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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:

Taking a Stand

This blog is about Emma.  It has always been about Emma.  Every now and again I post something about statistics or links to other children or adults who have been diagnosed with autism, the occasional news item, but for the most part, Emma is the star of this blog.  Today however, I feel compelled to write about the children and adults with disabilities who have been institutionalized.  The defenseless portion of our population who do not have parents or families to advocate and defend them for whatever reason.

Yesterday I happened upon an article in the New York Times about a 13 year old boy with autism who was sat on and ultimately crushed to death in the back seat of a van while being taunted, “I could be a good king or a bad king,” by a state employee who was hired to care for the child.  The article goes on to describe in graphic detail the abuse that occurred, the repeated hospitalizations, the horrifying conditions of the Oswald D. Heck Developmental Center,  a state run home for children and people with disabilities near Albany, New York.  An institution which routinely hires high school drop outs, people with criminal records, histories of drug and alcohol abuse and little or no training to care for our most vulnerable.

It is difficult not to console oneself, while reading such an article, with the idea that this was an isolated incident or at least a problem within this specific institution.  Sadly it is not.  Another article, also in the New York Times, which ran a few months ago about the systematic abuse that continues in several group homes was equally horrifying.   The BBC ran a piece just last week on the terrifying cruelty and abuse in homes caring for the disabled in the UK.  In fact, once I began digging around it wasn’t hard to find countless articles about rampant abuse taking place in group homes, state run facilities, institutions, privately run group homes all for the disabled, those diagnosed with autism, downs syndrome, cerebral palsy and the like.  What was incredible was the amount of actual video footage of the abuse, testimony from witnesses, doctors, nurses, hospital records, irrefutable proof and yet it continues.

We talk about torture, the horrors of genocide all in the context of war and yet we have people, here in America, doing unspeakable things to our disabled population and it goes unnoticed, in fact it is even condoned within many of these homes.  There is a “keep your eyes open and your mouth shut” policy at many of these homes.  We have a burgeoning population of defenseless, often non-verbal children and adults who are being raped and tortured.  If you object to the use of the words “rape and torture” consider this from the NY Times on March 12, 2011 by Danny Hakim:

“At a home upstate in Hudson Falls, two days before Christmas in 2006, an employee discovered her supervisor, Ricky W. Sousie, in the bedroom of a severely disabled, 54-year-old woman. Mr. Sousie, a stocky man with wispy hair, was standing between the woman’s legs. His pants were around his ankles, his hand was on her knee and her diaper was pulled down.  The police were called, and semen was found on the victim. But the state did not seek to discipline Mr. Sousie. Instead, it transferred him to work at another home.”

The BBC report on May 31, 2011 – “…Wayne restrained Simone, an 18-year-old who suffers from a genetic abnormality, by pinning her down under his chair for half an hour. Another member of staff holds her in a headlock, despite the fact she shows no signs of resistance.

The footage also shows Simone being subjected to two cold showers in a single day with staff pouring mouthwash and shampoo over her she screams, saying: “It’s cold mum”.

That afternoon, with temperatures just above freezing, Wayne is filmed taking Simone into the garden and pouring a jug of cold water over her head. He only relents and takes her inside after she lies listlessly on the ground, convulsing with cold.

When Simone is unable to sleep that night staff repeatedly pour cold water over her in the corridor, before holding a cold fan to her face.

The day ends with staff dragging her into her room and forcing her to take a paracetamol while Graham, another member of staff, plays the role of German commandant shouting: “Nein, nein, nein”. Despite the serious nature of the abuse Kelvin, a senior nurse, refuses to intervene.”

We say things like – “never again,” we want to believe we learn from our mistakes, from history and yet there is no evidence to support this kind of thinking.  The population that is being abused in all of these reports are our most vulnerable – children and adults who cannot speak out, who cannot accuse, who cannot defend themselves.  And yet it goes on.  There is nothing new about any of this.  The reports of abuse are haunting, horrible, beyond description, the brutality, the sadism, the cruelty is inhuman, all the more so because it is children and adults with disabilities being victimized.

And yet it continues.

What can any one of us do?

We can begin by confronting and honoring what is happening by speaking out against it, by demanding the politicians we vote into office are aware and are willing to take a stand.  This is not a problem that will go away because we want it to, because it’s too painful to read about.  It will only end when we decide it deserves our attention as much as the populations of various countries we have chosen to defend by sending our troops to.

Que Sera, Sera

I’m the silent partner. On Emma’s Hope Book anyway. It’s been a long time since I posted an entry. Ariane has always been the driving (and writing) force of Emma’s Hope Book, but I’ve been completely MIA lately. I went on interferon/ribovirin treatment two months ago. I knew the side effects were going to be extreme, but it turned out to be much worse than I could have imagined – one of those cases where if the disease doesn’t kill you, the cure will. I was basically an invalid, physically and mentally. I had to quit the treatment just so I could function and it took a month before I felt well again.

Ariane did an amazing job holding down the fort while I was laid up. She does an amazing job all the time. I’m very lucky and very grateful. Frankly, it’s been a rough patch for all of us lately. “We’ll get through this,” Ariane said a few minutes ago, kissing the top of my head as she scurried back and forth, preparing for a jewelry trunk show.

“Yep,” I nodded, “we always do.”

Of course, exactly what “this” means is open to debate. I guess it means “today”, because our lives never seem to get less complicated, difficult or worrisome for any significant length of time. This is true of any family I imagine, but Emma’s autism contributes greatly to our never-ending “whack-a-mole” game.

Her progress with language, reading and writing continues at a steady pace – a daily miracle from my perspective. Yet at the same time, she has had a recurrence of her difficulties with being able to go to the bathroom, which we thought was long behind us. Two steps forward, one step back.

I finished my novel a while ago and it is being shopped around by my agent. Ariane submitted a proposal for a book about Emma and our family. Both of us are stressed, bracing ourselves and hoping for good news. The day before I went on the interferon treatment, a conflict with my business partner developed that seems irresolvable, adding to the career pressure. Obviously, I would prefer to have enough success as a writer to provide well for the family, just as Ariane would like her jewelry business and her own writing efforts to be wildly prosperous. I’m sure they will be. It’s a lot easier for me to have faith in Ariane’s talents and potential for good fortune. I come from Irish stock.

Every night for the last week Emma has gone to bed listening to a CD of lullabies recorded by the talented and lovely Alycea Ench. The first song is “Que Sera, Sera.”

The second is “Somewhere Over the Rainbow.” I sit in bed with Emma and listen to these incredibly poignant melodies and lyrics, so full of hope and unattainable longing. Do they speak to Emma with the same desperate yearning I hear? Does she question whether she will ever have a chance to experience the normal phases of life the rest of us take for granted? Or does she just like listening to the Alycea’s lovely voice as she sings:

Que Sera, Sera

When I was just a little girl

I asked my mother, “What will I be?”

“Will I be pretty? Will I be rich?”

Here’s what she said to me:

Que Sera, Sera

Whatever will be will be

The future’s not ours to see

Que Sera Sera

What will be will be.

When I was young I fell in love

I asked my sweetheart, “What lies ahead?”

“Will we have rainbows day after day?”

Here’s what my sweetheart said:

Que Sera Sera

Whatever will be will be

The future’s not ours to see

Que Sera Sera

What will be will be.

Now I have children of my own

They ask their mother, “What will I be?”

“Will I be handsome? Will I be rich?”

I tell them tenderly:

Que Sera Sera

Whatever will be will be

The future’s not ours to see

Que Sera Sera

What will be will be.

Somewhere over the rainbow

Somewhere over the rainbow

Way up high,

There’s a land that I heard of

Once in a lullaby.

Somewhere over the rainbow

Skies are blue,

And the dreams that you dare to dream

Really do come true.

Someday I’ll wish upon a star

And wake up where the clouds are far

behind me.

Where troubles melt like lemon drops

away above the chimney tops.

That’s where you’ll find me.

Somewhere over the rainbow

Bluebirds fly.

Birds fly over the rainbow.

Why then, oh why can’t I?

If happy little bluebirds fly

Beyond the rainbow

Why, oh why can’t I?

As Ariane said yesterday in her post, unless Emma is stressed out about one of her OCD issues or unable to attain her most basic needs, she is so incredibly happy in the moment. Blissful. So I doubt very much that she questions what the future holds in store for her — any more than she wonders what lies over the rainbow. She is here. Now. It is Ariane and I that so achingly desire for her to feel and experience all the things kids her age normally go through: having friends, playing games, chattering back and forth.  And as she grows older: dating, falling in love, raising her own family.

Just trying to imagine that kind of normal life for Emma and the rest of us is almost impossible for me. As I write this, I cannot clearly picture it. Even as a fantasy, this truly lies over the rainbow. But even if I can’t visualize it, I have never lost hope that it is possible. In fact, I believe with all my heart that it will happen — someday, somehow – and our little bluebird will fly.

In the meantime, we will get through this — today. As for tomorrow? Que, Sera, Sera.


“Which one, Em?  The witch’s shoes or your Uggs?” I said, holding up her black Uggs.

“This one,” Emma said pointing to the black, pointy-toed shoes with large brass buckles I bought for her from the costume shop a month ago.

“She’s such a girl,” Richard whispered, smiling broadly.

Emma jammed her feet into the witchy shoes, looked down and said with a certain degree of satisfaction, “There!”

Then she hopped on her scooter and whipped around our living room.

Emma on her scooter in costume

Last year for Halloween, Emma wanted to be a witch as well.  This year, however, she said matter-of-factly, “Pretty Witch.”

And a pretty witch she is.

Emma at Camp

These photos are from last year, but until I can get some photos from this year, they will have to do.

Emma leaping with abandon into the lake.

Playing “Wonder Ball”.  The children stand in a circle singing:  “Oh the wonder ball goes round and round, pass it quickly you are bound.  If you’re the one to hold it last you are out! Boom!  Boom!”

Emma loves this game and we have even played it at home seated on the floor of the living room.

Emma with one of two little girls who befriended her and made sure she was included.

Emma woke this morning, saw the grey sky and said, “Uh-oh!  No swimming!”  As swimming is her favorite activity I think she was worried they would not have enough to do.  Joe reassured her as they left to get on the bus that there would be plenty of other activities, including gymnastics, her second favorite thing to do!

“It’s A Horsey!”

“It’s a horsey!” Emma exclaimed.  Which doesn’t seem so bizarre, (okay so it’s a very thick horse with extremely stubby legs) until you see the rest of the picture…

Definitely not a horse.   Does it have a head?  Check.  Does it have four legs?  Check.  Can it be ridden?  Check.  Then it’s a horse!

Go Away, Big Green Monster!

This photo was taken a few years ago at the local bookstore near where we live.   Emma has never shown much interest in books.  When she was a baby she would squirm and wimper when I tried to read to her.  As she grew older, she allowed me to read to her as long as she was able to hold the book and turn the pages.  Often she didn’t wait for me to finish reading before turning the page.  Much the way she flips through photographs, so quickly it’s hard to believe she is really able to see what and who are in the photo, she does the same with books.  I often wonder if Emma sees in patterns.  In other words, her brain picks up the entire scene and creates an instant pattern, allowing her to “see” the image instantly, any variation is immediately recognized.  I don’t know that she sees in this way, but I wonder.

Years before this photo was taken, I took Emma to the bookstore.  She couldn’t have been older than three.  She wriggled out of the stroller and ran to the back of the store.  We hadn’t been inside this particular bookstore for at least six months.  I followed Emma, calling out to her, “Emmy, where are you going?”  As was typical, she ignored me and kept running.  To her left was a floor to ceiling bookcase, filled with large picture books.  Emma attempted to scale the bookcase.

“No! No!  Emma!”  I cried.  “You can’t climb that.  What do you want?”

Emma jumped up and down, making noises.

“Is there a book you want to see?” I asked, looking at the shelves for a familiar book, which she might like.  Emma doesn’t like new books.  Whenever we are in a bookstore and I offer a new book, one that she hasn’t seen before, she shakes her head no.  Then goes over to a book she knows and pulls it from the shelf and hands it to me.  A few of her favorites:  “Chicka, Chicka Boom Boom”,  “Gossie”, “Gossie and Gertie”, “Brown Bear, Brown Bear” etc.  On this particular day she wasn’t interested in any of those books.  She was determined to climb the book shelf.  I picked her up, bringing her close to the books so they were in her reach.  “Do you want any of these?”  I asked.  Emma reached above my head, so I lifted her higher.

On the second to highest shelf, at about seven feet tall, Emma pulled a single book by it’s spine down from the shelf.  “Is that what you wanted?” I asked.  I set Emma down on the floor with her new book.  The book was “Go Away, Big Green Monster!”  I had never seen the book before.  As I stood watching Emma flip through the pages, reciting each and every word, I felt a chill.  It was eerie.  Where had she seen this book?  Who had read it to her?  She knew every word of that book by heart and spent the next hour “reading” it over and over again.

When we returned home (with the book) I related to Richard what had happened.  “It was bizarre, ” I said.  “I mean have you ever seen this book?”

“No, really weird,” he said.  “Maybe one of her therapists has it.”

“But she never lets them read to her.  And how did she know where it was in the bookstore?  She ran straight to it.  The therapists don’t take her outside.”

“I don’t know.  It’s really strange,” Richard said, looking at me.

“It was the only copy, Richard.  She knew it from it’s spine.  It wasn’t like it was out on display.  And I haven’t taken her to that bookstore in months.  She immediately knew where to find it.”

During the following weeks I asked everyone who came in contact with Emma, but no one had read her or lent her the book.

After a few months I stopped trying to figure it out.  To this day, I have no idea how she found that book, or even knew of it’s existence.  It remains one of the many unsolved mysteries of Emma’s mind.