Category Archives: Stem Cells

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.

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.

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.