought and conversation.

For more on Emma and our journey through her childhood of autism, go to:   www.EmmasHopeBook.com

Anger

The invisible hand grenade being tossed into a room – anger – whether it explodes or is a slow simmer, it is something I feel when I think of my daughter, Emma’s diagnosis.  To admit this, by the way, is something I rarely do.  It is unseemly, impolite, not what we do and certainly not what we admit to feeling.

But I do feel it.

I wish it weren’t so.  I’d like to think I could think it away.  However the fact remains – I am angry.  I would take away her autism, all the things that make up that word, all the behaviors, the neurological blips, the tangled mess that make her both hyper and hypo sensitive to pain, to noise, her internal inflammations, ulcerations, her rigidity, the obsessive compulsive tendency, all those things when added up that equal autism, I would prefer it was all gone, in an instant.

I went hiking with a friend yesterday who was telling me jokes.  One, about a guy who is allowed three wishes, which a genie promises to fulfill, made me think about my one wish.  Just one, I don’t need three, thank you very much.  My one wish is for Emma to have a neuro-typical brain.  That’s it.  Just the one wish.  I’m like everyone else, I can always add a couple other wishes if pressed, but that has always been and remains my one wish, the wish that blows all the others out of the water.  Please.  Let her brain repair itself.

I know my anger, the slow simmering rage I feel covers a whole ocean of sadness.  But honestly I prefer not to feel any of it.  And I usually don’t.  I either am too busy or I make the conscious decision to turn it off.  Yesterday though, while hiking, it all came surging back.  Like the flood gates had been pried open and try as I might, they were unwilling to be shut, until they’d had their say.  It is in this state that I reject God.  The God so many turn to is one I turn my back on.  I reject, actively reject, angrily reject.  I know this.  And yet, Emma’s autism, perhaps like nothing else, has created such a feeling of need for something beyond myself.  It is beyond a desire, it is beyond a craving, it feels larger than all of that.  It is a need for something, something I can lean on.  I have no sense of it beyond these words.  Perhaps one day I will.

For more on Emma’s journey and ours through her childhood of autism, go to:  www.EmmasHopeBook.com

Autism

I have avoided writing about something I think about a great deal when it comes to Emma and her autism.  It is something some people bring up when they hear of Emma.  Thankfully most people do not.

It is – God.

There, I’ve said it.

When Emma was first diagnosed more than a few people said things like, “Everything happens for a reason.”  The first time I heard that comment I felt as though someone had punched me in the solar plexus.  The air was knocked out of me.  I stood there as they went on about whatever they believed, the reasons they felt this had happened, but I couldn’t hear them.  I watched their mouths open and shut, forming words, but they may as well have been speaking in another language.

The second time someone evoked God, as in, “We only get what we can handle,”  followed by, “God must think you very strong.”   I had the where-with-all to reply, “You might want to check the current suicide rates, as clearly the God you believe in, is giving those people far more than they can handle.”  And then I walked away.  Touche.

These comments, the ones that upset me the most always refer to God.  People with strong, solid faith seem to have a strength or determination that I do not possess.  It is more than a decision that’s been made, it seems they believe they have some sort of power, a knowledge the rest of us can only hope for.  They come across as knowing, as though they had a special private line to God, a kind of state of the art communication device that the rest of us do not own.  Perhaps what they do not understand is how superior they seem or perhaps they do, I don’t know.  I know most are trying to be kind.  That they are not, does not seem to occur to them.

When people have said to me, “I could never handle having an autistic child,” and then they go on to their next thought – “It makes me think we are given what we can handle.”  I understand what they are trying to say, they are expressing their relief that their children are neuro-typical.  “There but for the grace of God go I.”  I know someone who I like very much who made just such a comment, I was surprised when she said it, but I knew she hadn’t meant it to be cruel.  I know many people don’t know what to say when confronted with something that frightens them.  Disease, terminal illness, death, what can any one of us say?  Most of us do want to express our sorrow, we want to be there for the person who is going through the difficult time.  We want to bond with them, show them we are there for them.  Often our attempts are nothing short of just lame.  We end up saying something stupid, we walk away thinking to ourselves – Boy that was dumb.  Why did I say that?  But when people bring God into the mix, as though they need to bolster their thoughts, then it becomes more complicated and hurtful.

I get it.

I do.  I know none of the people who have said these things have meant harm.  They mean quite the opposite.  Still I wish they would think through their comments before they utter them.

For more on my family’s journey through my daughter, Emma’s childhood of autism, go to: www.EmmasHopeBook.com