Tag Archives: autism children

A Conundrum

We are often baffled by words Emma says which we do not understand the context or meaning of.  See Emma’s Language and Sunday Morning’s Conversation for more.   A few weeks ago we were dumbfounded by the utterance, “cheese-solos” which Emma requested over and over again.  Prior to that it was something that sounded like, “atta-tah”.  It turned out the first was cheese doodles, evidently given to her as a snack at her school, but since we never bought them, it took a moment of sheer genius on Joe’s part to make the connection.  The latter turned out to be, “go to town” as in “No we’re not going to go to town.”  Except Emma would say, “No, we’re not going atta-tah.”  Even as a baby, Emma’s first words were, “All done!” though it sounded more like “ah-dah”.  As she has grown older the words continue to confound us, but even when they are intelligible they often do not make sense to any of us.  For the past few weeks in answer to the question – what would you like to do today? – Emma has responded with, “Go to downtown Aspen, push the button game?”

One day last week Joe, determined to get to the bottom of this, spent some two hours in town with Emma trying to figure out what she meant.  He came home as perplexed as when he’d left.

So when Emma said to me, “Downtown Aspen?  Push the button game?”

I inwardly groaned as I knew we would be spending a great deal of time wandering around town trying to find a game which I no longer was convinced she even knew what or where it was played.  But Nic was at the skateboard park with my friend Claudia, so I figured I would go wherever Emma pointed me and see where our adventure took us.

“Go this way,” Emma said from the back seat of the car, pointing in the direction leading toward Independence Pass.

“But Em, that will take us out of town,” I said.

Emma nodded her head.  “Go downtown?” she said with the inflection making it sound like she was posing a question.

“If I turn left Em, we will be heading out of town,” I said, hoping this would clarify things.

“Yes,” Emma said.

“Okay,” I said, taking the next left leading us out of town.  “Is this the right way?” I asked after a few minutes.

“Yes?” Emma said.

“Okay, Em.  You want to go out of town.  This is not downtown, this is leaving town,” I said.

“Leave town?” Emma repeated.

“Where should I go now?” I asked as we passed the turn off to the Aspen Club.

“Go this way?” Emma said.

“Which way, Em.  You have to point,” I said looking at her in the rear view mirror.

“Go this way?” Emma said pointing to the turn off for the cemetery where both my grandparents are buried as well as my father and a number of family pets.

“Oh, do you want to go to the cemetery?” I asked.

“Cemetery?” Emma repeated.  “Push the button game?”

“Okay, Em,” I said as we neared the padlocked gates.  I stopped the car.  “Is this where you play push the button game?”

“No!  Downtown Aspen!” Emma cried.

“But Em, I’ve been asking you where you want to go and you told me to come here. I’ve gone exactly where you wanted, I just can’t understand where it is you want to go,” I said, exasperation and exhaustion crept into my voice.

“Go downtown Aspen?”  Emma managed to say in between tears.

“But Em we just were downtown, remember?  We spent at least 45 minutes downtown with Muzzy in the stroller,” I said.

“Go downtown, push the button?”  Emma repeated sobbing.

“Em.  I give up.  I don’t know where you want to go.  Should we go back to Granma’s?”

“Push the button,” Emma, now inconsolable, cried.

As I turned the ignition on, Richard called asking how things were going and where we were.  He agreed to come meet us at the skateboard park and said he’d take Emma.

The entire way back into town, Emma cried in the back seat, “Push the button!”  Then she paused and said, “Shhhh!  You have to be quiet.  Stop screaming.”  Listening to her I could hear the echo of other people in her life, speaking to her.  Not only was she repeating what had been said to her, she was also adopting the tone and inflection of the many people in her life who have cared for her over the years.

Hours later, while Nic, Claudia and I sat outside the fountain in the middle of town, Richard and Emma appeared.

“Hey!  How did it go?” I asked.

“Well, my theory regarding the push the button game was correct,” Richard said triumphant.

“What theory?” I asked.

“I told you the other day,” Richard said.

“You did not!” I said.

“I did.”

“Tell me.”

“It’s a water sculpture and fountain on the other side of the mall.  If you look at it from a certain angle it kind of looks like a hot tub and she pretends to push a button to make the water jets come on.”  Richard looked at us.

“I cannot believe it,” I said, looking at Emma who was happily sitting on the chair across from me.  “You’re a genius,” I said to Richard.

“The only problem with being a genius is no one recognizes it,” Richard said.

The Journey Continues

Many concerned people have contacted me asking what’s going on, so I will try to explain the recent course of events.  But before I do so, I just want to say I am extremely conflicted by what we have been told to date and by the opinions we have recently been given.  Unfortunately this represents the inherent problems with autism.  One is given a diagnosis based on observation and by the anecdotal evidence provided by parents.  There is no blood test, no x-ray by which a diagnosis is made.  No one knows what autism is, no one knows what causes it and no one knows how best to treat it.  There isn’t even one thing (whether a drug, a therapy, or any other kind of remedy) that everyone agrees will help.  As parents of an autistic child struggling to make sense of all the opposing opinions, it becomes a formidable task to wade through the copious amounts of information, opinions, articles and books.  We are continuing to do our best to make sense of all we are hearing, reading and learning and will continue to keep posting as we gather more information.

To give a summary of what has happened in the past week – through a series of unrelated incidences, Richard was put in touch with the two Drs. he and I referenced in the past two posts.  They voiced their deep concerns with the stem cell treatments we have been doing with Emma.  They gave an example of a boy who evidently developed tumors as a result of stem cell treatments he received in a third world country.  I do not know any more details.  We have, since our initial conversation with them, been put into contact with a number of other professionals in the field of autism and stem cell research.  Richard and I are doing all we can to get as many opinions from different researchers and doctors who specialize in autism and stem cell research.

Last winter when we began looking into stem cell treatments, wondering if it might help Emma, we spoke with a number of doctors who felt it was worth a try.  The two doctors who have been following Emma and meeting with us over the past few years were in the process of putting together a group of 40 autistic children to take to the Costa Rican clinic before it was closed.  They had funding in place, which has since fallen through.  These two doctors were our main source of information as they had both been to the Panama clinic as well as the Costa Rican clinic.  In one conversation with them, I was shown the brain scan of an autistic boy before he had done any stem cell treatments and then his brain scan after six treatments, which occurred over the course of two years.  His brain showed marked change and he is now in a regular school.  Seeing that scan was a turning point for me.  I remember standing in the doctor’s office and thinking – we have to at least try this. For another example of anecdotal success stories see comment to my last post, “Hope for Emma?”

Prior to Emma’s first stem cell treatment in Costa Rica I spoke with a couple of other doctors, a few of whom felt it was inadvisable to go, but prefaced their comments by saying they did not know of the work the Stem Cell Institute was doing personally, and two who said they were watching what the Institute was doing and hoping to replicate their treatments once it was allowed in the US.

To date we have not seen the sort of huge uptick we would hope to see on Emma’s brain scans.  We have been told we shouldn’t expect to see results so soon and that these things can take up to six months to show up.  Again these are opinions regarding a treatment, which has only been done to a few hundred children during the past few years.  Richard and I intend to continue monitoring her through our own observations as well as with periodic brain scans.  We continue to pursue the leading specialists in the field of stem cell research and autism.

At the moment, however, we have decided we cannot return to Panama and the Stem Cell Institute.  Richard and I agreed, when we began advocating for Emma, we would try anything to help her if there was no risk of harming her.  We cannot ignore what we are now being told.

Hope For Emma?

I have spent several hours starting different blog posts over the weekend and this morning, but have been unable to finish any of them.  I am still raw after the phone call Richard and I had with the director of the Stem Cell transplantation program at Children’s Hospital in Boston and the director of the Stem Cell Research Program also at Children’s Hospital in Boston.  See the previous post below, written by Richard on Friday.  An hour after our phone conversation in which they both expressed their concern with the stem cell treatments we have taken Emma to in Central America we received an email from them saying:  “We know that you are trying to do the best for your daughter, but given the issues we discussed, George and I think that you should not go back for stem cell treatment.”

I am feeling overwhelmed with emotions at the moment which is why I am having such a difficult time writing a post.  This blog is about Emma, not my fragile emotional state and though I have certainly written of the difficulties in parenting an autistic child I have tried to always keep Emma front and center – she is the star of this blog.  And yet, it is hard for me to write about anything at the moment because this blog is also about our hopes for Emma.  At the moment my hope is in short supply.

Research

I’m feeling stunned. Early this morning, Ariane and I spoke at length with two of the pre-eminent doctors in the field of stem cell research out of Boston Children’s Hospital. They not only called into question the theoretical basis of what we had been told about the scientific rationale for the stem cell treatments we gave Emma, but warned us that they had the potential to be “extremely dangerous.”

It is possible that this could be another case of “he said, she said,” and that the doctors who recommended the treatment we have been following are every bit as knowledgeable and experienced as the doctors who were warning us not to undergo another such treatment, but frankly, these particular doctors are so highly credentialed that I have to give their opinions more weight – at least until we have gathered more information from others who are universally regarded as experts in both autism and stem cell research.

They gave us the names of two doctors in the Boston area who are considered to be experts in autism research and (perhaps?) stem cell research as well. It wasn’t clear to me from our phone call that the doctors being recommended were definitely doing research with stem cells, but they are involved with autism research as well as a variety of other neurologically based disorders. I made a promise to myself after the phone call today to stop making assumptions, so until we speak, I’ll just say that I’m looking forward to learning more. I visited both their websites and they have impressive credentials. They are both involved in genetic research so even if stem cells aren’t part of their programs perhaps they have other promising treatments under development.

Perhaps. Maybe. Possibly. I’m filled with doubt and uncertainty as to where we go from here. I do know that we have to keep doing more research, and since the entire field of autism is rife with contradictory theories from highly regarded researchers, we have our work cut out for us. More to come.

The Performance

Emma loves nothing more than a birthday party.  And so it was with great excitement that she descended the staircase wearing her party dress with a pair of lime-green and black crocks on her feet last night.

“Oh Emma!  You look so beautiful!”  I said when I saw her.

“It’s Mommy’s birthday,” She said in response.

If we are having a few people over for dinner, Emma will say, “It’s a birthday party!”

“No, we’re just having some friends over for dinner,” I will try to explain.

“Party,” Emma will say, nodding her head and then she’ll add quickly, almost under her breath, “Birthday party.”  As though by saying this it will make it so.

It doesn’t matter how often we explain that any given holiday such as Christmas is different than a birthday it becomes a  – “Christmas Birthday party.”  If we are having family and friends over for Thanksgiving – it becomes a “Thanksgiving Birthday party”.  My mother’s birthday falls on Thanksgiving every seven years, which has only compounded the problem, making our explanation all the more inexplicable to Emma.  How is it that just two years ago we had a huge birthday celebration on Thanksgiving for my mother with relatives flying in from all over the US and now this year it’s a regular Thanksgiving.  As far as Emma’s concerned we are making things far too complicated.  A party is a birthday party no matter what we say.  And yet, now after the other night’s monologue I wonder if this is true.  Perhaps the subtleties are not lost on her, perhaps she simply is unable to express herself well enough to tell us how she feels and it’s the excitement she is trying her best to convey.  The kind of excitement we can understand and which we are able to share with her derived from a birthday celebration.

So it was last night as I celebrated a half-century of life, which does seem an awfully long time.  But age carries little importance to Emma.  Often when asked, “Emma, how old are you?”  She will answer, “Three!” or “Five!” as likely as what her real age is, “Eight!”  These are words, which she tries to remember but sometimes forgets.  When I hear her answer, it seems to me the number holds no meaning to her.    As it should be, I say.

Last night after the birthday cake was served and my mother had given a toast, Emma ran up to the front of the room, grabbed hold of a pretend microphone and proceeded to say in a loud voice, “Ladies and Gentleman!  Enjoy the show!”

Richard and I exchanged a nervous look.  Emma has been known to get up in front of an “audience” whether it’s on the subway and they are involuntary and captive or at any dinner party to sing.  Often Emma will sing the same song over and over until she is told to stop.  When we are home and it’s just us we will allow her to sing the same song repeatedly.  However even then we will try to redirect her and encourage her to sing a different song to break her out of the increasingly perseverative loop she can get herself in.

“Emma!  Would you like to sing?”  I asked.

“Yes,” Emma said, bouncing up and down.

“Okay, one song,” I said holding up an index finger.

Emma nodded her head, “Okay.”

“What would you like to sing?” I asked.

“It’s My Life,” Emma said.

It’s My Life by Gwen Stefani is Emma’s favorite song, hands down.  Not only does Emma know the lyrics by heart, but she has all the instrumentals down and does her best to make noises replicating them.  Our guests, all 50 plus of them gave her their attention as Emma began.  It was a flawless performance, which began somewhat timidly, for Emma is usually not shy in either pitch nor volume, picking up in intensity after the first few bars.  By the end she was dancing and singing with abandon.  When she finished everyone cheered and applauded as Emma beamed.  She ran over to me.

Looking into my eyes she said, “Daddy’s turn and then Emma sing again?”

That’s our beautiful girl – a Gwen Stefani wannabe, rock and roll princess who loves an appreciative audience.  I’m just hoping someone recorded it.

A Gift

Last night we all settled into the family room to watch Groundhog Day, a family favorite and movie some of us have seen more than a few times.  Toward the end of the movie there is a scene where Bill Murray’s character climbs up onto a stage to be auctioned off to the highest bidder during a party.  Emma, who was sitting to my right with her legs folded, torso leaning against me suddenly said, “It went up, up, up high into the air.  I said I can’t reach, it’s too high,” she reached her arm up as though trying to grab something.  “You have to pull on Mommy’s shirt and ask for help,” as she said this she pulled on my robe.  “Mommy – I need help!  You have to get it down.  Daddy go up the stairs to get it.  Uh-oh it’s up on the ceiling.  We cannot reach it.  You have to reach!  Reach high up.   Jump!  Daddy gets it!  It comes down, down, down, then bump!  Now we have to hold on.  You cannot let go or it goes up, up, up to the ceiling, up into the sky.” Emma looked from Richard to me.  The depth of her eye contact took my breath away.  Her face, filled with sadness, her eyes steady seeking out mine showed understanding.

“This is incredible,” Richard said watching her.  “Do you remember this?”

I nodded my head.  “Oh Em.  Were you sad?” I asked.

“It was a long time ago.  It was a long, long time ago,” She said.

After the movie ended we sat in the living room and Emma continued, repeating the first part of the story and now adding, “You have to hold on, you cannot let go.  If you let go it will fly away.  You have to tie the string,” she gestured with her hands tying a string around her wrist.  “You go to Gaby’s house.  It’s Lili’s birthday party!  We cannot get another balloon.  You cannot let go.  If you let go, it’s all gone.  Emma so upset.”  Emma touched the outer corners of her eyes to show she had once cried over this.  It was absolutely astonishing to witness.  The scene Emma was describing took place either last year or the year before.  Her cousin Lili, who was spending the summer just down the road, was celebrating her birthday, which falls on August 15th.

There is so much to say about Emma’s words last night I hardly know where to begin.  The sheer length of her sentences and the way in which she was relating and putting together a series of events was something I have never seen before, not to this degree.  There was the recognition that it happened around the same time of year as now, and the comment “It was a long time ago”, both of which suggest a depth to her thinking we have rarely if ever seen as well as the understanding of something so abstract as time.  I just posted two days ago regarding Emma’s inability to understand time, and yet here she was referring to an event, which occurred over a year ago and she clearly understood it was “a long time ago”.  I could not imagine these were words she understood much less knew to use in a sentence within an appropriate context had I not heard her last night.

Joe, Richard and I looked at each other in astonishment as Emma continued to talk about Lili’s party and how she had once lost a helium balloon, once there at their house and a couple of times here at ours.  The events were conflated, but the meaning, the emotional weight she felt as a result of loosing the balloons and how she lost them were all correct and factual.

As we climbed the stairs to our bedrooms Richard said, “Hey Emma!  Do you know what tomorrow is?!”

Without turning around or with any hesitation Emma shouted, “It’s Mommy’s birthday!”

This too is noteworthy as Emma is just as likely to have said it was Folgen’s (one of my mother’s two German Shepherds) birthday or Nic’s or hers or Granma’s or my brother Victor’s or his wife Susan’s, who in fact just celebrated her birthday or any number of people who currently occupy the house.  That she has been hearing about the birthday celebrations and activities surrounding today are not so unusual.  What is unusual is the fact she was able to answer Richard’s question without hesitation, demonstrating she has heard us discussing the birthday planning and knew for whom they were for.

Today is my birthday.  I am celebrating half a century.

Emma’s monologue last night was a gift surpassing my wildest dreams.

Baseline

Before and after. Since we are not involved in any control group study, we need to establish a baseline reading of Emma’s brain waves before the stem cell treatment next week and then again afterward, probably a month or two post-procedure.

Joe and I will take Emma to the NYU brain research lab today where she will have a QEEG brain scan. It measures alpha, beta, delta, gamma and theta brain wave activity in the various regions of her brain illustrated with nifty color-coded pictures of her brain cross-sectioned from above and from the side. Black, navy blue, and brown – good news. Orange, yellow and red – not so good. We won’t see the results until after we come back from Panama so it will be a while until we can say anything about the ‘before’ baseline scan.

I’m hoping that we will see our doctor today and I’ll have an opportunity to ask him some more questions about the stem cell therapy. If so this will be a two-part entry. Before and after. If not, then it’s a brief blog today.

Questions

“Do you think Emma will ever ask us a question?”

When Ariane asked me that question, I had to pause and think about it. Had Emma ever asked us any questions? After a few more seconds of scouring the memory bank, I answered.

“She asks us questions all the time,” I said. “They’re just simple questions.”

“Go to snake bite museum?”

“Watch Elmo movie?”

“Take a plane, see Grandma?”

“Have some apple juice?”

As far as I can remember, all of her questions are requests to have her needs met or requests for information or clarification, which are also needs-related.

“Go to snake bite museum?”  Request for needs to be met.

“Take a plane, go see Grandma?” Request for information related to needs.

She will also frequently make statements that are stealth questions, often with her voice rising up slightly at the end of a sentence like you do when asking a question.

“No see Becky today. No school bus.” Then she will look up at you expectantly, requesting an affirmation.

“That’s right Emma, today’s Saturday, there’s no school today.”

We probably say “That’s right Emma” more than any single phrase to her. As a consequence, she also says “That’s right” all the time.

“No take the bus.”

“That’s right Emma, no school bus today.”

“That’s right! No school bus today!”

“So what do you want to do Emma?”

“Make pancakes?”

“Sure Emma, let’s make pancakes.”

“Yaaaaaaay!”

When Ariane asked me the question about Emma asking a question, I instantly knew what she really meant by that. That’s why I had to pause a few seconds and think about whether she had or not.

“Why does Grandma live so far away?”

“How do they get all the music into an iPod?”

“Where is California? How long does it take to get there?”

“Why are the buildings so tall here?”

“How come they keep all the animals in cages at the zoo?”

“When am I going to be a grown-up?”

These are all simple questions you might hear from any four-year old child. They seem light years away from Emma’s capabilities right now. Why? When? How? Where? What? These questions never seem to materialize, at least not in that form.

“Can I?” “Have some?” “Go there?” Yes, they are all questions, but not the kind you expect to hear from a girl who is eight years old. Her teachers at school have told us she has made progress in asking questions, and will even tell us examples of the what, where, when, how and even some why questions she has asked. I can cite some examples too, though they don’t use the actual W words.

When and where questions are the easiest:

“Get on a plane, go see grandma?” That’s a when question in disguise. She wants to know when we are going.

If we are in an unfamiliar area she might ask a where question like, “Go find swimming pool?” Most kids would ask, “Where can we find a swimming pool around here?”

“Get on a plane, go to hospital (hosspull)?” That’s a when and sort of a where question. She wants to know when we are going for the stem cell treatment and where are we going, which foreign country do we have to fly five hours to reach because our government can’t get it together to have these treatments available here. Ha. Ha.

“Daddy, movie is broken. Daddy help?” That’s a when and how question. How can you get this thing working again? When can I watch Mary Poppins?”

What questions are a rare breed, at least the kind of what questions normal kids ask that stem from curiosity about something unfamiliar. She doesn’t seem to have that curiosity for more information about what something is, how it works, or why it is the way it is.

The rarest of the rare are why questions, and the rarest of the why questions, the albino elephants of the question world, are why questions related to abstract thought.

“Why do bad things happen to good people?”

If we ever hear Emma ask a question like that, we are home free!

Presto, chango. “That’s a normal kid you got there mister!”

Why questions related to feelings are the low hanging fruit we strive to harvest, planting the seeds for them by asking her why she feels the way she feels, usually when her emotions are very intense – intensely happy, or intensely upset.

“Why are you so upset Emma? Why are you so sad (or angry, or frustrated)?

“Emma is so upset (…because…) Emma can’t find cokie.” (her blanket).

If she can truly understand a why question like that, and she does hallelujah, then she can ask one too. Since her receptive language (comprehending what we say) is stronger than her expressive language (communicating her thoughts), this is how we practice with her.

I know she asked me a why question once, related to my feelings. Probably something like “Why is daddy upset?” but I can’t remember exactly what it was.

Maybe Ariane, Joe or one of her teachers or therapists could add more examples they have witnessed in the comments section below. The more we can list, the more hope we have. Hope is the name of the game here (and the name of the blog).

I’d be lying to you if I didn’t have a great deal of hope that this next stem cell treatment will yield a few how and what questions.

If we get a few whysGravy.

The Washing Machine

“Should we put Emma in the washing machine?!” Emma asked, while pointing to the washing machine filled with clothing.  Then before I could answer, she shouted gleefully, “NO!!   We cannot put Emma in the washing machine!”  At which point Emma began to laugh hysterically.  “Should we put Mommy in the washing machine?” Emma asked, still laughing and pointing at me.

“Good idea, Em.  But will I fit?” I asked.

“NO!”  Emma shrieked with laughter.  “You cannot fit in the washing machine.  Mommy’s too big!”

“But maybe I could squeeze inside if I scrunched down into a teeny little ball,” I said, sucking my cheeks in and curling my arms up next to my sides.

“NO!”  Emma shouted.  “You cannot fit inside the washing machine.  Emma’s too big!”

“Emma’s too big?  Or Mommy’s too big?”  I asked, laughing along with her.

“Emma AND Mommy too big!  We cannot put Emma in the washing machine,” Emma said.

This went on for quite some time, with me asking if we should put a whole variety of people in the washing machine:  Daddy, Nic, Granma, Uncle Andy, Uncle Victor, Aunt Toni, Uncle Chris…  the list went on.

Each time Emma would answer, “NO!  We cannot put  Nic in the washing machine. Nic is too big!” or “NO!  We cannot put Daddy in the washing machine.  Daddy’s too big!”

“What about Merlin?  Should we put Merlin in the washing machine?” I asked, expecting the same answer from her.

But Emma surprised me by saying, “Yes.”

Taken aback I didn’t say anything for a second.  Then I repeated, “We should put Merlin in the washing machine?”

“Yes!”  Emma said.

“Are you sure?” I asked buying for time and trying to figure out how to save poor Merlin from such a murky fate.

“YES!”  Emma shouted.  “We can put Merlin in the washing machine!”

“Nooooooo!  We cannot put Merlin in the washing machine,” I said.

Emma threw her head back and laughed and laughed.  I don’t know that I have seen her derive so much joy from anything in days.

Poor Merlin.

Theories

Autism is nothing without theories.  Specialists, doctors, scientists, geneticists, parents, everyone has a theory when it comes to autism.

Richard claims I have more theories regarding autism than the most versed specialist.  And he’s right, I do.  The only difference is, I freely admit 95% of them turn out to be wrong and the remaining 5% have no validity because while they may prove right for Emma on any given day, they do not hold up long term or within the larger autism population.

Richard and I have a running joke about my desire, my need for theories.  When we are confronted with any new behavior from Emma, Richard will look at me and say, ”And your theory is?”

The beauty of having theories is, autism remains an enormous question mark and so the most impractical of theories hold weight if for no other reason than because they are difficult to prove wrong.  There is so much more we do not know than we do.  The other thing about theories is they give us  (me anyway) hope.  Hope that we’re moving forward.  Hope that maybe this line of thinking is going in the right direction.  Hope that the theory will lead to another theory, which in turn will prove to be true, leading us to a cure, a cause, something, anything…  No matter how crazy, the theory stands until proven otherwise and with autism that may be for a long time.  It’s something, anything, to go on amidst the great expanse of unknown.

Richard usually leaves the theorizing to me, so I was surprised when he said to me last night, “I have a theory.’

“Really?” I said looking at him to be sure he wasn’t making fun of me.

“Yes,” he said.

“Great!  Tell me more.” I said.

“Emma is doing great. “

“And your theory is?” I prodded.

“That is my theory.  She’s doing great.  The other day she and I were walking down the street.  I passed her and stepped off the curb to hail a taxi, but she didn’t see me.  She looked around, her eyes got really big and then she said something, I can’t remember what.  But she was scared and didn’t know where I was.  I called out to her – Emma!  I’m right here!  When she saw me, she cried out – There’s Daddy!  There’s Daddy!  I found you!  That’s never happened before,” Richard paused.  “She was really frightened when she thought I wasn’t there,” he said.

Suddenly I remembered when Emma was three and we went to New Paltz for the weekend.  We stayed at a huge rambling hotel right out of The Shining.  Richard and I in one room, the children with Joe in an adjoining room.  At around 2:00AM I heard a door slam, thinking nothing of it I started to go back to sleep.  Five minutes later our door opened and Joe said, “Is Emma with you guys?”  In a panic all of us threw on clothes and began searching the labryinthian hallways calling for Emma.  We split up hoping we might cover more ground that way, I ran to the front desk and reported her missing to the hotel staff.  It was the dead of winter, snow drifts piled up around the hotel, I was terrified Emma might open one of the self locking doors to the outside and not be able to get back in.  She was bare foot with just her nightgown on.  After about 20 minutes when panic had turned to ice – when your body no longer feels it is your own – one of us found her.  It was either Joe or Richard, I can no longer remember, but I know I began to cry in relief.  She was holding hands with some man who worked for the hotel.  He was quietly talking to her – at that time she had almost no language – and leading her back to the front desk.   I was in tears, thinking of all the horrible things that might have happened to her.  But Emma acted as though nothing unusual had occurred.

Richard continued, “Her sentences are becoming more complex, she’s become much more engaged, she talks all the time now and it’s not just because she wants something.  She’s talking to connect with us.  She wants to connect with us.  And except for the other night, she hasn’t wet the bed in almost a month now.”  He looked at me and then added, “She’s doing great.”

I remember when Emma turned four we had a big birthday party for her, hired a musician to come and play the guitar and sing kid friendly songs.  Emma was dressed up in one of her “party” dresses with a tiara on.  She spent most of the party trying to lie down inside of the musician’s guitar case, ignoring all the other children and the music.  I remember plastering on a smile for our guests, at one point I excused myself and wept in the back, giving myself two minutes to cry before returning to the party and pretending everything was fine.  I didn’t fully understand her sensory issues; I hadn’t developed any theories at that point.  I was still in the process of reading everyone else’s theories regarding autism.

“It’s a good theory,” I said to Richard.

“Yup.  I like it,” he said.

M

I took Emma whitewater rafting today, while Ariane attended a seminar. Emma asked me to go rafting a few days ago, so I booked it for today and we slathered on the sunscreen. We went rafting last summer, all four of us, with Nic and Emma riding in the front of the raft, getting soaked and laughing like crazy. Nic was attending day camp today, so he didn’t join us. Just me and Em.

I assumed that Emma would want to ride in the front again and asked the guide to accommodate us (and perhaps prevent a meltdown if she was denied her preferred seat selection). The guide said sure, but when we climbed in the raft Emma wanted to ride in the middle instead. I was surprised and a little disheartened to be honest, thinking she had lost her gung-ho enthusiasm.

It was a gorgeous, crystal clear, blue-sky day. The river was running fast with lots of great rapids. Emma sat in the middle of the seat in the middle row. I was behind her to the left, the guide in the stern to her right. In the formerly coveted front row was a mother and father and their daughter Sydney, who looked about three years younger than Emma, but who of course, was talking like she was three years older. They were all laughing and screaming and squealing as they got soaked to the bone in the 40˚ mountain-fed water — acting pretty much like Emma and Nic and Ariane and I did when we rode together last summer.

Emma sat silently for most of the hour long ride, looking around, or maybe not looking around at all. Maybe just staring off in space. It’s hard to tell. I tried to get her more engaged and excited by alerting her to upcoming waves and waterfalls, whooping it up. She seemed to get slightly more jazzed, but not enough to laugh or scream like she would on a carnival ride, or like she did in our last raft ride. I got a little bummed but then I thought about how much Nic’s and Ariane’s company means to her — how much she laughs when we all play together.

“She misses Nic,” I thought. “Misses mommy too.”

It made enough sense that I stopped worrying about her autistic detachment and just enjoyed the ride, which was about as perfect as a raft ride could be. When we hit a calmer stretch, Emma started singing and grabbed the strap they gave her to hold, leaning way back until her head was resting on the seat next to me, whereupon I tickled her chin and elicited those squeals I wanted to hear. This was repeated many more times between the rapids.

I asked, “Are you having a good time Em?”

She replied, “Yeah,” with a smile as convincing as the eager tone of her voice.

“Me too Em,” I said, smiling back at her.

I noticed how much I’d been calling her ‘Em’ lately, instead of Emma. For some reason, the thought popped into my head that Em should be her stage name when she becomes a huge rock star a few miles further downstream. Then I thought ‘M’ would be even better, out-abbreviating Madonna and Cher and other one-named divas — assuring her charismatic status with a single letter. I pictured what the T-shirt ‘M’ logo would look like – maybe a graceful art nouveau scroll – then I got concerned that Bette Midler, ‘The Divine Miss M’ might claim trademark infringement.

SPLASH! My daydreaming came to an abrupt end as I got soaked head-to-toe by a big wave that blasted over the side. Emma sat upright, placid and unconcerned in her self-selected (and very dry) seat in the middle of the boat. “Em, you’re not even wet!” I laughed and the guide laughed too.

“Yeah, looks like she picked the right seat after all,” he added.

Mmm hmm. I guess she did.

Zurcher’s Folly

Yesterday I asked Emma, “Do you want to go to the indoor pool?”

To my surprise she answered, “No.”

“Do you want to go for a walk?” I asked.

She said nothing, which could mean she wanted to or it also might mean she didn’t.  It could go either way.

I needed to be more specific.  “Do you want to go to the cabin?”

“Yes!” She replied.  She ran into the mudroom and grabbed a leash, which she attached to my shorts.  There is a history (as there is with almost everything she does) to the leash.  When she was a toddler, she became absolutely terrified of dogs, all dogs.  We would explain to her that the dogs wouldn’t hurt her and anyway they would be on a leash.  The only way she could be convinced to go on a hike was if she could hold the leash.  Over time that led to putting me on a leash and now it is a given that the dogs run freely, but I am on a leash that Emma holds and occasionally tugs on if I am not going quickly enough or conversely, am going too quickly to force me to slow down.  In any event, it works.

Off to the cabin we went, the dogs racing around fighting over various sticks they found along the way and Emma and I leashed together.

The cabin, one room, no hot water, no electricity, a wood burning stove and fireplace, was nick named “Zurcher’s Folly”.  My immediate family built it log by log and at the time, my father, in particular wondered if it would sit unused.   In the 1970’s the ranch had no houses on it, just fields, shrub, irrigation ditches some beaver dams, herds of elk roamed through each winter, bears and coyote took over in the summer.   The only structures were a barn and the ranch house at the edge of the property where a revolving door of people lived in return for taking care of the irrigation ditches, sometimes boarding horses on the land.

Since the cabin was built various family members have slept in it.  During a brief break between colleges I even lived in it for four months, packing my food and water in, sitting out on the deck looking out onto the Rockies and contemplated life.  The cabin has always held a special place in my heart, a place my family built with their own hands and hard work, a place of solitude, removed from everything else.  Unless an airplane flew overhead one would not know what year it was.  We go out to the cabin at least once every time we come to Aspen.  A pilgrimage of sorts, it is a reminder of what is important in life and what we all love about being in this part of the world.

My two children have been going out to the cabin ever since they were born.  So it was with a certain degree of excitement that Emma and I made our way through the grass and fallen trees before rounding the bend and caught our first glimpse of the cabin’s roof.

Emma immediately began to run.  After I’d unlocked the door, she dropped the leash and fell onto a mouse dung covered platform, which serves as one of two beds.  We stayed there for a few hours, me rereading the journal we keep where everyone who has visited the cabin over the past thirty plus years is encouraged to make an entry, and Emma singing and dancing.

On the way home Emma grabbed the leash once again and tugged on it.

“What?” I asked.

“Go to the indoor pool,” Emma said.

“But it’s too late now, Emma.  We have to go home and get dressed for the picnic we’re going to,” I said.

Emma pretended to cry with an exaggerated facial expression.  Sometimes this leads to Emma actually crying, what begins as a kind of joke can soon turn into the real thing.

I began to sing, “We can’t go to the indoor pool.  We’re going to a picnic.”

Emma picked up where I left off, “I want to go to the indoor pool,” she sang, then looked at me.

“We can’t, we can’t, we can’t,” I sang back.

Then Emma sang, “Tomorrow, tomorrow, tomorrow.”

We went on like this making up verses and melodies, sometimes overlapping each other, sometimes stopping mid “verse” until the other picked it up.

“I could hear you two singing all the way up the trail,” Richard said when we eventually returned to the house.

“Wasn’t that great?” I asked.

“She’s doing great, Ariane,” Richard replied.

And he’s right.

She is.

Cutie

Ariane and Emma were just dancing in the bedroom, no music, just a lot of finger-snapping and hip shaking. She was so cute, laughing like crazy the whole time, rocking back and forth, proud of her new-found finger-snapping ability, looking at Ariane and me with her million megawatt smile. Ariane tried to get her to do ‘the bump’ which made her laugh even more, though she didn’t quite get the hang of it…yet.

I’m sure she’ll be bumping all over the place in a few days.

Emma has been singing all the time lately. I take her for rides around the ranch every morning and late afternoon on a small four-wheel all terrain vehicle. She sings the whole time. She likes it when we drive out into an open meadow behind the barn. I like it too because a family of coyotes lives there. They romp around, looking for mice to chomp on, or sit in the field catching some rays. They are pretty fearless so we can drive right up to them until we’re about twenty feet away. They just lay there blinking, mostly ignoring us.

Unfortunately, Emma mostly ignores them too. I’ll shout out over and over, “Hey Emma, look at the coyotes!” but she barely gives them a glance, preferring to keep warbling while I point and shout. This morning, we went into the field and I saw the coyotes up ahead, so I drove toward them. As I got closer, I saw these little brown fluff balls bouncing up and down, their heads barely visible above the tall grass.

“Look! Marmots!” I shouted, pointing ahead, trying to get Emma to watch as they bounded along the tire tracks I’d made the previous day. Then I realized they weren’t marmots at all, they were coyote cubs, three of them, about a foot long from nose to tail. They were so cute I could barely stand it, hollering at Emma, “Look! Look at the puppies Emma! Look at the coyote pups!”

She looked at them without any reaction, still singing away as they ran up to Ma and Pa coyote. They circled around them, then headed over to a nearby irrigation ditch to lay low while we putt-putted past them. “Emma look! Look at the little puppies! They’re so cute!”

Still no reaction, except for a polite glance in their direction, probably just to appease me or get me to stop yelling so she could sing without any more interference. It bummed me out she didn’t care about the cute little pups. I was so excited I couldn’t wait to get home and tell everyone, but she couldn’t care less. I thought about her autism, how hard it was for her to engage with living beings or her surroundings, and I could feel a little air hiss out of the tire of my joyfulness, my hopes deflating because she’s been doing so well and has been so engaged lately, with Ariane and Nic and me and Paula and even her other young cousins who came over for a super-soaker gunfight the other night.

When I got back and told Paula, moping a little because of Emma’s lack of interest and excitement, she said, “Well you know how Emma is afraid of dogs…maybe she didn’t like seeing them or they scared her.”

“Yeah, that’s it,” I thought, looking at the glass half-full. She was nervous, she doesn’t like dogs. Maybe that’s why she didn’t care.

Or maybe she was thinking, “Puppies, schmuppies, they might be cute…but they got nothing on me.”

Dedication to a Rock Star

Ariane arrived in Aspen Saturday with Nic and Emma. I’ve been here for a week already, attending the Literary Festival. Ariane’s mom Paula Zurcher (who I adore!) lives here and we come out about four times a year because we love to see her but also to some extent, because travel anywhere else is too difficult. Emma only eats about nine different food items and she only likes to do physically oriented pleasure activities like swimming and skiing. While I think it’s pretty safe to say that Nic wouldn’t hold up too well on a four hour tour of the Louvre, he would at least enjoy other sightseeing activities and have the thrill of visiting faraway places he’s read about or heard about.

No sightseeing for Emma. Unless the sight is a roller coaster or a water slide, which we fortunately have close by in Glenwood Springs, where Nic and Emma went yesterday. Ariane arrived here in time for the reopening of the newly renovated Paepke Auditorium, named after Ariane’s grandfather Walter Paepke, who founded the Aspen Institute,  Aspen Music Festival and Aspen Design Conference, which is now known as the AIGA – the professional association for design. He was a true visionary, a man who accrued his wealth making cardboard boxes, yet had the audacity to run ads for his company that featured art by Herbert Bayer and sayings by Lao-Tzu  — not one word about boxes.

The auditorium opening was amazing, particulary due to the hugely talented Anna Deveare-Smith who performed a reprise of her impression of Paula and her sister Toni DuBrul having lunch with her, which is profound and poignant and one of the funniest things I’ve ever seen.  She ends her brilliant performance with a story told to her by the Paepcke daughters.  Elizabeth Paepcke, their mother, planted a young sapling in her backyard.  Afterward she said, “It will be beautiful in 50 years.”  At the time she was in her 70’s and when it was pointed out that she would not be around to witness that she replied, “I know.  But others will.”

Paula and Ariane would never mention any of this family history stuff on this blog, but there is a legacy to be celebrated that is inspirational and it impacts Emma as much, if not more, as any of us.  After all Emma is the great grand-daughter of those two powerhouses.

Claudia Cunningham is a dear friend of ours who has been incredibly supportive to all of us – the children adore her and when she stays with us in New York, it’s pajama party time. She and I always talk about our firm, no intractable belief that Emma is going to be a huge rock star (and maybe already is). We don’t say this in a half-kidding tone. We mean it. Emma is a natural born performer. She loves an audience, she has an incredible pitch-perfect voice, a set of pipes that can blow the doors off a taxi cab, a gift for the grand gesture and the big finish. And she is staggeringly beautiful.

Why not? Why shouldn’t she be a rock star? She was raised on Gwen Stefani. She loves singing and performing more than anything – even a carousel ride or an all day trip to the water park, and that’s saying something. Should we not dream big dreams for her? Are we over-reaching, not being practical, have our heads in the clouds, our feet off the ground? Are we kidding ourselves? Are we in denial?

Hey, if a business man from Chicago can turn his father’s lumber company into The Container Corporation of America and then go on to create the Aspen Institute, why can’t a beautiful, talented eight year old autistic girl grow up to be a rock star?  She certainly has a head start by having the ambition and vision in her genes.

Here’s to you Emma! You are awesome. And when you read this ten years from now in the back of your limo heading to a sold out show at Madison Square Garden you will always know we believed in you – and never settled for anything less than encouraging your dreams and fueling your heart’s desire every step of the way.

Rock on!

Emma’s School Bus

Emma came home this evening and said, “Sad.”  This was in answer to my question, “How are you?”

“Why Emma?  What happened?” I asked.

“Emma have to go on the school bus.  Emma make you sad,” she said, frowning and nodding her head.

“What do you mean?” I asked kneeling down so my eyes were on the same level as hers.

“You have to wait!  You have to sit!  Emma cry.  Emma bite yourself,” Emma looked directly at me as she said this.

“Why do you have to wait, Emma?” I asked.

“Want to go to Becky’s class.”

“Did your bus come to school early?”  I asked trying to piece together what Emma was trying to tell me.

“You have to wait.  Want to go to Becky’s class.”

“Did someone tell you, you had to wait?” I asked.

Emma nodded her head.  Shouting and pointing her finger she said, “I told you! SIT DOWN!”

At this point I was more than a little alarmed.  “Emma, who said that to you?”

Emma didn’t answer at first, then nodded her head.  “Yeah,” she said in a sad voice.

These kinds of responses from Emma only highlight how difficult it can be to communicate with her and understand her.

“Did the bus driver say that to you or the bus matron?” I asked, knowing these were the only two people on the school bus.

“Bus driver said – I told you NO!  Sit down!”  Emma said in a loud stern voice.  Then in a quieter voice she said, “Emma cry.  Emma so upset.”

I think it was at this point in the conversation when I went to the computer and wrote an email to our lawyer, ccing Richard and Emma’s head teacher, the head master and social worker.  I have no idea what kind of recourse is available to us and so we need advice.  What I do know is that we have had to deal with the Office of Public Transportation since Emma began going to school five years ago.  Emma’s bus arrives between 7:20AM and 7:40AM to take her some fourteen blocks to her school, which begins at 8:30AM.  When I called to complain about the early pick up time, insisting that it cannot possibly take an hour to drive fourteen blocks even if three of them are cross town blocks, I was told the bus picks up many other children who go to several nearby special education schools before Emma is eventually dropped off at her school.  In other words, Emma is driven around the city for close to an hour.  For years now I have questioned the logic in this and have been:  hung up on, yelled at or told this is the way the route is mapped out and there’s nothing that can be done.

A few years ago I was determined to have the bus change their pick up time from 7:15AM to something later.  For two months I went back and forth with various people at the Office of Public Transportation, sometimes calling three and four times in a single day.  By the time they finally agreed to change Emma’s pick up time the semester was coming to an end and we started anew with a new bus company and driver after the break.  Which is another bizarre thing.  Are special needs children the only ones who have a new bus company, new bus driver, new bus route every three to four months?  How is it that neuro-typical children in New York City have the same bus for the entire school year, often for several years in a row?

In the past few weeks I have noticed when the bus pulls up that there seem to be only one or two other children on the bus as was the case Thursday morning, no other children.  Emma was the only child.  So unless the bus is picking up children after Emma, it is driving fourteen blocks (which should take about ten minutes depending on traffic.  If the bus arrives early, (picks Emma up at 7:25AM drives ten minutes to her school, getting there by 7:35AM) it sits idling outside the school until the school’s doors open at 8:25AM.  Which means (if I am correct) Emma is waiting in the bus alone for almost an hour.

What makes all of this particularly horrifying to me is we put Emma on the school bus and cross our fingers she will be treated well and with respect, she will arrive safely at her school in a timely manner, but we cannot know what really goes on because Emma cannot tell us.  We have to trust.  And at this moment I no longer trust.