Category Archives: travel

Travel, Friendship and Sensory Overload

A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport.  Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that.  Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.

It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely.  But the wipers made a scraping noise that I found almost intolerable.  Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board.  It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter.  I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.

As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch.  It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry.  I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.

Ib began to very quietly and gently tell me what she was about to do, before she did it.  So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down.  Ibby was modeling, actively demonstrating what I need to do for my daughter.  She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.

As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person.  I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life.  Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person.  Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again.  However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.

As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight.  All the things I do without thinking, without questioning, things I take for granted.  But I also was aware that this relief is not what others, others like my daughter, necessarily experience.

A Word of Thanks

Em and I are traveling again, so after publishing Emma’s post debut, and what a first post it was (!!!!), for the “This is Autism Flashblog” we got on an airplane.  As we didn’t get to our hotel until after eight in the evening, we didn’t read all the lovely comments so many of you left until quite late.  Thank you.  As a parent it means a great deal to have such an outpouring of support and encouragement for Emma’s first post, particularly as it was a post that was incredibly personal.  Emma wrote, “Thank you everyone”  before falling asleep.

The flashblog has almost 250 posts at the moment.  It was a wild success and shows the range and complexity of views about what exactly “autism” is.  Anyone who hasn’t gone over there to read what others had to say, I encourage you to  spend some time doing so.

There is so much I want to say about the flashblog, autism, grassroots protesting, being the parent of a child whose neurology I do not share, but have overlaps with, functioning labels, how we can all influence change, how the more of us who join in, the quicker these shifts will occur, why I keep showing up here day after day instead of sleeping for another couple of hours, but I don’t have time this morning as we have an appointment in another hour that we cannot be late for.

Thankfully I had the foresight to opt for a GPS system on our rental car and do not anticipate getting lost as I did the last time we made this trip.  As a testament to this decision, Emma did not once shout from the backseat, “Oh no!  We’re going the wrong way!” last night, for which I am extremely grateful.

The adventure continues!


Traveling Without A GPS

I’m traveling with Em.  We’re doing a kind of mother/daughter trip together, though not, as Em would like, to a spa where we sit around getting our nails done, (Em has fallen in love with the joys of a good pedicure) go swimming in heated pools that are like massive bath tubs and doing nothing else… that trip will have to wait.

And I made the mistake of opting out of the GPS system for the car I’ve rented, which means every few minutes Emma can be heard saying from the back seat, “Oh no!  You’re going the wrong way!”  And because I have no sense of direction, am driving in a state I’ve never been before, let alone city, she is correct.  We have been here less than 24 hours and have gotten completely lost, despite thorough directions from google maps (which suck, by the way, I’m totally blaming google maps) FOUR times!  This is not an exaggeration.

It seems I cannot drive more than a few miles without taking a wrong turn, end up inexplicably going in the opposite direction from where I meant and wanted to go.  So I’m like one of those annoying drivers who’s leaning forward, peering out the window, both hands nervously gripping the steering wheel and driving so slowly I’ve got a line of cars in back of me, pissed off and trying to get around me. But I won’t pull over because I don’t know where the hell I am and… Yeah.  That’s me in that car you’re honking at.  And that GPS system that I turned down, because really, at an additional 20 bucks a day or whatever it was, who would think that was a good idea?  Um…  it’s looking like a bargain, right about now…

This was not always the case.  When I was in my late teens and all through my twenties I lived and drove all over the place.  I lived in LA for three years, a city where you spend more money on your car than you do on your home.  So yeah, I’ve driven a lot.  But as I have grown older and my eyes are not as they once were, requiring glasses, my sense of direction (not that I ever had one) has gotten worse, not sure how that’s actually possible…  but it has…  so a GPS system, it turns out, is less an “option” and more a necessity.

But last night when we arrived, I was still thinking of the me that I was thirty years ago.  The me that took on New York City traffic without a second thought, the me that spent hours a day navigating Southern California’s freeway system, the me that drove all over the place, every day without hesitation, yeah, that me.

Turns out?

She’s gone.

Image representing Google Maps as depicted in ...

Routines Disrupted

We have been traveling.  Our cell phone and internet coverage has been spotty and in some places we’ve had none at all.  As a result my routine, which usually means I wake up when Emma comes into our room, (anywhere from 5:15AM – 6:00AM) get dressed and go to my studio where I begin the day by writing, has been disrupted.  The beautiful thing about traveling is that there is no room for routines.  We’ve spent a few days with my sister, gone on a rafting trip down the Colorado River, gone horseback riding, gotten lost, spent time with one of my brothers, hung out with one of my cousins, (I have a large and sprawling family that live all over the United States and even world, and my mother’s house is often the only place we get to see one another.)  So it’s been really wonderful and lots of fun.

When I have gotten up early enough to write AND the internet is cooperating, I have begun a post only to have Em say she doesn’t want me to write about the topic I began writing about.  In fact, I have started three different posts, and Em has shot down every single one of them.  This could be seen as a bad thing, but I don’t view it that way.  I see this as an incredibly good, no, a great thing.  The first time I told her what I was starting to write about and asked her permission, she said no, I was surprised.  The second time I began writing about something else and asked her permission, I was surprised and amused when she typed “no, I do not want you to write that.”  The third time I thought – this is great!  Great because this blog began with no thought of her opinion and has evolved to represent only what she agrees to and may well end because of her thoughts and opinions.

What all of this means is that I haven’t been writing every morning.

So I will end with something Em typed to me the other day and told me I could post.  She typed, “Language is an awkward way to communicate.”  She would not elaborate further and why would she, as that sentence says it all.

The Rocky Mountains

View From Cabin

When Plans Go Awry… Take Photos!

The kids are here…

Water Park

And Richard and I are not…

That’s right.  We are having a staycation!  Woot!  Woot!

Don’t misunderstand me, I think about the kids all the time.  I began to worry when we hadn’t heard from them in 10 hours, but being in New York City for two days to just do whatever we want, when we want, without worrying about anything other than what museum we should go to next or where we should eat dinner, while knowing the kids are having a blast…  Yeah.  It’s pretty fabulous!

We began with a trip to the Metropolitan museum, where we saw the George Bellows show, followed by the Matisse show and then we wandered through various other galleries, and saw this, from the artist, El Anatsui who lives in Nigeria, but was born in Ghana. I love this artist.  Look at how the fabric drapes and folds.  This piece is massive and covers most of an entire museum wall.

El Anatsui

After a few hours we headed back downtown where we roamed the East Village, ate at a terrific little restaurant called The Redhead where the cheese grits are fantastic, as was the buttermilk fried chicken.  Then off we strolled to the IFC Center  (Independent Film Channel) where we saw the Academy Award-Nominated Live Action Short Films.  There are some great ones, but my vote goes to the South African short film, Asad.

Yesterday we slept in and went to MOMA (Museum of Modern Art).  This wonderful sculpture is on 6th Avenue and 54th Street.

The Egg

For those of you unfamiliar with my jewelry, I’m including an image of an 18 Kt gold and Ceylon Sapphire ring I designed and made three years ago.  I think you’ll see why this sculpture speaks to me!


After MOMA we went back to the IFC to catch the Academy Award-Nominated Documentary Short Films and had dinner at another fabulous East Village restaurant, Back Forty.  If you find yourself there, you have to get the  freshly baked Parkerhouse rolls.  Amazing!

At 3:50AM this morning my cell phone rang, which I ignored and then the home phone rang, which can only signal trouble.  It was my security company calling that they were being notified of “unknown” activity at my studio and did I want the police called.  Yes, thank you very much, I would like the police called, I responded groggily and then threw on some clothes, grabbed my keys and grabbed a cab and went over to my studio (which is NOT in Manhattan).  I arrived just in time to see a police car slowly cruise past my studio building without stopping!  I ran upstairs, carrying…

wait for it…

yup, my camera!  Because I am never one to miss an opportunity to photograph something and you never know…

I know.  Not exactly a weapon, but I figured if anything was amiss, I could at least document it.  This was my thinking.  And I’d just like to remind everyone that it was FOUR IN THE MORNING!   Everything was dark and quiet and so after checking all the windows and door, I returned to the city.  But not one to miss an opportunity I hung out the window of the cab and got some crazy shots of the Chrysler Building as we drove over the 59th Street bridge.  The white light is the Chrysler Building.

The Chryslar Building

I was back home by 4:30AM and… wide awake.

But what an adventure!

The icare4autism Conference in Jerusalem

The icare4autism conference ended this afternoon.  It was a whirlwind of activity spanning 48 hours of discussions and presentations led by scientists, therapists, neuroscientists, policy makers, parents and advocates.  Stephen Shore, who is Autistic, gave the single most entertaining presentation, entitled:  Employment Opportunities for People with Autism: Observations on Promoting Success.

On the first day I interviewed Henry and Kamila Markram, the neuroscientists who came up with the Intense World Theory of Autism, the only theory I’ve read and heard that makes any sense and which validates my own observations of my daughter, Emma.  Yesterday I spoke with Joshua Weinstein, the CEO and President of icare4autism.  He seemed genuinely interested in hearing from people.  He actively sought out suggestions, made himself available to anyone who approached him.  He seemed sincere in his desire to bring scientists, therapists, parents, researchers, educators and advocates  together.

The organization’s weakest point is in having Autistics on their advisory committee.  According to the sheet I received there aren’t any, and only one Autistic person, Stephen Shore, was at the conference presenting.  Perhaps after today’s conversation that will change.  I hope so.  I would like nothing more than to write glowingly about an organization that carries the word “autism” in it’s name.  I spoke out whenever it seemed even remotely appropriate.  But by the end of the conference I had made my – Autistics must be included in this organization -speech more than a dozen times.  Only once was I met with any argument and interestingly enough, that one time was from a parent of a “severely autistic child” as she described him, who was furious with me for suggesting we needed to move beyond the autism = tragedy model.

There is tremendous misunderstanding surrounding labels and the designations of low, high, severe and mild.  It was clear that people do not understand why these labels are unhelpful and the terms were thrown around a great deal during a number of the presentations I attended.  Another huge misperception surrounds intelligence or “lack” of in Autism.  I was astonished to hear the words “mental retardation” used in connection with autism during a couple of the comments from the audience.  I hadn’t realized that was still thought, by many, to be synonymous with autism.

The really good news is, I heard questions surrounding the “ethics” of various treatments and interventions for Autism and I was relieved to hear a number of people talk about the abuse, mistreatment and need for greater advocacy among the Autistic population.  Of course the best advocates are Autistics themselves and so I hope icare4autism will heed some of my suggestions.  I was not the only one making these suggestions, by the way.  There were a number of people, including Stephen Shore who was wonderfully articulate in his opinions and ideas, who brought up the need for Autistics to represent themselves and the importance of Autistics to be involved in all levels of any organization that carries the word autism in its title.

Finally, I miss Emma terribly and cannot WAIT to see her this afternoon.

Em in the playground

Letters, Photos, Autism And Jerusalem

I have been meaning to quote from a letter I received last week from Peyton Goddard and another from her mother, Dianne Goddard.  Peyton and Dianne Goddard wrote a book, I am intelligent, which I posted a couple of weeks ago, since then I am honored to be in communication with both of them.  Click ‘here‘ to read that post again.  I asked them for permission to quote from their letters here.  They have agreed.

This is part of an email Peyton wrote me, responding to the post I wrote about her book and labels.

“Pleasured I am pointed to hearing your understanding that lasted, large, limiting, linear labels are hulking jungles greeted by limitations. Keeping one limited is to measure there wastes of their great gifts.  One’s tears taste lime. Understares, terror builds. One washes their tears by return try freed to their Creator, as rest there they hunger. Polling my limits I kettled boiling red, as heard I’m trapped. There I wasted my lived times in pity. Limiting labels murder poignancy of sweet journey. I watered my liking to keep open living by questing for others better lives poignantly sweetened by encouraging swiping labels away. Wastes caging pertinent persons must stop. A trepid heart needs verses assuring “I’m deared by this very looking world. I can be me. My heart need caw no longer.” There joy is heard. These awesome pertinent persons can be freed to limitless. It greeted I hurrah…”

And this is part of an email from Peyton’s mother, Dianne –  

I spent much of Peyton’s first twenty years deliberating and comparing the severity of differences in persons labeled with disabilities that I met or read about. In the early years, this private, internal discussion between me, myself and I, offered some relief to my worries over Peyton’s delays and differences, as her challenges did not seem insurmountable if I therapied her enough. And professionals agreed. In the days before Internet could bring me many children to compare her levels of functionings and measured progress to, I found I could usually comfort my fearful self with observations that the few children we met with disabilities seemed to have much greater challenges than hers. A case in point was (removed the name for privacy’s sake) who was several years younger than Peyton. When talkative W. was three and not walking, he was tested. Duchene’s muscular dystrophy was diagnosed.  Debilitating muscles until death in his early twenties was the best case scenario. Pity him I did. And compare I did. While Peyton would be continuing to improve, he would be suffering a slow and sure death.

Not so. Peyton lost functioning and filled with a suffocating sadness she could not begin to shake for well over a decade. Yet W. lived happy. At his celebration of life five years ago I reflected on my foolish attempts to comfort myself by comparing the severity of challenges, and how thankful I am for new understandings of acceptance and valuing Peyton for ALL she is. Above all, I am comforted knowing she can really feel my love finally.”

The Icare4Autism Conference begins tomorrow.  More on that later.  To end, a few more photographs from our adventures in Jerusalem.

The Dome of the Rock  

Fragment of an Ancient Column in the Courtyard of The Dome of the Rock

Old Tombs in Valley of Jehoshaphat

Outside Zion’s Gate in the Old City

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Jerusalem in Photographs

Richard’s “I falafel”  joke struck back.  He spent the day sick in bed while I spent the day seeing all of this.

A day in photos…

Entrance to Church of All Nations

Mount of Olives (A massive cemetary)  As I climbed the narrow street along the cemetary, a man with a donkey appeared.

Tree of Thorns outside the Dominus Flevit Chapel

Dominus Flevit Chapel (“The Lord Wept”)  The dome designed in the shape of a tear drop as Christ was said to have sat nearby and wept over the fate of Jerusalem.  David, the nice gentleman who allowed me to come into the Chapel, despite the fact they were closed to tourists said, “You may sit here out of the hot sun while I feed my dogs.  If you like you may say a prayer.  Just don’t cry.”  To which I said, “Thank you so much.  I’ll sit right here,” I pointed to a little wooden chair.  “But I’ll save my tears for that scary looking tree you pointed out earlier.”  He laughed and left me to care for his dogs.

Archaeological Site in Front of St. Anne’s Church  Just to the right are stairs descending to the Pool of Bethesda where Christ is said to have carried a paralyzed man and cured him.

Kitty – A great many cats running wild in Jerusalem.  Most are pretty mangy looking, but this one was particularly cute.

A Side Street off Via Dolorosa – Notice the red neon tattoo sign.  A perfect example of the meeting of ancient and modern

YMCA (Pronounced “imca”) Built in 1926- 1933 by the same man who created the Empire State Building, Arthur Loomis Harmon, Jerusalem’s YMCA is a wonderful example of embracing differences, working together to create something larger than any one group, religion or people.  The auditorium beneath the dome has lighting fixtures each illuminating a different image – the star of David, the cross and a crescent.

Jerusalem and Beyond

Day 1

The Citadel in the Old City of Jerusalem looking toward the Tower of David.  We kept saying to each other, “I wonder where all the people are.”  It turns out it was Shabbat and Ramadan, though that didn’t entirely answer our question.

View of The Dome of the Rock

During our explorations, we found ourselves in the Old City Market along with hundreds of Muslims, Christians, Jews and tourists speaking German, French, Italian, Spanish, Russian, English and those were only the languages I could identify.  It turns out we were on the Via Dolorosa, the path Christ is said to have taken to his crucifixion.

Mountains of Spice,

Fresh Fruits,


and yes, even bras, but look how colorful they are and so beautifully arranged.

We went to the Church Of the Holy Sepulchre & The Chapel of St. Helena where we descended this…

leading to a massive cistern.  A tour guide was telling her group that the water was potable, though I remained dubious, having had too many run-ins with Giardia to last me a lifetime.

On we ventured to so many sites I’d have to pull out the guide-book to recite them all.  We sat at the entrance or was it the exit of Damascus Gate and reviewed where we were and what we still wanted to see.  We plunged back down into the depths of the market place, emerging out into the sunlight to visit the wailing wall, where I placed my hands against the giant stone slabs amidst tiny notes stuffed into its crevices, women on either side of me rocked, prayed, muttered, moaned and wept.  It was impossible not to feel the power of humility in this ancient, beautiful and complex place.

We ended the day by sitting at an outdoor café and eating falafel.

I turned to Richard as we waited for our food to arrive and said, “I’m hungry.  Do you realize we haven’t eaten anything today?”

To which he replied, “I falafel” (feel awful) before slapping his knee and doubling over in laughter at his own cleverness.


Day 2

We spent the morning at the Holocaust Museum.  Words do not describe..  it is a powerful and painful reminder of what humans are capable of.

We drove to Masada where we roamed a fortress built on a barren mountaintop in a part of the world that gets barely one inch of rainfall throughout an entire year, during the 1st, possibly 2nd Century and further added to by Herod intent on making it into his “summer palace” complete with cisterns, hot baths, beautifully decorated walls where one can still see the frescoes, mosaic floors all  overlooking this expanse of arid land with the Dead Sea and Jordan just beyond.

and this wall…

On the way back to Jerusalem we drove to the Dead Sea where we swam or rather floated because of the heaviness of the salt water.

Salt encrusted rocks on the shore of the Dead Sea

Meanwhile, Jackie has sent me a daily update of Emma’s adventures while we are away.   Emma saying – “Cheese”

Parent and Child – Who Needs Who

Emma just left, bounding out the door with Joe to catch the bus that takes them  to her day camp.  “I love you Em!” I called to her retreating figure.  “Bye!” she said, not turning back to look at me.  And I stood there in the doorway watching the outer door close behind her.  The constriction in my throat, coupled with the desire to run after her, hold her tightly against me, instruct her to “wrap both arms around and squeeze,” is so strong I have to talk myself out of it.  You and Em are different in the way you express your love for each other.  There is no one way.  You know this.  Shut the door, come back inside.  It’s okay.  It’s going to be okay.  I do know this.  I know Emma loves me.  I know she will miss me.  I know she is sad and perhaps even anxious that we are leaving for seven days, the longest we have ever left her since she was born into this world.

Earlier Richard and I sat in her bedroom with her and bopped up and down to Michael Jackson’s Beat it and Billie Jean.   Emma shut her eyes as she bopped, with a broad smile on her face.  She reached over and placed one hand on my arm.  It was brief, a second or maybe two and then her hand was gone again. Five minutes before she had to go down to get her bus, she said, “Play duck, duck, goose!”  So we did.  Richard and Joe and I sitting on the floor cross-legged as Emma went around patting each of us on the head, “Raincoat, raincoat, raincoat, Umbrella!” she shouted and then raced around and around before tearing off, laughing into another part of the house, with Richard in hot pursuit.  “Okay Em.  The bus will be outside.  You have to go.  I’m going to miss you Em.”  I wrapped my arms around her as she tried to squirm  away.  The constriction in my throat tightened.  It’s okay.  It’s going to be okay.  I know.  I know.

And then she was gone.  Just like that.  Gone.  And I want to sob because it’s so hard to leave her, because I need her to know how hard it is to leave her.  I want her to know I will miss her.  I want her to understand that I am not leaving her.  I hope she knows this.  I try to tell myself that she does.

I’m five and my parents are taking a trip somewhere, I can no longer remember where.  They go once a year for a few weeks, somewhere exotic, Africa, Peru, Ireland, Japan, returning with small tokens of their travels, a kimono in white and blue cotton, a pair of gold and emerald earrings from Ireland, a hand embroidered blouse from Peru.  The gifts have strange smells of some other land, a place I do not recognize, a place I may never visit.  But those gifts are for when they return.  The anxiety I feel when they leave is indescribable.  We are left with Mrs.  Williams.  

Mrs. Williams smells like antiseptic soap and something else, I hope never to smell again.  It is a smell that makes me gag.  I hate Mrs. Williams.  She is cruel and angry.  I know she hates me.  I can sense it.  I try to steer clear of her.  I try to keep to myself.  But it is never completely possible and then the hand comes down, sure and strong, unerring in it’s aim.  My bottom burns, my head slams into the bed frame with the force of her blows.  I try not to cry.  I try to be strong.  I think of my parents, why did they leave me?  What did I do wrong?

But we are not leaving Emma with Mrs. Williams.  We are leaving Emma with Jackie, someone she loves and asks for and she will be going to camp for one last week with Joe before we return to pick her up and return to Colorado where Nic is staying with my mother.  Jackie has planned wonderful outings for the two of them and Joe will be checking in over the weekend to make sure they are fine.  I’ve left copies of our phone numbers, passport info, hotel info, travel itinerary and contact info laid out on the island in the kitchen.  I went over the next week with Emma again this morning.  As though by going over and over it my anxiety will lessen.  Em, looks away from where my finger points at the calendar.  She is looking for her bowl to fill with Cheerios.  “Uh-huh,” she says, reaching for the milk.

She’s yessing me, I think with relief.  I’ve gone over this so many times, she’s memorized it.  She looks at me for a second, it’s a fleeting glance, but she looks into my eyes as if to say, “Mom.  Seriously.  I got this.”

And she does.  I know she does.  It’s me who’s struggling.  It’s me who is grasping. It’s me who needs to be reassured.  It’s okay.  You’re going to be just fine without her.  It’s okay.

Emma demanding that Richard come closer so that she can…

spray him with water from the seal!

Richard and Em, both soaking wet walking home last night

Synchronicity, Jerusalem and Autism

I am leaving for Jerusalem tomorrow.  I will be covering the Icare4Autism Conference and am meeting Kamila and Henry Markram, the neuroscientists and creators of The Intense World Theory for Autism.  I intend to continue to post as usual, Monday through Friday, but because of the time change and depending on my level of jet lag, my posting times may be a bit wonky.

I am very nervous about this trip.  Not because of the traveling, but because we will be away from Emma for a full week, which marks the longest we’ve spent away from her since she was born ten and a half years ago.  I have gone over our itinerary with her.  I have spoken to her about how many days before we return, we have studied the calendar together.  We have discussed what she will do while we are gone.  But still, I am nervous.  Whooooo.  Breathe.

Today I pack while trying to remember to breathe.  Emma will be fine.  She will be okay.  Breathe.  Try not to panic.

I’ve never been to Jerusalem and am excited that Richard will be accompanying me.  This was where we had intended to go for our honeymoon, (with our then nine month old son, Nic in tow, making it less a honeymoon and more an insanely, ambitious trip with a baby)  had made our reservations to spend Christmas Day and the following week at the King David Hotel, then had planned to spend New Years Eve in Giza at a hotel overlooking the pyramids, a week in Cairo, then a side jaunt to Lebanon and Petra before returning to Jerusalem.  In all we had planned to be gone for three weeks.  Two months before our wedding the intifada broke out and we were advised, because we were traveling with a baby, not to go.  We still have all the guide books with their dog-eared pages marking the places we’d hoped to see.

This time we will have just three days of sight-seeing before the conference begins.  But, as with so many things that have to do with Emma and Autism, the synchronicity of the following events is not completely lost on me.  Just over eight months ago our lives and by extension Emma’s radically changed because of the links I was finding to Autistic blogs.  I’ve shared those posts and blogs on here.  During that same period I came across the Markram’s Intense World Theory and Richard and I, through our research, learned they were going to be in Jerusalem in August presenting their work at a conference.  At the time I didn’t know it was a conference focused on Autism.  I remember Richard and I joked with each other, wouldn’t it be great to figure out a way to go to Jerusalem and meet them?  It was a joke, literally, neither of us for a moment seriously considered the idea.  And life continued.

This past spring, I was invited to be on a panel and give a talk at the AutCom Conference in Baltimore this coming October.  I accepted the invitation.  And again life continued.  Not long after that invitation, I received a letter from the “State of Israel” asking if I would like to be their guest to cover the ICare4Autism Conference in Jerusalem this August.  When I received that letter I read it to Richard and we just looked at one another.  I will never forget the expression on Richard’s face.  It was a slow motion grin that didn’t end with me saying something like, “How weird is this?”

Sometimes life throws stuff at you and you know, you just know you have to figure out a way to grab the opportunity.  So we did.  And now we’re going.  How exciting is that?

English: Old City Walls of Jerusalem - on Moun...

English: Old City Walls of Jerusalem – on Mount Zion – View towards the King David Hotel (Photo credit: Wikipedia)

Sometimes it Takes Someone Else to Believe

This past weekend Em and I went to stay with my friend Bobbie on Fire Island.  I wrote about all my worries and concerns at length in a post last week that I’ve linked Bobbie’s name to in the above sentence.  It was a really long list of What ifs.  I knew if things got to be too much, Em and I could always head back to the city by ferry and then train.  I had a plan B.  I was prepared.  Fourteen years living with Richard, the ultimate boy scout, seemed to finally have worn off on me.  I packed lightly.  I had my computer, my iPad, a book, Douglas Biklen’s Autism and the Myth of the Person Alone;  I printed out stacks of scientific papers by the neuroscientists, Kamila and Henry Markram as I will be interviewing them in Jerusalem in another ten days and because this is what constitutes “light” reading for me.  I brought a variety of highlighters and pens and pencils and my camera.

Emma insisted we bring ten of her books, which I tried really hard to talk her out of, but that she finally convinced me she couldn’t be without.  We had more books and technological devices with us than clothing.  Never mind, I thought to myself, it’s hot, we’ll be living in our bathing suits.  And then Bobbie was outside and we ran downstairs, piled into her car and headed off on our little adventure.   By the time we arrived in Fire Island it was afternoon.  There are no roads so all the homes come with bicycles.  You drag your things from the ferry in a little cart, which you then unload and leave the cart and bikes outside your house.  Inside children ranging in age from 4 to 14 raced around and adults ranging in age from their late 30’s to late 60’s chatted.  Emma was in her element.  She loves nothing more than a house bustling with people and lots of noise.

The ocean beckoned, but Emma caught sight of a swimming pool on someone’s deck, “Go swimming in the pool?” she asked pointing to the neighboring house.  I explained that this wouldn’t be possible, though I could tell Emma remained unconvinced and when Bobbie told us there was an Inn just a few houses away with a big swimming pool, it was decided.  Off we went with Bobbie’s daughter Mina, who is exactly the same age as Em.  We  jumped and splashed and played “chicken” where the girls sat on our shoulders while they tried to push each other off.  There was lots of laughter and squealing with excitement and delight and I had a moment when I realized I was laughing and Emma was laughing and Mina was laughing and Bobbie was laughing.  I stared up at the sky in that moment, atheist that I am, and said a silent thank you.  It was heartfelt and honest.  I was relieved.  So incredibly relieved.

Here I was with my daughter, visiting my closest girlfriend with her family and another family, whom I didn’t know, but who were wonderful and we were welcomed.   The children were kind and inclusive, no one looked at me or Emma in that odd way, as though they wanted to say something, but weren’t sure they should.  No one spoke about Emma to me in front of her as though she were deaf.  No one treated her as though she couldn’t understand.  Everyone, children and adults alike, were kind and when Emma insisted on playing her special version of Duck , Duck,  Goose for the 25th time everyone played and came up with inventive word groups and laughed and chased each other around and around.

Em carrying our left over Buffalo Chicken Wings home


“Sleep wake up, go swimming in the pool, go to the beach, say hi to Bobbie and Mina and Frankie and Molly and Luca, play.  Sleep wake up go swimming, play in the ocean, sleep wake up…” Emma said that first night as I snuggled next to her.

“Wait Em, we’re here two nights and then you have camp on Monday remember?”

Em nodded her head, but the following night she said the same thing.

On Sunday morning she said, “Stay on Fire Island with Bobbie?”

“No Em.  We have to go home this afternoon,” I told her.

“I want to stay with Bobbie?”  Emma said sadly.

“I know, Em, but Bobbie has to go back too.  We’ve had a great time.  But we have to go back to the city.”

Emma nodded her head and said, “That makes me sad.  Come back later?  Come back next week?”

“Maybe next year.”

Emma nodded.  “Okay.  Come back next year!”

I thought about how fearful I’d been, how I had carefully planned for problems that never transpired.  I felt such gratitude toward Bobbie for having believed this was a good idea and for urging me to go, for providing me and Emma with a safe place to test the waters.  It reminded me of something an elderly woman said to me when I was in my thirties and struggling – sometimes you have to let others believe in you, so you can learn to believe in yourself.

Em at dusk on the beach

Saturday night on the bogie board

Em, Me and Bobbie heading back to NYC on the ferry

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)

The Third Glance, Theory for Autism and Flying

Two things – the first is that I wanted to mention a post I loved reading, written by E. of The Third Glance –  a 22 year-old autistic adult.  Her “Growing up Autistic: On Nature, Nurture and Abuse” piece is powerful, heartbreakingly honest and written with elegance.  Hers was one of the stories I was referring to when I wrote in the Evolution of a Perception post, “The abuse, the prejudice, the cruelty all of these austists have endured is staggering.”  Richard and I also loved her post – My Cat Is My Hero.  It’s beautiful, but then so is the writer, E.

The second thing I want to mention is an interview with Henry and Kamila Markam about The Intense World Theory for Autism on the blog – Wrong Planet.  It’s interesting, problematic in that I worry it will be misinterpreted by some, (leading to the type of  universal parental blame demonstrated by both Kanner and Bettelheim) but this quote was such an amazingly accurate description of what I’ve always suspected Emma experiences, I had to read it twice just to be sure I’d read it correctly the first time.

“The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense…”

They go on to say – “The theory was triggered bottom up from neuroscientific studies and the real changing point for us was when we found that fear memories were so quickly acquired, lasted longer, were difficult to erase and over generalized. This put all the results into context because the neocortex could render the world intense, highly fragmented and overly specialized while the amygdala would dial up the emotional component of the intense world making it potentially extremely painful and aversive forcing the autistic child to take refuge in a secure bubble. If they don’t succeed to take refuge through repetitive behavior, routines, rocking, and other types of behaviors, then they may display self-injurious behavior – like ants crawling all over your body. The diversity comes from the fact that we are normally diverse and if you add hyperfunctional circuits to that then naturally each autistic child will be even more different from each other. It is like taking all our normal differences to an extreme. This challenges society to accommodate autists, but diversity is the key to social evolution and so it is a good challenge.”

We are flying out to Colorado this morning.  I wasn’t able to get a single seat together.  I even called the airlines and begged them to do something. I told them we were flying with two children, one of whom is autistic, but they said there was nothing they could do.  We aren’t even in the same rows!  Wish us luck.

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