Category Archives: Aspen

“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

One Last Night

Sunrise

It’s hard not to feel the overwhelming beauty of life when seeing a sunrise over the mountains, like this one, as we did yesterday.

Emma has asked to go back to our little rustic one room cabin almost every night since we last spent the night there about a week ago.  Since we are leaving tomorrow, returning to New York, we decided last night was our final chance to spend in it.

“Hey Em, do you want to spend the night in the cabin?”

“YES!!!!” she shouted, jumping up and down.  Then she dashed upstairs, returning a little while later carrying her backpack.

Nic opted to stay with his Granma, so the three of us set out, Emma racing ahead of us up the little trail.  When we arrived and had settled in, Emma threw on her nightgown, despite the fact it was only 7:30PM and still light outside.

“Don’t y0u want to sit with us and watch the stars come up?”

“No, not going to sit outside.  Time for bed!”  Emma said snuggling under her sleeping bag.

Richard and I watched as the sun set, whereupon the bats came out.  Just as a bat whipped past us, less than two feet from where we were sitting, Emma appeared.

“Em, did you see the bat?”

“Bats come out.  Bats going to bite you!”  Emma exclaimed, looking up anxiously.

“No.  They eat bugs, Em.  They’re not going to bite you.”

“Okay, okay, sit with Mommy!”  Emma jumped onto my lap, pulling a blanket up around her shoulders.

When we got up this morning and began packing up to return to civilization, Emma said, “Spend tonight again in the cabin?”

“No Em.  We have to fly back to New York on Thursday.”

“Get on the airplane,” Emma said nodding her head up and down.

“Yes, we get on an airplane.”

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

Sunday in Aspen with Emma

Yesterday I spent the entire day with my family.  This was a first since they arrived a week ago.  In the morning I took Emma on the 4-wheeler.  I couldn’t remember how to put the thing in reverse so I made sure we went places which only required forward movement.  The whole shifting gears thing was a bit tricky, so Emma learned quickly that she needed to hold on to me as we galumphed along – something she doesn’t usually do when riding with Richard.

After our ride we took the dogs for a walk.

And on the way we saw this…

Upon further investigation, it turns out it was the desiccated pelt of a coyote or perhaps a deer, hard to tell at this late stage.  My mother evidently found it lying on the path several months ago and hung it on this shrub so the dogs wouldn’t drag it around.  Emma was utterly uninterested and walked right by.

After our walk, we went up on the gondola to the top of Aspen Mountain where a blue grass band played.

On the ride up the mountain, Emma played a game where she went through a list of all our various relatives and added, “cousin” or “uncle” or some other title before their name.  Then she got a little creative and said, “Jungle Andy!”

“No Em!  Not jungle Andy, Uncle Andy,” we said, laughing.

“Uncle Andy,” she responded, then very quickly added, “Jungle Andy!” as we screamed “No!  Not jungle Andy!”  Emma thought this so hilarious that she kept it up for the entire 20 minute ride.  And in truth, it was pretty funny.

After our lunch on the top of the mountain, Emma stood in line to bungie jump.  The weekends are particularly crowded and so we ended up waiting…  and waiting…  and waiting.  For 45 minutes or more, I lost track of how long we waited.  But finally it was Emma’s turn.

After Emma finished bungie jumping we drove out to the Snowmass Recreation Center and swam in their outdoor saline water pool.  Finally we drove home, changed and went to Takah Sushi for dinner.

Emma was terrific.  Not a single meltdown.  She waited the interminably long wait to bungie jump, she went along with all the plans, even when they changed at the last minute due to things beyond our control.  And at the pool, she showered, washed her hair and then for the first time ever, brushed her own hair, completely, without any help from me.  When we went out for dinner that evening, we brought along her food, she ate with us, then played, making faces and being silly.  When it was time to leave, she ran ahead toward the car, never a protest.

Now that’s a great day!

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

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

Bliss

I am sitting here writing this, with Emma to my left singing “Three Little Elephants” in Spanish.  Okay, so you might not know that was what she was singing even if you were a native spanish speaking person, but I know the song, because the tune is exact even if her pronunciation is not.  Richard and the children arrived in Aspen last night.  To say that I was pleased to see them, really doesn’t sum up my excitement and happiness.  I am blissfully happy!

Last night Emma was so excited to be here that she didn’t want to go to bed.  As my husband, now to be referred to as the man-of-the-decade (MOD – I tried “century” whose acronym then became MOC and have opted for “decade” simply because of the acronym and not because there’s a time limit on my admiration for him and all he does) was unpacking, I got Em into her nightie and brushed her teeth.  When she finally felt it was time for bed, at around 10:00PM (that’s midnight by New York time) she said, “Time for reading and bed!”

“Are you ready for bed, Em?” I asked.

“Yes.  Mommy come,” she replied.

I am reading a book written by a wonderfully talented friend of ours – Dan Elish – whose book is entitled “The School for the Insanely Gifted” and Emma is enjoying it immensely, as am I.  As I read to her, Emma snuggled up against me, putting her head on my shoulder as I read.  I use to do the exact same thing when my mother used to read to me and it filled me with joy.  When her little body succumbed to sleep I lay with her, not wanting to move, just relishing her head on my shoulder, her body pressed up next to mine.

This morning Nic and Emma woke at the rousing hour of 5:30AM – in part because the dogs began barking at a particularly tenacious coyote who has a habit of coming right up to the house and yelping.  The dogs, in a spectacular display of frenzied aggression twirl around barking and ramming their bodies against the door in an effort to get outside.  My mother’s voice shouting from her bedroom, “be quiet!” does nothing to calm them.  And in fact, may just rile them up further, though I’d never say this to her directly.  The whole thing has a comedic aspect to it – dogs making more noise than one would think possible, coyote howling, children bolt upright in bed, Mom shouting for quiet in a kind of exaggerated stage whisper and Richard covering his ears with a pillow.

Once downstairs Emma and I made chocolate pudding, while Nic proceeded to play his newest composition on the piano.  By the way – Piglet – if you’re reading this – any tips on how to keep the instant pudding from turning into soup after an hour or so in the frig?  I think it has something to do with the altitude, as this doesn’t happen to us in New York.  But I digress…  After making pudding, Nic proceeded to demonstrate his newly acquired skill of blowing bubbles and Emma went upstairs only to return wearing her bathing suit.  “Time to go to the indoor pool!” she cheerfully announced.

Nic proudly blowing a bubble

The aftermath of another bubble

“But Em, it’s not open yet.”

“We have to wait.  Then going to go to the indoor pool, jump off the diving board, go down the slide, go in the carousel.  Go with Mommy?”

“I can go later today or tomorrow Emmy,” I told her.

“Okay,” she said.  “Mommy has to work,” she added in a serious tone.

“How about getting dressed so you’re all ready to go?”

Emma returns wearing her swimsuit and clothing over her suit.


“Playing bells,” Emma explained as she pounded on the keys of the piano.

Everyone is together and I am in bliss.

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

These Last Few Days

Every day for the past month, Emma has gone on the bus to summer camp with her brother, Nic and her therapist Joe, shadowing her.  Joe tells me this year has been terrific.  Emma has tried new things, been engaged and interacted with the other children more than the year before.  Today is their last day before coming out to join me in Aspen.  Because it’s their last day, Nic told me, they can do whatever they like.  Nic said he was probably going to play soccer, practice his archery, swim “a bunch of times” in the the lake and do gymnastics.

I am interested to hear what Emma will do.  When I called last night, she was with Joe in her “study room” so I couldn’t speak to her to ask.  Not that I would have gotten a clear answer.  The future and past are difficult concepts for Emma to express.  I never know when I speak with her if she’s referring to something she wants to do, did do, will do in the future or wished she could have done in the past. Despite my confusion in regards to what time frame is being referenced, Emma is usually without complaint.

Emma at camp – 2011

Every afternoon upon returning from camp, Joe and Emma go into her “study room” where she works on her literacy program.  I haven’t worked with her for the last ten days, so I am eager to see how she is coming along.  Emma’s literacy program, perhaps more than anything else, has caused a significant shift, in Emma, but also in me.  The progress she’s made since this January when she was just learning to form her letters, to now, where she is writing one and two sentences, is tremendous to see.  But I also feel she is gaining a certain degree of self confidence.  Working with her has been incredible as I know how hard it is for her, but she continues to do the work anyway.

Sleep, wake up, sleep, wake up, go on the airplane and see Mommy!

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

Autism and Parenting

I have been away from my family for eleven days now.  I am in Aspen, Colorado where I needed to reopen my store for the season.  There have been a great many things I needed to attend to, so here I am.

And there they are.

In New York city, my family – Richard, our son, Nic and Emma, the star of this blog.  To say I miss them would be an understatement.  I hear from Emma’s teachers.   They email with updates and about how Emma had a rough day the other day because the rest of her class was allowed to go to the roof to swim, but Emma had to have her final session with her music teacher, and so stayed behind.  Emma loves nothing more than water and swimming.  So she was beside herself, upset, crying and my guess is she hurt herself, though I haven’t confirmed this suspicion.

Later, an old classmate came to the school to visit and Emma was so excited to see her.  She kept saying, “Maddie’s back, Maddie go home on the bus on Wednesday, Maddie in Becky’s class”.

When they tried to explain that Maddie was only visiting and would not return, Emma kept insisting Maddie was back.

These kinds of things are hard for me to hear, the distance between me and Em making it all the more so.   I can’t hold her, I can’t be there to lessen the load for my husband, I can’t really do much other than call and listen.

People say – you’re changing diapers one day and then you’re helping load up their u-haul with their things.  It all goes by so quickly.   But whether one has children or not, it still goes by quickly.  Children are just larger than life markers of it.

Stop and look around, I tell myself, you’re in one of the most beautiful places in the world.

And then I remind myself to breathe.

For more on Emma’s impact on our lives and how we cope, go to www.EmmasHopeBook.com

Aspen, Work & Richard

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.

Home

“Go on airplane?” Emma said yesterday morning.

“Yes, but first we’ll have breakfast, then study room, then brush teeth and then go on the airplane,” I told her.

After listening to me, Emma nodded her head and said, “Go on airplane.”

All that other stuff was filler, it was the airplane part Emma cared about.  “Right,” I said.

At the Aspen airport there was the usual congestion, lines, children running around, harried people, stern looking airport security.  When flying with Emma I used to bring along a letter from her school saying she was autistic etc.  But it never seemed to make a difference, so I stopped.  Despite the fact Emma is the world’s greatest traveler there are problems which inevitably arise when flying with her.  Little misunderstandings, which I’ve described in previous posts, not important enough to spend time going into again.

Emma, as I’ve written before, will not eat anything served on the airplane.  She will not drink any of the liquids they serve, the apple juice on the Denver to New York flight is out of the question as it is served from a can, something she won’t tolerate, she will only drink water from a water fountain, impossible when in Aspen, difficult even in New York City during the winter months and unavailable on airplanes.  So we brought two of her last, appropriately packaged vanilla milks and pirate booty, some grapes – they must be seedless red grapes, a banana and some fruit leathers.  All of which is fine, except the vanilla milks cause us problems every single time.  Curiously in New York I will tell security she’s autistic and we are almost always cheerfully waved through, but never in Aspen.  The Aspen airport is a stickler for going through the correct protocol, no matter how tedious.  I know to take the vanilla milk out, show it to airport security and wait for the predictable grumblings from the people behind us as the entire line is put to a stand still.  I hate the “pat downs” where you are taken aside and searched, so this time Joe volunteered to be the one to endure it, while I watched Emma.

Traveling alone with Emma is particularly daunting as she might run off and no one appears to have the slightest understanding of autism and the difficulties this presents to the lone parent who is being pulled aside, frisked, trying to keep an eye on the carry on as well as calling to Emma who often disappears into the crowds.  To say this is a tense and upsetting time would be putting it mildly.  It is nerve wracking and often frightening as one never knows if Emma will run off – to the bathroom, try to exit the area, run outside to an awaiting aircraft headed to – who knows where – suffice it to say, it’s not fun.

But yesterday morning Joe, being the trooper that he is, volunteered and so they went through his and Emma’s carry on, with all their various swabs and strange looking equipment, it took about ten minutes all told, and I kept reminding myself, as we waited, that this was, though annoying, nothing more than an inconvenience in this post 9/11 age, which we all find ourselves in.

Once we made it through security all went fairly well, the weather was perfect, the passengers were all boarded when I became aware of two little girls sitting in the row behind, their parents, directly behind me and Emma.  The little girls couldn’t have been older then 3, their voices still had that high pitched squeaky sound only heard in a toddler.  The father helped get them settled, made sure they each had their stuffed animal, there was some fighting between the girls about who’s special toy was whose, but other than that it was what any parent of two toddlers would expect. (Not that I would know, but I’m guessing here.)  Some bickering, lots of talk from the parents about the importance of sharing, requests from the girls for candy, cheerios, something to drink.  It became comical when the father, having spent at least 10 minutes procuring various sweets and snacks, muttered to his wife, “Can I just sit for two seconds without feeding someone?”

Meanwhile there Emma was, content to stare silently out the window, happy to be on an airplane and going home.

Inspired by the family behind me, I asked, “Hey Em.  Do you want a snack?”

“No,” she said and continued to stare out the window.

“It’s Mommy!”

Every evening Joe, Emma’s therapist, and Emma pick me up from my store in town.  Emma pushes the door open and, upon seeing me says, “Hi Mommy!”  Then she points at me and says, “It’s Mommy!” as though this were the first time she’d seen me in a very long time.

“Hi Emma!”  I respond.  “I’m so happy to see you!”

Often she’ll stand back from me.  Looking at me with an expression of pleasure mixed with something else I haven’t been able to decipher, she usually says again, “It’s Mommy!”

It’s almost as though she doesn’t expect to find me there each evening.  As if she thinks I might be somewhere else and my presence is just a fluke.  Or perhaps it’s that she’s not used to seeing me at the store.  We’ve only been open a few months now and normally Joe, Emma and I are home in New York where I go to my studio each day.

After introducing Emma to whoever might be in the store when she comes, I almost always ask her, “What did you do today?”

“Go back to Granma’s house with Mommy?”  Emma will answer with an edge of anxiety.

“Yes, I’m coming with you,” I reassure her.  “What did you do today?”

Typically Emma will respond with a list of things she did.  Though this is by no means a comprehensive list.  Many times it’s not clear whether she is stating what she actually did, what she might have done in the last few days or what she wanted to do, but didn’t have time to.   “Really?”  I’ll say.  “You went bowling, sledding and skiing?”  I’ll ask, looking to Joe for confirmation.

Joe likes to let Emma speak for herself and so he usually will wait to see if she responds appropriately.  If she’s just said something completely outrageous he’ll interject, but more likely Emma will correct herself on her own as she did last night.

“No skiing,” she said.  “Bowling and wheel carousel.”

“Oh!  Did you find a real carousel?” I asked, wondering if this was a new addition to the Aspen area.

“Yeah!  Wheel carousel!”  Emma responded.

“Where is it?” I asked Joe.

“It’s a metal wheel in El Jebel,” Joe explained.

“Oh, like a merry-go-round?”

“Yes.”

“Did you have fun?” I’ll asked.

“YEAH!”  Emma said.  She almost always will respond to that question with enthusiasm.  No one can accuse Emma of not being happy.  She spends the greater part of her day in a state of bliss, always has.

When we drove home Emma waited in the back seat, allowing me to get out first to collar the dogs, before vacating the car.

By the time she appeared in the kitchen I had hung up my coat and was talking to my mother.  “It’s Mommy!”  Emma said, pointing at me as though she hadn’t just spent the last twenty minutes with me.

Then she held out her arms to me, indicating that she’d like me to hug her, which I never pass up the opportunity to do.

Tiny Steps

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.

Flying with Emma

Emma is a joy to travel with.  Unlike most children, she sits quietly in her seat and is content to listen to music, look out the window, watch a video or look at books.  But there are certain misunderstandings, which inevitably arise when traveling with Emma as well.

Yesterday as we boarded the airplane leaving New York City to Denver, a nice woman behind us asked if Emma was 9.  I told her she was and she replied that her daughter was 9 too and she understood how hard it could be to travel with a nine-year old.  I said, “Oh, is your daughter autistic?”

The woman looked at me in surprise and said, “No.  She’s nine.”

It was one of those peculiar conversations where you realize you’ve misunderstood the intent of the other person.  I immediately thought, because Emma kept getting out of the line leading to the aircraft, that she knew Emma was autistic.  But it turns out she had no idea and was simply commiserating with someone who also had a nine-year old child and was flying with her.  My first impulse was to say, “Oh no.  Emma is great to travel with.  She’s not like that at all!”  But I decided it was best to keep walking and find our seats.

Later during the flight when Emma needed to go to the bathroom, the flight attendant said, “Poor thing, she’s still asleep,”  as Emma kept trying to push open the door to the bathroom which was occupied, despite my repeated attempts to stop her.  Again I just smiled.

Later on the flight from Denver to Aspen, (we were one of the lucky few who actually made it into Aspen yesterday!) the flight attendant leaned over to Emma and said, “Do you have your seat belt on?”

“Umhmm,” Emma said, curled up on the seat by the window.

“Really?” he said.  Where?  Do you have it around your chest, your knees?  I don’t see a seat belt.”

Emma just smiled at him and nodded her head.

“Emmy, put your seat belt on,” I interjected as I could hear the growing irritation in the harried flight attendant’s voice.  She immediately did so.

“Oh!  So you weren’t telling me the truth, were you?” the flight attendant said.

I put my hand gently on his elbow and said, “She’s autistic and didn’t understand you.”

“Oh dear.  I’m so sorry,” he replied before quickly moving along the aisle.

And so it goes.  This sort of thing happens constantly with Emma.  People assume she’s fine, she looks fine after all, and respond accordingly.  There’s always a moment when either I say something or they begin to realize they are dealing with someone who is a bit different than what they thought.  It’s a surreal moment, when the other person is caught off guard, before they’ve had time to make an adjustment.  Usually people are incredibly kind, very occasionally we meet someone who isn’t.   I don’t have any one method of responding.  Often I say nothing.  I mean what’s the point really?

Emma’s Birthday

This coming Sunday we are giving Emma a birthday party.  In years past this has been a dubious endeavor, often met with initial excitement on Emma’s part, only to end with complete indifference or worse.

When Emma turned four, we hired a musician to come to the house and play kid friendly music before eating pizza and cake.  Emma spent the entire hour and a half trying to lie inside the musician’s guitar case, while Richard and I tried, with little success, to entice her to join the party.  The other children, many of whom were also diagnosed with autism, ran around, danced, sang along with the music or sat watching and listening with their mother or caregiver.  Richard and I took turns excusing ourselves and each went separately into our bathroom where we allowed ourselves a few minutes to cry, before mustering up the strength to return to our guests, doing our best to act as though everything was fine.

It was also the year we had been called into a parent/teacher conference at her special education pre-school only to be told our daughter was a “red flag” and that she had “flat-lined” in her development.  It was a tough year.  A year Richard and I still refer to when we feel doubtful of Emma’s current progress.  That year marked a time of desperation, sadness and a general feeling of impotence on our part.   It seemed whatever therapy we tried, whatever medical interventions we took on, nothing made a difference.

This year, Emma not only told me where she wanted to have her party she also told me which of her friends she wanted to attend her party.  Before she left Aspen (where I am currently snowed in) she listed all the people she wanted to invite.  She was very specific.  When I asked about a couple of children, she said simply, “No.”  It was the same with the place.  She wanted a specific place where she can play and do gymnastics with her friends.  Afterwards we will order pizza, which Emma won’t eat, and cupcakes, which Emma will.  I expect it will be a very different kind of party than five years ago when she turned four.  Emma has come a long way in five years.

Dozer

This is my talented nephew, Bridger’s puppy, Dozer.  This photo was taken in October.

The aptly named, Dozer, is now at least four times as big and still growing.  To my son, Nic, he is a welcome addition.  Dozer’s hair is as soft as the finest fur.  He’s full of puppy energy and best of all, loves to be with kids.  Nic is ecstatic and cannot wait to see him again.

For Emma, however, Dozer is a furball nightmare come true.  He’s bouncy and teething so he nips and grabs hold of anything that moves.  His actions are erratic – he seemingly comes out of nowhere and jumps to lick, usually the face.  That he is adorable is completely lost on Emma.  All she sees is black menacing fur in the shape of a not so small bear, rapid movement, wet tongue, drool and sharp teeth.  To say she is terrified of him, would be a vast understatement.

When Emma went up to the barn one day while out in Aspen for the holidays, Dozer came out to play.  Emma was terrified as Dozer bounded toward her at a rapid clip.

“Pick me up!” she screamed.

Emma now weighs over seventy pounds, so picking up a writhing, screaming, terrified body is not an easy task.

“Pick me up!” she screamed again, pulling at my arms.

I tried to shield her with my body, but Dozer was so fast, he was able to bounce around me, giving Emma an enormous, wet “kiss”.  Only to Emma it wasn’t a “kiss”, it was nothing short of an assault.

“Mommy!  PICK ME UP!” Emma shrieked, her fear palpable.

Eventually we managed to get to the barn and locked Dozer out where we could hear him pacing up and down, trying to find an alternate means of entry.  Add a creepy sound track and you have nothing short of a scene from a horror movie.

After twenty minutes or so, we peered out the door to see if an escape was possible.  There Dozer was, lying in front of the only door, his enormous body draped across the exit, making any attempts to leave impossible.

Emma began to fret.

“It’s okay Em.  I’ll pick you up,” I reassured her.

“No Dozer.  Dozer go back to Bridger’s house,” Emma said desperately.

“It’ll be okay, I’ll carry you down the road and Dozer will go home,” I said.

Except when I picked Emma up, she is so tall now, her feet dangled not far from the ground, an easy grab for Dozer, who comes up to my hips.  Emma screamed and tried to “climb” up my body.  The whole thing would have been comical had I not been trying to hold onto her, while pushing Dozer away, somewhat like trying to move a stalled car, as we made our way down the ranch road.  “It’s okay, Em.  He’s not going to hurt you.  He wants to play, that’s all,” I told her.

Any time I saw Dozer’s attention stray, I would take a moment to rest by putting Emma down, where upon she would immediately scream, attracting Dozer’s attention again.  Back he would race to see what he was missing.  It was a laborious process and poor Emma by the end of the trip was repeating over and over again the same ineffective words – “Dozer! NO!  You have to go back to Bridger’s house!  You have to stay inside!”

Only Dozer had no intention of returning to an empty house, he was having far too much fun with this odd child and her fumbling mother.

Later, in the safety of Granma’s house, Emma stared out the window and said, “No you cannot go up to Bridger’s house.  Dozer has to stay inside. It’s okay.  It’s okay.  Dozer has to go home.”

Now Emma is safely back in New York, home to millions of dogs, but very few Newfoundlands, so perhaps she feels safe, finally.