Tag Archives: Autism

It Finally Happened!

The word autism was mentioned during one of the presentations I attended. Patricia Kuhl, PhD presented on “The Child’s First 2000 Days” where she spoke of that critical period, those first 5 years of life, when the brain has its single biggest growth spurt.  She cited some studies done on tri-lingual and bi-lingual children, showing that critical period of growth is sustained for a longer period.  She spoke of how children respond to humans, the mother’s voice, and how technology should not be used in the first two years of life.

Patricia Kuhl

And then she said the word “autistic.”  She spoke about the need for more research, how in those children the mother’s voice was not sought, in fact it seemed to cause discomfort.  She spoke for about two or three minutes about studies being done with autistic children and then continued with the rest of her presentation before opening it up to questions from the packed room.  Hands flew up and suddenly there was the man with the autistic child asking for more information about technology’s role in teaching autistic children.  Then there was someone else with a question about language acquisition and autism.

I was sitting in the last row and usually do not ask questions during these discussions but wait until after the talk to approach the speaker.  But I couldn’t help myself.  Up went my hand, was she aware of Henry Markram and his Intense World Theory for Autism and if so, what did she think of it?

But though she’d heard of him, she wasn’t familiar with his theory.  Still, I was pleased that someone had included autism in the hundreds of discussions and presentations even if for just two minutes.  And it got me thinking…

If you could put together a series of discussions on Autism presented at a festival such as the Aspen Ideas Festival, attended by some of the wealthiest and most influential people in the country, where the mainstream press is well represented, who and what would you want to see and hear?  A couple of people wrote in the comments section yesterday and it was exciting to hear them.  I’d love to hear more from anyone who cares to weigh in.

Where’s Autism in the Aspen Ideas?

Over the past four days at the Aspen Ideas Festival I watched Lu Chuan‘s movie, City of Life and Death, about the massacre of the people of Nanjing,  heard the wonderfully inspirational Jane Shaw talk about Our Moral Imagination, saw a film clip of Lixin Fan’s Last Train Home, a documentary about migrant workers trying to get home to see their families and Louie Psihoyos‘ latest, yet to be named, documentary about  “an unlikely team of activists who come together to solve humanities biggest problem… ”  I have heard about the evolving interface between mankind and machines, the evolution of design and why theatre and the arts matter.

The most interesting sessions have been those that talk about either values or the arts.  Leigh Hafrey’s discussion What is “Values-Based Leadership?” and Jane Shaw’s Our Moral Imagination as well as  Elaine Pagels, Who Wrote the Book of Revelation – and Why Do People Still Read it?   and Theater That Matters with Anna Deavere Smith, Julie Taymor, Gregory Mosher, and Oskar Eustis were all provocative and interesting.

As much as I have enjoyed this year’s festival, I was saddened to see there was not a single presentation that had anything to do with autism.  In fact the word “autism” was only spoken once in the many sessions I attended and that was in reply to a question asked during the presentation by NPR entitled, “A Fish Tale”: Is Lying Okay?  The NPR journalist who covers neurology, Jon Hamilton said, “People with autism have a terrible time lying, which is why they have trouble in society.”  There were some mutterings of surprise in the audience and then everyone moved on.  In fact the conclusion of that presentation seemed to be that lying is necessary and therefore part of our evolution as a species, which seemed like an amazingly bad idea.  It makes me all the more hopeful that Henry Markram’s Intense World Theory for Autism is correct.

Enjoy this photo montage of the highlights.  When I began taking photographs of Pervez Musharraf, I was actually followed by two secret service, lending a cloak and dagger feel to the whole adventure!

Pervez Musharraf

Barbra Streisand

Katie Couric

Jane Shaw – Dean of Grace Cathedral

Louie Psihoyos – Director of Academy Award Winning Documenary, The Cove

Emma (my favorite “important person”).

 

Ideas About Autism At The Aspen Ideas Festival

I’m attending the Aspen Ideas Festival for the next six days.  As a result I am meeting a great many interesting people.  But many people who see my Press badge are curious, what do I write about?  How is it that I’m at the Aspen Ideas Festival?  Inevitably the conversation comes around to autism, because let’s face it, that is what I write about more than anything else.  Autism is something that everyone has an opinion on, or if not an opinion, then a great many ideas.

Most of the comments I hear are in the – It’s an epidemic, vaccines must be the reason, or questions about where on the spectrum my daughter Emma falls.  If I say something positive about my daughter, they usually respond with the mistaken assumption, “Oh she must be Aspergers,” or “You’re so lucky she’s so “high functioning.”    As though that could be the only explanation for words that aren’t negative.  Amy Sequenzia eloquently describes her journey from ableist to advocate, on the blog, Autism Women’s Network.  It is the single best description I’ve read, which explains beautifully how our perceptions and ideas about autism affect those who are autistic.

Often people want to tell me stories about someone they know whose cousin, brother/niece/son/grandchild/best friend’s step brother/best friend’s neighbor, is autistic.  Sometimes people are genuinely interested and will ask me questions, but most of the time, they prefer telling me about that person they know twice removed who knows an autistic person.  There is a tremendous amount of fear out there.  I hear it all the time.  People talk about autism with the same grave tones they speak of the environment.

So I wasn’t surprised this evening when I met a couple who’s close friend’s grandchild was autistic.  “It’s so sad, just awful,” the woman said.  And then shaking her head she added, “It’s such a dreadful disease.”

“Actually it’s not a disease.   It’s not contagious.  It’s neurological,” I interjected.

The woman paused and stared at me and then said, “It’s horrible.  Very, very sad.”

“I don’t see it as a tragedy,” I began.

“Oh,”  The woman interrupted me, “well, of course you don’t.”  She took a step back and smiled.  And just like that, the conversation was over.

When I have these sorts of conversations, I see just how far we have to go in educating the public.  I know we will have to undo centuries of ingrained thinking about disability.  I understand that some people will never be convinced.  I hear others who have an opposite and yet equally unrealistic view of autism.  They are the ones who usually bring god into the mix, or talk about angels, or how these children are all geniuses or shamans, but whichever extreme they choose it is still an extreme and both do damage to those who are living their lives on the spectrum.  Whether they are being condemned as a tragedy or placed on an altar, they are being put in an impossible position that does nothing to actually help them.

It’s tricky.  How do you think about someone who needs tremendous support?  For many it is impossible not to project pain, suffering and the idea of tragedy onto them.  But very few people I know who are autistic or disabled want pity.  They want help, support and acceptance so they can flourish.  Pity or the converse of that, adulation, holding them up as divine creatures put on earth to teach the rest of us some hard-earned lessons, is not something I’ve ever heard an Autistic say.

One of the presenters at the Aspen Ideas Festival, Louie Psihoyos, who directed the amazing Academy Award winning documentary, The Cove, said during the Festival’s opening, “A few thoughtful people can change the world.”

I believe that absolutely, I believe.

Emma on the 4-Wheeler

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)

Laura Nagle, Vectors of Autism and Other Exciting News

In response to my post – Losing Sleep, Autism and Strange Noises in NYC – I received a great comment (all the comments I get are great) but I’m referring to one specifically.  It was about the Theory of Mind as well as lack of empathy conclusions Simon Baron-Cohen and others like him have made.  The person who is autistic, wrote:  “But we are not being laughed at, dismissed or ignored anymore. People are arguing with us. That means they hear our message and they are aware that it conflicts with what they have been taught. Their confusion will diminish over time. The people who need to be told what to think will always listen to, and agree with, the loudest voices. And our voices are becoming louder. If we perseverate, then we will persevere.”

In keeping with this thought, you must watch this YouTube video –  A preview for the upcoming “Laura Nagle: Vectors of Autism.”

The 50 minute documentary, which this video is a preview to, will be awaiting me when I return to NYC in July.  I will be reviewing it here and for the Huffington Post.  Leah Kelley has been posting about the documentary and Laura for a while now on her blog – 30 Days of Autism.  In this brief preview Laura talks about how quickly she can read, she says, “I’m good at that” (pause and then laughs) “I’m not good at life.”    I won’t say more as I really want everyone reading this post to please take 5 minutes to watch the video, it is wonderful.

I also want to urge all who are as fascinated and disturbed by some of the various “theories” out there about autism as I am, to go over to the blog – Autistic Hoya.  There are so many terrific posts it was difficult to decide which to add links to, but to begin here are two of my favorites (but the whole blog is an education)  The Dangers Of Misrepresentation and The Other Side Of Disclosure.

I will be covering the Aspen Ideas Festival for the Huffington Post from June 27th – July 3rd, unrelated to autism, but still very exciting.  I have no intention of shirking my posting responsibilities here on Emma’s Hope Book, but may be posting on the run as they say, so please forgive typos and seemingly random thoughts.  On second thought you probably won’t even notice as that’s pretty much the norm for me anyway!   I have been asked to cover the icare4autism conference in Jerusalem, July 31st – August 2nd.  I have accepted their generous offer and am very excited!  A quick back story – when Richard and I first heard about Henry Markram and his Intense World Theory for Autism (this link is an in depth scientific paper.  It is not light reading, but if you’re interested, it is very interesting), we read that he would be giving a talk in Jerusalem in August.  At the time, now more than seven months ago, we joked – wouldn’t it be great if we could go to Jerusalem to hear him?  Just over a week ago I received the invitation and learned that this was the conference he will be presenting at!

And finally, I am including two, completely arbitrary and utterly unrelated photos…  just because… well, because I can and I felt like it and they make me smile and maybe they’ll make you smile too.  Please ignore the dust.

Merlin and the Gator

For a little perspective…

Related articles

An Ode To Richard

I’m not trying to confuse anyone.  I post Monday through Friday.  Father’s Day was yesterday, so technically, writing an “Ode to Richard” today makes more sense than posting it last Friday when it would have been more than 48 hours away as opposed to about ten (at the time of this writing.)  Or so goes my convoluted logic.

Father’s Day, 2012 – Richard walking along the Hudson River with Emma and Nic

Autism doesn’t say much about all those dads out there who are tirelessly working to help their autistic children.  I know a few of them, but the one I know best, obviously is my husband, Richard.  This post is for him.

An Ode To Richard

You didn’t have a role model in your own father, yet you’ve managed to become one to your two children, Nic and Emma.

You’ve taken the traumas of your past, looked at them, dissected them and in doing so, pushed yourself to make sure you won’t repeat their lessons.

You are strong and secure enough to know that men can and do cry and those tears in no way diminish who you are, but serve to make you even more courageous and brave.

Your sense of humor has taught your children that nothing is so serious we cannot laugh.

By pursuing your dreams and doggedly doing what you love, you have shown them that they too can dream.

By never giving up, persevering and following your heart instead of a career you detest, but that will ensure a large income, you have encouraged them to follow their own.

By working tirelessly toward a goal, no matter how many obstacles have been thrown in your path, you have taught them to never give up.

By never accepting the word ‘no’ when applied to something you want, you have taught your children that what they want and care about is important.  You have taught them that they are important.

Through your compassion you show your children the path leading toward humanity, love and kindness and away from violence, cruelty and narcissism.

By giving your children your time, by enjoying their presence, by actively participating in their daily struggles, you have given them a gift no one will ever be able to take from them.

You have provided them with a role model so that they may not have to work as hard as you have.

You have given them the gift of knowing they are loved by their father, accepted completely for who they are and who they will become and in doing so you have provided them with a stability and security no structure or amount of money can.

You have provided them with a map, to help them navigate this life.

In giving, you have received.  In listening,  you have been heard.   In leading, you have been led.  In loving them, you are loved.  And yet you do all of this, not because you want anything in return, you do all of this because this is who you are.

To Richard.  My love.  My partner.  My inspiration.

Related Articles:

Richard, Oxytocin, Literacy & Love – Not Necessarily in That Order

Aspen, Work and Richard

Marriage – Part I

Marriage – Part II

This one is for the dads (Stuart Duncan’s Blog – Autism From a Father’s Point of View)

Listening to Emma

“Bad ear infection.”  This was the pronouncement made by the doctor who Emma saw yesterday.  Emma knew.  (Click ‘here‘ for a post about another time Emma knew and the only other time Emma had an ear infection.)  Emma told us to take her to the doctor.

We are relieved we made an appointment and sought help.  We are grateful to have her on antibiotics, which will ease her pain.  We are happy she is feeling better.  Those are the important points.  All the other words racing around in my head are less factual and more words that poorly convey my feelings of despair that I didn’t realize her pain was different than usual, that it meant something else was going on than a change in air pressure and anger with myself that I didn’t rush her to the doctor the minute the school called me two days ago.  My defensiveness, like the stereotypical white angel perched on one shoulder whispering, but you didn’t know, you couldn’t have known, is countered by the angel with devil’s horns yelling, “Yeah, but you should have!”  That dialogue or actually any dialogue that begins with – But you should have known – is better left elsewhere.

The art of the beat up job, something I could certainly write a handbook on at this point is not a message I am interested in perpetuating or sending.   What I am interested in is how I  might avoid a similar scenario in the future and take the necessary actions so that next time I can take care of my daughter in a more timely manner.   That’s interesting.  The beat up job is not.

Conclusion:  When Emma says, “Go see doctor.”  Immediately get her to the doctor.  Do not wait to see if things will get better.  Emma knows.  The cliché “better safe than sorry” leaps to mind.

This morning – Emma dancing to MJ’s Beat it 

Emma’s new-and-improved old string is back!

What’s a “Good” Mother, Anyway?

I cannot stop thinking about one of the Autists who commented on my latest Huffington Post piece.  He is Autistic and is unable to function without the support of his family.  He writes about his wish for a cure.   He writes about his short-term memory, his “lack of visual-spatial and motor abilities, inability to interact with others in basic interactions, weak attention span, processing speed, reaction time…”  He writes, “If I had skills and could really absorb knowledge, I’d have some kind of a career and I would do basic things without my family all the time.”

Before I responded to him I reached out to some Autists I know asking for their thoughts.  Some people responded, for which I am grateful.  Steve, diagnosed after his child was diagnosed, thoughtfully provided me with a number of links and introduced me to Amy Sequenzia, a non-speaking, Autistic self-advocate.  Amy blogs for a wonderful community blog Ollibean and was profiled on The Thinking Person’s Guide to Autism, Slice of Life Series (click on her name to read) and  Paula Durbin-Westby the mastermind behind “International Autism Acceptance Year”  also profiled on TPGA’s Slice of Life series offered some suggestions.

As I read their thoughts and opinions and words I felt a surge of anger.  Because these are the people the neuromajority should be listening to.  Take a moment to imagine.  Imagine you were unable to do a number of things without the help of others.  Think how you would feel if those people, the very people you depended on spoke to you with undisguised annoyance, or worse, outright contempt.  Think about how that would effect you.  You didn’t have the choice to walk away.  You didn’t have the ability to leave.  You had to stay because you needed their help.  But their help came with a price.  It wasn’t given freely.  There was disdain, irritation and often you were spoken to as though you were dirty, damaged or contagious.  Or perhaps people were kind, but full of pity and spoke to you as though you were a child.  Think how years and years of being treated this way would make you feel?  (Obviously this is not every Autistics experience, but sadly it is a great many.)

Now think  how you’d feel when the coverage in the news and elsewhere about you, about the things that effected your life, were spoken without a word from people like yourself.  Those voices weren’t being heard.  Those voices were drowned out by all the other louder voices intent on making decisions about YOUR life and for you.  How would you feel?  I would be angry and then I would feel depressed and in despair and yes, I just might wish for a cure.

But as the parent of an autistic child, that cure idea has done a great deal of harm.   It caused me to lose the ability to logically see things from a practical perspective.  As I wrote in my reply to Billy – When Emma was diagnosed I was determined to cure her. I thought that’s what a “good” mother should do. In my determination to cure her, I lost sight of who she was. I thought she was hidden under the “autism” and if I could get rid of it, there she’d be, like a baby chick emerging from its  shell. Only that’s not what happened. I couldn’t find a cure. I discovered, when I stopped looking, she was there, waiting for me to see her as she was, as she is. Will she have difficulty in life? Absolutely. Will the world treat her as less than? Yes, sadly so many will.  Some speak to her as though she were an animal. I would do anything to have the way people treat her change.

I can’t make people do that, but I can try to make them think about their assumptions. And while I’m doing that I can appreciate Emma for who she is in this moment, exactly as she is.

I don’t have time to write more now.  But this conversation, whether I just end up talking to myself, or whether I can get others to join in, I will continue, with the same relentless determination that I once pursued a cure for my daughter.

How I Made a Mistake and Was Given The Opportunity to Say I’m Sorry

“You put the toast in the basement.  That made me sad.”  Emma stared at me expectantly.

I drew in a breath.  My chest felt tight.  I knew exactly what she was referring to.  We’ve had similar conversations, but she’s never said it so directly.

This past fall in one last gasp of determined insanity I decided that I hadn’t done the gluten-free/casein free diet “right” when we put her on it a month after she was diagnosed and still two-years old.  So this fall, I took Emma to a naturopath, who’d been recommended to me, and after a number of “tests” he mapped out an even more restrictive diet than the standard GF/CF.   You can click on the links I’ve provided for more about all of this.  On the first day of the diet I cleared the house of all the foods Emma loved, but could no longer eat, according to the new diet.  Except I forgot to remove her favorite bread.

That morning she saw the bread and attacked it with the vigor of a rabid dog.   I whisked it away and hurried down to the basement with it, where I threw it into one of the large garbage bins, while Emma screamed and clawed at the door in an attempt to follow me.  I had it in my mind that it would all be worth it if the diet worked.   Which, to me, meant that she would suddenly begin to speak in beautifully articulated sentences, would be able to concentrate, would be able to comprehend what she read and would eat a wider range of nutritious foods.   Only the diet didn’t “work.”  Just as the GF/CF diet we’d put her on six years before, didn’t work.

Emma after 6 weeks on the diet

In many ways, that diet was a turning point for me.  After a couple of months on it and no change other than a significant weight loss, I reintroduced Emma to all her old foods, the foods she loves, the textures and smells she was familiar with and she was in bliss.  But Emma remembered those seven weeks when I had taken everything away from her.  The trauma she felt as a result of my actions was something I have been aware of.  I have, on several occasions, told her how sorry I am for what I did.  I have spoken at length to her about it, but in all those conversations, Emma has contributed very little until last night.  Now it was clear she needed to express herself.

When I started making decisions about treatments for Emma, many of them Richard did not agree with and he, thankfully, said, “No.  We are not going to chelate.”  Or “No.  We are not going to subject her to B-12 shots.”  Or “No.  We are not going to take her for another hyperbaric chamber treatment.”  There have been a number of things, that in my desperation to be a “great Mom” I would have tried had my wise husband not stopped me.  These are not moments I am proud of.  I have made a lot of mistakes.  This last diet was just one in a long line of bad ideas.  I know I will have more.  I understand it is human nature, but I also will be damned if I’m going to try to gloss over the choices I made that hurt Emma.

I promised myself long ago that when I became aware of a mistake, I would try to make immediate amends.  I don’t mean a quick, “Oops, sorry about that.”  I mean an amends.  Which is different from an apology.  An apology is what you say to someone you bump into by mistake on the subway.  An amends is when you seek to change your behavior so that you might at least have the chance of not repeating that mistake.  I try to do that consistently with both Nic and Emma.  I am sad to say, I have had to make a great many amends over the course of their short lives and some I’ve had to say over and over because I just can’t seem to get it right.  So when Emma said to me, “You put it in the basement.  You made me sad.”  I knew what I had to do.  I knew I had to listen to her.  I knew I had to resist the urge to make it better.  I knew I had to be present, no matter how much it might hurt to hear the things she would say, I owed it to her.  I had to give her that, at least, I needed to give her that.

I put my hand on her arm.  “Tell me, Em.  I promise to listen.”

Emma nodded her head.  “Never, ever.  You put the toast in the basement.  Mommy no!  Ahhhhh.  Mommy please!”  She pretended to grab at the bread and then she made a muffled screaming noise.  She got up off her bed and twirled her string.  She looked over at me.  “You made me so sad.  Emma’s crying.”

I nodded.  “Emma.  I’m so sorry I did that.  I made a terrible mistake.”

Emma looked at me.  She put her hand on her chest and she said the following words that broke my heart.  She said,  “You have to say you’re sorry to Mommy.”

I thought about all those Autists who talk about their awful childhoods and  how they were made to feel broken, not good enough and that it was somehow their fault for the terrible ways they were treated.   I thought of how those feelings about themselves continue to bleed into their lives today.  I thought about how they felt they needed to apologize for who they were and how so many of them believed these lies and some continue to.

“Oh God, Em!  No.  No.  You did nothing.  It was not your fault. I was wrong.”  I put my hand out to her.  “I should never have done that.   I am so, so sorry.”

Emma came over to me and sat down.  She put her hand on my shoulder and leaned her head into me and said in a quiet voice, “Mommy says I’m sorry.  No more bread in the basement.”  She paused and then said, “But next time just one?”

“No Emma.  Not one.  Not any.  I will never do that to you again.”

“Not one.  Zero.”  Emma smiled.

“That’s right.  Zero.”

“Not one, not two, not three…”  Emma counted up to one hundred.   When she got to a hundred, she smiled and made a zero shape with her hand.  “Not one hundred, only zero.”

I smiled.  “Yes, Em.  Only zero.”

Emma nodded and then she said, “Mommy lie with Emma and read stories.”

“Okay,” I said.  As we snuggled under her blankets together I said, “Who’s the most amazing girl in the whole world?”

“I am,” she said with a smile.

 The Depiction of Autism and Why it Matters on Huffington Post

Autism, AutCom, Huffington Post, Podcasts, Sprinkler Parks and Tea Parties

It was a jam-packed weekend.  Sunday Nic and Emma played together in one of the many sprinkler parks dotting this amazing city we are fortunate enough to call home.  (Not the sprinkler park.  Home, as in New York city… okay, you know what?  Never mind.  Just look at the adorable photograph.)

Yesterday, Richard and I spent the entire day at the Upublish BEA conference, which was pretty amazing.  Richard’s any-day-now-soon-to-be-listed-on-Amazon-five-star-Clarion-reviewed-amazing-genre-straddling-thriller, The Book Of Paul, will be available for public consumption soon and so this was a particularly relevant conference for him, and me as I am working on my book about Autism, our family and Emma.  I know – do we really need another book about autism?  I’m thinking we do, particularly after reading some of the comments on my most recent piece on Huffington Post, The Depiction of Autism and Why it Matters.
Meanwhile the wonderfully fun and up-for -anything Jackie, adored by both our children, took the kids to various parks and swimming.  She then invited Emma to a tea party celebrating her arrival to New York five years ago.  (This is the kind of thing we New Yorkers do, throw parties to celebrate our moving to this wonderful city of ours.)
Emma, thrilled with any event that affords her the opportunity to wear one of her pretty dresses, was extremely pleased.
Meanwhile halfway through the Upublish conference, I received an email inviting me to speak at the upcoming AutCom conference this October, which will be held in Maryland this year.  I am honored and look forward to it!
Friday afternoon my piece The Depiction of Autism and Why it Matters was published on the Huffington Post.  By Sunday it was getting some attention on Facebook and so they bumped it up on HuffPo, giving it a more prominent place on their Health News home page.  A large number of Autists commented, for which I am grateful, both for their perspective and support, but also because, as one of my favorite people, Ibby said, “You’ve found your daughter’s people.”
Finally, the interview I gave on Friday (my first podcast!) with Bryn Johnson of WebTalkRadio – Business Cafe – When a Passion Leads to a Business with guest Ariane Zurcher  is now available for your listening pleasure.  The first half is about business and being an entrepreneur and the second is almost exclusively about this blog and autism.

Emma’s Momentous Sleepover And How We Barely Coped

Joe and Angelica came to pick Emma up for her sleepover Sunday evening.  Emma, who had prepared her pink spiky backpack for this momentous occasion by packing: 3 hardcover books, her green furry monster and traveling companion Muzzy, a nightgown, her string (the old string with a few modifications is back!), her Cokie, toothbrush, floss, hairbrush, change of clothes, bathing suit, bathrobe and she insisted on packing her sheepskin slippers, despite my protests that it was too hot, (it was in the high 80’s.)

When Joe and Angelica buzzed, Emma ran to meet them by the elevator.  When Joe and Angelica then came inside for a moment, Emma, with her backpack on waited patiently as the adults discussed drop off times, sleeping arrangements etc.  At a certain point Emma made her way to the front door, waiting.  Another minute later Emma had the front door open and continued to wait, now outside our loft and in the hallway.  Finally, the adults, having concluded their endless conversation about logistics, food, and other important matters made their way to the front door.  Emma already out the door, never once looked back at Richard or me, but instead purposefully headed toward the elevator with the grim determination of one who is afraid her departure may be, at any moment, thwarted.

“Bye Em!  Have a great time!”  Richard and I shouted to her as she boarded the elevator.

Just as the doors were closing we heard a cheerful, “Bye Mommy!  Bye Daddy!”

And that was it.  She had left.  No kisses, no “I’m going to miss you,” no look conveying conflicted emotions, nothing.   And there we were.  Left to ourselves, looking at each other.  Then Richard stepped toward me and a grin widened on his face.

Oh come on, people, remember where you are!  This is a blog, not some sultry, titillating web site you just happened upon by mistake.

We went to dinner and the movies, feeling the joy of doing so without paying for a babysitter.  It was ecstasy!  We stayed up late, (oh stop it!) and slept in… until 6:30AM.

I actually was up at 5:30AM, but used the time to make some corrections to yesterday’s blog post and did some other work related stuff.  Eventually we took a long leisurely stroll along the High line and then returned home to await Emma’s return.

When Emma entered our loft, she barely looked at either of us, shot into her room, threw on a swimsuit and requested that she go to the sprinklers in her favorite park.

“Em!  I’m so happy to see you!”  I told her.

She grinned and then said, “Have fun at Angelica’s house.  Have fun with M.  Have fun with Oliver and Trouble!  (Angelica and Joe’s two cats)  Have fun in the sprinklers.  Now go to Seal park!”

That was it.  We never did get any more out of her.  She had fun.  What more was there to tell us?  It was good to get these photos from Joe, however, and somehow Richard and I made it through those sixteen hours, just the two of us, on our own, without any children, I don’t know how, but we did it.

Emma’s sleepover with M.

Playing in the sprinklers with M.
My latest piece My Fear Toolkit published in the Huffington Post

I Got To Meet A Unicorn Named Ibby

Celebrities and important people populate New York City in the same way Starbucks does, in other words, look hard enough and you’ll find one on every street corner.  But Sunday I had an encounter that was more impressive than running into a dozen A list celebs.  Sunday I met Ibby Grace.

Ibby, also known by her professional name, Dr. Elizabeth J. Grace,  Assistant Professor at National Louis University, is a terrific public speaker, wonderfully sarcastic, understands irony and rhetoric, has a sense of humor and is an extremely kind and compassionate human being, in a long standing relationship, a new mom to twins, and is Autistic.   If you believe the common assumptions about Autistics, Ibby is an anomaly.  According to the current “statistics” citing 1 in 4 Autistics diagnosed are girls, Ibby is even more unusual.  That she also displays qualities thought to be nonexistent in all Autists makes her, as she suggested with a certain degree of sarcasm, “a unicorn” or as a participant volunteered, “pegasus.”

Ibby spoke Sunday at the 12th Annual International Conference on Disability Studies in Education on Autistic and Female:  They say that’s rare, and so many other things.  She proceeded to dispel the many myths surrounding the little known and misunderstood segment of the human population – The Autistic Female.  In her talk she mentioned various theories including Simon Baron-Cohen, the creator of possibly the single most destructive theories regarding autism, The Theory of Mind and Mindblindness, which postulates that Autists are unable to empathize and his latest theory – The Extreme Male Brain.  I will not do Ibby’s talk justice by trying to represent it here.  Suffice it to say, you should have been there.

After the talk I stayed and chatted with a number of people.  As  Ibby and I walked together I told her how thrilled I was to meet her and other Autistic women who were beating a path, a path my own daughter may choose to one day walk down.  “You’ve found her people,” Ibby laughed.  I have and a formidable group of women it is.  Then she put her hand out and said, “Welcome to the tribe.”  The gloom and doom and horror I have grown used to feeling whenever I have attended any group discussion regarding anything to do with autism was in stark contrast to the joy I felt attending Ibby’s talk.  I think I may even try to go to other Autism conferences as long as most of the speakers are Autistic.

Ibby makes me happy.  She is interesting, smart, articulate, funny, doing what she loves and is one of those people who lights up the room.  It’s just the way she is.  Were it not for deeply ingrained societal restraints I would have physically jumped up and down upon meeting her I was so excited.  I think I did bounce a little on my toes when I went up to her after the talk had ended.

But I don’t think anyone noticed.

*An addendum to Sleepovers, Staycations, Sixteen Hours and Other Words Beginning With the Letter S – it turns out Oliver and Trouble are the names of Angelica and Joe’s two cats.  Mystery solved!  I should never question Emma.  She is always right.  I have to learn how to listen to what she’s saying better.

My latest piece My Fear Toolkit published in the Huffington Post

Sleepovers, Staycations, Sixteen Hours & Other Words Beginning With the Letter “S”

Emma’s having a sleepover!

Yesterday I wrote here about how Emma has been asking for several months to have a sleepover at my cousin’s house.  This began after they invited Nic to come stay with them.  It has become painfully clear that  Emma, though she said nothing at the time, wanted to go too.  However, arranging this is impossible.  They are a couple in their 70’s and while I adore them and am close to them, I cannot ask them to have her.   They do not know her well, Emma’s language is limited, her routines plentiful, I would need to accompany her, which would be awkward.  So no, that’s not going to happen.

After I wrote yesterday’s post, I received a wonderfully thoughtful email from Emma’s therapist, Joe, suggesting she come for a sleepover at his and his gorgeous wife’s house along with his wife’s god daughter, who came to Emma’s ninth birthday party, this weekend.  Nic will be at the beach with his friend.  Emma will be with Joe and Angelica.  Which means….  drum roll please… Richard and I will have about sixteen hours to be together, just the two of us.   Sixteen hours.

Woohoo!  Oh yeah, baby! (Insert little snoopy like dance of pure, unadulterated ecstasy, here.)  Other than our ‘Staycation‘ in February, also thanks to Joe, Richard and I do not get a great deal of “just the two of us” time.  Don’t misunderstand, I’m not complaining, it’s just a fact of our lives, making Emma’s impending sleepover all the more fabulous.  It must be noted that Joe is contributing to the continued well-being of my marriage, in addition to providing Emma with her desire for a sleepover.

So last night after confirming that this was indeed happening, I went to find Emma.  “Hey Em!  Guess what?”  Silence.  “Do you want to have a sleepover with Joe and Angelica this weekend?”

“YEAH!”

“Do you remember Madison?”  Emma nods her head yes.  “Madison will be there too!  Do you want to go?”

“YEAH!”

Later Emma came to me and put her hand on my shoulder.  “Go to Angelica’s house for sleepover?”

“Yes, this weekend.  Are you excited?”

“Yeah!  I’m excited.  Go to Angelica’s house with Madison, Oliver and Trovel.  Go sleep in Central Park.”

If you are as baffled as I am by this, then welcome to my confusion.  I have no idea who Oliver and Trovel are, why they are sleeping in Central Park, of all unlikely places or why Emma thinks it’s a good idea to join them.  How Angelica is involved in this is also a mystery.  As I sat looking at her and trying to figure out which question I should ask first I decided to tackle the name Trovel.  “Do you mean Trevor?”

“Trouble,”  Emma said, carefully articulating the word as one might to a very small child or a foreigner.   “Oliver and Trouble,” Emma added.  She waited staring meaningfully at me.

“Okay.  Who are Oliver and Trouble?”

The look on her face was the equivalent to Nic’s disgusted and embarrassed shrug and eye roll combo. “Have sleepover with Oliver and Trouble.  Going to sleep in Central Park.”

After a number of questions I came up empty.  Finally I said, “But Em, don’t you want to have a sleepover this weekend with Joe?”

“Yes!  Sleepover at Angelica’s house!  I’m so excited!”  Emma grinned at me and then turned on a YouTube video of some arbitrary family’s home movie of themselves riding the Central Park carousel.  It’s one of Emma’s favorite videos and whenever she watches it I wonder what this family would think if they knew they’ve provided hours of entertainment for my daughter by posting to the public their slightly weird video.  I say slightly weird because the man, I’m assuming the father, looks into the camera and discusses at great length which horse he plans to ride.  Emma loves it.

Sixteen, stupendous, spectacular hours, people!

I couldn’t find a photo of roses to go with the caption – Things are coming up roses.  This photo taken in Central Park of tulips will have to do.  Things are coming up tulips! 

My latest piece My Fear Toolkit published in the Huffington Post

That Pesky Issue of Death and The Desire For a Sleepover

“Have a sleepover with Susan and Peter?”  Emma mumbles.  It’s early.  I’m tired.  I  didn’t sleep well, blinding headache, and it’s 6:07AM.

“What time is it?” Richard asks in that groggy-first-words-spoken-in-the-morning kind of voice.

“Six ten,” I reply, optimistically rounding up, hoping those added three minutes will serve to soften the blow.  In case any of you are wondering, Richard is NOT a morning person.  Anything earlier than 7:00AM causes him tremendous pain.  I can hear Richard’s slow intake of breath.  I imagine I can feel his exhaustion.  No wait, that’s mine, never mind.

“I want a sleepover,” Emma says, more loudly this time in case we hadn’t heard her the first time.

I know why Emma is saying this.  Nic has been invited to spend the long Memorial Day weekend with his friend.  He’s leaving Saturday morning and won’t be home until Monday.  Emma overheard Richard and I discussing this.  Emma overhears a great deal.  Emma pretty much knows more about what goes on in our house than I do.  She’s got her finger on the pulse of what’s happening.  And she wants in.

My heart feels as though it’s in a vice grip and simultaneously I feel euphoric.  It’s that bizarre feeling of holding two opposing feelings at once.  This is a rough version of my panicked inner dialogue:   What am I going to say?  This is so great!  How do I tell her my cousins will not be inviting her for a sleepover at their house?  We’ve been through this before.  How do I explain why it is that her brother, Nic, gets invited to sleepovers all the time, but she has never been invited to one?  But she’s asking to have a sleepover, which is fantastic and heartbreaking at the same time.   What can I say that’s honest, but not so honest it will hurt her feelings?  How do I explain what a sleepover entails?  How do I explain the intricacies of sleepovers, that it’s not just sleeping in a strange bed and then coming back home, that there’s so much more to it?  Maybe I don’t need to.  Maybe I need to figure out a version of a sleepover.  Does she understand that I don’t accompany Nic on his sleepovers?  I think she does, but I’m not sure she cares.  

“How about this?” I finally say, measuring my words.  “How about we have a sleepover at Granma’s in June?”  I wait as she stares at me.  She doesn’t say anything.  It’s as though she’s thinking – are you kidding me?  That’s not a sleepover.  That’s a visit.  We do that all the time.  What, you think I don’t get that?  I smile at her, encouragingly.

“Sleepover at Peter and Susan’s.”

Oh boy.  “Um.  Well.  No.  We can’t do that, babe.”

“In August,” Emma says with the tone of one who has tired of the conversation.  There’s a finality to her voice.  Case closed.  There will be no more argument.  She turns her back to me.

Should I let this drop?  Just leave it alone?  But I know there won’t be any sleepover at my cousin’s house in August.  Shouldn’t I tell her that?  I’m reminded of friends of ours who have two, now grown, adult children.   This was when Nic, then four years old, wanted to know about death.  As in – would we die?  What would happen when we died?  Who would take care of him? –  Our friends advised us to lie to him.  “Just tell him you’re never going to die.  He needs reassurance.  He’s just a little kid.”

“But that’s dishonest,” one of us responded.

To which they replied, “Yeah, but if you both die, he’ll be worried about a great deal more than your dishonesty, trust me.  That will be the least of his concerns.”

So…  We didn’t take their advice.  Instead we patiently and carefully explained to Nic that everyone dies, but assured him that we were not going to die for a very long time.  Richard went so far as to say that he was pretty sure medicine would soon solve the whole “death problem” and was convinced that he, anyway, would never die at all, ever.  Eventually Nic, either tiring of our tedious and spurious claims, or just as likely, deciding our responses were so lame he couldn’t cope with them anymore, stopped asking us about death.

I thought about using a similar technique with Emma, but I’m pretty sure she’s made up her mind, regardless of what I may have to say.  She’s very determined.

Emma’s “sleepover” at our cabin

My latest piece My Fear Toolkit published in the Huffington Post

Oddities, Quirks and Other Family Traits I’ve Come to Recognize

Let’s just say, for the sake of this post, that we all agree genetics play a role in autism.  (I know – many do not believe this, but let’s pretend we all do because otherwise this post will go off onto so many different tangents I may never get back to what I really want to talk about – inherited traits – and it will require a time commitment many of you may not have or want to give.  So let’s just pretend we agree.  Ten minutes, then you can go back to believing whatever it is you believe, which by the way, this post is not a criticism of, oh God, you see?  I’m already getting side tracked.  Suffice it to say, what used to strike me as alien about Emma, is, I now believe, a version of the genes that have been passed down to her.)  And that, as you’ve undoubtedly noticed, is one of the longest parenthetical sentences ever written.

I am going to keep this personal because I don’t have permission to review my parents various genetic traits, nor my husband’s, though I’m guessing he’d give me permission had I thought to ask before leaving for my studio this morning, but I didn’t and it’s too early to call my mother.  So this is going to be about things I’ve learned and see in myself that I identify with Em.  And by the way, this preface of over 300 words, is a perfect starting point because  I do not think in a linear fashion.  This is actually something I’ve been accused of, not in a oh-you’re-so-wonderfully-creative-in-your-weird-thinking kind of way, but more in a what-the-hell-is-wrong-with-you? way.  For more on non-linear thinking and autism, there’s a wonderful discussion on the blog Wrong Planet.

Sensory issues –  None of mine cause me tremendous pain as so many of Emma’s do, but I do have some.  One benign example is my auditory issues.  For a long time I thought I had a hearing problem because there are certain sounds I do not notice.  If someone calls out to me, but is standing out of my range of vision, I cannot hear them, much to the amusement of both Richard and my son Nic.  Until I get a visual and am able to see them both doubled over in laughter because they’ve been shouting my name for the past ten minutes while I, oblivious, continue to do whatever it is I’m doing, I have no idea anything is amiss.  My husband uses a ring tone on his cell phone which I cannot hear.  Suddenly he’ll start rummaging around looking for his phone and I’ll ask, “What are you doing?”

“My phone’s ringing,” he’ll reply, while I strain to hear his phone, only to hear silence.

I have a friend whose voice I cannot hear.  I literally have to put my head about three inches from his mouth in order to hear anything he’s saying.  I’ve had my hearing checked.  My hearing is all within what’s considered the “normal” range.

I have spoken before of my literalness.  There are certain jokes I just do not understand.  That in and of itself has become something of a joke in my family.  There’s a group of bloggers who participate in an ongoing “Special Needs Ryan Gosling” joke where they take a picture of the movie actor and then write something – like “Hey Girl, how about I deal with Joey’s sensory induced meltdown while you grab that bottle of wine I just opened for you.”  (I just made that up, but am not sure that would actually be a good one, because I don’t really get the joke to begin with.)  Not to be a total kill-joy here, but it’s not a joke I’m capable of understanding and I have to admit, I really wish I did, because all the other bloggers are having so much fun with it and I admit, I feel left out.  Reminds me of how I used to feel in high school.  Laughing along, but not really understanding what was funny.  Though I knew enough to not let on that I didn’t get it.  And I really do have a good sense of humor.  Really.  I do.  No.  Seriously.

For more than two decades of my adult life, I engaged in self injurious behavior.  My self injury was in the form of an eating disorder and in dermatillomania, also known as face picking.

I am obsessive and though I do not have OCD, (Obsessive Compulsive Disorder) I can be extremely obsessive and compulsive around a wide variety of things.  When I find something that interests me, often design related or subject matter, like autism, I become obsessive and will study and work for hours without realizing how much time has passed.  Jewelry design is like that for me and it helps that I have been able to disguise my obsession with it by turning it into a business.

In the past I have used words like alien and other in describing Emma.  But I haven’t found that thinking helpful.  As long as I see her as so very different from me, I abandon my instincts, my maternal knowing, my own quirks and feel almost constantly confused by so many of her actions.  When confused I rely on others who do not and cannot know my daughter as well as I do, to tell me what I actually already know.  Which isn’t to say that any and all advice isn’t helpful or is to be rejected, but more that I need to remind myself, Emma is actually a great deal like me in many, many ways and I need to trust myself more in knowing how best to help her by tapping into my own traits, obsessions and sensory issues.

I could go on and on about all of this, but the point I’m trying to make is that the alien analogy, rather than helping me help my daughter, has actually served to distance me from her.  When I am able to identify and tap into my own oddities I am better able to come up with strategies and ways to help her whether that is in her reading and writing or helping her tolerate frustrations or teaching her life skills.

What do you think?

Latest piece My Fear Toolkit published in the Huffington Post