Author Archives: arianezurcher

The Aftermath

Richard and I returned from Jerusalem and the icare4autism conference Friday evening.  It was so good to see Emma again after being away for an entire week. The three of us spent the weekend in NYC and then flew to Colorado where we were reunited with Nic (whom I haven’t seen in a month) looked after by my doting and wonderful mother.  I have at least three hours of recordings from the conference to transcribe.  I must write about the conference in greater detail, I have a great deal of work to do for my business, the one that actually brings in money, and I want and need to spend time with my family.  I’m tired.  That’s what I keep thinking.  But there’s more to it than that and I haven’t figured out yet what that exactly means.  There’s panic.  How am I going to get everything done?  But there’s something else, something I haven’t put my finger on yet.

It’s 4 AM (I’ve been up since 3) but you could tell me it was 1 in the afternoon and I’m so turned around I’d just nod my head.  So rather than say any more I’ll end with this – a little scene from last night.

Em:  Play duck, duck, goose?

Me:  Yeah, okay.

Em:  With you (points to me) and me (points to herself) and Nicky and Daddy and Granma?

My mother: What’s duck, duck, goose?

Nic:  You’ll see.

Everyone sits at the dining room table as Emma stands waiting. 

Em:  (Going around the table, while placing her hand on each person’s head)  Snow.  Snow.  Snow.  Snow.

My mother:  Should I do something?

Nic:  No Granma.  You have to wait.  She’ll say something different.

Em:  (Grinning, pats Granma on the head)  Raining!

Richard:  Oh no!  Emmy you have to pick someone else, Granma can’t run.

My mother:  (Looking horrified) I’m suppose to run?

Me:  (Laughing)  Yes, you’re suppose to run after her.

Em: (With mischievous grin)  Granma run?

Richard:  No, Emmy pick someone else, Granma can’t run.

Em: (Continues to go around the table) Snow. Snow.  (Puts hand on Richard’s head and hesitates.  Then shouts)  Raining!

This game continued for several rounds with Emma occasionally directing when things weren’t going as she felt they should.

Em:  Okay.  Last time for duck, duck, goose.  

When she’d finished going around the table, picked someone and after lots of screaming and laughing my mother said, “That was a great game!”

Em:  Play again?  (Looks around the table grinning)  Okay, okay, later.  Play duck, duck, goose later.  Tomorrow.

It’s good to be home.

Em on the High Line Sunday

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

To The Mayor Of Jerusalem Regarding Autism

The Mayor of Jerusalem made some remarks during the opening of the icare4autism conference yesterday morning.  The organization intends to have a home in Jerusalem and while they seem to be doing a great many wonderful things, there are a few things that are not so wonderful.  The following is a letter I wrote and sent to the Mayor’s spokesperson yesterday.

“Dear Mr. Mayor,

I am a writer and a mother of an Autistic child.  I am writing a piece I intend to submit to the Huffington Post about the Icare4Autism conference and Jerusalem’s involvement.  

I am in regular contact with a number of adult Autistics, both verbal and nonverbal, who are deeply concerned with the amount of press (almost all negative) that autism receives.  The autism = tragedy model is one they vehemently object to as well as the fact that they are rarely included or invited to be on the boards, advisory committees or consulted when organizations are formed or policy is made about them.  I am hoping both you and Icare4Autism will consider their concerns and am interested to know what you are planning for the future in this regard.  
 
Will you consider including autistic people as advisors, at the very least, who can help in creating better awareness and understanding not just in Jerusalem, but in the world?  You, Jerusalem, Israel and your association with icare4autism have the unique opportunity to do something none have done to date –  work with and help develop an organization that changes the public perception of autism by including Autistic people.  But this will require more than just one or two token Autistics, it will mean truly giving Autistics the opportunity to be a part of the development of policy and organizations meant to help them.  Autism is not a tragedy, however public perception of it is.  
 
Autism is a neurological difference from that of a neuromajority.  Suggesting cures, promoting imagery that is depressing with melancholy music, showing Autistics as burdens who are broken is something that in the US is sadly the norm.  The single largest Autism organization in the US is Autism Speaks, an organization that is abhorred by a massive number of Autistics.  The prevailing perception of autism as tragic and a devastating crisis creates more misunderstanding, panic and fear.  To be Autistic, to feel that your very existence is in jeopardy because of organizations intent on “cures” only increases that fear.  None of us make good decisions or behave well when fearful.  
 
I hope that you will consider the Autistic adults who are speaking out, who are asking to be heard, respected and given a say in organizations which use the word “autism” as part of their identity.  
 
I would love to include a quote from you on any of this.  
Thank you so much.  
All my best to you and your vision for Jerusalem and autism,
Ariane”

I am going to meet with the head of the icare4autism organization this morning and will speak with him about these concerns as well.  Keep your fingers crossed and wish me luck!

The photograph below is of the Autistic Boys Choir.  They performed yesterday at the opening.  People were openly weeping.  The performance was terrific, their voices exquisite, the joy infectious and a wonderful example of what “Autism looks like.”

 The moon over the Old City last night

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,

Baklava,

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.

Oy.

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)

Joe Scarborough’s Ignorance And What It Means To The American Public

I wanted to write about how Richard came home yesterday (Yay!) and how we took Emma to the Chelsea Market and how she insisted on wearing a pair of black patent leather shoes, turquoise tank top and pink terry cloth shorts with white hearts.  I wanted to post a couple of photos of her so you could see for yourself how great she looks, but when I sat down to write I knew I had to write about something else.

I don’t want to talk about Joe Scarborough any more.  Yet his unfortunate, ridiculous, careless and ignorant remarks, make it impossible not to mention him, because he has a huge following, because people imagine he knows something about Autism.  Joe Scarborough’s remarks are indicative of a larger issue – ignorance and misinformation, which leads to opinions and a general consensus about Autism that is incorrect.  One such commenter on an article about Joe Scarborough’s remarks, said he believed Joe Scarborough knew more about autism than he did because he has a son who is Autistic.  And that is exactly why this is about more than just some asshole with a radio show.  There are countless people spewing all kinds of venom on the radio and everywhere else.  Much of it is dismissed.  But when someone, whether it’s a pseudo celebrity or a talk show host with a large following says they have a child on the spectrum ears perk up.  Forget that AUTISTICS are talking about what it’s like to be autistic ALL THE TIME and their words are almost never in accordance with what that parent with an Autistic child is saying.

So just to reiterate:

Autism is NOT a “mental health” issue.  It is neurological, neither good nor bad, just DIFFERENT.

Joe Scarborough, (I know, there’s his name again) said in a statement he made yesterday, which was neither apologetic nor a retraction from his original inflammatory comments, “I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.”

Autism Speaks does NOT provide badly needed support to Autistics.  In fact Autism Speaks is uniformly HATED by a massive number of Autistics who speak to that fact on a daily basis.  If you google “Autistics who hate Autism Speaks” you will see more than a dozen pages of links addressing why this is so.  (Really, I just googled it.)

While I’m at it, let’s dispel a couple more myths, something Autistics are doing ALL the time on their blogs.

Autistic people are not inherently violent.

Autistic people do not LACK empathy.

Autistic people are not all loners sitting in a corner banging their heads against the wall  (That would better describe me right about now)  until they can no longer take it and go on a murderous rampage.

Autistic people are not all depressed and friendless.

I’m depressed right now.  But this isn’t about me, or how I feel, or anything else that contains the word, me or I.  This is about prejudices and prejudices are always negative, reinforced by ignorance, ingested by those who believe they are being told the truth by someone who is more knowledgable than they are about something they know nothing about.  This is how it works.  This is how it has always worked throughout history, the demonization of a group of people whose voices are drowned out by the larger roar of ignorance and stupidity.

I refuse to end on this note, however.  So here.  Here are a couple of photos of Emma in the outfit she threw on to go to Chelsea Market yesterday evening.  Because Em is one more example of what Autism looks like.  Emma is inherently HAPPY.  Emma is inherently SOCIAL.  Emma is inherently KIND.  Emma is inherently EMPATHIC.  I’m trying really hard to follow her lead.

This is Autism.  This is Emma.

Loved that as I took this photo a woman wearing black patent leather pumps and turquoise dress walked toward her!

“I can’t reach!”

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Autism, Assumptions and Perpetuating Misperceptions

I was going to write something about the Aurora shootings, but I think it’s better if I give some links to things others have written.

This link is from Lydia Brown on her blog Autistic Hoya – All I Want to do is Weep.  She wrote it last Friday, July 20th before Joe Scarborough, whose son is Autistic, weighed in with his damaging, destructive words, needlessly adding fuel to the flames of ignorance and misperceptions that roar whenever the word autism is spoken.

Then, just as Lydia and others within the Autism community predicted, Joe Scarborough said,  “As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again..”  He added, “Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not.”

His words, so predictable, so incredibly stupid it would have been comical had it not been so very harmful to so many.  When I read his comments I thought, people will read Lydia’s piece and assume she’s psychic, because that would be the only explanation for her ability to predict such a thing.  Right?

Kassiane Sibly wrote on her blog Radical Neurodivergence Speaking – Open Letter to the Media in the Wake of the Aurora Shootings

Paula Durbin-Westby wrote: Autism, Aurora Shooter, and Actual Crime Statistics

Rachel Cohen-Rottenberg wrote: Despicable: Joe Scarborogh’s  Words on Autims and Mass Murder

And finally here is the petition Rachel started, demanding Joe Scarborogh retract his statement.  Please sign.  This is too important.

Sign this Petition

These “theories” and it seems they are always “theories” which appear to be code for “opinion” are doing damage to people who are living their lives in a society that not only does not understand, seems unwilling to understand and even actively refuses to understand despite all the people who are trying to help them understand.

Autistics are saying – LISTEN TO US!   And we look around and say, huh, I don’t hear anything.

Autistics are saying – STOP SAYING THINGS ABOUT US WITHOUT INCLUDING US IN THE CONVERSATION!  And we look around and say to one another, Huh.  Did you hear something?  Nah.  Carry on.

Autistics are saying – NOTHING ABOUT US WITHOUT US and we say, I don’t understand.  Why are they so angry?

Autistics are saying – YOUR MISPERCEPTIONS ABOUT US ARE HURTING US and we say, oh those autistics are not like my child, that’s not what my child would say.  My child is nonverbal.  My child can’t type.  My child doesn’t have a blog.  My child can’t say the things those Autistics can say and do.  My child is different.

How do you know? 

How do you know?

Joe.  You made a mistake.  Retract.  Apologize.  Make amends.  Have an Autistic on your show.  Listen to them.  Listen to your son.  Do the right thing, educate yourself.  You have a massive following.  You could make an incredible difference to so many lives including your son’s and your own.

I will end with this thought. I choose to presume competence, not just in Emma, but in myself and in my fellow human beings.  We ARE capable of listening to one another.  We ARE capable of shifting the perceptions of autism and Autistics, one person at a time.  I believe that, because to do otherwise is to live in a world I cannot and do not want to be a part of.

Emma Takes Mom on An Awesome Adventure

Yesterday Em asked to go to Victoria Gardens, the amusement park, that each summer transforms the ice skating rink  in Central Park into a kid’s idea of heaven.  “Sure, that’s a good idea,” I told her.
“Take the F train,” Emma announced and began to walk purposefully toward Sixth Avenue.  “But the F doesn’t take us to Columbus Circle.  Why don’t we take the 1?”  “Take the F train,” Emma said matter-of-factly and continued walking toward Sixth.   Once on the train Emma found a single vacant seat in the crowded car and said, “Oh no!  There’s no seat for Mommy!  Mommy has to stand.”  The man sitting next to her immediately got up with a guilty expression and offered me his seat.  “Oh no, that’s alright.  It’s no problem,” I tried to assure him.  But he refused to sit back down, further humiliated, no doubt, by Emma’s interjection of “Oh Mommy cannot sit down next to Emma!”  (Clever girl, I thought to myself, and I’ll admit, with a tiny bit of pride.)  Even though that poor man who gave up his seat had no way of knowing that Emma actually prefers I stand and not sit next to her.  It’s become something of a game, with Em saying in a pretend sad voice, “Oh no!” but then when I sit next to her she pushes me or tries to get me to sit across from her.   (Making me all the more determined to get Emma some theatre training.)

When the train pulled up to Rockefeller Center Emma stood up and said, “Have to take the D train.”  I know enough not to argue with Emma because there are a number of things Emma knows better than anyone and one of them is how to navigate the labyrinthine maze that is the New York City subway system.  Except that when we arrived at Columbus Circle Emma stayed put.  “Hey don’t you want to go to Victoria Gardens?” I asked.  Emma grinned at me and said, “Go fast!”  Then she shook her head and said, “Train goes fast, fast, fast?”

“You want to stay on the train?”

“Yes!”  Emma said.  So we did.  As we sped past each stop Emma shouted out, like the seasoned guide that she is, a specific playground or significant landmark.  “Oh, there’s the American Museum of Natural History!  Oh there’s the tar playground! Oh there’s the …”  We raced along until 125th Street where Emma then led me off the train and walked over to the tracks heading back downtown.  “Where to now Em?”  I asked, having decided after we left the house that Em was going to direct the day, I was very much the passenger along for the ride.  And what a ride it turned out to be.

We eventually made it to Victoria Gardens, but not before we stopped at another large playground and ran through various sprinklers, went through a tunnel, listened to a musician playing his Saxophone, past the artist who’d set up shop  face painting small children to look like fairies, goblins and ghouls.

After several hours at Victoria Gardens we took more trains downtown, transferring so many times I can no longer keep our route in my head, but ending at Seal Park where I ran into one of my close girlfriends and her son.  Another hour and then Em said, “Now go to Chelsea Market!”   Off we went, with Emma lacing her arm through mine and occasionally she’d press her soft cheek against my upper arm.  Emma talked about the new school she will be attending in the fall, she listed all her friends, teachers and therapists, “Justus is gone, Sol is gone, Charlie is gone, Lauren is gone, Miriam is gone.  Emma goes to new school!”  (I’ll write a separate post about that another day.)

Upon our arrival to Chelsea Market Emma raced to the water feature and began to point at various things that she wanted to know the name of.  We discussed how there were wooden planks on the floor and what was under those planks – maybe a hole, darkness, who knows?  She tested the plank by sliding her foot through the guard railing and pressing down on it.  She pointed to the water gushing from a large pipe overhead.  We discussed where the water might come from, “Ocean” was Emma’s guess, and it did have a briny smell, either that or the Lobster Place and Seafood Market just opposite was giving off the distinct scent of salt water and fish.  Emma pointed to the large pipe and we walked around to the other side, following the pipe.  A huge wheel hung from the pipe and Emma said, “I can’t reach!  Have to get a ladder to turn the water off.”

This conversation with Emma was revelatory for many reasons, but most importantly it was the first time I have had such a lengthy conversation with her about something that did not have to do with a want, desire or need.  She was curious and though she spoke cryptically throughout our conversation leaving me confused as to what she was saying or asking, it was fantastic.  “Plank fall in,” she said at one point pointing to the water.”  And then again pointing up at the pipe, which I didn’t understand, making me wish I could put the pieces together.  I have been unable to find out any more about the water feature at Chelsea Market, having spent some time on google when we returned home.  I tried to find out the source of the water, does it ever get turned off, is it recycled, etc. so that I could tell Em more about it.   She was curious, engaged even mesmerized.

Eventually we headed back home, but not before we stopped at one last playground to run through the sprinklers!

When we arrived home, Em said, “We have to call Daddy!”  It was just one more first in a whole day filled with them!

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Continuing The Conversation…

Be honest.

I’ve written about this before.  Writing, writing that really reaches out and pulls others in is about honesty.  Even if you write fiction, it’s still about honesty, the feelings portrayed, the dialogue;  it has to be honest for those of us reading or we can sense it.  We know something’s a little off.  Sometimes it’s hard to pin down, it doesn’t seem obvious right away, but I’ve found it’s because I don’t believe what I’m reading.  It’s not entirely honest.  I have had this experience with my writing.  I have written things and then wondered why it didn’t feel quite right and it’s because I either hadn’t dug deep enough or I wasn’t being honest, which in many ways is the same thing.  Self dishonesty is one of the most difficult things to spot.  I spent years and years in a place of deception, of hiding from myself, my feelings, my desires, my ambitions.  I shut down.  I hid and it caused great pain, not just to me, but to those who loved me.  It’s hard work to be honest.

A couple of days ago I wrote about labels and my struggle to understand how and why they do not apply to our Autistic children.  Why they cause damage, why they are destructive and not constructive.  As is often the case, I use this blog to figure things out.  I think of it as my sketch pad where I play with ideas and then either move on to the next sketch or work and refine.  The pieces I work on a bit more, I often submit to HuffPo, I think of it as filling in with color and others I keep working on with the hope of putting them into a book, a finished canvas (this last part is very hard for me, sketching is easy.)  But as I’ve also said, I’m a SLOW learner so sometimes ideas will fall easily onto the page, or in this case the screen, but not move beyond it.  And that’s where the work comes in.  Because ideas are great, but if I can’t take them to the next level they won’t go anywhere.  Some things seem to take me awhile to really get, to fully  incorporate in a way that they become less an idea and more a knowing.

So it was this morning as Em and I made her breakfast.  I was thinking about labels and why they matter or don’t matter and why they bother me and cause me to ruminate and at a certain point I tired of the ongoing controversy raging  in my head, so I forced myself to shift my thinking away and be present for my daughter.  I was able to and eventually off she went with Joe onto the camp bus and I turned to my email and there was Outrunning’s latest post.  Now for those of you unfamiliar with Outrunning The Storm, click on the name, I’ve provided the link.  Did you read it?  The post – How Do We Talk About This?  I’ll wait.

I’m waiting…

Okay.  So there it is.  For those of you who didn’t click on the link, skip to the next paragraph, but for those who did, and if you’re like me, you also clicked on the comments and saw the first three from Moms who got what Outrunning was saying, who’ve been on the receiving end of exactly what she’s referring to and get it.  They get it, or so it seemed to me when I read their comments.  And then there’s my comment.  Yeah.  Okay.  So I still have some work to do.  I’m pleased to say that I did go off after leaving my comment and sobbed.

I’ve been very weepy lately.  Partly I blame my husband’s absence, he and Nic remain in Colorado while Em and I are here in New York, so I’m a little off-balance.  There’s a lot going on this summer and at times it all feels overwhelming, in a good way, but never-the-less overwhelming.  But I think most of my emotional overload is due to the fact that Peyton and Dianne Goddard’s book – I am intelligent – has stayed with me, in addition I received an email from Emma (not my daughter, another Emma, who two years ago began to communicate through typing and has a blog) that both delighted me and filled me with emotion.  I asked her permission to quote her and she has given it, but I want to be sure I also respect her and so will quote just two sentences.

“me name is emma and i am like peyton.”

And this:

“i am pleased if our emails teach people how to measure words or personal stories in front of people they think cant communicate..

Emma”

Take a deep breath.  Okay.  Be honest.

I spent years doing this to my daughter, exactly what Emma is pleading that we not do.  It has only been within the last year that I have stopped doing this.  I have to make a concerted effort to refrain from the temptation.  So I read Emma’s words again.  I have memorized them.  “I am pleased if our emails teach people how to measure words or personal stories in front of people they think can’t communicate.”  Read that again.  There is no condemnation, no criticism, just a heartfelt request.

We are in this, all of us, together.  Your version may be different from mine, you may have children, you may not, you may have someone you love who is Autistic or you may not.  You may be Autistic, you may not.  But we are all, each one of us in this together.  There are Autistics calling out, trying to be heard, blogging, talking, communicating, asking for respect, asking for a chance to join the conversation.  There is no conversation if a whole group is silent.  Whatever group that may be.  We are ALL served by listening, by sharing our experiences, by trying to understand.  As human beings it is our obligation to be honest, to try to dig deeper, to listen.

Alone we can do so little, together we can do so much.”  Helen Keller

Richard, Me & Em – 2003

Nic and Emma – 2011

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A Mess, A Mom & Marriage In That Order

Mess of Me

I was a pretty messed up teenager.  I quickly developed into a very messed up twenty something, who progressed into an even more messed up thirty something.  Taking a breath.  Whoooo.  I’ll spare you the gory details, suffice it to say, I was a mess.  Another breath.  I don’t think I’ll get a great deal of argument from those who knew me then.   In fact, it took me until I was 36 to realize I was far too old to be so confused and such an utter mess.   I found people who had also once been where I now found myself, some worse, some not as bad, but they reached out and pulled me up.  Because of them I learned how to reach out to others.  I learned how to ask for support.  I learned to take suggestions.  I learned how to make amends, not apologies, amends.  I learned that in order to feel better I had to behave better.  I learned that the most important thing I would ever do in my life was to become the type of person I admired and those people all had one thing in common.  They were kind.

Becoming that person meant learning to do small thoughtful acts.  Remember I was a mess.  Doing the obvious, was not my strong suit.  I couldn’t suddenly transform myself into someone else, I had to learn to look for things that I could do to help others.  In the beginning it was things like holding the door for someone, giving up my subway seat to someone else, holding the elevator doors open for someone just entering the building instead of madly jamming my index finger at the “close door” button.   I had to learn how to refrain from letting out an exasperated and audible sigh when someone annoyed me, (still working on that one) I had to learn that sometimes saying nothing was better than saying something. This may sound like common courtesy, but I live in New York City, where holding the elevator doors for someone or relinquishing your subway seat brands you as crazy, (exaggeration) in addition I was a mess, remember, which automatically trumps being polite, thoughtful or kind.  By behaving in a way that engendered smiles and utterances of gratitude I gradually began to feel better about myself.  By helping others, mentoring other people younger than me who were also having a tough time, but who now saw a person they wanted to emulate, I began to feel I was worthy and living a life of value. I learned how to be a part of a larger group and that while I often craved solitude, I found I needed community.

About two years after I was hit with the realization that I was far too old to be such a mess, I met Richard.   We decided we wanted children, had Nic, got married, had Emma and suddenly there we were, five years later, after I had that moment of dawning awareness that there must be more to life than what I’d been living.  So yeah, I’m not a great role model in how to graciously and elegantly enter adulthood, easily taking small manageable steps until one day there you are with an infant, a toddler, and a husband.  But I had a little road map, a kind of guide-book with rules and suggestions, not literally, but figuratively and I was continuing to work on how best to behave in any given situation.  I had phone numbers and emails of people who helped me and of the people I helped too, so I felt fairly certain I could handle whatever might come my way.  But parenting is unlike anything else.

Despite what some people might think, okay strike that, no one is thinking this, but it works as the beginning to the next sentence,  I was not given a super hero’s cape along with matching Lycra body suit with the word MOM in dayglo colors emblazoned across the chest when my son was born.   I did not, after 38 hours of natural child-birth suddenly find I could dash into arbitrary enclosed structures, don my supermom costume and reappear in all my lycraed, daygloed glory with  powers of insight, lightening quick reflexes and the infallible ability to intuit what my son needed and wanted at any given moment of the day or night.  Ditto when my daughter, Emma was born.  No handbook came with either child, carefully guiding me through their very specific needs and issues.  Nic cried and held his small hands over his ears when a siren went by or the subway came to a screeching halt in front of us, Emma screamed from internal discomforts none of us could see for the first few months of her life.  Who knew?  We certainly didn’t.

We humans, we come with baggage.  Some have more than others.  Me, I came with a couple of steamer trunks, but I also had that well-worn guide-book from when I was such a mess and couldn’t figure out whether it was better to keep sleeping or wake up and do something.  It was and is my lifeline.  It’s expanded to include lists of blogs, twitter contacts and Facebook friends all of whom I can reach out to.   You see, I now have hundreds of people I can interact with and these people are my community, my tribe.  Sometimes we behave badly, sometimes we don’t agree.  But I know hiding is no longer an option.  Checking out doesn’t work.  The only way out is by staying in.  I know I’m not alone.  I’ve learned that it’s perfectly reasonable to not know or understand something and this is something I have learned from my Autistic friends, the beauty in asking for clarification.  It’s okay to not understand as long as you are willing and want to understand.

There is a great deal of talk about Autistic children.  There is a tremendous amount of fear that if we miss that critical period of our child’s first five years, all is lost.  But we humans have a tendency to grow and progress throughout our lives.  Some perhaps more than others.  I cannot speak for others, but I can speak for myself.  I am not the person I was in my teens, my twenties or even my thirties.  I figure as long as I keep my mind curious, my ideas open to alternate views and continually engage in conversation I will not stop progressing.  There is always hope.

I Think I Finally Understand – But I May Still Need Your Help

I am reading I am intelligent by Peyton Goddard and Dianne Goddard with Carol Cujec.  I am not finished yet.  It is a powerful, beautifully written tale of triumph about Peyton who was denigrated, undermined, diagnosed as “mentally retarded” believed to be incompetent then learned to communicate through a facilitator as a young adult and proved everyone wrong.  Peyton’s story is shocking, heartbreaking and revelatory.  Her mother writes with a poetic beauty about her own evolution as she worked to help her daughter, refusing the labels being applied and yet allowing that they seep into our thinking unbidden despite our rejections of them.  I have been  unable to think of little else.

As I read Peyton’s and her mother’s words I finally understood why so many object to the labels of “high,” “low,” “moderate” when describing an Autistic person.  This is a concept I thought I understood, I certainly understood it intellectually, but I didn’t feel I completely understood until I was about half way through this terrific book.  I have felt uneasy when people have rejected the delineations for autism.  A  little voice in my head whispered those clichéd words, yes but if their child weren’t so high functioning they wouldn’t be so quick to dismiss these terms.  I admit to having felt uncomfortable and even upset when I read accounts of other parent’s struggles with their brilliant, verbose, hyperlexic children.  What I would give to have a child who could speak and think circles around me, I thought with envy.

Mostly I’ve remained silent, understanding that my thinking was limiting but unable to work out exactly why.  I felt the pull of other parents whose children are non-verbal, some violent in their frustration to be understood and unable to communicate. When those parents used the word “severe” it was a short-hand I thought I understood.  Yet, I read a blog of a parent who described her two children as being “severe” and then felt confusion when I read her posts because the children described were academically and verbally much more advanced than my own “moderately” Autistic child.  But I said nothing and tried to move on, understanding that I didn’t understand.

Finally I sent such a post to a close autistic friend whom I trust and knew would not judge me harshly.  I ranted and admitted how I felt.  She was patient with me.  She gave me the space to be confused, though it must have been difficult to stay calm in the face of my non-understanding.  Particularly as she is one who could be labeled “high” functioning and yet her teeth cause her pain when she is lied to, she suffers migraines and becomes overwhelmed, yet feels she has to pretend that she’s fine.  She carries the weight of not wanting to burden those who love her, because she “should” be able to deal with the things that she cannot.

As I read about how Peyton started to communicate by typing and how people began to see how intelligent she was, a little light went off in my brain and I got it.  Because (and this is probably obvious to many of you already, but I’m a slow learner you see) Peyton was labeled all sorts of things by people throughout her childhood, but those rating systems did nothing but hurt her.  Not one of them actually helped her, they didn’t support her, they were used to further segregate her and they were used by some to abuse her horribly.  As I was reading, I thought, right because Emma is considered “moderately” autistic, but she’s not moderately intelligent.  Her intelligence is extremely high, so what does moderate really mean.  Is that how she “seems” to neurotypicals?  But how is that helping her?  It doesn’t help her.  In fact, by thinking of Emma as moderate or severe or mild she is being limited.  If someone who is thought of as “high” functioning then can’t cope in a crowded place with fluorescent lighting and begins shouting and flailing about, the common thought is, well he could control himself, but is choosing not to.  Just as a “severely” Autistic person is an inspiration and miracle when they are able to express themselves and communicate their thoughts to those who had slapped a low IQ on their charts.  These ratings become the method by which a human being is seen as non-human or less human.

In my enthusiasm I wrote to my friend, Ib last night.

Me:  I think I finally understand what you and others have meant about characterizing autism in terms of mild, severe etc I suddenly had a brain flash and I think I understand why.

Ib:  Oh thank heavens 😀

Ib reminded me that the scaling system is ineffective as a descriptive device as children grow, progress and become adults where they continue to grow, evolve and progress.  I thought of Peyton finally finding a way to communicate in her early twenties.

Ib said, “You wouldn’t grade me now as you would grade teenager me the level doesn’t stay we grow, like anyone else.  I remember things that is why I can suggest to you what Emma may mean with levels-thinking, you may never have seen me as a resource because “Ib is not like my Em” but you see that I am.”

Ib is right.  She is my friend, first and foremost, but she is also someone I rely on to help me understand.  Because there is so much that I don’t.  But with help I can.

I would love to hear from anyone who cares to chime in here.   If I’ve been disrespectful, please let me know.  I think I’m getting it, finally, but I want to hear from all of you.  I need to understand this.  For my daughter’s sake, I have to understand and she can’t explain it to me…  yet.

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