Tag Archives: autistic

Emma’s Pal Muzzy and the Porkmepine

While Ariane was taking a break, I took Emma for a ride on the ‘four-wheeler’, a small ATV that’s good on the unpaved roads here and the big fields beyond. We like to go early in the morning and late in the afternoon after a long day of swimming, walking, bowling, bungee cord jumping — in other words, all things physical and fun.

On our 4-wheeling adventures, it’s not uncommon to spot a variety of wildlife; deer, foxes, a family of coyotes (with four baby cubs!) and unexpected surprises, like today’s sighting of a large, chubby porcupine who was wobbling around behind the barn. Like most of the animals here, he/she? was fairly inured to human contact, but when we approached within fifteen feet I cut the engine, to see if he might stick around long enough for a good visit.

“Look Emma, see that? That’s a porcupine!”

No response.

He started wobbling in the opposite direction, crawling beneath the barn, which I assumed was his new living quarters from the practiced ease with which he hid away. Before he vanished I pointed to him again and said, “Emma, can you say porcupine?”

“Morepickpine,” she said, or something to that effect.

“No Emma, PORC-U-PINE,” I slowly enunciated.

“Porkmepine,” she replied.

“No Emma, not porkmepine, porc-ya-pine!” I smiled, shaking my head, changing my pronunciation of the second syllable so she didn’t think I was somehow talking about her (“you”) when identifying the animal.

“Porkapine,” she said.

“That’s right Emma,” I said, starting up the engine.

It was pretty funny, a little frustrating and a little encouraging. Frustrating because she still has such a hard time making distinctions in simple labeling. Encouraging because she was at least grasping the distinction between the words “you” and “me” when it came to identifying herself. Most of the time, she still talks like Elmo when she speaks of herself.

“Emma go on four wheeler?”

Sometimes I’ll just nod and answer, “sure Emma, let’s go for a ride.” But it’s better if I remember to correct her and suggest a more appropriate response:

“Emma, you can say, ‘Daddy, I want to go on the four-wheeler.'”

She will usually echo that response and occasionally (very occasionally) remember to phrase a question correctly. She has the same trouble with “you, I, me, she, he.” So we will often correct her when she says “you” when she means “me”, or “he” when she’s talking about a girl, etc.

Later in the afternoon, Joe took her out to play. She insisted on bringing her stuffed animal Muzzy along. See the attached photos Joe took after Emma buckled Muzzy’s seat belt in the car and then strapped him into a jogger, pushing him down one of the local bike paths. This new affectionate attachment to her stuffed monster-animal pal is another very encouraging sign. Muzzy recently accompanied her in a hospital bed, and now that he seems to have fully recuperated, she’s taken him for an outing in the countryside.

Emma may not care much about prickly porkmepines, but she sure does love her fuzzy Muzzy. And that’s just fine with you.

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.

Back Home

We arrived back in Aspen late Saturday night.  Even Emma, who is the world’s best traveler, was feeling tired.  By the time we arrived in Denver, having missed our connecting flight to Aspen she said, “Go see Granma?”

“Absolutely.  But we missed our connection so we have to wait a few hours.  Then we’ll see Granma.”

“Go see Granma?” Emma said again, anxiety creeping into her voice.  Which is her way of saying – NOW!

Concepts of time are difficult for Emma, if not impossible.  The idea something will happen tomorrow is not something she understands.  If one says, “One minute,” she will patiently wait as she knows from the kitchen timer we use, one minute is a length of time she can count.  Beyond five minutes it all becomes muddled.  Emma will often answer the statement, “tomorrow” with “You have to wait one minute.”

To which we respond, “No Emma.  Tomorrow.  Much longer than one minute.”  We might as well have said, “Next year.”

As we had been traveling for the entire day, having woken up at 6:00AM in Panama and were still traveling at 9:00PM, the idea we would catch a flight at 9:30PM and be back in Aspen by 10:15PM did not lessen her anxiety.  Still, Emma was terrific and did not make too much of a fuss.

I took this photo in the Denver airport.  While waiting for our next flight, Emma grabbed Richard’s newly acquired Panamanian hat and put it on her own head.  Muzzy is in her lap and she is holding her cokie.  (Evidently the Ecuadorians are to be credited with making the first hat we now think of as a Panama Hat.)

One of our faithful readers commented last week she had noticed how Emma was making eye contact in all the photos I have recently posted.  She is right.  Of course I didn’t post the dozens of photos I took when she wasn’t looking at the camera, but that I was able to get any photos of Emma looking at the camera is nothing short of miraculous.  And of course my immediate thought has been – is this the stem cells?!  Is it possible her terrific eye contact since she had her second round of stem cells could possibly be due to the stem cells?  Impossible to know, but it is a striking difference.

Friday night Richard and I went to a wonderful restaurant in Panama City – Manolo Caraccole.  It was absolutely terrific with no menu.  The chef wields his magic in a kitchen one can see from the dining area and produces 11 tapas courses which are brought out – one more delectable than the next.  As we were dining, a young American woman walked in with the attending physician who treated Emma the day before.   It was Dr. Hernandez who spoke to us at length, patiently answering our questions, giving us his opinion and generally making us feel calmer about the entire procedure as we waited for Emma to wake up from the anesthesia on both Tuesday and Thursday.  So when he walked into the tiny restaurant we were happily surprised.  The young American woman said, “This is the man who saved my life.”  She told us she had MS and he was the doctor who had taken care of her.  She was overcome with emotion, her eyes filled with tears as she told us about coming to Panama to have stem cell treatments.  She said she had had to stop working and now was able to go back to work.  She was taking Dr. Hernandez out to dinner to celebrate her recovery.  It was a bizarrely serendipitous meeting on our final night in Panama.

We can only hope the stem cells are doing their work in Emma’s small body as I write this.  It continues to be quite a journey.

It’s good to be home.

Panama – Day 5

We are in the clear.  Emma made it through the second treatment with no side effects.  She stayed in the clinic for two hours after the procedure was over to ensure she didn’t develop any complications.  Our biggest challenge was not worrying about her reaction to the procedure, but in keeping her occupied since she was feeling so terrific she wanted to:  swim, go back to the mall, ride on the carousel, find a water slide, go bowling, all of the above.

Emma waiting to have the stem cell treatment.

Emma awake.

I took this photo and Emma said, “Now go back to sleep.”   Then she closed her eyes.

I asked Richard how he was feeling, now that we were through the second round of stem cell treatments.

“It’s strangely anti-climactic and I’m tired.  It’s not as though I was expecting her to begin quoting Shakespeare, but there’s a kind of post-partum depression feeling.”  He stopped talking for a second then said, “Do you feel it too?”

“Yes, very much so.  I feel as though I’ve been given a sedative.”

“And now we wait,” he said.

“Right.”  I said.   “We wait and try to stay in the present.  I think that’s the hardest part in a way, trying not to think about the future with a lot of fantasies and projections.”

A couple of noteworthy things…  Emma’s recent interest in Muzzy, her green stuffed monster is a positive sign.  She brought Muzzy into the operating room both times and used him to express some of her fears and anxiety.  She has insisted on taking him out with her whenever we’ve gone anywhere during this trip.   In addition to her growing affection for Muzzy is the more elaborate pretend play she is engaging in with more frequency.   She has not wet the bed for 18 nights, even has gotten up in the middle of the night to pee on her own without prompting.  Since we’ve been in Panama Emma has been sleeping in her own bed.  All of these things are positive signs!

Panama – Day 4

Emma began yesterday with a long swim.  She has devised a game where she leaps into the pool with a towel wrapped around her waist.  For some reason this strikes her as the height of hilarity.  Then she drags herself, still wearing the towel, out and onto one of the lounge chairs where she sits and announces to anyone within listening distance that in fact, she has just jumped into the pool wearing a towel.  Regardless of the listener’s reaction, Emma breaks into peals of laughter before leaping into the pool again – with the soaking wet towel.

After Emma’s swimming pool escapades, we ventured off to La Vieja – the old city.

Emma in the ruins discovered in 1519, only to be destroyed by Henry Morgan in 1691.

After visiting the Artisnal Market exhibiting local crafts and going to La Vieja museum we drove to a mall where we were told was a carousel and some other children’s rides.  Emma was ecstatic.

However once she had taken four rides on the carousel, we suggested we look for some of the other rides we had been told of.  There were three.   Two, which she was too big to ride in and one, the teacup ride, which she was the right height for but was empty and they wouldn’t let her on unless another child showed up.  Emma took the first disappointment in stride, “Too big,” she said, nodding her head, the smallest frown appearing on her forehead as she tried to reason this out.  But when she was not allowed to ride inside the teacups because of a lack of other children she began to fret.  “Go on cup ride?” She whimpered.

“Yes, but we need to wait until some other children come to ride too,” We tried to explain.

Our explanation was weak and we knew it, but there was nothing to be done.  Joe and I went to plead with the “supervisor” to see if we could convince them to let her ride on it anyway.  They were resolute.  Emma began to cry, “Go on cup ride?  Go on ride.  You have to wait.  I said no!”

“It’s okay Em, we can wait and see if another child comes, then you can go on the ride too.”

Even while saying this to her, the weakness of the argument was all too apparent.  Why one other child should make a difference was not something any of us could explain.  Was there a balancing issue, weight distribution problem?  Who knows, but our Spanish being what it was, even Joe’s fairly good Spanish, would not sway them.  Meanwhile Emma became increasingly distraught.  All the joy from the carousel was now replaced by a kind of frantic, perseverative mindset.  Eventually another child did come along and Emma was able to ride in the teacup.  It was not a joyful ride. It was as though she no longer could obtain any amount of actual pleasure from the ride.   It had fallen into the “must do” category, an action, which must be taken, but with no enjoyment attached.  There was an addictive quality to the desire.  It was as though she were caught in a rut of thinking, nothing could be said or done to quell.

Emma riding in the teacup.

Once the teacup ride was over Emma went back to the other two, which she was too big for and insisted on riding in either of those.

“Ride in train?” She asked, anxiety creeping into her voice.  “You’re too big, you have to wait,” she said.

“Em, let’s go see if we can find the big indoor playground.  You can bounce,” One of us encouraged.

“No.  Ride?” Emma said.

“Emmy, we can’t go on these other rides and only on the teacup ride if there’s another child.”

“Ride in cup?”  Emma said.

Eventually we were able to pull her away and began to look for the indoor playground.  Emma was unhappy and sucking her thumb, clasping Muzzy to her and repeating the same phrase over and over again.  “Ride on carousel?”

“Okay, let’s ride on the carousel,” Richard said.

It was decided Richard would scout ahead to see if he could find the indoor playground while Emma rode on the carousel a few more times.  Once Richard was out of sight, however, a train came by stopping at the carousel.  So we took the train which runs the length of the shopping mall.  Immediately Emma perked up.

Emma in the train with Muzzy & me.

 

Back to the carousel and then to a round elevated platform where Emma made up a game she called:  “Swing game”.

The Swing Game went on for quite some time, with Emma running around the parimeter of the elevated circle with Muzzy as one of us tried to catch her.

Today we go into the clinic for the second stem cell treatment.  We have been preparing her.

Emma:  Take Muzzy to hospital.  You have to put the mask on. Last time.

Richard:   Yes.  Today is the last day of the hospital.

Emma:  Then bye-bye hospital.  Sleep, wake up, go to play swing game!  Go on airplane, go see Granma!

Richard:  Yes, that’s right.  Tomorrow we rest and then Saturday we go on the airplane to see Granma.

Emma:  I’m so excited.

As are we all.

In Panama (Day 1)

It’s the rainy season here in Panama.  We’ve been told even by Panamanian standards this has been an unusually rainy one.  In fact, we just saw lightening and heard thunder close to the condo we’ve rented for the week.  To which Emma said, “Ohhh!  It’s thunder!  So scary.  It’s raining bubbles.   Now go swimming.  The swimming pool’s closed.”

All of this was said quickly without a pause.  I managed to confirm it was raining, but Emma seems to have the entire situation under control.

This morning we go into the clinic and speak with the doctors.  When we were in Costa Rica for round one they interviewed us, video taped Emma and then we went to the hospital to have fluid removed from her spinal column and blood drawn.   I believe this is the protocol for today as well.

When I arrived last night, Emma was sitting at a table in the living room listening to music on her ipod.  She turned and saw me enter the room, “It’s Mommy!  Mommy stay at Granma’s house,” she said.

“Emma!  Hi!!” I said.  I ran over to her and knelt down, “Emma!   I want a hug.”  I put my arms out and she leaned into me with a huge smile on her face.

“It’s Mommy!  Mommy stay at Granma’s house,” she said again.

“Yes, but now I’m here with you,” I said as I held her tightly to me.

“It’s Mommy!”  Emma whispered to me as she hugged me.

“I’ve missed you!” I whispered back.  I stood up with Emma’s arms still wrapped around me and twirled her around.  Emma laughed and wrapped her legs around my waist, gripping me even tighter as we twirled around and around.

It was a lovely welcome to a long day.

Later as we brushed her teeth she pointed to the reflection of me in the mirror and said, “It’s Mommy.”

I pointed to her reflection and said, “It’s Emma!”

Emma laughed.

As I tucked her into bed she said, “Night Mommy.”

I said, “Do you want me to lie down next to you for a minute?”

“Yes!”  Emma said, smiling.

I cuddled up next to her and put my arm around her waist.  She grabbed my hand and pulled my arm around her.  “Emma’s sleeping,” She whispered.

“I love you, Emma,” I said.   I waited for her to say, “So much.”  But she was already asleep.

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.

Pancakes

Emma loves pancakes.  Until recently she was a purist, adamant that the pancakes not contain any other items.  Ours were not the pecan-raisin pancakes or the macadamia-banana pancakes, just pancakes, plain, drenched in pure maple syrup.  One weekend in a moment of elated inspiration I dumped a container of blueberries into the batter only to watch Emma’s face crumple into sobbing tears of despair by my act of betrayal.  I tried, on a few more occasions, to add something to the batter, hoping to expand her limited repertoire of foods.  Each time Emma refused to touch the pancakes and I learned my lesson.  Don’t mess with Emma’s pancakes.

And then we had my cousin and her two girls over for a slumber party one weekend.  We had discussed the “weekend pancakes in the morning routine” prior to their arrival.  When Liesl and Lily arrived they produced a plastic bag filled with chocolate chips.

“We brought chocolate chips for our pancakes,” Lily solemnly informed me.

“Great!” I said.  I looked over at Emma.  “Look Em, Liesl and Lily brought chocolate chips for our pancakes tomorrow morning!”

Emma peered suspiciously at the bag.

“We can make some with chocolate chips and some plain,” I said cheerfully.

Emma said nothing, but there was no mistaking the look of despair on her face.

The next morning we heated up the griddle and the girls and I got out the pancake mix, milk, a whisk, bowl and the chocolate chips.  The girls crowded around, taking turns pouring the milk into the pancake batter and stirring everything together.  I poured some of the batter onto the grill, making sure Emma would have two pancakes before Liesl and Lily dumped most of the contents of the baggie into the remaining batter.  Emma watched in resigned silence.

“It’s okay Em.  I’ve made you some without the chocolate chips,” I said.  “Look, they’re right here.”  I prodded the plain pancakes with the spatula.

When the pancakes were all cooked I said, “Hey Em, how about trying just one pancake with chocolate chips?”

“No!” Emma said loudly in her sing songy voice, edged with panic.

“Okay.  How about one bite?” I offered her the corner of one pancake sullied with a chocolate chip.

“One bite, Emma?”  Emma said, looking as though I’d just offered her someone’s intestine.

“Yes.  Just one bite,” I said.

Emma reached out and took the offered piece, very reluctantly she smelled it, then placed a tiny piece in her mouth.

“Is it good?  Do you like it?”

“Yeah!”  Emma said.  “Okay, okay, one more bite?”  She looked at me expectantly.

“Okay.  Sure,” I said offering her another piece.

Again she ate it.

“Hey Em, how about you take the rest of this pancake and eat it with the Liesl and Lily?”  I said, going over to the dining room table and placing her plate down next to her two cousins.

Emma then proceeded to eat the entire pancake along with the other two plain pancakes.

The next weekend Emma said, “Pancakes with Mommy?”

Yes!  Come on.  Let’s make pancakes,” I said.

“Pancakes with chips?” Emma asked, rooting around the cupboard for a bag of chocolate chips.

“Let’s see if we have any,” I said.  “Otherwise we will go to the store and buy some.”

“Have to get some chocolate chips,” Emma muttered, still searching.  “Here they are!” She exclaimed holding up a bag.

Emma looks forward to Saturday and Sunday mornings with unadulterated excitement and anticipates our pancake mornings by saying on a Wednesday morning, “Sleep wake up, sleep wake up, sleep wake up, pancakes with Mommy!”

“Yes!  We will have pancakes Saturday morning,” I answered.

“Sleep wake up, pancakes with Mommy!” Emma said the other day, hoping to trick me into making pancakes with her on a non-weekend morning.

I was tired and not paying attention,  “That’s right,” I said.

Emma jumped up and down.  “Pancakes!”

Then the realization I’d made a terrible blunder hit me.  I explained why we couldn’t make pancakes; it was a school day, we wouldn’t have time, the bus was coming, etc.

Now it is a given the pancakes we make will include chocolate chips.  Last Saturday morning I asked, “Hey Em!  What about adding sliced bananas with the chocolate chips?”

“No bananas,” Emma said.

On another Saturday I asked, “Should we add some blueberries?”

“No blueberries,” Emma said.  Then offering an alternative she added, “Do you want pancakes with chocolate chips?”

“Sure, Em,” I said.

“Yes, pancakes with chocolate chips!” Emma 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.”