Tag Archives: Aspen

Belly Go Bang-Bang

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

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

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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A Sleepover, a Storm and Our “Adventure”

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.

Two Strangers, Two Responses to Autism

Stranger number one:  A man seated next to me on the flight from New York City to Denver.   He was distressed and upset because of the extensive delays we experienced and assumed he would miss his connection home to Vancouver where his two sons and wife awaited him.  As he spoke to me, he looked over at Emma, seated in the window seat and who appeared to be sleeping, thumb in her mouth, head resting on her horse pillow, a small scrap of her green blanket clasped in her fist.  Her hair fell over her face, covering part of it.  He nodded toward her, “She’s tired, huh?”

“Yes,” I said, looking over at her and smiling.  Emma opened one eye and made a little grunting noise, before closing her eye again.

He asked me if I was traveling alone.  I explained to him that in fact we were all spread out over many rows.  Because of all the delays the airlines changed our seats, giving most of us middle seats, making it impossible to convince anyone to switch with us so that we might sit together.  At a certain point, I took a lapse in the conversation as an opportunity to pull out my book, Representing Autism.

“Are you a teacher?” the man asked.

I told him I was not, that my daughter was autistic and it was a subject I was particularly interested in.

“Ah,” he said, knowingly.  “My eldest son is too.”

He went on to relate how his son had been poisoned by high levels of lead because his wife had drunk tea throughout her pregnancy from a samovar.  This was confusing as, strictly speaking, his description would make his son’s issues lead poisoning and not autism, but before I had time to think of an appropriate response, he told me that because they had him chelated he was now high functioning and that God had blessed him with a child who could speak.   And while I think it’s wonderful many people find solace in “God” I really hate comments like this, where it has to then be concluded that God is not blessing others with things like poverty, starvation, murder.  I know, I know, don’t get me started.  

He then told me his wife contributed to his son’s autism because it was genetic and “the mother carries the genes that cause autism.  That’s why more than 80% of them are boys.”  This last remark was so staggering in it’s complete lack of logic I was thrown into a state of stunned silence.  Then he capped the conversation off with a nod to Emma and asked, “Is she functioning?”

Do NOT say another word,  I pleaded silently, while also thinking,   You have the chance to say something that might change this man’s point of view.  But I couldn’t.  I was too angry and tired, the delays had taken their toll.  I had hit a wall, silently cursed this man and just wanted to escape into my book.  I no longer felt magnanimous or in the mood to offer an opposing view.  I felt hateful, furious and resentful.  I was disturbed by the man’s, seemingly unintentional, but never-the-less confused ideas of cause and blame, not to mention the casual comment about chelation coupled with how his son’s heart stopped twice while doing so and that didn’t even cover the comment about God, which would have taken me down a whole other path.

“Does she speak?” he continued.

“She’s autistic.   Her hearing is actually excellent,” I snapped.  “And I do not speak about her as though she cannot understand.  Her intellect is as sharp as her hearing.”

“Oh!” the man said, taken aback.

All thoughts of offering patient opposing views in a kind tone went out the window.  I pulled out my book, a pen and my notepad and began reading.  End of conversation.  It must be said, this was not one of my prouder moments, but I didn’t have it in me, I just didn’t and it depressed me that so many are so misinformed.

The second stranger was a woman with two small children who asked me, as Emma and I were waiting for the bathroom, if I would keep an eye on her two kids so that she might use the bathroom.  Emma peered with curiosity at her daughter who was four-years old and son, who was not quite two.  “Boy,” Emma said, pointing at the little boy.

“Yes,”  I said, kneeling down.  “What’s your name?”

We learned that the children, Alice and James were also headed for Aspen on the same connecting flight as us.  Their Dad couldn’t go with them, but their Granma was meeting them in Denver.  When Emma and I returned to our seats, Emma said repeatedly, “Go see  Alice and James.  All go together to Aspen.  Go to Granma’s house and play with Alice and James.”

When we found the gate for our connecting flight, there was Alice and James with their mother who proceeded to ask Emma questions.  “What was her name, how old was she, did she have a brother, his name, age, where we were going, etc.  All the questions she directed to Emma and she waited for Emma to answer, even when it seemed she might not.    A couple of Emma’s answers were somewhat cryptic, as when asked what she liked doing when in Aspen and Emma answered, “Make cake.”  But all in all it was really nice to see someone behave in a sensitive manner while respecting Emma’s need to process, giving her the time to do so. It was in stark contrast to the first stranger.

This morning when I told Richard I was posting this piece, I said, “I’m too tired to find the humor.”

“My brain is operating on a case by case, need to know, basis,” Richard replied.

And that remark made me laugh.

English: Looking south from Top of the Rock, N...

(Photo credit: Wikipedia)

Buffalo H & Buffalo J

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

Greeting Granma

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

Dining Out

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.


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


“I Am In Here” – Autism

There’s a terrific new book entitled:  I am in here:  The Journey of a Child with Autism Who Cannot Speak But Finds Her Voice by Elizabeth M. Bonker and Virginia G. Breen.  The title is a line from the poem  Me written by Elizabeth when she was 9.   The story is yet another example of a nonverbal child with autism who was helped by Soma Mukhopadhyay’s Rapid Prompting Method.  Elizabeth’s mother, Virginia has tried any number of therapies with the hope that something, anything will help her daughter.  It is not a story about a cure, but rather a message of hope in the face of continual struggle and perseverance.

Virginia writes about using a three pronged approach in her battle with autism – Mind (academics), body (biomedical interventions and diets) and Spirit (the more difficult concept of something greater than ourselves, which Elizabeth seems to have a solid grasp of.)  The mind, body & spirit concept particularly resonated with me as it was this very idea which captured my grandfather, Walter Paepcke’s imagination when he envisioned a place of contemplation and learning in his creation of what came to be known as the “Aspen Idea” more than 60 years ago in Aspen, Colorado.

I can claim full allegiance to the mind and body portion of this, however I must admit the spiritual piece continues to allude me.  Though a close friend of mine said to me recently that for a person who professes not to believe, I certainly spend a great deal of time thinking, reading and discussing the subject.  She then said, “It’s kind of like the wife who’s husband everyone knows is having an affair.  She’s the last to know.”  When I answered her with a perplexed look, she said somewhat exasperated, “Come on, Ariane.  You’re the most spiritual non-spiritual person I’ve ever met.”

I’m pretty sure she meant that as a compliment.

For more on our journey with Emma through her childhood marked by autism, go to:   Emma’s Hope Book

Em & The 4-Wheeler

Emma on the 4-wheeler

Perhaps more exciting than even the ARC (Aspen Recreational Center) is the 4-wheeler kept up on the ranch.  For those who are not familiar with this piece of machinery, it is a cross between a kind of Hummer version of a motorcycle and an open air golf cart.  My two nephews, Colter and Bridger, are cringing at this crude and citified description of mine, because it is actually an essential piece of powerful ranch equipment used to change sprinkler heads, and to haul a variety of other things.  Things I do not pretend to know about.  To me, it is the vehicle we use to go looking for coyote, fox and other wild life up on the ranch.  Last summer we found a den of coyote pups, so cute(!) whose mom lay basking on a nearby rock, unruffled by our intrusion, she didn’t move a muscle as we rode by within ten feet of her pups.  (I know Colter and Bridger – you guys might want to just shut your computer down at this point – it’s got to be painful to read this description.)

Now that I have thoroughly humiliated my fabulous nephews with my utter ignorance in all things to do with ranching, I will attempt to move on.  When Emma arrived in Aspen the night before last, one of the first things out of her mouth was – “Go on the 4-wheeler?”  Followed by, “Go to DuBrul’s (my cousins’s) house?”

When we told her she couldn’t do either of those things, she then went for her back up list.  “Go see motorcycle bubbles?”  (This requires interpretation as this is what Emma calls the 4th of July fireworks, which we missed this year as we were in New York.

“No not going to see motorcycle bubbles.  Go swimming in indoor pool.  Yeah, go to the ARC.”

When we informed her that as it was almost 9:00PM, this wouldn’t be possible, but promised to take her the following day, she said, “Go to outdoor pool?”  (Meaning the Snowmass rec center’s outdoor saline water pool)

Finally tired of our feeble excuses about the late hour and how everything was closed, she conceded sadly, “Time for bed.”

But the following morning the list was proffered up and there wasn’t much we could say as our excuses of it’s too late, no longer held any weight and she knew it.  So off to the ARC Emma went and then a trip to the grocery store where she was able to procure her favorite chocolate milk from Horizon, before getting the 4-wheeler from the barn.  We were also able to load a bale of hay into the front to carry back to the house to set up with a bull’s eye so that Nic can practice his archery skills.

Bringing hay back to the house for Nic

It’s good to be home with the family!

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

Aspen Ideas

The word “autism” was never spoken at the session of the Aspen Ideas Festival I attended yesterday.  After it was over I wondered if I’d somehow been mistaken and reread the email I’d received .  This is the email I was sent describing the session:

“How to Recognize Happiness  June 29, breakfast,

Happiness as an ongoing state of mind–rather than a fleeting pleasurable sensation–could be recognized by the predominance of positive affects, by an ongoing freedom from inner conflicts that express themselves in obviously tormenting ways, by a sense of inner calmness, and by attitudes that reflect some kind of benevolence toward others, even though in the case of autistic children, all these may not be expressed in the usual ways.”

My guess is one of the speakers was unable to make it and so it became a more general discussion surrounding conflict, suffering and cultivating a practice to help with that.  The moderator was late, having gone for a hike in the woods and found herself lost.  But the Buddhist monk, Matthieu Ricard, director of the Karuna-Shechen a non-profit headquartered in Kathmandu, Nepal, who in France anyway has been given the label of – happiest man on earth – questioned that title, suggesting perhaps this was a difficult thing to test for, given the world’s current population of over 6 billion people.   It was a perfectly pleasant way to spend an hour of one’s morning, especially if one had come to Aspen specifically for the Ideas Festival and didn’t have any expectations. Certainly there is much to be said about cultivating compassion and putting oneself at the service of others.  Just talk to any parent of a child with autism.

What bothers me about all of this is the lack of conversation, the reluctance to feature autism as a worthy topic. It is something I see all the time.  The people, like myself who are talking about it, are doing so because we are parents of children with autism.  Perhaps it’s seen as a downer, after all there’s no cure, we don’t know the cause, so let’s just not discuss it, let’s not have any conversations about it, let’s not even bring it up.  Maybe it’ll go away if we ignore it enough.  It’s got to be such a drag listening to someone who goes on about autism, the statistics, news stories about the rampant abuse of autistic people, it’s intractable nature, blah, blah, blah.  Why can’t I talk about something more cheerful?

Like happiness, for example.

And here’s the thing – actually I can.  In fact most of the parents with children with autism can.  We parents of autistic children have found ourselves elated by a word, a single word coming from the mouth of our child.  It doesn’t take much for us to feel joy.  Our child can hug us and that lone hug is something we remember as though we had received the Nobel Prize.  Maybe, just maybe, we don’t know the cause, we don’t know the best way to treat it, because autism isn’t viewed with the same sort of panic the avian flu received or mad cow disease or any of a number of topics which swept all of us up in a frenzy of terror.

According to the CDC at least 1% of our population has been diagnosed with autism.  That’s over 60,000,000 autistic people world wide.  60 MILLION!  And yet, autism, gets a big yawn.  So here’s an idea, let’s keep ignoring it, let’s all agree not to discuss autism, because what’s the point really?

By the way, just in case anyone’s wondering, I’m the mother of a beautiful little girl who’s Great-grandfather began the Aspen Institute and who’s hope for the future gets dimmer by the second.

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

The Aspen Ideas Festival & Autism

I am going to a lecture at the Aspen Ideas Festival this morning at 7:45AM in the Doerr-Hosier building called: How to Recognize Happiness.  I am going because I’ve been told this session will include something about autism, though if one goes to the AIFestival web site it doesn’t mention autism.  But my source is a good one – in fact she is the one who organized the entire week long program, so I’m fairly confident she knows what she’s talking about.

If you don’t know about the Aspen Ideas Festival, it is a week long summer camp for adults.  Every day is packed with lectures, panel discussions, interviews, readings, film, videos, etc beginning at 7:45AM and ending well into the night, every day for seven days.  I’ve been lobbying for Ideas to include autism in their program now for the past year, so was pleased when I was informed they were doing one talk which would include autism.  I will report back tomorrow.

Meanwhile, Emma announced on the phone last night that:  “Mommy’s staying with Granma.  Mommy is in Colorado.”

To which I replied, “Yes, I am, Em.  But I’m coming home in three days!  Tomorrow’s Wednesday, then Thursday, then it’ll be Friday and I’ll be home!”

There was dead silence and then after about ten seconds she said, “Bye Mommy!”  I could hear Richard saying, “Wait Em!   Don’t hang up, don’t hang up!”

Apparently my promise that I’ll be returning home on Friday is one of those – I’ll believe it when I see it – situations.  Emma was not impressed.

A friend of mine suggested I stay in Aspen over the Fourth.  “I need to get home before my kids forget what I look like,” was my response.

Friday, Em.  I promise.

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

Travel Plans Gone Awry

To pick up from where I left off, Emma did extremely well on the airplane and on the long car trip up to Napa, California.  She was ecstatic, if not more than a little tired when we finally reached the Bed and Breakfast that night.  There were others of us who did not fare as well.

The airlines arbitrarily changed all of our reserved seats, so that each of us now occupied a middle seat and no two of us were seated together.  When Richard called to complain and have our former seats restored, they professed confusion and ultimately said we would have to figure it out, despite the fact that we told them we were traveling with two children, one of whom was AUTISTIC!   Richard spent a good three hours on the phone Thursday afternoon, instead of packing, not an ideal way to spend the day.  I had a moment, during the second or third phone call to the airlines, when I wondered how it was even legal, let alone ethical for them to split up a family and not have even the children seated next to their parent.

But we got through it, though not because the airline did anything to help us.  I sat in the back of the airplane with Nic and my cousin, Alexandra.  Richard, Joe and Emma were able to snag seats together closer to the front.  A number of kind people were willing to change their seats to allow this to happen.  At one point we narrowly avoided a full melt down when Emma lost a piece of her blanket, now a three inch square of green fabric, which had inadvertently fallen on top of an elderly woman’s neatly coiffed hair who had fallen asleep in front of Emma.  Joe managed to deftly pluck the missing shred from the top of the woman’s head without waking her and returned it to a whimpering Emma.  Disaster averted.

The B&B was lovely.  Cedar Gables, whose wonderful owners prepared delicious breakfasts of homemade apple fritters, muffins and scones accompanied by eggs, bacon, sausages and fresh fruit each morning.  Because the entire place was overrun with my family members, Emma was able to run around in her nightdress, slide on the wooden bannister and blow up her balloons, then release them so they made a screeching noise as they whipped over the heads of unsuspecting relatives before resting on various ledges and window sills.

My brother’s wedding was lovely and Monday we headed back to the airport where I had to leave my family to return to Aspen, where I am reopening my store for the summer, while Richard returned home to New York with the children.

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


Early this morning Emma climbed into our bed.  “Hi Mommy!”

“Em, it’s too early, you have to go back to bed,” I said.


I listened to her make her way back to her bedroom.  When her bedroom door closed, I marveled at how just months ago, this would not have happened.  In the past, Emma would have refused to leave or screamed until one of us took her back to her bedroom where she would not have gone back to sleep or she would have left and begun screaming minutes later.  This morning, there was nothing but silence.  The silence accentuated by the thick layer of snow covering everything and which continues to fall as I write.

Later, when something crashed into one of the windows, causing the dogs to start barking downstairs, I tiptoed into Emma’s room.  She was in her bed, with her head on her stuffed green monster, Muzzy.  “Hi Mommy!”  she said.

“Hi Em!”

“Just you and me,” she said pointing to herself and then me.  “Just you and me in Emma’s bed.”

“Yes, I said, sitting on her bed.  “You and me” is something Emma has begun saying for a few months now.  It is another milestone.  She says it as she points to each person she is referring to.  While this may seem inconsequential, it represents an astonishing leap in cognition as well as tremendous developmental progress.  One of the telltale signs of autism – a lack of pointing – is something Emma is now beginning to do.

“Muzzy, teddy bear,” Emma said, pointing to her monster.

“You love your Muzzy, don’t you Em?”

“Yes,” she said.

And I love that Emma has taken to referring to her stuffed monster as “Muzzy, teddy bear.”  It’s such an apt description of what he is to her.  And like all things Emma, her choice in “teddy bears” is a bit unconventional.

Emma just came into the room where I am writing with her “twin”, an enormous doll I bought for her one Christmas.  I ordered it over the Internet and had to send a photo of Emma, with instructions on the correct eye, hair and skin color.  When the doll came, complete with Christmas party dress and faux fur stole, Emma looked at it and wandered off.  A pile of unwrapped presents remained under the Christmas tree abandoned.  Every Christmas we have attempted to entice Emma with a few things we think she might enjoy only to have her barely take notice of any of them.

“Look!  Doll!” Emma said  as she sat down with the stripped down doll in her arms.

“Oh Em, you have your doll with you.  What’s her name?” I asked.

After a pause Emma said, “Girl.”

Then she picked up some of her picture books and began “reading” to “girl”.

“Have Eddie come, get christmas presents?” Emma said while we were still in New York.

“We’ll be in Aspen for Christmas,” I told her.

“Open Christmas presents at Granma’s house,” Emma said.


For Emma to show even a remote interest in opening any presents this Christmas will be a first.

The Aspen Carousel

While there is no actual carousel in Aspen, Emma has devised ways to bring the concept here nevertheless.  As I write this, Emma is sitting downstairs where my mother has set up a toy carousel on a little table next to the Christmas tree.  It has lights and plays music, which Emma sings to as she knows all the songs.  The horses and animals move around as the lights flash and the music plays.  Prior to our leaving for Aspen Emma said, “Go to Aspen, go downstairs for carousel.”

“That’s right Em.  Granma keeps the carousel downstairs.  We’ll need to bring it upstairs to the living room,” I said.

“Get Aspen carousel.  Play on Granma’s carousel!” she said.

Now sitting in front of it, Emma said, “No Emma cannot sit on the carousel!  It’s too small for Emma.  Carousel for babies.”

“It’s too small for even a baby, Em.  It’s a doll’s carousel,” I said earlier.

“It’s too small,” Emma agreed.

“Carousel all done,” Emma could be heard saying just now as the music on the little toy carousel abruptly ended.

The other “carousel” Emma loves is at the ARC.  For those who have visited the Aspen Recreation Center, you will know there is no carousel.  But Emma has created her own by sitting on a ball and allowing the current of the “lazy river” (a waterway with a current propelling the body around and around) to push her along as she sings “carousel” songs.  “Go to the ARC?  Go on the carousel?” she asked a few years ago.

Utterly confused we corrected her, “But Em, there is no carousel at the ARC.  The carousel is in New York, we have to wait til we get back home.”

“Go on the Aspen carousel,” Emma insisted.

“We can try to find one, but I think we’ll have to drive a long way.”

“Aspen carousel,” Emma said matter-of-factly.

“Well let’s see if we can find one nearby,” we said in an attempt to placate her.

Eventually one of us figured out the connection when Emma said, “Go to carousel in indoor pool in Aspen.”

“You mean at the Rec Center?”

“Yes,” Emma confirmed, nodding her head.

“She must mean the lazy river,” one of us said.

The next time we came to Aspen, sure enough Emma raced over to the lazy river and, while balancing herself on a ball floated happily around and around while singing a medley of “carousel” tunes.

We have learned Emma is rarely wrong about such things.  If she says there is a carousel at the Rec Center, then there must be something that to her represents a carousel.

There is one more carousel Emma likes “going on”.  She runs around the kitchen island and sings, usually with the dogs joining in, which makes her run all the faster as she remains terrified of them.  It is a catch-22, the faster she runs to get away from the dogs, the more they think it’s a tremendous new game.  After a few laps, Emma will speed off to the safety of the upstairs where she knows the dogs will not follow her.  Carousel derailed.

Last night during dinner, every time someone at the dinner table got up, Emma would scoot into their chair saying cheerfully, “Now sit in Uncle Victor’s chair!” or “Now sit in Granma’s chair!”  It was a kind of impromptu musical chairs, which Emma devised regardless that no one else was in on the game nor was there music playing.  While this was not another “carousel” game, at least Emma didn’t call it one, it did have similarities.  Music, movement and silliness are Emma’s favorite things.  It’s no wonder she loves coming out here.  There are such endless possibilities.

All Together

Richard, Nic and Emma finally arrived in Aspen after a series of mishaps Thursday evening.  Emma saw me first and ran, as though heading for my arms, but at the last second, veered away, saying, “Hi Mommy!  It’s Mommy!”  and jumped up and down, pointing at me from about five feet away.

I caught her and said, “Hi Em!  Remember, arms around and squeeze!”  Which she did as I kissed both her cheeks.  I have been working with her on the art of hugging family members and though she hasn’t got it down yet, she at least understands that if you put your arms around the other person and squeeze, that will pass for an acceptable hug.  It’s a start, anyway.

Richard and Nic, on the other hand, returned my embraces easily and without hesitation.   This is my family and I am ecstatic to have them here with me through the holidays.

While we are here, Em is skiing with a buddy provided by Challenge Aspen.  (Except for today when it is so messy out with rain, slush & snow even Emma seemed less than enthusiastic.)  “Look!  It’s raining!  We cannot go skiing when it’s raining,” she said upon waking up this morning.  “That’s just silly!”  she added, pointing out the window at the rain.  And indeed, it did seem to be a bad idea, though there were the intrepid few, who defied all logic and were on the slopes, my brother and his wife being two of them.

I am relieved Emma was not among them, however, as the patches of sheer ice, mixed with the slush caused by the milder temperatures and rain, made for some interesting driving along our road.  I can only imagine what the skiing was like.

“Would you like me to read to you?” I asked Emma earlier this morning.

“Yes,” she said, sitting between my legs on the couch usually taken over by the dogs.  Emma pulled a blanket over us and leaned her head back against my chest.  I have been reading Balto, the Siberian husky whose statue forever memorializes him in New York City’s Central Park.  Emma, despite her fear of dogs loves the statue in Central Park and often climbs on it, as the photo below shows.

Emma seemed to enjoy the story and listened quietly as I read the last twenty pages to her.  When we finished the story, she looked out the window and said, “No, not going to go skiing!”  Go swimming at the ARC.  Go jump off the diving board into the cold water!”

“Yeah.  Okay.  That sounds like a good plan,” I said.

“Go swimming now,” Emma said.  Upon seeing my hesitation, she said, “You have to ask Mommy.  Mommy!  Can I go swimming at the ARC?”

“Em, you’ll go later, it’s not open yet.”

“You have to wait, it’s broken,” she said, looking at me to see if she’d gotten it right.

“No, it’s not broken, it’s just not open yet.  It’s too early,” I explained.

“It’s too early,” she said.  Then she peered out the window at the morning light and said, “You have to wait til it’s light out.”

“No, Em.  It’s light out, see?  We can see the mountains, but it’s too early for the pool to be open.  People are just waking up and having breakfast…”

“Later,” Emma said, clearly not interested in my long-winded explanation.

“Yes.  Just a little later.”

“One minute,” Em said.

“More than one minute,” I said, wondering if I should use the opportunity to bring over a clock and discuss the concept of time.

“Later,” Emma said with finality.