Category Archives: Aspen

Let Us All Be Safe

Posted on December 20, 2012 by | 8 comments

My favorite memories of Christmas are those spent at my grandmother’s house in Colorado when I was a little girl.   Every morning I would wake to see the snow covered mountains outside my bedroom window and snuggle deeper beneath the warmth and weight of the woolen blankets on my bed.  The smell of freshly baked orange buns and cinnamon rolls filled the air.  I grew up in Northern California not far from the Pacific ocean, so snow was a novelty and cause for great excitement.  The thrill of being in the mountains in Colorado during Christmas was something I anticipated with great excitement and impatience.   My grandmother always bought my sister and I a dirndl, the traditional German dress, to wear on Christmas eve, while my father, who was Swiss wore a pair of black leather lederhosen with white socks embroidered with green foliage, worn with black velvet slippers and a black or red cashmere turtleneck sweater.  Picture the Sound of Music with Christopher Plummer as my father and me as the youngest child, Gretyl and you get an image of how we looked on Christmas eve, though the similarities pretty much stop there.

When I had my two children I had an idea that I would dress them in lederhosen  and a dirndl, and over the Christmas holidays I would stay up late making yeast breads of various kinds and baking them early the next morning so that my children could have similar memories.  However this never came to be, though Em would probably love wearing a dirndl as she loves dressing up, just as I did when I was her age.   But as a parent I’ve learned that many of my memories do not need to be repeated, that my children will have their own memories and that they do not match mine is as it should be.  I have come to see that this is a good thing.   I had so many ideas about what it was going to be like to be a parent and almost all those ideas have proven wrong in the best possible way.  Letting go of my ideas about how anything should be has been a great gift, not just in parenting, but in life.  I did not come to this easily or without a fight.  And I still forget this truth often.

But I am grateful when I remember.   There is so much I cannot control.  In fact the only thing I have within my control is my own behavior.  I keep coming back to that over and over again.  I cannot control other people’s memories or behavior or prejudices or actions.  The only person I have any control over is me.  For today, let me behave well.  Let me be kind, loving and generous.  Let me give more than I take.  Let me help more than hinder.  Let me be the parent my children need and not the one I thought I should/would/was supposed to be.  And let us all be safe.

December 2009

xmas family-09

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Belly Go Bang-Bang

Posted on August 21, 2012 by | 22 comments

We are flying back to New York today.  Last night as I was packing Emma called out for me.  “Mommy!  Mommy!”  Em has only just begun to do this – call our name if she wants us or is wondering where we are.  It’s such a small thing, but every time she does it, my heart skips a beat.  I’ve even caught myself holding my breath, waiting to see if she’ll do it again.  It brings me such joy.  “Mommy!”  she called, then waited to hear my answer.  “Hey Em!  I’m downstairs!” I called to her.  “Mommy’s downstairs,” I could hear her saying as she came down to find me.  (Another interruption. I know, but I can’t help it.)  The fact that Emma came downstairs to find me is another thing that is fairly new.  I could hear her footsteps coming down the stairs.  “Have to go see Mommy nurse,” Emma said as she plopped into a chair near me.

“Oh no Em.  What’s wrong?”

“Belly go bang-bang,” Emma said, bending over and holding her stomach.  (This is what Em typically says when she’s about to throw up.)  “You cannot punch.  Have to go to the hospital.  Go see hospital nurse.”

I looked at her and went through the following thought process – Oh shit.  Could it be her appendix?  What side is she holding?  No, she’s holding the middle of her stomach, this can’t be her appendix, but what if it’s something serious?  An ulcer, a tumor?  Em doesn’t usually complain about aches and pains unless it’s serious.  I then calculated how long it would take to drive her to the hospital, how long we would have to wait, how long it would take to get an x-ray, and then see an actual doctor to tell us the results…  Finally having run through the entire scenario I decided I needed more information.  

“Em.  Where does it hurt exactly?”

She pointed to the middle of her stomach.  “Hurts here.  Emma’s sick.  Take temperature?”  I felt her forehead, which felt fine.  “I’m cold.  Emma has to stay home.” She wrapped her arms around herself and then said, “Emma can’t go to new school.”  She frowned and pouted, while nodding her head.  “I know, I know.  Emma’s sick.  Emma has to stay home with Mommy.”

“Oh Emmy.”  I reached my arms out to her.  She came over to me and rested her head on my shoulder.  “I know.  Emma doesn’t feel well,” she said.

Just as she said this Richard’s voice could be heard calling out, “Hey Em!  Want to go for a ride on the 4-Wheeler?”

Em jumped up from the chair and called back, “Yes!”  Then raced out the door and bounded up the stairs.

Anxiety.  Stress.  Fear.  And that’s just what I’m feeling…  For Em it’s got to be even more complicated.

Em on the 4-wheeler

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Posted in Aspen, Autism, mother/daughter

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A Conversation in the Car

Posted on August 14, 2012 by | 12 comments

Because Em has just brought in the timer and set it for ten minutes, this will be quick!  Kind of like speed posting.  (Post on Markram interview will have to wait yet another day!)

I posted the following conversation on Emma’s Hope Book page on Facebook last night.

Driving home from the swimming pool. Nic and Em in the back seat. 

Nic: Em stop it.

Em: Cha, cha, cha

Nic: Mom! Make her stop. She’s doing that just because she knows how much it annoys me!

Em: Cha, Cha, Cha

Me: Turning around to monitor the situation  Okay, Em. What are you doing?

Nic: She’s trying to bug me!

Em: Grinning  Cha, cha, chocolate milk!

Me: Oh my god, that’s hilarious. Richard! Putting my hand on Richard’s shoulder.  Did you hear that?

Richard: What? What happened?  Looks in rearview mirror.

Em: Laughing  Cha, cha, cha, chocolate milk

Nic: She just changed it so you guys wouldn’t make her stop!

Em: Leaning toward Nic, gets right in his face  Cha, cha, cha, chocolate milk!

Nic & Em begin laughing hysterically.

Not only was the above conversation noteworthy because this type of interaction between Nic and Emma is not typical, but it was also worth mentioning because of Em’s increased interest in word play.  I see this in her desire to play Duck, Duck, Goose where she comes up with different word associations.  Sometimes, as in the case of “China boat, china boat, ocean!”  I’m not clear what the word association is, but I no longer doubt that there is one.

Emma eating her cake

Cloud cover over the Rockies

Walter and friends

Paul

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It’s A Man’s World – The Cabin, Outhouses, Peeing & Bladders

Posted on August 10, 2012 by | 20 comments

I have the bladder of a camel.  Only now that I think of it, this may be factually incorrect as I’m not certain camels really do have exceptionally large bladders, for all I know, they just pee where ever they are because they can, and that I’m confusing this with the fact that they go for long periods of time without drinking water, but that first sentence has a certain power to it and it gets the point across.  Okay, moving right along here…

You may wonder why I bring this up.  You may be thinking, this is not the sort of post I am interested in reading.  You may be thinking I don’t care about camels or bladders in general and particularly not hers and anyway what has this got to do with autism?  Or you may be thinking – Oh DO get on with it.. or you may be heading over to google because now you want to know all about camels, or you may be..  okay, okay.

Allow me to explain.  Both my children have, it appears, inherited my ability to not pee for inordinately long periods of time.  I can also go for long periods of time not drinking any liquids, coupled with my excruciatingly slow metabolism I could basically out live anyone should I ever be stranded somewhere, like a broken elevator, where there was access to neither.  (Oh I know.  Welcome to my mind.)  This ability to go long periods without having to pee comes in handy: long car trips, aversions to using public restrooms, and sleepovers at our cabin.

I’ve mentioned our cabin before.  It’s a rustic, one room log cabin, which my family built (literally) in the late 70’s.  It has no electricity or running water.  There is a sink with cold water piped in from the creek that runs nearby, but I think we turned that off and since no one lives in the cabin, it’s not something we bother with.  My father dug and built an open sided outhouse just up the mountain.  The outhouse is far enough away that you definitely do not want to try to go there in the middle of the night or at any time of the day or night during the winter because of the snow drifts, unless you’re wearing neck high gators.  Trust me, post-holing up the mountain at 3AM, while trying to locate the outhouse because you forgot to bring a flashlight (and toilet paper) in below zero temperatures to pee is not a good idea.  I speak from experience.

Emma LOVES the cabin, as do I and Richard, who couldn’t quite figure out the allure the cabin held, was converted last summer when he had his first sleepover there.  Nic…  not so much.  Every time we come out here to stay with my mother, it’s a given that we will have a sleepover at the cabin.  Emma anticipates this event days in advance.  “Sleep, wake-up, sleep, wake-up, sleep, wake-up, sleep, wake-up, have sleep over at the cabin!” she will say upon our arrival and before we’ve even had a chance to unpack.  “Yes!” one of us will confirm, while Nic looks at us with a look of Please-tell-me-I-do-not-have-to-go-too on his face.  (That kid has way too much attitude for a twelve-year old.)

I think I look forward to sleepovers in the cabin as much as Emma does.  Last night was our designated sleepover night.  After unpacking our things, sweeping out mice droppings, cobwebs, dead wasps, opening the windows and airing the place out I realized I hadn’t peed before leaving my mother’s house.  “Hey Em, do you have to pee?” I asked, figuring I’d take her with me, since I was going to make the trek to the outhouse anyway.  “No!” Emma said emphatically.  So off I went while contemplating the positioning of the outhouse, its considerable distance from the cabin, how inconveniently located it was, how Richard AND Nic have never even used the outhouse, how only a man would build an outhouse this far away and while it was certainly positioned in such a way that one could appreciate the view as one sat in it, how many people were seriously going to do that when it was freezing cold or in the middle of the night?  No, I concluded, this was the sort of outhouse only a man would build and then never use.  And then I bushwhacked my way back to my family.

Which brings me back to my bladder and the ability I, and both my children, have  in not needing to relieve ourselves for hours on end.  It’s a gift, pure and simple.  One that I was particularly grateful for last night, knowing that not only would Emma not require me to accompany her up the mountain at some ungodly hour, but that I would not need to go either.

It’s important to contemplate these things.

Bucks – there were three of them, but I was only able to capture two, the third is just to the right.

View of our ranch

Emma heading up to the cabin

View of the Rockies from the cabin’s porch

Em heading home

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Fears Reduced to Nothing

Posted on July 10, 2012 by | 13 comments

Even though Emma and I traveled all day yesterday to get back to New York City, even though all kinds of things went through my mind as we spent the four-hour layover walking the entire length of the Denver Airport THREE times, in search of the ever elusive Nestle’s Chocolate milk, because no other chocolate milk will do as far as Emma’s concerned, even though I have a number of things I could say about all of that, I’m not.  Instead I’m posting these photos taken our last day and night in Aspen.

Because it was so wonderful to witness Nic and three of his friends being so great with Emma.  Because the last photo in particular piggybacks on, so beautifully to yesterday’s post about all my fears regarding Emma and neurotypical kids.  Because so often fears have nothing to do with reality.   And because I need to be reminded of that.

Emma on the Hunt’s trampoline 

A young buck in the field right outside my mother’s house

Emma,  the Hunt boys, Nic and Jack playing “Dead Man, dead man”

 

Emma, Nic (doing a flip), Ethan and Jack 

Emma was intent on jumping on the trampoline with Nic, the Hunt boys and their friend Jack, but none of them wanted to go.  It was already dark out, it had been raining, the trampoline was soaking wet, they were having fun rough-housing, it was unanimous, not one of them wanted to go.

Emma:  You have to ask.  Nicky, do you want to go on the trampoline?

Nic:  No, Em.  No. I don’t.

Emma:  Ethan do you want to go on the trampoline?  Yes?  Or No?

Ethan:  No.

Emma:  Say YES!

The boys start laughing.

Emma:   Yes, you do want to go jump on the trampoline.

Ethan:  Looking unsure, but smiling at Emma.  Well…

Emma:  C’mon, let’s  go!

And they did.  They all traipsed outdoors in the dark and they had a blast.  Emma was ecstatic.

And so was I.

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The Endless Parade of What Ifs

Posted on July 9, 2012 by | 22 comments

Emma and I are leaving this…

 

and returning to this…

without Richard and Nic.  I know.

Crazy, right?  Except that Emma is going to day camp.  A camp she adores and has been going to for the past four years.  A camp for neurotypical children, run by a man who welcomed Emma and urged us to let her attend four summers ago.  Each summer he gives me updates on how she is faring.  Joe will shadow Emma as he has the last three summers.  I will write and get work done for my business, before heading to Jerusalem for the Icare4Autism conference at the end of July.

This Thursday Emma and I are going to Fire Island to stay with my dear friend, Bobbie for the weekend.  She and her family have rented a house on Fire Island for the summer and invited us out several months ago.  Emma has been talking about going since April.  And while Emma is excited and can’t wait to go, I am filled with trepidation.  Because along with Bobbie and her two children, one of whom is Emma’s age, there will be another family too.  I have never done this, spent an extended period with a neurotypical family, forget TWO neurotypical families.  It will be just me and Em, with no one to help out if things start to go badly.  It is a testament to my friendship that I was able to accept Bobbie’s kind invitation.  I have spoken to her at length about some of my fears.  She has a vague idea of what I’m talking about.  But it’s vague at best.

What if the other children don’t include her?  What if they do include her?  What if she wants me to spend the entire time in the cold ocean?  What if she takes off all of her clothing and runs through the house naked?  What if she makes strange noises and whips her string around?   What if the other children make fun of her?  What if they say things to her that hurt her?  What if they pretend she doesn’t exist?  What if they talk about her in front of her?  What if I’ve turned away, even for just a second when this is done?  What if she wants to play “duck, duck, goose” and they tease her or laugh at her for wanting to?  Will I be able to remain calm if any of these things happen?  What if I don’t have the words to explain that they need to appreciate her?  What if I can’t find the right words to describe how amazing she is if they’d just put aside what they’ve been taught to expect from someone?  What if?  What if?  What if?

Why do I think in these terms?  Emma is Emma.  Let me take a page from her book of self acceptance.  She is who she is and who she is, is pretty f@#king fabulous.  I do not need to worry that Emma will behave in a cruel or manipulative way to another child.  I don’t have to worry that she will gossip or whisper behind another child’s back or knowingly exclude a child.  She will not bully or lie.  She will not play favorites or tell secrets.  Emma will not play tricks on any of the other children or make them feel badly about themselves.  It’s not in Emma’s nature to tease or ridicule.  She isn’t capable of behaving in hurtful ways to others.

I’d be lying if I didn’t admit to worrying.  Emma is different and truthfully, so am I.   I have never felt completely secure in these kinds of situations.  I have never felt fully at ease in groups.  I have always felt slightly apart from.  As though everyone else got the same script, but the script I was given was to a different play with different characters and in a different place.  It’s been this way, long before I had children.  I feel most comfortable with people who are a bit “quirky.”   One of the things I love about communicating with Autistics is that I don’t have to second guess anything.  If I don’t understand something I say that, I don’t have to pretend.  There aren’t any hidden agendas.  No one’s trying to socially outdo the other.  There is a directness and an honesty that I appreciate.  No one is going to talk about the weather or if they do, it’s because it’s somehow impacting them in a meaningful way.

My friend Bobbie and I have known each other for more than twenty  years.  We have been through a great deal together.  She’s one of those friends who asks questions instead of giving advice.  She has listened to me go on and on about Em and autism and she has followed Emma’s progress, and mine too.  She has been there for me, applauding me, cheering me on and when I’ve asked for it, given me her opinion.  When I think of her, an image of an extended hand comes to mind.  She is there for me.  She always has been.

So I’m taking a chance.  Whatever happens it will be memorable.  And who knows, we may even have a really nice time.  But regardless, I will have pushed past my comfort zone by trying something new and this time, Emma is leading the way.

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A Sleepover, a Storm and Our “Adventure”

Posted on July 6, 2012 by | 7 comments

Emma loves going to our cabin.  It has become a tradition to spend the night there at least once during any given trip to Aspen.  Yesterday was our designated “sleepover” night and Emma was beside herself with excitement.  We packed backpacks and some bags up, put them into the front of the 4-wheeler and set off.  This is our equivalent of taking a fully equipped camper out to a campsite and calling it a “trek.”  I made a number of derisive comments about our lack of adventure (aka laziness) while Richard and Emma ignored me.  At one point Richard stopped the 4-wheeler and said, “No one’s stopping you from walking, you know.”  Which pretty much shut me up.  Until we ran into this –

Richard, not one to be easily deterred, proceeded to put the 4-wheeler in reverse in an attempt to go around the tree branch, and in doing so went up a steep incline and over a large boulder, while almost flipping it.  After much excitement (aka me yelling in a hysterical voice, “you’re going to flip it!” causing Richard to say, as one wheel hovered a full foot off the ground, “you know, you’re not exactly helping.”  Eventually he brought the 4-wheeler to a stop with all four wheels planted firmly on the ground (much to my relief) and we abandoned it.  “Well you get the best of both worlds,” Richard remarked, as we hoisted our backpacks and bags (some filled with Emma’s books) on our backs.  “Now you get to walk.”

When the cabin came into sight Emma, carrying the bag with her books in them, began to run.

“It’s the cabin!”  Emma yelled as she bounded up the steps.  We settled in, put the screens into all the windows, swept up the cobwebs and made up the beds, while clouds began to roll in over the mountains.  A number of red-tailed hawks flew overhead calling to each other, or at least that’s what I assumed they were doing.

The rain came first preceded by a smell I cannot describe, but one that I recognize as being the forerunner to a storm.

Lightening and thunder followed.  The rain came down in sheets.  Emma stayed inside.  She peered out the window and made loud crashing noises.  “It’s scary,” she said.  “I don’t like it.  Mommy come.  Sit together.”  So we did.

But eventually she felt safe enough to go sit next to her dad on the porch.  Together they watched the storm.

Within an hour the storm had blown past and Emma was happy.

By 10:00PM all of us were asleep.  Emma slept until after 8:00AM.  This was noteworthy as her usual waking is 6:00AM.  Reluctantly we packed up and made our way back to where we’d abandoned the 4-wheeler.

When we got back home, where Nic and my mother were I said, “I bet you guys were worried about us during that terrific electrical storm!”

My mother smiled and said, “No.  Actually when it began to rain we said to each other – Boy am I glad we stayed home!”

They have no idea what they missed.

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Huffington Post, Life and What’s Really Important

Posted on July 4, 2012 by | 8 comments

My piece on the Aspen Ideas Festival has just been published on Huffington Post.  Click ‘here‘ to read.  I wrote a great many drafts before finally submitting the post that has been published.  It was a long night of writing and rewriting until finally I knew I couldn’t write about the Ideas Festival without writing about my grandfather, but that too, made me uneasy.

The truth is I have a great many feelings about my grandparents and the various institutions they created and left behind here in Aspen.  Mostly I am awed by Grandfather’s vision and determination to see his vision through, while also aware that my feelings have little to do with anything.  I never knew my grandfather, he died the year I was born.  However I did know my grandmother, Elizabeth Paepcke.  As a child I thought all grandparents were like mine.  I assumed my experience was everyone’s.  I don’t remember when it dawned on me that this assumption was incorrect, but it was around that time that I also learned having famous grandparents came with other assumptions about me and my family that had nothing to do with our actual lives.

“Friends” became tricky.  People wanted to be “friends” because of an idea they had and not because they actually wanted and liked who I was.  “I” was often inconsequential in such interactions, it was the idea of being close to someone else they were after.  That makes for some odd interactions and can be disconcerting, a kind of objectification of another human being, but something we, in a culture of celebrity adoration, often do.

When I began social “networking” I felt horrified by the things others suggested I do to help my business.  It felt false to me.  I found myself going home at night incredibly depressed.  I would lie awake and wonder where was I in all of this?  My desire to get my business off the ground could be seen as self promoting in a way that other people were not accused of.  So began my process of trying to untangle myself from two people who created organizations and institutions that have had a longstanding impact on a great many people and following my own passions and interests.  I don’t always get it right, I still get caught up in trying to sort out what it is I need and want to do and what I believe others want from me.  It’s a balance, but like everything, its progress and not perfection.

Last night Emma came to me with the keys to the 4-wheeler in her hand.  When we got outside and turned on the ignition, it began to rain.  Not a light sprinkling, but a downpour.  “Em, are you sure you want to go for a ride?  We’re going to get soaked,” I told her.

“Yes!  Drive on the 4-wheeler with Mommy!”  Emma said, without hesitation.

I remembered a time when I was very young, standing at our front door and looking out at the rain.  I told my mother I wanted to go swimming.  I remember she laughed and said I couldn’t go swimming because it was raining, which made no sense to me.  As I remembered this, I zipped up my hoodie, took my glasses off and said, “Okay Em, hang on!” and put the 4-wheeler in reverse, before roaring off down the ranch road.   Emma clasped her arms around my waist and lay her head on my back as the rain pounded down on us.  It was bliss.  As we headed back to the house, completely soaked, I thought Em is going to be okay.  And then I amended that thought and said to myself, Emma IS okay.  I felt such a surge of relief, I began to cry.

I’m bombing down the road, with Emma clinging to my back and humming, in a torrential downpour, crying, soaking wet, and feeling euphoric.

These moments of pure joy shared with another human being, that’s what is important, everything else pales.

Happy Fourth of July!

View of the Rockies taken from the ranch while on the 4-wheeler

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It Finally Happened!

Posted on July 3, 2012 by | 21 comments

The word autism was mentioned during one of the presentations I attended. Patricia Kuhl, PhD presented on “The Child’s First 2000 Days” where she spoke of that critical period, those first 5 years of life, when the brain has its single biggest growth spurt.  She cited some studies done on tri-lingual and bi-lingual children, showing that critical period of growth is sustained for a longer period.  She spoke of how children respond to humans, the mother’s voice, and how technology should not be used in the first two years of life.

Patricia Kuhl

And then she said the word “autistic.”  She spoke about the need for more research, how in those children the mother’s voice was not sought, in fact it seemed to cause discomfort.  She spoke for about two or three minutes about studies being done with autistic children and then continued with the rest of her presentation before opening it up to questions from the packed room.  Hands flew up and suddenly there was the man with the autistic child asking for more information about technology’s role in teaching autistic children.  Then there was someone else with a question about language acquisition and autism.

I was sitting in the last row and usually do not ask questions during these discussions but wait until after the talk to approach the speaker.  But I couldn’t help myself.  Up went my hand, was she aware of Henry Markram and his Intense World Theory for Autism and if so, what did she think of it?

But though she’d heard of him, she wasn’t familiar with his theory.  Still, I was pleased that someone had included autism in the hundreds of discussions and presentations even if for just two minutes.  And it got me thinking…

If you could put together a series of discussions on Autism presented at a festival such as the Aspen Ideas Festival, attended by some of the wealthiest and most influential people in the country, where the mainstream press is well represented, who and what would you want to see and hear?  A couple of people wrote in the comments section yesterday and it was exciting to hear them.  I’d love to hear more from anyone who cares to weigh in.

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Where’s Autism in the Aspen Ideas?

Posted on July 2, 2012 by | 37 comments

Over the past four days at the Aspen Ideas Festival I watched Lu Chuan‘s movie, City of Life and Death, about the massacre of the people of Nanjing,  heard the wonderfully inspirational Jane Shaw talk about Our Moral Imagination, saw a film clip of Lixin Fan’s Last Train Home, a documentary about migrant workers trying to get home to see their families and Louie Psihoyos‘ latest, yet to be named, documentary about  “an unlikely team of activists who come together to solve humanities biggest problem… ”  I have heard about the evolving interface between mankind and machines, the evolution of design and why theatre and the arts matter.

The most interesting sessions have been those that talk about either values or the arts.  Leigh Hafrey’s discussion What is “Values-Based Leadership?” and Jane Shaw’s Our Moral Imagination as well as  Elaine Pagels, Who Wrote the Book of Revelation – and Why Do People Still Read it?   and Theater That Matters with Anna Deavere Smith, Julie Taymor, Gregory Mosher, and Oskar Eustis were all provocative and interesting.

As much as I have enjoyed this year’s festival, I was saddened to see there was not a single presentation that had anything to do with autism.  In fact the word “autism” was only spoken once in the many sessions I attended and that was in reply to a question asked during the presentation by NPR entitled, “A Fish Tale”: Is Lying Okay?  The NPR journalist who covers neurology, Jon Hamilton said, “People with autism have a terrible time lying, which is why they have trouble in society.”  There were some mutterings of surprise in the audience and then everyone moved on.  In fact the conclusion of that presentation seemed to be that lying is necessary and therefore part of our evolution as a species, which seemed like an amazingly bad idea.  It makes me all the more hopeful that Henry Markram’s Intense World Theory for Autism is correct.

Enjoy this photo montage of the highlights.  When I began taking photographs of Pervez Musharraf, I was actually followed by two secret service, lending a cloak and dagger feel to the whole adventure!

Pervez Musharraf

Barbra Streisand

Katie Couric

Jane Shaw – Dean of Grace Cathedral

Louie Psihoyos – Director of Academy Award Winning Documenary, The Cove

Emma (my favorite “important person”).

 

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Career, Parenting, Autism and Cultivating a Moral Imagination

Posted on June 29, 2012 by | 8 comments

I’m attending the Aspen Ideas Festival from early in the morning until late at night.  Richard and I have joked that the Aspen Ideas Festival is summer camp for adults, minus the swimming, boating or water skiing activities.  As I am there almost constantly, Emma really misses me.  “Go with Mommy?” Emma asked yesterday morning as I got ready to attend a 7:45AM session on “Our Moral Imagination” with Jane Shaw, introduced by Anna Deavere Smith (I’m giving myself a shameless plug now) who was wearing Ariane Zurcher Designs 18 Kt gold earrings with Australian pearls.

For the Aspen Ideas Festival I am wearing my journalist’s hat.  “Come with me and Granma, Em.  She’s going to drop me off.  Do you want to come?”

“Yes, Granma and Mommy and me, go together,” Emma said, pointing to each of us.

“Right, but I have to go to work, so I’m going to get dropped off and then you and Granma will come back up to the ranch, okay?”

“Yes,” Emma said, but she looked sad.  “Mommy has to work,” Emma added.

I love working.  I’m lucky to have writing and design both of which I love.  My ambition is something I have only recently allowed myself to really appreciate or even recognize.  For years I felt the pull of guilt when I went off to work, and while I still do at times feel that familiar tug, I no longer condemn myself for loving what I do.  Loving work does not take away from the love I feel for my children.  It isn’t either/or.  It’s not as though enjoying a career means I do not enjoy and want to also be with my children.

I spent yesterday going to a number of sessions, the first beginning with the inspirational Jane Shaw who is a British Anglican priest and scholar as well as Dean of Grace Cathedral in San Francisco.  She spoke about empathy and asked, “Can we really command someone to love?”  Jane suggested art and poetry are doorways into another’s soul.  I immediately thought of nonverbal Autistic, Amy Sequenzia’s poem, Happy To Be Myself.  Jane spoke about empathy which she described as “a deep responsiveness to that which is different from us.”  I thought of my Autistic friend Ib, whose compassion and empathy is a lesson all humans would do well to learn.  And I thought of Emma.  I thought of my journey from trying desperately to find something that would change Emma’s brain to responding to the little girl who is right in front of me.   A journey that has taken me from striving, to being.

Throughout the day, Jackie texted me photos of Emma.

Emma goes bungee jumping

Emma on top of Aspen Mountain (notice the pose!)

Emma goes bowling

Even when I’m working, I carry both my children in my mind.  I think about them, I wonder what they’re doing.  I hope they’re okay.

“How are we motivated to think about what it’s like to be another person?” Jane asked early in her presentation.  I thought about how for me, it began with tremendous pain, which led me to search, find and finally listen to Autistic adults.

This photograph looking west to the ski area known as Buttermilk, with Highlands to the left was taken from our ranch road when I took Emma out on the 4-wheeler last night.  Or as Emma calls it, “Emma’s red 4-wheeler.”  And she’s right.  It is hers.

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Autism, Huffington Post and Getting Away to The Cabin

Posted on March 27, 2012 by | 5 comments

As I wrote yesterday – please be sure to read my most recent post on Huffington Post.  It is the introduction to a series of posts written by autists throughout the month of April.  Share the link, tweet, “like” and comment!

Last Friday Emma said, “Mommy, I want to go to the cabin please.” And since going to the cabin isn’t nearly as arduous as it sounds, we decided to go for a sleepover Saturday night.

It’s “rustic” but sleeps four comfortably and the kids love going there, particularly Emma.

Emma grabbed the heaviest pack and began tromping through the snow.

Once we arrived, she wasted no time getting comfortable.

Despite the fact it was broad daylight and there were lots of weird insects flying around, many of them inside the cabin.  Nic took enormous pleasure in shooshing all the bugs and moths outside, while Emma, Richard and I sat together in the rocking chairs.  Point a camera toward Emma and she makes her “say cheese” face.

We tried to get Emma to look at the clouds. They were like nothing I’d seen before.  As though each had it’s own rainbow.

But Emma was much more interested in sitting on the porch railing with her brother.

And looking out at the mountains.

When we woke up the next morning, Emma said, “Go back to Granma’s house, eat breakfast, go swimming in the indoor pool, make cake, pack and go back to the cabin!”

“But we haven’t even left yet!”

“Go now,” Emma said.  Then as she was packing up, she said, “Come back later.”

Makes sense to me.

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Buffalo H & Buffalo J

Posted on March 21, 2012 by | 4 comments

When we are in Aspen we stay on our ranch.  It is no longer a working ranch, but my mother and her sister built houses on it, separated by a stretch of dirt road.  You can’t actually see either house when inside one or the other, which is wonderful as each have views of the mountains, but they are close enough that you can walk from one house to the other.  Or as is the case with the children, they run.  Except in the summertime when one of us will yell after them, “Remember if you see a bear, don’t run!”   This comment usually elicits a dramatic display of bravado with the children demonstrating how they would raise their arms while yelling loudly until the bear wandered off.  We are hoping the bears are still hibernating, though it’s been so warm they may be out and about, it’s hard to say.  Yesterday afternoon, Emma and Nic went over to their cousin’s house and spent many blissful hours playing.

At one point Emma stopped, looked up at the enormous buffalo head situated in her cousin’s living room and said, “Buffalo head!”  Joe, who was standing nearby confirmed that it was in fact a buffalo head.  To which Emma replied, “Two buffalo heads.”

“No, Em.  Not two.  Just one.”  Joe pointed to the buffalo’s head.

“Two,” Emma said matter-of-factly.  Then she pointed to the house that was once owned by my sister, just up the road and said, “Buffalo H and,” she pointed back to the buffalo above her, “Buffalo J.”

I realize this story requires some explanation – my cousin’s name is Jennifer and the last name of the people who bought my sister’s house is Hunt.  When my sister moved out, she left the buffalo head hanging above the fireplace and when the Hunts moved in they decided to leave it there.  As we are good friends with the Hunts, who also happen to have two boys Emma and Nic’s age, we have been over to their house many, many times.  Hence Emma’s designating their buffalo as “Buffalo H.”

Excuse me while I bask in the glow of my child’s brilliant mind.

Neurotypicals =  The art of small talk, Kim Kardashian and Snooki.

Autistics = Einstein, Mozart, Nietzsche and Isaac Newton.

‘Nuf said.

Buffalo J.

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

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Greeting Granma

Posted on March 20, 2012 by | 6 comments

Friday we arrived safely in Aspen, or as Emma described it, “We have to take two planes, then get to see Granma!”  Despite my reservations about not having any seats together, people were kind and accommodating, several happily moved for us and we ended up all together.  I didn’t have to plead with anyone, or explain; I think this was a first!

Upon our arrival Nic and Emma ran ahead, first Nic flinging his entire body against my aging mother with all his might, so happy was he to see her and then Emma, more timidly perhaps, but with no less excitement wrapped her arms around her granma and hugged her.  We have been through this routine dozens and dozens of times, taking two airplanes, arriving in Aspen, my mother always there at the airport to greet us and never has Emma greeted her granma like this without at least some prompting.  My mother looked up at me with her beautiful smile and said nothing.  She didn’t need to.  Emma was now holding one of her arthritic hands and exclaiming, “Oh, Granma hurt her fingers!”  But instead of then racing off or letting go, she continued to hold her granma’s hand, tenderly examining her arthritic fingers, the same misshapen fingers my grandmother had, that as a child, I too had found so fascinating.

Later as Richard was unpacking and I was setting my computer up in the adjoining bedroom, Emma came in and said, “Going to go outside.  We can go outside and talk. Talk with Mommy.”  She then opened the door to the porch directly outside our bedroom and sat in one of the chairs.  “Mommy sit here,” she said, pointing to the other chair.

Obediently I did as she directed and we talked.  Emma talked about how high it was from where we were sitting to the ground downstairs where she could see the dogs playing.  She talked about how I was sitting with her in the chair next to her.  She walked the length of the porch and talked about how she couldn’t reach the dogs, nor could she reach the ground downstairs.  We discussed distance and the difference between being inside and outside and then she stood in front of me and said, “Now I’m going to sit on Mommy’s lap.”

Which she then did.  And I wrapped my arms around her, while we looked out at the Rocky Mountains, jagged and covered in snow and breathed in the crisp mountain air together.

The next morning, outside with the dogs, who were behind me looking at Emma.

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

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Dining Out

Posted on December 21, 2011 by | Leave a comment

Dining out, as a family, is something we rarely do.  Which is all the more incredible since we live in New York City, a city known for it’s fabulous and wide range of restaurants serving food from every place in the world.  The few times we’ve eaten out, we would prepare and pack Emma’s meal and bring it with us.  We have taken Emma to only a few restaurants in her life because the whole process of trying to keep her occupied while we tried our best to enjoy “dining out” wasn’t easy and frankly, took the pleasure out of it.  But now, since Emma has become more willing to eat a few more foods, we told her we were thinking of going to a restaurant to eat.  We gave her the choice of coming too or staying home.

“Go together!” Emma said.

There was a certain degree of finality to her voice when she said that, so I said, “Okay.”  We decided to go to Boogies, the local diner and kid friendly restaurant here in Aspen.   Boogies is upstairs from a clothing store, so it’s brightly lit, has loud rock and roll music playing and lots of families with little kids running around.  I went over the outing with her, just so she understood we would not bring any food for her to eat, that she would have to find something from the menu.  Having a vague idea of what Boogie’s menu offers, I told her some of the foods she could have – hot dog, hamburger, chicken fingers, mac and cheese, grilled cheese sandwich.

When we arrived at the restaurant, we were able to get a large table in the back.  “Chicken nuggets and grilled cheese sandwich?” Emma said, in her questioning way that isn’t really a question, but just sounds like one, while nodding her head.

“You want both?” I asked.

“Yes!”

Joe, Richard and I looked at each other, shrugged and ordered her what she asked for.

“And apple juice?” Emma said.

Nic, meanwhile, ordered a hamburger and one of their famous chocolate milkshakes.  They always bring their milk shakes in a tall glass lathered with whipped cream and a cherry on top.   The metal container they make the milk shake in is brought too, holding the excess shake and a long handled spoon.  Emma saw the whipped cream and immediately tried to scoop it off Nic’s drink with her fingers.

“Em!  That’s Nic’s milk shake.  You can have one too, if you want.  But you can’t take his whipped cream,” I told her.

“It’s okay Mom.  She can have some of the whipped cream.” Nic offered his sister a spoonful, which she greedily grabbed from him.

“Do you want your own, Emma?”

Emma vigorously shook her head no and took a sip of apple juice.  Then she blew bubbles with her straw into the glass of apple juice, spraying herself before we could stop her.  When the food arrived, Emma dug into her melted cheese sandwich, ate most of it and tried a tiny bite of the fried chicken.  Each time she ate or drank anything Nic would look over at me with an expression of astonishment, while I nudged Richard, whispering, “Look!  Look at Emma!”

It was wonderful, all the more so, because my mother was with us too, making it a truly fabulous dining experience together, with the whole family.

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

“You

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