Tag Archives: travel

Fears Reduced to Nothing

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.

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)

A Moment of Levity

Yesterday, having successfully arrived in Denver and found our gate for the connecting flight to New York, an announcement told us of a short delay.  Emma, who was looking at her book – The Way I Feel – looked up and said, “Angry!  I am so angry!”  As she was on the page in the book describing anger, this was not surprising, however, the gentleman sitting next to her had no way of knowing the context for her words and so looked over at her and said, with an exasperated air, “Yeah, me too!”  Emma then scowled, to show off her angriest face, the man then scowled back before both of them began to laugh.  As I watched this interaction, I realized the man was with his wife and grown daughter, who were sitting directly across from us, both of whom were laughing so hard they had tears running down their cheeks.

Both our flights were, thankfully, uneventful.  We arrived in New York after 11:00PM where it was zero degrees with the wind chill, having left balmy Aspen, Colorado where it was in the upper forties.  Go figure.

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

Prepping Emma

We are flying back to New York City today.  As with most outings, we prepare her in advance.  Emma has become more aware of time in that she has been counting down the days until we fly home.  “Last day at the indoor pool,” she will say under her breath or “That’s it, no more skiing.  That was the last day of skiing.”

For the past week or so she has increasingly talked about going back to school, mentioning her friends and teacher and made references to things she wants to do in New York and the people she expects or would like to see.  Yesterday she helped clean up and gather her things to pack.  “Time to go back home,” she said at one point.  One year we were fortunate enough to be invited to fly in a friend’s private plane.  For the next few years Emma said, “Take just one plane,” with the hope that we would, once again, be able to fly straight from New York City to Aspen without stopping or going through the long lines of security and dealing with the large airports with their many delays and flight cancellations.

We walk her through the day by saying things like, “We leave on Tuesday, Em.  We’ll drive to the airport and say good bye to Granma.  Then we have to check our bags and go through security.  I will probably be pulled aside, so you’ll need to stay with Joe, Daddy and Nicky at the gate until I can join you.”  Often during this, Emma will join in, “We have to get on the airplane and fly up, up and then land at the other airport.”

We go through as much as we can with her, but there are inevitably issues which arise that we have no way of anticipating such as running into people we know, flights getting cancelled, luggage getting lost, alternative routes needing to be taken because of unforeseeable weather conditions, etc.  We do our best to make contingency plans, but fortunately Emma is a great traveler and most of these things she will take in stride.

I have seats all together today, so unless they change the aircraft on us, we should be able to sit altogether.

“We have to take a taxi,” Emma said, as I was going over our schedule this morning.  “Then we get to go through the tunnel and go home!” Emma said before running downstairs for one last morning of chocolate chip pancakes.

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

Flying to Colorado

We flew to Colorado for the holidays last Friday.  When I booked our reservations I tried to get all of our seats close together, but despite my most dogged attempts, getting five seats together just wasn’t possible.  Still I was fairly optimistic as I had managed to have Richard and Nic together in the row in front of Joe and Emma with me just needing to trade my window seat for an aisle seat in the same row but on the other side of the plane.  When the gentleman who had the aisle seat next to Joe and Emma, the seat I was hoping to trade him for, arrived, I explained that we were trying to sit together and would he mind terribly if I traded my lovely window seat just two seats over for his aisle seat.  No, he told me.  He was not willing to do that.  He then told me that he had a grandson with autism and felt for my predicament, but couldn’t trade seats as he didn’t like sitting near the window.  Not discouraged I asked the woman in the other aisle seat of that same row if she would mind terribly moving over just two seats to the window seat, thus letting the gentleman occupy her seat, while I occupied his.  (I know this is beginning to resemble a Shakespearean novel with a vast cast of characters.  I should have tried to download a seating map for this post.)  The woman, barely looked up, avoided any eye contact and said flatly, “No.” She then proceeded to read her book about the Palestinian/Israeli conflict.  By this point, all the passengers within three rows of us, were aware of what was going on.  Undeterred, I asked a few more people seated in an aisle seat if any would mind trading with me.  I was rebuffed each and every time.  At this point with my options becoming fewer, I decided to try and solicit the help of a flight attendant, though in the past this has never proven helpful.  Never-the-less off I went in search of a flight attendant while the gentleman took his seat next to Joe and Emma.  As I headed up the aisle another man, sitting several rows behind us, said he would trade his aisle seat for my window seat.  As the trade took place he leaned over to the first man and said, “You know, you could have helped her out.”

I thanked the man profusely and asked if we could buy his lunch.  He declined, said he flies at least once a week and it was no big deal.  I thanked him again and sat down.  Joe and I have been reading some material about speech and literacy, so we began to discuss how we might best apply what we were reading to our work with Emma.

About an hour into the flight, the man whose seat I was now occupying leaned over to me on his way back to his seat and said, “Forgive me.”

“Please,” I said, “don’t worry about it.”

“No.  I should have given you the seat.  It was wrong of me.  That man who volunteered, I’m proud of him.”

“Thank you for coming over,” I said.  And he sat back down.

A couple of things I keep coming back to, are not so much how people are not willing to move their seats, I understand it’s a pain.  Traveling has become hellish, everyone has just been through security lines, removal of shoes, waiting, standing in line and finally they get to their seat, the last thing anyone wants is to be asked to move.  I hadn’t realized the window/aisle conflict was such an issue.  I had thought as long as it wasn’t a middle seat it wouldn’t be hard to trade, but clearly this was incorrect.  But it made me think about the airlines themselves.  Is there not something the airlines could do for families traveling with children with disabilities?  I don’t know the answer to this question.  I don’t know how they could help, but it does seem that the airlines would do well to at least have an awareness that this is a growing problem.  We go through some sort of problem almost every time we travel.  I have gotten better at choosing seats that, while often not together, are at least seats people might be willing to trade.  But every now and again my best laid plans run amok.

The Rockies

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

Having a Daughter with Autism

Someone asked me the other day – What’s it like having a daughter with autism?

The flippant response would be – I don’t know what it’s like to have a daughter without autism.  But the more thoughtful answer is a bit longer and more complicated.  My own experience of being a daughter to a mother with whom I feel deeply connected to, a connection that many, I have learned over the years, do not have certainly plays a role in my answer.  I have always felt my mother and I share something that goes beyond the usual feelings of responsibility and gratitude toward someone who gave so much in order that I might have a good life.  It is as though we share something much more than the history and past of living under the same roof for the first 17 years of my life, something I cannot adequately put into words.  We have a closeness, a bond and yes, a friendship that only a few of my female friends can relate to regarding their own mothers.  I have often said that if my mother were not my mother, I would wish she were.  I don’t actually know many people who can truthfully say that about their mothers.  I am lucky.  I get that.

So when I was pregnant with Emma, I fully expected to have a similar experience.  I knew right away she was a girl.  Don’t ask me how, I just knew it.  For one thing I began to wear pink, a color I never liked until Emma entered my being and for another I craved spinach and blue cheese during my first trimester, as opposed to steak and all things meat when pregnant with Nic.  Okay so I’m not being completely serious – though all of this is true – the pregnancy was different with Em, it just was.  Without meaning to or even consciously trying to, I visualized my soon to be daughter.  I knew she would have blonde hair, blue eyes and broad shoulders, as both Richard and I share these things, but beyond that I couldn’t know. I sang to her, just as I did when I was pregnant with Nic, I talked to her, read to her and dreamed about her.

While pregnant with Emma, I was walking on Fifth Avenue one afternoon, when I passed The American Girl store.  It reminded me of my first and favorite doll, Maribelle, a gift from my mother to me when I was little.  Maribelle came in a blue and grey striped trunk complete with shoes, gowns, dresses, she even had a fur coat!  (I still have Maribelle – she and her trunk reside upstairs in my mother’s house.) I saved her, intending to give her to my own daughter, were I fortunate enough to have one. Looking through the large windows of the store I fantasized of the day I would bring my daughter there and how she would choose a special doll.  A doll that would be like Maribelle was to me – a companion, a doll she would whisper secrets to and spend hours upon hours playing with.

Richard and I were not the kind of parents intent on placing our yet-to-be-born children on waiting lists of the most coveted New York City preschools, looking to the day we could sit listening to our child’s speech having graduated  from Harvard Summa Cum Laude.  Ours was a more unconventional approach – at one point we fantasized about putting all of our belongings in storage and traveling the world for a few years.  We spent many an evening discussing the places we wanted to travel to, which included Tanzania, Lebanon, Egypt, Brazil, Morocco and Laos.  We poured over guide books and vowed that once both children were out of diapers we would make our fantasies reality.  We had no way of knowing that Emma wouldn’t be out of diapers until she was eight and a half years old.  We couldn’t know that once she was out of diapers we would be scrambling to cover the staggering cost of her care, making any dreams of extensive travel abroad impossible to seriously contemplate, not to mention the sheer logistics of traveling to a foreign country with a child with special needs.

(To be continued.)

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

Do We Have An Obligation to People With Autism?

The scene in the airplane last week involving the man with autism, has stuck with me.  I keep wondering what the airlines would need to help them cope with situations such as the one we witnessed.  Of course I am approaching this question with the assumption that they are interested in mitigating the damage and distress such a scene may cause, not only for the man with autism, but for the other passengers seated nearby, as well as the flight crew.  At the very least – the airlines and all such companies who may come into contact with persons with autism should be educated enough to know how best to deal with most situations that might arise.  Given the current rise in autism, it seems scenarios such as the one I described last week will occur with increasing frequency.  At the very least, it does seem obvious that when a person with autism has requested a window seat they should be accommodated, just as someone who requires a wheelchair is given an aisle seat.

Why is it that neurological differences are treated any differently than physical?  The answer is –  for the most part neurological issues go unseen.  We cannot see inside the person’s brain and so we make assumptions.  Assumptions that the person has a psychological “problem” or are simply behaving badly because they are – poorly brought up or have emotional problems.  We have words for people like this, most of them cannot be written without using a lot of keyboard symbols.  We have little tolerance for those who seem to indulge their worst desires and allow themselves to act out on those selfish interests.  But what of the people who, like the man we encountered last week, have autism?  Do we not, as a society, have an obligation to these people?

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

Autism and Traveling

Yesterday we flew back to New York city.  Emma is a terrific traveler, content to stare out the window, look at her books and sing songs.  As long as she is able to sit in a window seat, she is happy.

On the flight from Denver to New York, which was already delayed by about a half an hour, we noticed a man speaking in a loud voice to one of the flight personnel.  He was a large man, well over six feet tall, with close cropped greying hair.  I couldn’t hear what he was saying, but it was clear he was unhappy about something, not unusual given the rigors of traveling nowadays.  But as he went on, I noticed a cadence to his speech that was familiar to me.

“Mom, what’s wrong with that guy?” Nic asked me as I watched the scene unfold.

“Don’t know, Nic.”

“Is he autistic?”  Nic asked.

“Maybe.  I’m not sure.”

It was at this moment that we were called to board.  The man, visibly upset and walking with a cane, boarded first.  When we finally settled into our seats, I noticed that same man was seated directly in front of me – in an aisle seat.   The usual parade of harried travelers filed along, as exhausted flight attendants urged everyone into their seats so that we could take off without further delays.  By the time the plane was airborne, we all began to relax.  At a certain point the man in front of me yelled out, “I can’t see out the window!  I can’t see out the window!   Excuse me miss, I can’t see out the window!”

It wasn’t clear who he was speaking to, but it seemed that the woman seated near the window in the row in front of him had pulled the shade down.  Someone then said, “It’s her seat, she can do what she wants.”

To which the man shouted, “I can’t see out the window.  I hate these aisle seats.”

For another hour or so all seemed to calm down until about an hour from our landing when the pilot announced we were in a holding pattern over Pennsylvania and would be for an indefinite period of time.  The pilot then went on to assure us that we had enough fuel for several hours so everyone should relax and he would keep us updated.  But the gentleman in front of me began to get agitated, asking the flight attendant what was happening, what time would we actually land etc.  She explained that we were in a holding pattern and couldn’t predict what time we would actually land.

After she left the man began to shout, “I can’t see out the window.”  People were muttering and saying things under their breath, while the poor man became increasingly upset.  At this point I leaned forward to the woman in his row seated next to the window and asked her if she would mind changing her window seat for his aisle seat.  I explained to her that I thought he probably had autism and was becoming increasingly upset by all the delays and needed to be by the window.  I told her my daughter (happily gazing out the window directly behind her, also had autism and needed to sit in the window seat too.)  The young woman complied and I asked her if she minded if I intervened by telling the flight attendant.  She said that would be fine.  I went to find the flight attendant who was discussing the situation with another flight attendant in first class.  I explained that I thought the man had autism and that my guess was he would feel much calmer if he could sit in a window seat and that the woman to his right had agreed to change her seat with him.

The flight attendant then returned saying to the man, “This nice woman has agreed to change seats with you.”

“I hate these aisle seats.  I told them at the gate I hate these aisle seats.  I was suppose to have a window seat.  I told them I was suppose to have a window seat,” the man said, now standing in the aisle of the plane.

Once he had reseated himself by the window, all was quiet with no further mishaps despite our over an hour delay in landing.

What I find most upsetting about this, is how it all could have been avoided.  The airlines, like so many, do not have any understanding of autism.  How hard would it have been to give this man a window seat as he requested at the gate?  When I went to the flight attendant and suggested he might have autism, she said, “Oh, yes.  He does.”  So it’s clear the airline had been made aware of this and yet, chose to do nothing to help this man.

Sometimes I feel as though I am yelling from the top of a very large building.  WHAT IS IT GOING TO TAKE ?   The lack of understanding around a condition that affects hundreds of thousands of people is mind boggling.   The scene we witnessed could have been avoided had the airlines and it’s personnel had even a vague understanding of autism.

For more on autism and traveling with Emma, go to:  www.EmmasHopeBook.com

Going Home

I was suppose to be on the first plane out of Aspen this morning.  Which meant, if all went well, I would be on an 8:30AM flight out of Denver heading back to New York.  Barring any unforeseen delays I might even have gotten home before my children returned from their various summer activities.  To say, I was excited to see them this afternoon would be an understatement.  And that doesn’t include the excitement I feel in anticipation of seeing my husband, Richard who has single handedly shuttled one child or the other to camp, picked up said child, taken Emma to the doctor for her ongoing ear problems, dealt with all the daily problems that inevitably arise in caring for a family and home, fed both children, fed Merlin (our adored cat), watered my orchids, done the laundry, the grocery shopping, and did I mention he also managed to work?  Can I just say here that he is a man of all men?  Put the guy on a pedestal and allow me to genuflect.

As it turns out, I will not be on that first flight out of Aspen, nor on any flight leaving Aspen today.  In fact I cannot get a flight out until tomorrow.  I received the fateful call at around 11:30PM last night and my heart sank the minute I heard the phone ring.  I then called United to rebook my cancelled flight only to be told there was not a single seat anywhere that would eventually get me to New York.  So tomorrow I will (hopefully) be home and able to finally see my husband and children.

It will be interesting to see Emma.  Will I see progress?  I do not expect her to greet me with more than a passing – Hi Mommy!  She can be pretty casual about seeing one of us again, even if it’s been awhile.  It’s hard not to assume that means she doesn’t care or didn’t miss the person.  I think of it as more an expression of her autism than any suggestion of disregard.  I know a mother of a child with autism who hates when people label her child “autistic”.  She said – if someone has cancer, I don’t say, oh they are cancer.  My child is so much more than “autistic.”  Similarly Emma is not autism.  Emma is a little girl who has a series of neurological irregularities, which make her behave in a way that we call “autism”.  And it’s that wonderful little girl, my little Em, who happens to have been diagnosed with autism, whom I cannot wait to see.

Just one more day and a few thousand miles, before I can come home.

For more on Emma’s and our journey through her 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

Amusement Parks – Autism

Emma loved our day spent at Six Flags near Napa, California last week.  Typically Emma can be counted on to ride the most terrifying looking rides, but on this trip she immediately said – no.  She wanted to go on the little roller coaster, the one you get to before the rides called: The Corkscrew, Velocity and Medusa.  While Nic and their cousin Gaby ran off to get in line for a ride that looked as though it went up so high it might require an oxygen mask, Emma insisted she stay and “just watch” with Richard and me.

Emma entering the park

“Really Em?  But it’s going to be a lot of fun,” Richard urged, even though it didn’t look like it would be fun at all, unless you enjoy sky diving.  Gone are the days of the old traditional roller coasters where you actually could put your hands up without fearing death, where the vertiginous climb and then dizzying descent didn’t cause your entire life to pass before your eyes, where you exited the ride feeling intact and not as though you’d just avoided a heart attack or stroke.

“No, no, no, just watch.  Just watch with Mommy and Daddy?”

“Yeah.  Okay.”  Smart girl I thought to myself.  Still it was unusual and the first time Emma has shown anything other than excitement at an amusement park.

“It’s weird.  I can’t understand why she doesn’t want to go with Nic and Gaby,” Richard said, peering up at the tangled mess of metal rails called – Velocity.

“I don’t know.  Maybe it’s her ears…”

“I think she has to go to the bathroom.”

“Or maybe she was scared the last time Joe took the kids to that park a couple of weeks ago.  Remember?  He said that one ride, even Emma was scared.”

We continued to debate what could have gone wrong, but Emma stood firm.  She was very specific about which rides she’d go on and which ones she wouldn’t.  Any ride that caused her to be upside down, was rejected.  Not that I blamed her.  I felt slightly ill just watching the other kids shrieking and whipping around as though they’d been tossed into a human blender, without the blades.

But then we found the roller coaster called “Roar”.  An old style wooden roller coaster, the kind I remember from my childhood and even I felt a little jolt of enthusiasm.

“You could ride this one, Mom,” Nic said to me, patting my arm.

“You think?” I asked.  The thing was huge, but it did resemble the roller coaster I used to love riding when I was young.

“Totally, Mom.  You could do this one,” Nic said.

“I’m going to go too,” I announced.

“You are?”  Richard asked.

“Yeah, I used to love these,” I said.


When the ride was over, Richard said, “I think I broke my neck.”

“I thought I was going to have a heart attack,” I said.

“I’m not going on that thing again,” Richard said.

“That was horrifying,” I added.

“I can’t believe the kids want to go again.”  Richard shook his head in dismay.

“I think I have to sit down,” I said, motioning to a nearby bench as the children ran to get back in line.

By the fourth ride, Emma was beginning to get perseverative, which means she had become obsessive about riding and didn’t want to stop.

“Okay Em.  One more time, but this is the last ride.  Except it was too late, Emma couldn’t take waiting in the line, even though we had a disability pass allowing her to go to the head of the line, there were other children with disabilities also waiting.  She began to bite herself and scream.  Joe managed to keep her somewhat calm but by the time they were at the front of the line, Emma was miserable.

When she gets like this it’s as though her entire system crashes, like a computer.  There is nothing one can do to console her.

To be continued.

For more on Emma’s journey through a childhood of autism, 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

Traveling with Emma

We are going to Northern California tomorrow for my brother’s wedding.  Emma is very excited to see her Uncle Andy and because we rarely travel anywhere new, this is a particularly appealing trip.  Other than visiting her Granma in Colorado, we have only traveled to places that required us to travel because of medical treatments for Emma.  Panama and Costa Rica for Emma’s three stem cell treatments and Boston to meet with Dr. Timothy Buie, a specialist in autism and GI tract issues.  When we flew to Boston a year later for one of my cousin’s wedding, Emma was convinced we were returning to the hospital where they’d performed a colonoscopy and endoscopy on her.  It wasn’t until we actually got to the wedding and she saw the guests did she relax.  We use to go to Cape Cod every August for a couple of weeks, but haven’t been, since we got Emma’s diagnosis.  In fact it was on that last trip almost seven years ago that we came to the conclusion we needed to get her evaluated.  Even if it were easier to travel with Em, Cape Cod sadly, holds painful memories for me and so I’ve not been eager to return.

However this trip is one Emma is anticipating with great excitement.

“Sleep, wake up, get on airplane, go see Uncle Andy!” Emma said this morning, while bouncing up and down.

“Yeah, Em.  We’re going to have fun!”

“No.  Not going to go on the school bus.  Going to see Uncle Victor, Grandma, Uncle Nic, Gaby, Lili, Liesl …”  she went through the list of all the people we would undoubtedly see at my brother’s wedding.

“Are you excited?” I asked.

“Yes!  So excited!”  Emma shouted and then ran out of the room.

There’s a certain degree of anxiety that comes with traveling with Emma.  Though she rarely has melt downs any more on the airplane, in fact she’s become a wonderful traveler, we always brace ourselves for the unexpected.  Because we aren’t allowed to pack any liquids or her yogurt (she’ll only drink Mott’s apple juice or Apple & Eve Apple juice and only if it comes from a plastic bottle, not a can) we have limited options when it comes to what she’ll drink and eat.  Usually she doesn’t eat anything other than her Pirate’s Booty, though last time we flew back from Colorado I did manage to get her to drink a small amount of the apple juice they served on the airplane.  It felt like a victory.  She use to eat fruit leathers and as they also helped her ears during landing and take off, we used to pack about ten of them.  She has recently been refusing to eat them, but I’ll bring some anyway on the off chance she’ll eat one.

We will be staying in an inn and thankfully the entire place has been taken over by my extended family.  Even if Emma does lose it, at least the people effected by her screams know of her situation and will hopefully be patient and kind.  Even so, it’s tough not to worry.  Richard scoped out the different day trips we can take while there this weekend and there seem to be a great many of them.  He found a pool she can swim in and an amusement park.

“Well we’ve got Saturday and most of Sunday until the wedding covered,” Richard announced earlier.

We’re sitting in the back of the plane, which is a good news/bad news situation.  The good news is, we’re next to the bathrooms, the bad news is we’ll be the last to get off and Emma has a difficult time sitting still after the plane is at the gate.  She wants to get off the plane NOW and can’t understand why we have to wait to let everyone in front of us off first. But who knows, maybe she’ll be able to tolerate the wait this time.

So while Emma is ecstatic and without any anxiety about traveling to see her Uncle Andy, Richard and I are anxiously making sure we’re well prepared and haven’t forgotten anything.  I use to be a very casual traveler, often late to the gate, the last one on board before they shut the doors and pulled away from the gate, winging it when it came to where I might stay the night.  In my twenties and thirties I often traveled alone, to all sorts of places all over the world.  But since I had children, I am a nervous wreck when traveling.

I’ll try to take a page from Emma’s book.  Relax, look out the window, chew on a fruit leather and enjoy the journey.

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

The Next 32 Hours

To say I am counting the hours until my family’s arrival would not be an exaggeration,  32 hours, weather permitting.  And during those 32 hours I will have opened my store, launched my e-commerce web site: www.arianezurcher.com, worked an eight hour shift and gone to see my friend and inspiration to all of us, Amanda Boxtel demonstrate Berkeley Bionics eLegs at the Aspen Club this evening.

Richard will be equally busy, going to Emma’s school for her parent/teacher conference, working, packing, going to Nic’s school Winter Concert where he will play “Lean on Me” on his clarinet (!) making sure Merlin is cared for while we are away, before getting to the airport and onto the airplane.  Flying with Nic and Emma is always stressful and anxiety producing even though Emma is one of the world’s best travelers.  It is more the mental gymnastics one inevitably goes through before the fact which causes the most worry – What if she has to pee and the plane is stuck on the runway in some endless and unforeseen delay?  What if she freaks out for some unspecified reason?  What if her favorite DVD doesn’t play properly?  What if, once in Denver, the plane to Aspen is delayed or worse, cancelled?  What if…

I have flown with both children a number of times on my own and it’s always nerve wracking.  The good news is, even with some substantial delays and mishaps, both Nic and Emma are terrific travelers.  Emma loves when the plane begins zooming along the runway and in the past would race her legs up and down as though she were running, propelling the plane forward as she laughed and made buzzing noises.  I haven’t seen her do that in over a year now, but it was hilarious when she use to.  Now, more likely, she will simply gaze out the window with a little content smile and occasionally hum.  She knows she will have her Cokie or as her head teacher at school writes – Coqui – which I rather like, giving the tattered blanket a certain, je ne ce quoi.  Emma has been talking about the fact she will have full access to Cokie on the airplane for over a month now.  “Take Cokie on the airplane,” she has said more than a few times.

“Yes, Em.  You’ll have Cokie with you.”

“Have Cokie on the airplane,” Emma will repeat as if confirming an important appointment.

“Yes,” we respond.

“Good!  Take Cokie on the airplane.”  Then she will nod her head and grin.

Both Emma and Nic have been looking forward to coming out to Aspen for a while now.  Nic cannot wait to see his beloved Granma and her dogs and Emma can’t wait to see her Granma, go skiing with her Uncle Victor and Aunt Susan and go swimming at the ARC (Aspen Recreation Center) after skiing.  I cannot wait to see both children and my husband tomorrow afternoon and have not thought much beyond catching sight of them and just hugging all of them.