Tag Archives: autism and parenting

Emma’s older brother, Nic

Posted on June 6, 2011 by | Leave a comment

Yesterday I took Nic and Emma to a relatively new carousel on the refurbished park along the Hudson River.  It’s unlike other carousels in that it has a wide variety of animals, fish and insects instead of the traditional horses one usually sees.  Emma likes to ride on the Atlantic Sturgeon, with the Unicorn and Wild Turkey coming in second and third.

Emma riding on the unicorn

“I’d ride on the hyena or the coyote,” Nic told me when Emma chose the Atlantic Sturgeon for a second time.  “What would you ride on?”

“I’d have to go with the Harbor Seal,” I answered.

“Yeah, that would be a smooth ride,”  he said.  We watched Emma go around and around.  Every now and again she’d use the waist strap to tap the sturgeon, as though she were urging it on.  “Mom?”

“Yeah Nic?”

“So how do you blow bubbles with your gum anyway?”

“Okay, here I’ll show you,” I said, taking a piece of gum from his remaining pack.

“Emma blows huge bubbles.  I just don’t get it,” he said as I chewed the gum, trying to get it to the right consistency.

“Well she chews a lot of gum…”

Nic interupted me, “Yeah, I know, because of her ears.”

“Exactly, so she’s had a lot of practice.   But here, watch.”  I tried several times to demonstrate how to blow a bubble, which is quite a bit more difficult to explain than one might think.

After several attempts Nic said, “I think it’s a girl thing.”

We watched Emma for awhile on the carousel.

“Hey Mom?”

Yeah, Nic?”

“It’s weird.”

“What is, Nic?”

“I mean Emma’s so good at some things, but so bad at others.  Like she can blow bubbles and taught herself to swing and she’s really good on the scooter, but she still can’t read or write very well.  I think it’s interesting,” he said.

“Well, you’re right Nic.  There are things that are much easier for her and then lots of other things that are really hard.”

“But I don’t get it.”  He looked at me expectantly.

“Yeah.  I know.  It’s difficult to understand.  It’s the wiring in her brain.  It makes a great many things really, really difficult for her.”

Nic kept trying to blow bubbles with his gum.

“Does that make sense?” I asked.

“No,” he said, shaking his head.  “Not really.”

“Yeah, I know.  It’s really hard for us to understand.  There’s so much more we don’t know about autism than there is we do.”

“Mom?”

“Yeah Nic?”

“Do you think I’ll ever be able to blow a bubble?”

“Yes.  You just have to keep practicing.”

“But you don’t let me chew gum that much.”

“Yeah, that makes it harder.”

Nic stared at me with a little half smile on his face.

“Hey, you get to do all kinds of other things that Emma doesn’t get to do, and the only reason we let her chew gum is because of her ears.”

Nic kept grinning at me.

“What?”

“Nothing, Mom.  Nothing.”

For more on Emma’s journey through a childhood of autism and her older brother, Nic’s experiences along the way, go to: www.EmmasHopeBook.com

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Bonding

Posted on May 16, 2011 by | Leave a comment

I gave birth to Emma in a birthing center here in Manhattan.  It was a relatively “short” labor being just shy of 20 hours, compared to Nic who took more than 38 hours to appear.  Okay, it wasn’t remotely “short”, but that was the word everyone kept using when predicting how long it would take, and compared to Nic, it was certainly short-er, but that’s really the only way you can use any version of the word “short” in describing my labor with either of my children.  Richard caught Nic, as he likes to say, as if he were a football being hiked during a long, boring and tedious game.  The first hands Nic felt were Richard’s.  The first face he became aware of was Richard’s and they bonded immediately.  Not so with little Em.

First of all the labor was more painful or maybe it was just that I wasn’t as exhausted and so I can remember it better.  Richard was comforting me and holding my shoulders when I began to push.  When Emma appeared the midwife was the one pulling her from me before placing her onto my chest.  Richard missed that “father/daughter” moment of connection those first few seconds of her life.  Later, when he didn’t feel the same kind of innate bonding he’d had with Nic, we assumed it was because he wasn’t there to catch her.  For years I felt badly that I’d asked him to hold me and as a result he wasn’t able to be there to hold her.  But as with so many things in life – it’s easy to look back and see things differently when you know the outcome.

When Emma was diagnosed it kind of closed the book on the whole – I should have let Richard catch her during her birth – it was the one bit of guilt the diagnosis freed me of.  As time went on we saw how Emma seemed aloof around friends and other family members.  We came up with ways to rationalize her seeming indifference.  She was independent, she liked doing things on her own, she was her own person, she knew what she wanted, had a mind of her own, etc.  These were all things we said to ourselves and each other as we tried to make sense of Emma during those early years.

Yesterday Emma said to me, “Go swimming at the Y with just Mommy?”

“Yeah.  Okay.  Just the two of us,” I agreed.

Later when we returned home I said to Richard, “I’m not sure why Em wanted just me to go with her.  She pretty much ignored me every time I tried to engage her at the Y today.”

“You’re the only one she’s ever really physically bonded with, Ariane.  You’re the only one whose lap she likes to sit in.  You’re the only one she really likes to be held by.  It’s always been that way,” Richard said.

This morning as I was getting ready to take Nic down to his bus, I heard Emma giggling and Richard laughing, “Emma!  What are you doing?”

I turned around to see Emma climbing from the window sill onto her dad’s shoulders, unprompted, of her own volition and utterly happy.

Everything changes.

For more on Emma’s journey through a childhood of autism and our attempts to keep up, go to:  www.EmmasHopeBook.com

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Some Mornings

Posted on April 27, 2011 by | Leave a comment

Some mornings are just not meant to be woken to.  This has been such a morning.  Emma lost her balloon string.  A yellow piece of string that was once attached to a balloon.  Emma doesn’t care that the balloon is no longer attached, in fact, she isn’t even remotely interested in the balloon.  It’s the string she cares about and this morning it went missing.  No amount of reassurance, no amount of talking to her about it, no substitutions would quell the storm that emanates from Emma when she is upset.  Emma was beyond upset.  Emma was heart broken, in a panic, utterly stressed out, screaming, snot pouring from her nose, shrieking “I need help!   Mommy!  Mommy!  I need help!” over and over and over again until the words become some sort of hysterical mantra.  It is at this point that she begins to script.  “I know baby.  You threw it!  You cannot throw it.  I need help.  Mommy!  I need help.  Baby, baby you can’t throw it!”  And on it goes, repeatedly, between tears and screams and stomping of feet and then when it all becomes too much she bites herself or hits herself in the face or punches herself in the leg or arm.  And we run around trying to find the damn balloon string or mutter under our breath that we should have thrown the stupid string away days ago, because this isn’t the first time she’s lost it and no substitution will do.

Last weekend when Richard offered her an identical balloon string she said, “Other one.”  And walked away.

No there will be no substitution and all that can be done is to barricade oneself mentally from the screams, try to keep ones patience and get her ready for the school bus because if we miss that, we have a whole new set of problems.  Once we were downstairs the tears and scripting continued.  But eventually, eventually she calmed down enough to play “bat” with me.  We talked about the bus and school and later Joe and study room and how it was going to be a good day.  It got off to a rocky start, but it would be okay.  And somehow, at some point Emma seemed convinced that this just might be true.

For more on Emma’s journey through a childhood of autism go to:  EmmasHopeBook.com

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Aspen, Work & Richard

Posted on March 15, 2011 by | Leave a comment

I am in Aspen working, having left Richard and the children back in New York.  Emma’s ears continue to hurt her.   Richard had to take her to an ear specialist yesterday afternoon.  The last few times I’ve called I could hear Emma in the background crying plaintively, “I need help!  Ears popping!”.

I don’t know what it’s like to be a father leaving his wife and children behind for work, but I can tell you as a Mom, it feels pretty awful.  I feel terrible that Richard is left coping with the myriad details required, the organizing of both children, dealing with one who doesn’t feel great, getting referrals to doctors, arranging appointments, ensuring Nic is taken care of, juggling IEP meetings, seeing Emma’s neurologist, rearranging his own work schedule to accommodate all of the above.

And meanwhile here I am in Aspen.  Even when you tell someone you’re there to WORK, you can see the little smile on their face, “Uh-huh,” they usually respond.  “It’s gotta be tough.”

So no, one cannot expect much sympathy, and if I go on about how tired I am, I can expect little other than a slight nod of the head followed by the slightly sarcastic, “Yeah, I bet.”  Sometimes they’ll even add a barely audible, “Ski much?”

Despite the fact I have no intention of skiing, am working everyday most people find any utterance even remotely sounding like a complaint, tiresome.  Which makes Richard’s response all the more remarkable.

“Of course you must go,” was his reply when I told him about some of my commitments here.  There was no need for discussion.  It was a given, I would go, Richard and the children will join me in another five days.  I am grateful to him for that.

When I call then and hear Emma’s little voice whimpering and Richard’s exhausted voice telling me, “Everything’s fine,” I know he’s putting on a brave front.  I know how exhausting it is to hold down the fort in the other’s absence.   I know he’s worried about Emma, as am I.  The difference is he’s the one who is making and keeping the appointments with all the various doctors, not me.  And no matter how hard I am working, no matter how many hours I put in, it doesn’t compare to what Richard is doing back in New York.  As I write this I can look out my window and gaze upon the Rocky Mountains jutting up, the blue sky contrasted against their snowy peaks.  My concerns for Emma are muted by physical miles, I cannot hear her distress except when I call.  I am not in the trenches with Richard.

I am lucky, very, very lucky.

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The Isolation of Autism

Posted on March 2, 2011 by | Leave a comment

Much has been said about the isolation accompanying autism.  Because of the problems autistic children have in communicating, isolation is often an issue.   Even those who are verbal, often have problems with repetitive language, are unable to engage in “small talk” or cannot move fluidly from one topic to another, thus separating them from their peers.  We are not able to discuss with Emma how she feels about not having a group of friends she hangs out with.  She isn’t able to tell us what it’s like for her to live in our world.  These are conversations we hope to engage in with her one day, but at present, they are not something we can have.  The best I can do is imagine and speculate what it must be like for her.

However there is another isolation I can speak of and that is the isolation felt by the parents of an autistic child.  It is a feeling Richard and I have grown accustomed to.  It comes with the territory.  Most of the time it doesn’t bother me, but every now and again, when something happens which makes me feel particularly sad, I have no one other than my husband whom I feel I can turn to.  (I am fortunate to have that, as many people do not.)  Soon after we received Emma’s diagnosis, Richard formed a support group.  There were anywhere from 12 to 5 of us who met once a month.  Richard was hit harder with the sense of isolation than I was, because as a man, it was much more difficult for him to find other men who were willing to sit through the discomfort of seeing their friend upset, knowing there was nothing they could do to fix it.  Women have an easier time with that, it seems.  In any case, Richard formed a support group, where he was almost always the only man.  We met for a few years and then people fell away over time because of work demands or they moved out of the city and eventually the whole thing dissolved.

Emma’s school has a monthly parent group.  I attended it a few times years ago, but it was moderated by a well meaning and no doubt, extremely capable young women, who did not have an autistic child or any children for that matter, and I felt very much an outsider, not a great feeling to have in a support group and so I stopped attending.  Over the years I have come to rely on a group of women with whom I meet once a month.  We’ve been meeting for going on six years now, incredibly, and they have been there for me since the beginning.  I am incredibly grateful to this group of women, but even so, there are days, like today when I do not feel I can call even one of them.

Sometimes, not often, but every now and again, I am overwhelmed with what I can only describe as grief.  Grief that Emma has not progressed more, that anything resembling a main stream school is out of the question for her, grief that she is not able to carry on a conversation that a two year old is capable of having.   Suck it up, I tell myself.  There is always someone out there who has it worse.  Do something for someone else.  Pick up the phone and call someone who is struggling.  Ask them if you can help.  So I do.  These small, tried and true actions are all I know to pull myself up and out. It’s not that any of these things will change anything, it’s that by doing these things, by reaching out to help someone else, I am changing my own despair, even for a few minutes.  There’s a whole world out there of suffering.  Sometimes helping someone else, is the best I can do.

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Tiny Steps

Posted on February 23, 2011 by | Leave a comment

I keep waiting for the kind of miraculous progress you only find in movies or works of fiction.  Every now and then I’ll hear a story about a child who has recovered (or as they say in the field – lost their diagnosis) but these are so rare they fall into the category of fantasy in my mind.  Every now and then, when I find myself longing to wake up one morning and have Emma jump into bed with me speaking in full sentences, a look of cognition unmistakable on her face, I must remind myself of all the steps, the tiny steps of progress she makes everyday.  It isn’t just about making myself feel better, it’s about charting her progress.

Last night she went over to the phone in the kitchen.

“Hey Em.  Do you want to call Daddy?” Joe asked.

“Call Daddy?” Emma responded in her typically enigmatic way.

“I’ll say the numbers,” Joe prompted.

Emma dutifully found the right buttons to push and held the receiver up to her ear.  “Hi Daddy!”  Pause.  “Hi Daddy!”

I stood next to her, wondering if she’d gotten the answering machine.

“Hi Daddy!”  Emma said again.

I tried to listen to see if I could detect Richard’s voice.  I didn’t hear anything.  “Did he answer?” I asked Joe.

“Yeah.  He picked up.”

“I’m fine,” Emma said.

Silence.

“Yes.  Glenwood rec center.  Swimming, ice skating,”  Emma said into the phone.  A clear response to the question – What did you do today?  “Sledding, skiing…”

“No, you didn’t ski today,” I interjected.

“No skiing,” Emma said.  “Sledding.”

By this point I had my ear next to her cheek and could hear Richard’s voice.  “I miss you, Emmy,” I heard him say.

“I miss you, Daddy,” she said.

The conversation went on a bit longer, but I was so overcome by the fact she’d said – I miss you Daddy – in response to him saying, I miss you.  Usually when Emma repeats us she repeats us in total.  In other words she would say – I miss you Emmy.  An exact replica of his sentence to her.  But she didn’t do that.  She responded appropriately with the appropriate pronoun.  I was impressed.

I know this is small, but to us, it’s HUGE.  A huge step for Emma to express emotions regarding another person.

Later I said to Richard, “That was completely unprompted!”

“Really?” he asked.

“Yes!  I wasn’t prompting her to say anything,” I told him.  “She said it all on her own.  It’s the Aspen air out here,” I said, referring to our theory that there’s something in the air out here, which seems to inspire an uptick in her language and cognition.  We have seen it every time we come here.  Blame it on Aspen, blame it on all the exercise she gets out here, blame it on anything, we’ll take it.

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Emma’s “Study Room”

Posted on February 22, 2011 by | Leave a comment

Every morning, since we arrived in Aspen, Emma wakes up somewhere between 5:30 – 6:00AM and comes into my bedroom to snuggle and sing songs.  At around 6:30AM I will say, “Ready to go to work?”

“One more minute,” is Emma’s usual response.

After a few minutes I’ll say, “C’mon.  Let’s go!”

“Time to go to the study room!” Emma will say in a sing-songy voice.

Emma’s “study room” is the room adjoining my bedroom with a desk, my computer, a fax/scanner/copier machine and a twin bed, where one of the children often sleep if they don’t feel well.  Though neither of them has chosen to sleep there for over a year now.

We go into Emma’s “study room” to work on writing individual letters, sequencing, and typing.  The letter “s” is difficult for Emma and she still needs occasional wrist support, but otherwise her handwriting is coming along beautifully.

“Good!” she’ll say after she’s made a particularly good looking “e”.

“Beautiful!” I’ll agree.

“No,” she’ll say after trying to make a “c” but the lower part ended up below the line.

Sometimes she’ll self correct and I’ll say, “No.  It’s okay Em.  That’s a fine looking “t”.

“Okay,” she’ll say.

Typically we then move on to typing.  I hold up a series of letters, which she then points to the corresponding letters on a sheet resembling the pad on a computer.  Same formation, same positioning of letters except they are all in lower case, just like the letters I hold up.  The letter “q” she confuses with a “p’, but other than that she’s doing incredibly well.  Then we move onto the computer itself, which is much trickier as the letters are all in upper case and she must translate them from the lower case letters I hold up to the correct upper case letters on the keyboard pad of the computer.

Finally we end with a series of sequencing exercises using colored tiles and letter tiles. Sometimes I have to cover the letters or colored tiles and she must remember what they were.  If they are random, say – red, white, yellow – she often can’t remember what they are.  But if the colors are in a pattern – yellow, black, black, yellow – she almost always gets them right.

“No, no, no,” she said, yesterday when she put the wrong tiles down, after I covered the four tiles.

“Try again,” I said.

“There,” she said when I lifted the paper covering the four tiles and she saw she’d gotten them right.

As the sessions go on they become more difficult, until eventually we will move on to reading.

We almost always end our sessions with quietly sitting opposite each other for a few minutes.  Emma calls this “deep breathing time.”  Except we don’t breath deeply, we just sit, hands in our laps and stare into the mid distance.  After we’ve sat for a few minutes, I’ll put my hands on Emma’s shoulders and say, “Good!”  She always gives me a huge grin, before running off.

A year ago, I would have been dismayed, had I been able to peek into the future and seen Emma doing these exercises.  Which just goes to show, I should never try to predict the future and never underestimate what she is capable of.

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Pain

Posted on February 14, 2011 by | 1 comment

When Emma was a toddler, about a year old, maybe two years old, she had a little scratch from the tag on the back of her shirt.  It seemed so insignificant, hardly worth noticing, except that Emma screamed as though her entire body had been scalded.  I remember at the time thinking it strange, that her response seemed too extreme for such a tiny scratch.

There were other incidences which also caught my attention for the very opposite reason.  She would stub her toe or get scratched by a cat or have a huge knot in her hair, none of which would cause her to even gasp.  When she grew older I was terrified of the day when she would start to lose her baby teeth, convinced this would set off such cries of pain, with no remedy other than to wait until the tooth came out of it’s own accord.  However this was not to be the case.  In fact, Emma grabbed hold of the loose tooth and simply yanked it out of her mouth, dropping it to the ground, as though it were nothing more than an irritant, like a pebble in ones shoe.  Evidently her school bus is littered with her baby teeth as she would board the bus in the morning with a loose tooth only to come home and announce, “Threw it away,” when asked what happened to her tooth.

“Where?  Where did your tooth go?” we would ask.

“On the bus,” Emma replied matter-of-factly more than once.

About six months ago Emma was reported to have said to Joe, “Joe!  Pull it out!” and then opened her mouth so that he could remove the offending tooth, which he didn’t, so she did.  Joe was able to intercept the tooth before she was able to toss it in the gutter.

I don’t think we have more than two or maybe three of Emma’s baby teeth, despite the fact she’s lost at least eight or more by this point.  We tried to tell her about the tooth fairy, but she was utterly uninterested and wandered away before we had finished.  The idea a “fairy” would come to gather up her loose teeth, leaving behind money, was not a concept Emma had any use for.

Last Friday Joe called to tell me Emma was whimpering and saying her ear hurt.  I immediately called the pediatrician then looked at Emma’s throat for signs of strep.  Sure enough there was the tell tale white spot on one side of her throat.

“No say AHHH!” Emma said, pointing at her throat.

“Well, let’s wait and see what the doctor says, Em.  Does your throat hurt?”

“Yes.  Ears.”  Emma replied.

“Your throat and your ears hurt?” I asked.

“Yes.”

I remembered the last time I’d taken her to the pediatrician because her ears were bothering her, only to be informed that in fact she had strep, again.

Upon our arrival I proudly stated that I was sure it was strep and went on at length about how I couldn’t believe Emma had somehow contracted strep making this the third time since the school year began.  The pediatrician smiled and nodded her head as she examined Emma who kept insisting “No AHHHH!”  Meaning she didn’t want to have the doctor swab the back of her throat.

“Just ears,” Emma said repeatedly.

The instant the pediatrician looked in Emma’s left ear she looked up and said, “Raging ear infection.”

“What?” I asked, thinking I’d misheard, so convinced was I that Emma had strep.  “But what about that white dot on her throat?”

The pediatrician shrugged.  “Could be food, not sure, but her ear is bright red.  An ear this red should be extremely painful.”  She said looking at Emma.  “I’m surprised she isn’t complaining more.  It’s a really bad infection.”

I watched as Emma played cheerfully with the doctor’s stethoscope.  Observing her, one would never know her little body was host to a horrific ear infection.

“So that’s it?” I asked, still unable to believe she didn’t have strep.

“Yup.  Antibiotics will clear it up, but give her children’s advil in the meantime, that ear has got to hurt,” the pediatrician said.

By the time I had procured the prescription and the children’s advil and returned home, Emma was running around, playing happily.

“Hey Em.  How do you feel?  Does you ear hurt?”

“Yes.” Emma said before racing off down the hall with Joe in hot pursuit.  Shrieks of laughter could be heard.

One of autisms defining features is what specialist call sensory integration issues.  They can range from hypo to hyper and are often a mixture of the two.  In Emma’s case she has both and we still cannot anticipate which one we are witnessing.

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Ups and Downs

Posted on February 9, 2011 by | Leave a comment

I was reading an article this morning on RNA interference when the following quote by a pharmacology professor caught my eye – “A lot of excitement for RNAi was irrationally high to begin with, and now is irrationally low.”

It reminded me of how I have felt each and every time we have gone to South America for one of Emma’s stem cell treatments.  In the beginning I am elated, sure this will be the thing that causes her to crawl out from beneath the fog of her autism.  Then after we’ve returned home, I am guardedly hopeful, watching, waiting and after a few more weeks I’m convinced the whole thing was an exercise in heartache, stress and worry.

I go from the extreme high of wishing myself into believing this will prove a miracle to the low of believing it’s a complete waste of time or worse.  What I have not managed as well is that whole grey area residing between those two states.  Which is why the brain scans are so essential.  Though I have moments of disregarding those as well.  If I relied entirely on my perceptions, often clouded by feelings, desires, wishes, expectations, I would be making some very poor decisions.

We have been working with Emma on her handwriting and teaching her to type using a program developed by a literacy specialist.  It has proven to be quite an incredible experience.  Emma is now writing legible letters and is able to match two and three letter words.  She is also learning to type on a computer keyboard.

A couple of things I’ve realized:

1) Most written words are written in lower case letters, yet most writing programs teach upper case letters first.

2) All the letters on a keyboard are in upper case, making it very difficult for a child to translate the letter from lower to upper or vis a versa.  Something I had never “noticed” before until we began working on typing with Emma.  She is getting the hang of it, but it’s been interesting.

3) The letters Gg, Qq, Ee, Rr, Bb, Dd and Aa are completely different depending on whether they are in lower or upper case.

As I am not a teacher – these rather obvious items I’ve listed are something I had taken for granted until now.  I am amazed how well Emma is doing.  She seems to understand the same letters can look different and yet are the same.   But, and I do need to say this, Joe and I have been working with her for a number of weeks now and I was feeling discouraged that she wasn’t progressing as well as she should.  She still has trouble writing the lower case letter e.  K is often difficult and she makes her lower case s too big.  We needed to tape one of my sessions with her to send to the literacy specialist who developed the program (Joe did a great job taping) and Richard was the one who transferred it into a file we could email.

When I got home last night Richard said, “I edited the tape.  Emma’s doing really well!”

“Do you think so?”

“Oh yeah.  It’s amazing!”  Richard’s excitement was so authentic, it made me wonder why I wasn’t “seeing” it.

“Really?” I asked again.

“Yeah!  She’s doing great!”

That conversation was one more example of how two people living with the same child can view that child’s progress very differently.  My expectations are something I need to constantly keep in check.  If I look at the tape of Emma and how she is moving forward in a number of ways, I can see the progress and it’s impressive.

If I then compare Emma to what Nic was doing at her age, I am back in despair.

“So don’t do it,” a friend of mine said the other day when I related this.

And that’s really the point.  Living in the grey is sometimes a lot harder than one would think.

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The Washing Machine

Posted on July 20, 2010 by | Leave a comment

“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.

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Theories

Posted on July 16, 2010 by | Leave a comment

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.

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Pancakes

Posted on July 14, 2010 by | Leave a comment

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.

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M

Posted on July 6, 2010 by | 1 comment

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.

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Posted in Aspen, Autism, Parenting, Siblings

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Zurcher’s Folly

Posted on July 5, 2010 by | 3 comments

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.

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Cutie

Posted on July 1, 2010 by | Leave a comment

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.”

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