Category Archives: travel

Prepping Emma

Posted on January 3, 2012 by | Leave a comment

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

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Flying to Colorado

Posted on December 19, 2011 by | 2 comments

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

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Having a Daughter with Autism

Posted on September 20, 2011 by | Leave a comment

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

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Do We Have An Obligation to People With Autism?

Posted on August 30, 2011 by | Leave a comment

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

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Autism and Traveling

Posted on August 26, 2011 by | 1 comment

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

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A Phone Conversation With Emma

Posted on July 28, 2011 by | Leave a comment

Speaking on the phone with Emma has always been challenging.  She tends to forget that there is a person on the other end and often walks away, leaving the phone dangling there before someone either abruptly hangs the phone up, not realizing I’m still there or answers it in a harried sounding voice.  Sadly, since I’ve been out here in Aspen working, both my children and husband remain in New York City, so the only communication I have with any of them is by phone.  This morning I called before the children left for camp – which meant calling them at 5:45AM Rocky Mountain time.  The following was my conversation with Emma.

A rustling sound followed by, “Hi Joe!”

“No, Emmy.  It’s me, Mommy.”

“Oh!  Hi Mommy!”

“How are you Emma?”

“I’m fine.  Have so much fun at camp.  Last day.  Last day summer camp.”

“Two more days, Em.  You have two more days and then it’s Saturday and then you and Daddy and Nicky and Jackie fly out to Aspen!”

“No more summer camp.  Fly to Granma’s house!”

“That’s right Em.  I can’t wait to see you.  I miss you so much.”

Silence.

“I’ll be at the airport, Em, waiting for you guys.  I am so excited to see you.”

Silence.

“Emmy, have you enjoyed camp?  What are you doing there today?  Anything exciting?”

Silence.  Then humming.

“Emmy?”

More humming of a carousel song – whose name I cannot remember.

“Hey Em?”

More humming and the sound of her moving away from the phone until the humming was from far away.

“Em?”

“Oh hi honey.  She took off.  Nic wants to talk with you though.   He was going to call you this morning,”  Richard said.

I then spoke with Nic who informed me that he missed me and Emma did too.  He now knows how to blow bubbles from a single piece of gum, a proud accomplishment and something he had become convinced he would never be able to do.  He’s practicing his Alto Sax and loves it, is playing the piano and is working on a blues composition for it, while learning the guitar, so he is not as good at it, but is still enjoying it.  The sax he is shipping out to Aspen so he can practice while out here and his skateboard he intends to leave in New York.  He explained to me that he plans to buy another one for Aspen so he’ll have one here as well as in New York.  He requested that I find him a bail of hay so he can set up a bulls eye to practice his archery, which I’ve promised to look into.  As he told me all of this I could hear Emma in the background, talking, singing and laughing.  I could hear that Joe had arrived.  As I spoke to Nic, mining him for more information there was silence.

“Hey Nicky!”

Silence.

“Nic!”

Silence.

“Nic!  NIC!”

“Oh yeah, Mom?”

“Nicky, I was talking to you.”

Sorry.  Joe’s here, playing with Emma.  I got kind of distracted.”

Shrieks of laughter were then heard along with running and more laughing.  Talk about feeling out of the loop!  But also relieved everyone is having a good time and I will get to see them in another four days.  Just four more days…

Emma in her Pink Flamingo costume

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

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Explaining Travel to Emma

Posted on July 20, 2011 by | Leave a comment

I flew back to Aspen, Colorado yesterday, alone.  Explaining to Emma why I had to return so quickly was difficult.  First of all I don’t know how much she understands and since she cannot ask me questions the way her older, neuro-typical, brother, Nic does, I cannot know what goes through her mind.  So when I told both children ten days ago that I was going to have to go back to Aspen because of my store, Nic said, “NOOOOOO!  You only just came home!  That’s so unfair, Mom.  Why do you have to go back?”

Emma remained silent.  I explained that there were things I needed to take care of at the store, that it was part of the deal with owning one’s own business, it’s just what one has to do.  After awhile, Emma wandered away muttering, “Sleep, wake up, camp on the lake, sleep, wake up, get on airplane.”

Nic meanwhile was angry, then teary, then resigned.  “I know, honey.  It’s a drag.  But you, Daddy and Em will come out in August so it won’t be so long this time that we’re all apart.”

“No Mom.  It’s not a drag.  This sucks,” he said, before turning away from me, his arms crossed, to stare out the window.

“I’m so sorry, Nicky.”

And as sorry as I was that Nic was upset, I wondered what was going on through Emma’s mind.  Was she just accepting that this was how things were, did she have questions?  What was she feeling?

Impossible for me to know.

This past weekend I pulled out a calendar and went over it with Nic and Emma.  Pointing to various dates, I said, “Okay so this is when I have to leave.”

“Get on airplane, fly back to Aspen,” Emma said, looking at the box with the number 19 on it where my finger was positioned.

“Yeah.  That’s right Em.  That’s the day I have to go back.”

“Sleep, wake up, get on airplane,” she said.

“Just me, Em.  You guys are going to go to camp and stay in New York with Daddy,” I explained.  “Then look, on this day you, Daddy, Nic and Jackie are going to fly out to Aspen.  That’s in twelve days.  And here, this is when Joe comes out and Jackie has to go back, then here is when we all fly back to New York together.”  I looked at both of them.  “Okay?”

“I don’t want you to go again.  We’ve only had you for like three days,” Nic said.

“Two weeks.”  I put my arm around him.  “I know.  I know.”

“It’s not fair,” Nic said.

“Sleep, wake up, sleep wake up…”  Emma began, counting on her fingers how many sleep, wake ups it would be before they flew out to Aspen to meet me.  “Go to YMCA with just Mommy?”  Emma said after she had finished counting out 12 “sleep, wake ups”.

“No, Em.  But Daddy will take you.”

“Go to YMCA with just Daddy,” she repeated and then scooted away on her scooter.

Yesterday morning as I was gathering my things to go downstairs, Emma ran over to me and threw her arms around me.  “Bye Mommy!” She said, burying her face into me.

“I’m going to miss you so much, Em.”

“Miss you,” she said, before pulling away.

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

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“I’m Home” – Autism

Posted on July 5, 2011 by | 1 comment

When I opened the door to our loft, Emma came tearing up on her scooter shouting, “Mommy’s back!  It’s Mommy!”

As I dropped my bags and opened my arms to greet her, she sped away.  Nic meanwhile rushed up to me and threw his arms around my waist.  “Mommy!” he cried, “It’s so good to have you home.  I missed you so much!”

As I hugged Nic and then Richard, I said to Emma, “Hey.  I want a hug from you too.  Come over here, Em!  Remember?  Put your arms around and …”

“Squeeze!”  she shouted, while complying.  She peered up at me, with an odd expression on her face.  Then she pointed to my face and said, “It’s Mommy.  Mommy came back,” as though she hadn’t been sure I would.

“I’m back Emmy.  It’s so good to be back.”

“Yeah, Mommy came back.  Mommy stayed at Granma’s house.  Mommy had to go away,” she said, nodding her head sympathetically.

“It’s okay, Em.  Now I’m home.  I’m not going anywhere.”

Nic then played five different songs on his new Alto Sax for me, two new songs which he composed for the piano and then plugged his electric guitar into his amp and riffed on several more.  Emma scooted around on her scooter and eventually it was time for everyone to go to bed.

“Mommy come to Emma’s room,” Emma said, taking me by the hand.

“Yes!” I said following her.

“Mommy’s back,” Emma whispered as she snuggled down under her blanket.

“Yes, Em.  I’m home,” I said stroking her cheek.

Later Nic expressed his upset that I was away for almost three weeks.  He was able to tell me that he didn’t like that I was gone for such a long time.  But Emma…  Emma doesn’t have the words to express her upset nor does she have the ability to ask me why I was away.  I can only hope she understands I had to go for work, but I don’t know that she does understand.  When she looked up at me earlier it was with a mixture of shock at seeing me again and happiness.  I don’t know whether I’m reading more into her expression than was actually there, but given that she isn’t able to ask me, who knows what reasons she applied to my absence.

“Go swimming with Mommy,” Emma whispered.

“Yes,” I said.  “We’ll do that tomorrow.”

“No, not going to go back to Aspen,” she said, holding my hand.

“Nope.  Tomorrow we’re going to spend the whole day together.”

We were quiet then.  “Mommy sing?” Emma said after awhile.

“Sure, Em.  Which one – Swing Low, Sweet Chariot or Summertime?”

“Swing Low first, then Summertime,” Emma said.

“I love you Em,” I whispered.

“So much,” Emma finished.

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

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Travel Plans Gone Awry

Posted on June 15, 2011 by | Leave a comment

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

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