Tag Archives: music

Time To Dance

Hearing music alleviates anxiety and welcomes dappled drops clasping gleeful feelings, radiating inward and outward simultaneously.  Like bursts of intense flavor, music explodes in the body.  Only a few stoic souls can ignore its command to move.  Dancing is the healthy choice.  Turn on your favorite music and give yourself permission to become a part of those notes.

Ideas, Insights and Discovery

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

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

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

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

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

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

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

Emma:  What did those we cannot ask, say?

Ariane:  Who are you thinking of, Emma?

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

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

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

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

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

Ariane:  Ah…  can you tell me more?

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

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

Emma:  Sometimes ease is not an option.

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

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

Ariane:  Great idea!

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

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

“Music is Language of the Soul”

A friend of ours sent us a link to a short piece about stuttering and singing as something that has proven helpful for some.  After Emma and I read the piece I asked Emma what she thought.  Emma wrote, “Singing is the only time words come easily.”

When Emma was very young many of her therapists would sing various songs to her, but usually repeated the same ones, “Head, shoulders, knees and toes” and “The wheels on the bus” being the two that feature most prominently in my memory of that period.  I was curious about Emma’s memory about those songs and so asked her.

“The mistake people made was in not using music more.  Music was more beneficial than anything else,” Emma wrote.

“Even though you couldn’t articulate the few words you spoke back then, I’m talking about when you were just two and three years old, you loved singing and sang a lot.  Did you understand the meaning of the words of the songs you would sing?” I asked.

Emma wrote, “Yes.”

Did you purposefully choose songs that communicated what you were feeling?

“Music conveyed my feelings more than anything else.  I might feel something that no words can describe.  Music is the language of the soul,” Emma wrote.

Yesterday Richard, Emma and I were discussing consciousness, thinking and different ways of communicating our thoughts.  Emma wrote, “Can you think about how I sense the world and then try not to use words?  My pacifist’s stance is the only way.  Fighting requires words, pacifism does not.”

Richard then asked, “Are you saying that from your perspective you see all intelligence as being linked and one, and we, who use words, fight because we cannot see and understand this?”

Emma wrote, “You are trying to define knowledge and intelligence with inadequate words.  Intelligence is not word based.  Music and words used in song come closest.”

Summer - 2009

Summer – 2009


An Analogy – Communication via Violin

*This is a guest post by a friend of mine who is brilliant and thoughtful and compassionate and patient and, well, all-around fabulous.

*Guest Post by DYMPHNA

This blog post is a brainstorm I had after reading several posts (‘here‘ and ‘here‘) on this blog regarding the idea of communication, particular why spoken language, which seems so natural for some, is more difficult for others.  First, I must own the fact that I have a pretty strong relative privilege in this vein.  Spoken language comes naturally to me, so I am writing all of this with the caveat that I might be totally wrong.  If Autistics who are less inclined to spoken language correct me on anything I write in this blog post, listen to them, not me.  Secondly, this is an analogy and all analogies are imperfect; my hope is that this might provide an accurate framework through which people who grasp spoken language easily might be able to understand the difficulties of those for whom it does not come so easily.  (This process for learning music is way out of order from how people actually learn music.  Please don’t kill me, music educators.)

Okay, so, in this analogy, you are going to take this page of information and realize it into meaningful sound:

[Image description: Picture is the first page of the Chaconne
from Bach’s Violin Partita No. 2 in D Minor, BWV 1004.]

Now, for many of you who haven’t learned anything about musical notation, you are already at a loss.  The picture above is literally meaningless to you.  There are some horizontal lines and there are dot’s connected to vertical lines and there are these weird symbols that look like a lowercase b and a #.  If you haven’t learned to read musical notation, the only things on this page that you even recognize are some arabic numerals that you have no idea how to interpret and this Italian word at the top “Ciaconna”, which the dictionary defines as, “a slow, stately dance of the 18th century or the music for it,” a definition which is not particularly helpful.  With the resources available to you, you have established that this is an Italian dance from the 1700s.  So in order to realize the page I put above you, you need to become fluent in musical notation and have the ear training necessary to understand what the pitches are and how to keep time properly, a process which many people find quite difficult.

So, having learned all you need to know about musical notation, you’re ready to perform the Chaconne, right?  Well, probably not, as you have no idea how to play the violin.  (Violinists, you are playing the piece on the piano.  If you are also a pianist, you’re playing it on the flute.  If you’re also a flautist, you are playing it on the musical saw.  If you also play the musical saw, you need to just accept the premise of this analogy and move on.)  If you are not a violinist, and I imagine that most of you are not, you don’t even know how to set up, hold, or tune the instrument, let alone produce a decent sound and then connect those sounds into a meaningful piece of music.  So now that you understand what the notation means, you need to tackle the actual physical reality of learning how to play the instrument, a skill that takes years to do competently, decades to do proficiently, and half a lifetime to do masterfully.  You need to learn how to hold the instrument and the bow and all sorts of skills about how to make the correct sounds come out of the instrument.  Likewise, before you can do any of that, you have to learn to set up and tune the instrument, skills which are quite challenging to the beginning player.  (As someone who has attempted to play the violin on several occasions, I can attest to this.)  The process usually involves tedious work on many minute elements of technique that are by themselves very difficult, such as using different bow strokes, crossing strings, and pressing the fingerboard in the correct location.  Moreover, you have to keep track of all of these elements of technique while attempting to accurately realize a score of music, so in addition to the difficulty of playing the music, you are simultaneously applying the skills you’ve learned in step one.

Congratulations!  Having done that, you have the skills needed to accurately realize the first page of Bach’s Chaconne, a skill that will land you zero audiences and communicate very little.  What most people don’t realize is that very little information is actually given to the musician by the composer.  Many elements, such as the subtle ebb and flow of time, the varying loudness of any given instant of music, vibrato, etc., the elements that make music expressive and, if you’ll pardon the expression, musical, are not given to the performer by the composer.  If the performer performs the work exactly as written on the page, it will sound mechanical and banal.  This is why proficient musicians spend a great deal of their time focusing on interpretation.  They are trying not only to reproduce the pitches and rhythms indicated on the page, but also subtlety that music needs to be truly compelling and persuasive.

All right, having done all of that, you can now convincingly convey great musical ideas.  Musical ideas written by Johann Sebastian Bach.  While you certainly bring something of yourself to the table, none of these are ideas that you originally had.  The basis for all of these ideas was written almost three centuries ago.  In speaking, this is analogous to someone being able to convincing recite a work by Shakespeare.  A great skill in its own right, but all the while we’ve still fallen short of our actual goal, which is to communicate our own ideas effectively to others.  Right now we are only equipped to communicate other people’s ideas, albeit with our own twist.

I would like to pause here and draw some of the analogies between playing the violin and speaking.  First of all, there is the process of developing a rudimentary understanding of what music is, which corresponds to having a crude and basic understanding of the English language.  I will discuss the full understanding in just a moment.  Next, we have to negotiate the physical reality of playing the instrument.  We might have a fantastic conception of what the Bach Chaconne should sound like, but that means nothing if we lack the ability to realize it on the instrument, which is an inherently physical process.  This, not surprisingly, corresponds to the actual motor process of forming words.  For many of us, those processes seem pretty simple, but imagine what it would be like if they didn’t come naturally to you.  Imagine if everyone seemed to have this innate aptitude for holding the violin and producing pleasant sounds on it while you are struggling to get notes out.  Most people, having able or neurotypical privilege, take this ability for granted, so I want you to imagine a world where, instead of speaking, we communicated by playing the violin, a skill for which many people do not have the natural aptitude.  This is where the Social Model of Disability comes into play.  For those who find speech easy but playing the violin difficult, this world is fine for them while they would be disabled in the violin world.  Likewise, those who find playing the violin easy and speech difficult are disabled in this world but fine in the violin world.

Resuming our violin analogy, there is a lot more to speech than playing the Chaconne by J.S. Bach.  As I stated before, most people seek not to reproduce the ideas of others, but rather to convey their own ideas, which they do in real-time.  In music, this equates to improvising, a skill that isn’t necessarily that difficult provided you don’t seek to convey anything that complex.  However, there are still things to consider.  First, you want to have the semantics of what you are improvising accurately reflect what you are trying to convey.  I cannot think of an accurate analogy for this, so please leave an idea in comments if you have one.  On top of that, you have the elements of music theory, which is essentially the grammar of music.  Certain notes in certain contexts convey specific meanings that might not be conveyed in another context.  Without using this correct syntax, what you are trying to convey will start to sound random and disorganized or possibly just “wrong”.  This process comes very easily to most people, but understanding grammar is no simple task, a fact which anyone who has tried to learn a foreign language can testify.  In our native language, we can just say what “sounds right” without having to put too much thought into it.  In the same way, a native tonal musician might be able to tell you that a C-Sharp and a G need to resolve to D and F intuitively without explaining the theoretical reason behind this in the same way that you know whether to use “me” or “I” in a sentence.  However, just because this process comes to us intuitively doesn’t mean it isn’t going on and it’s something we oughtn’t take for granted when thinking about communication.

So what is the point in all of this?  I’ve drawn all of these parallels about how spoken language is like playing the violin.  The point in all of this is the following:

First, the process that we think of as intuitive and easy is not necessarily that easy or intuitive for others.  I don’t find playing the piano very difficult, but most people would struggle to play something rudimentary on the piano because they are dealing with all of the things I mentioned above.  Moreover, at the piano, you at least have the reassurance that if you press a key, a musically sounding sound will come out, something that isn’t guaranteed on a violin or when speaking (which is why I chose the violin for this analogy).

Second, I want people who find things to be easy and intuitive to think about what it might be like for those who don’t find the process so intuitive.  As many people are not instrumental musicians, I challenge you to think about what challenges you would face in the world if, instead of communicating via mouth sounds in natural language, we communicated by instrumental music.  Hopefully this exercise will expand your empathic process so that you can understand what it means to be disabled without medicalizing us or assuming we have a deficit.

Third, I want everyone to think about some of the strategies you might employ in this alternative violin world where you are struggling with many of the rudimentary elements of communication.  Maybe, since you don’t want to have to deal with the challenge of writing a syntactically correct and semantically accurate statement while dealing with the difficulty of playing the instrument, you might instead use an existing melody that approximates what you want to say instead of attempting to improvise something of your own.  Maybe in this violin world, you’ll get special education for doing this, seeing that you have musical echolalia and your ability to use spoken natural language, a skill that frustrates you as you want to use it to express yourself while no one uses that skill, is seen as a “splinter skill”, not inherently useful, but rather a means to develop your violin skills, which are the “correct” way to communicate.

I think this exercise in empathy is much more effective than the wholly appropriative and mocking “Be Disabled for an Hour” idea that many people try out.  Of course, you need to recognize that this will not give you a perfect view into our world.  Being that you don’t live in this culture in which you are disabled, there are things that might not occur to you that are realities that disabled folks have to deal with every day.  Thus is the nature of privilege.  But I hope this has expanded your notion about how disabilities impact your life and how society defines what is and is not a disability.

“I Want to be a Singer on the Stage!”

Emma told us she wants to be a “singer on the stage!”  She said this a few weeks ago and repeated this desire last night.  Richard and I are doing and will continue to do all we can to support and encourage her desire.

Emma’s love of costumes and theatrics, coupled with her love of music, performing and singing in front of an adoring audience will go a long way in helping her achieve this lofty goal.  It is the perfect window by which we can enter to help her acquire language, encourage her reading, writing and typing.  I am starting to print out the lyrics to her favorite songs (reading) and find other ways to encourage writing (lyrics? poetry?) or anything else she might find motivating.

Emma dressed as a knight

Emma in her flamingo costume with her favorite Alien doll

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The Language of Music

Sunday morning Emma wanted to listen to music and dance.  There was nothing extraordinary about this, except that her ipod wasn’t charged and Richard’s iphone was with him in the back where he was still asleep.  Both of these devices hold Emma’s favorite songs.  However, Emma picked up my iphone, a poor and unfamiliar substitute, but she was in desperate straits and realized this was not the time to be picky.  “Mommy?  Can I listen to Mommy’s iphone please?”  Emma asked.

Fortunately I have a number of Gwen Stefani albums programmed in.  It took no time for Emma to find one she liked, which I’d never heard before, Hella Good.  “You hold me like I should so I’m going to keep on dancing.”  It’s got an electronic sound infused with a great beat, blending rock and funk and makes you want to dance.  Which was exactly what Emma proceeded to do.  When the song began Emma got an intense look in her eyes, a look of concentration and focus.  I knew she knew I was watching because she looked over at me in the middle of a particularly complicated set of twirls with her arms raised high, her new string (I call it her starter string as it has no tape on it at all) she held in her right hand and twirled as the tempo picked up.  Emma went from twirling slowly to adding her head to the swirling movement, as her hand twirled the string, her upper body moved from side to side as she spun around.  The bass line reverberated and Emma suddenly thrust both arms up toward the sky and threw her head down while she spun.

This is how all of us would dance if we could.  Emma’s body, the expression on her face, the way she moves, the string extended out from her hands as though it were part of her.  She raised one arm and twirled, faster, her hair fanned out, her nightgown billowed around her ankles. Emma incorporated the music into her being, it was a part of her, it was her language.  She had taken it and made it her own.
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*A quick aside about Emma’s “string.”  After she covered it in red duct tape, she then covered just one end in purple duct tape and then left it in her brother, Nic’s room.  When she reappeared from her own bedroom, she was carrying two pieces of this new string.  I asked her what happened to her old string and she said, “No more.”

“I’ve Got the Moves Like Jagger”

This morning, Emma turned on Maroon 5’s Moves Like Jagger featuring Christina Aguilera.

It began like this…  (By the way, the turquoise thing Emma is holding is her string.  It’s a work in progress.  Every few days she adds more duct tape to it.  Pretty soon she’ll be able to use it as a snowboard.)

and then she did this

Which turned into this

and then this

“I’ve got the moves like Jagger”…

and she did and she was…

It was beautiful.

In it’s purest form – joy.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Dionne Warwick, Somersaults and Feelings

Every morning after her breakfast, Emma listens to music, which she dances and sings to.  This morning she played Dionne Warwick.  Emma has choreographed specific dances for specific songs and in one she has even incorporated a series of somersaults; it’s a kind of Cirque Du Soleil goes disco moment.  When one of us dances with her she will sometimes dance with us while laughing, but just as often will turn her back or, as she did last night yell, “No Mommy.  Sit down!”  So horrified was she by my undulations.  At other times she will hold an arm out in front of her with her hand held like a shield blocking her eyes from us, although I think from her perspective we are the ones being blocked from her.  We’ve made a game out of this and will dart around her so that we are within sight while Emma shrieks with laughter.

“She wants to engage with others,” one of the many specialists noted during an evaluation when Emma was just three years old.  “No one can teach a child that.  You’re way ahead of the game.”

When Emma was first diagnosed I read about how autists are unable to understand emotions and have little if any desire for interaction.  I then reached the conclusion that were this true Emma didn’t feel the full range of emotions we neuro-typicals do.  But I quickly found this to be false.  In fact, I would say the opposite is true.  Emma feels the full range of emotions available to any of us in high-def.  I have seen the look on her face when she thinks she will get to see one of her cousins, but is told they are not coming after all.  Emma’s feelings get hurt, she feels tremendous disappointment, she prefers being with her family more than anything in the world, she finds comfort in specific people just as any other child does.  She has favorite friends at school whom she seeks out.   If anything Emma is an extremely sensitive child, just as her brother is, the difference is she isn’t able to talk to us about her feelings, at least not yet, and the way she conceptualizes situations may be different, I don’t know.  What I do know is that Emma feels a great deal.  Her feelings are easily hurt, she feels tremendous frustration, disappointment, sadness as well as happiness, joy, excitement, anticipation and love.

Before Joe took the kids to a giant indoor water park two weeks ago, Emma said, “I’m so excited!  Mommy and Daddy come too?”  Her full range of emotions were obvious in those two utterances.

Regarding our IEP meeting yesterday – thank you to all who reached out.  These meetings are never fun and this one proved to be no different from the rest.  We did insist that Emma’s sensory issues be noted, though we were told the words “sensory diet” could not be used as they were a specific methodology and therefore could not be included in the report.  We found this somewhat baffling as a sensory diet is not a “methodology.”  It’s a bit like saying someone’s wheelchair is a “methodology,” but rather than quibble with them, we made sure specific references were made throughout her IEP, which should help, if anyone actually bothers to read it.  At least they didn’t say – “Oh yes, I see here that she eats a limited number of foods,” which was what was said to us several years ago during another IEP meeting when we spoke of the need for a “sensory diet.”

I will end with a series of Prepper acronyms WTSHTF (When The S**t Hits The Fan) at least we’ll have our BOB (Bug Out Bag – enough supplies to last a week or so) or at the very least our GOOD kit (Get Out Of Dodge) so that we’ll be prepared for TEOTWAWKI (The End Of The World As We Know It).  I am not making these up.  They exist.  I swear.  Gotta love that.  And for all of you as amused by The Donald’s (TD’s) “hair” as I am, he claims it is NOT a weave, though some have speculated that it’s a “double comb over” (DCO) which is one of the funniest things I’ve ever heard, so I’m going with that theory.  I promise I’m done.  OAO.  (Over And Out.)

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Emma and the Air Guitar

Emma has learned to play the air guitar.

There.  I’ve said it.

Words I never anticipated saying, let alone writing.

Last night I arrived home to see Emma, wearing a nightgown she had long ago outgrown, dinghy and grayed from years of washing in organic, environmentally safe detergent, strutting around the living room to music blaring at decibels rarely heard outside of professional performance spaces.  Her right arm ramming down on imaginary strings, her left holding an imaginary microphone as she sang the lyrics or what she thought were the lyrics to Michael Jackson’s song Beat It.  When she doesn’t feel confident of the words she lip synchs, dances and well, plays the air guitar.  The other night, Nic commented, “Look Mom.  Emma’s like one of those backup dancers.  She’s really good.”

I have since printed out the lyrics to the song as I could not figure out how Emma’s words “… show em your pocket…” could possibly be part of a song about coming of age and manhood, unless said pocket contained a knife.  But never mind.  Each time Emma came to that part of the song, she’d thrust her hand into the pocket of her bathrobe for emphasis.

The actual lyrics are – “Showin how Funky Strong is your fight It doesn’t matter who’s wrong or right Just beat it, beat it, beat it..”  I’m not sure I have the heart to correct her, she so loves theatrically shoving her hand into her pocket.  It will come as a blow, I know.  However, for the sake of using moments presented to us as teachable ones, I will show her the actual lyrics.  It is perfectly plausible Emma may not care what Michael Jackson’s lyrics are, artistic license (hers) being what it is and all that.

We have come a long way since her Carole King’s Chicken Soup phase.

For more on Emma’s journey through a childhood of autism, go to:  Emma’s Hope Book

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.

“Too Good?”

We have a bedtime routine, which Emma because she loves routines, helps us implement.

“Okay Em, time to brush teeth!”  One of us will tell her.

“Mommy come,” Emma often replies.

“I’m right behind you, Em,” I tell her.

Once in the bathroom she’ll walk us through the steps of teeth brushing.  “First, floss,” she will remind me, grabbing the floss from me.  “Now brush,” she’ll say making little brushing noises in a sing-songy voice.

“Wait, you have to go slower Em.  You have to get all your teeth,” I’ll remind her.

“Now fluoride!”  Emma will say, swishing the fluoride around  in her mouth dramatically, before spitting it out into the sink.

“Okay, now pee,” I will say.

“Already did pee,” Emma said, last night when I reminded her to.

“Oh.  Okay.  Let’s get into bed then.”  Most evenings I read to Emma before going to bed.  We’ve gone through dozens of short non-fiction books ranging in topics as diverse as the first moon landing to the discovery of King Tut’s tomb.  We’ve read about wild life in Northern America, we’ve studied carnivorous plants, we’ve learned about General Washington’s love of dogs, we’ve studied the works of daVinci, Degas, Renoir and O’Keefe.

Then one evening Emma said, “Alice?”

“You mean Alice in Wonderland?” I asked.

“Yes,” Emma said burrowing down beneath the covers.


“Yes,” she replied.

“Well, okay.”  I found Alice in Wonderland on my ipad, downloaded it and within minutes was reading to her about Alice falling down the rabbit hole.  When we finished Alice we moved on to The Wizard of Oz.  When Dorothy and her haphazard group arrive in the Emerald City, Emma seemed less interested.  “Do you want me to keep reading?” I asked.

“Yes,” Emma said.  She always answers yes to that question.  But in less than a minute she was asleep.

Then the other night, Richard put her to bed and I heard music playing so I poked my head into her bedroom.  “What are you guys listening to?”

“Lullabies, Alycea,” Emma told me.

The oh so talented Alycea Ench made Emma a CD of lullabies for Emma’s last birthday.  Alycea sings like an angel, her voice is about as beautiful as any I’ve ever heard and she also happens to play the guitar beautifully.  There are only a few vocalists I am moved to tears by when listening to them sing and Alycea is one of them.

So for the past week and a half Emma has chosen to listen to Alycea sing before going to sleep.

As Em and I lay in bed together last night, listening to Alycea I thought about how happy Emma is when left to her own devices.  Her median state is one of tranquility.  When she was a baby we use to describe her as being in her own hippy dippy acid trippy little world.  She was just so happy all the time.  (That this should have been our first tip that something was “off” is an interesting comment on what we believe is “good”.)  As I lay next to Emma contemplating all of this, Alycea began to sing the John Lennon song, Beautiful Boy, written for his son, Sean.  Except Alycea changed the words to “Beautiful Girl.”  In Alycea’s version the song ends with – “Beautiful girl, Darling, Darling, Darling Emma.”  (I can’t even write this without feeling a little weepy.)

But every night, Emma jumps out of bed when she hears the first “Darling” and turns the music off.

“Wait Em.  Let’s wait and hear the last part,” I protested.

“No.  Music all done,” Emma said firmly, while removing the CD.

So I began to sing the last words – “Darling Emma.”

But Emma clamped her hand over my mouth and said sternly, “Mommy no!  Be quiet!”

Now one could interpret this to mean that my voice in no way able to reproduce the ethereal beauty of Alycea’s and that in comparison Emma simply cannot tolerate it or one can try to muddle one’s way through the puzzle of why those last few words Emma cannot listen to.  It reminds me of my favorite book written on autism, by Clara Claiborne Park called Exiting Nirvana My Daughter’s Life With Autism.  Her daughter explains to her, when she’s much older and more verbal that certain things were intolerable to her because they were “too good.”  I wondered for a moment whether these last few words in Emma’s lullaby are “too good” and so Emma can’t hear them.

Until Emma can tell me, this question will be filed under – questions to ask Emma – along with all the others.

For more on Emma’s journey through a childhood of autism and to hear her sing Que Sera, Sera with Alycea, go to: www.EmmasHopeBook.com

Emma wearing another “pretty dress”.

Emma & Music

My studio, where I design my jewelry has windows facing west into Manhattan and north looking out onto the 59th Street Bridge.  The flow of traffic making its way to and from Manhattan is oddly soothing to me, though I never take anything other than the subway to and from work.

Many autistic children are fascinated by some mode of transportation.  I remember at Emma’s preschool there was a little boy who was high functioning. He would recite all the stops on every subway line in New York City.  When he was on the carousel in the park he would shout out the stops.  “Next stop, 59th Street, Columbus Circle,” he’d yell.  “Connections to the A, B, C, D and 1 trains!”

Richard was standing next to the child’s father as this went on.  “He forgot 50th Street,” Richard said at one point.

“No, 50th Street is under construction this week,” the boy’s father replied without taking his eyes off his son.

Emma doesn’t keep tabs on the subway system, if she did, I wouldn’t need my iTransNYC app on my iphone.  However she does prefer taking the subway and can lead anyone through its maze of exits and entrances like the seasoned subway rider she has become.  She knows which train to take and will say things like, “No take the red train.”  Meaning she wants to take the train running under 7th Avenue leading from our house to Central Park or she’ll say, “Take the yellow train?”  Which typically indicates she wants to go to the zoo in Central Park or FAO Schwartz and the Apple store.

Emma is an adept traveler on airplanes, trains of any kind and even in cars, she will sit quietly gazing out the window, humming.   Emma’s memory comes into play with events which happened often years ago – as demonstrated when she says things like, “Amy all gone.  Amy move away.”

This is in reference to her preschool teacher now almost five years since she last saw her.  In addition, Emma has an uncanny ability of remembering the tunes to songs.  She is able to hear a song once and then we will hear her sing it note for note sometimes a week or two later.  The lyrics are often garbled and when she doesn’t remember the exact words or cannot pronounce them she’ll sing an incomprehensible version or will fill in by humming, keeping the tune intact.  I am in awe of Emma’s ability to hold a tune and her memory of lyrics, particularly when she usually does not understand the words.  This is an audio recording of Emma singing “The Mambo” one of her favorite songs from an Elmo Video in which Linda Ronstadt, dressed up as a mariachi band member sings.

Emma Singing The Mambo

Emma Singing

Emma loves to sing.  When she was an infant I realized she responded much better to words if they were sung to her.  So I did or tried to sing as much as I could, even though my voice is weak, Emma didn’t seem to mind.  Emma, however has a lovely voice.

The following is an audio clip of Emma singing with Alycea – our assisant – Que Sera, Sera.

Emma Singing