Listening to Emma

Posted on June 14, 2012 by | 23 comments

“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!

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Posted in Autism, Ear infections, Parenting

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An Empathic Debunking of the Theory Of Mind

Posted on June 12, 2012 by | 30 comments

Simon Baron-Cohen, the man who has single-handedly done more damage to the perception of Autistics than any other human being (though there are arguably a number of people vying for that title), depresses me.

I need to say that before continuing.

Simon Baron-Cohen developed the “Theory of Mind” based on the results from the now famous “Sally-Anne” test.  The Sally-Anne test, where the child is shown two dolls, is an example of dubious “science.”  Sally has a basket in front of her, while Anne has a box.  Sally, presumably made to move by an adult, which further complicates the test, puts a marble into her basket and leaves the room.  While she is gone, Anne takes the marble from Sally’s basket and places it in the box.  When Sally returns, the child is asked, “Where will Sally look for the marble?”  Only 20% of the Autistic children were able to correctly answer the question – Sally will look in her basket.

Emma, typically, when asked what one of her doll’s name is, will reply, “Doll” or “girl.”  This is just one example of Emma’s literal mind at work.  She is not wrong, her doll is a doll and yes, she is a girl.  To take away any other conclusion from her answer would be ridiculous.

Yet, from this “test” Simon Baron-Cohen concluded, “that the core problem in autism is the inability to think about other peoples, or one’s own thoughts.”

Except that his test did not take into consideration the level of anxiety, stress or mood of the Autistic participants at the time of testing.  Nor did it take into account the language issues, pronoun challenges or literal thinking many Autists have, which the test inevitably presented.  In addition Simon Baron-Cohen based his theory, which is taken by many as proven fact, on assumptions that the Autistic participants understood the question.  He then set about publicizing his theory, which inadvertently or not, is used by many in the neuromajority to abuse and mistreat the very people whom he categorizes as lacking empathy.  Does anyone else see a problem here?

When Emma was diagnosed I came upon the Theory of Mind paper early on in my research.  I remember thinking that this explained why, when any of us were upset, Emma seemed oblivious.  But as I continued along the road of educating myself, coupled with observing my daughter, I began to question his theory.  I read about Autistics who avoided looking in people’s eyes because it was too intense.  One Autist described it as akin to seeing into a person’s soul.  Other’s talked about how they could sense immediately upon entering a room, the various occupants emotional state and became so overwhelmed they would seek refuge in a corner, try to leave or would stim as a way to counter the intensity of what they were experiencing.

There are times when Emma will, with outstretched arm, put her hand out in front of her face like a shield.  Often it is done, I believe, as a response to the intensity of feelings, either hers or others or both, or as Jessy Park, Clara Claiborne Park’s daughter was quoted as saying, “It’s too good.”   Landon Bryce over on his terrific blog, thAutcast has a wonderful video of an Autistic artist, Tina, who talks about how she trained herself to look into people’s eyes because she paints portraits.  It is a beautiful video, as is she.

What struck me, after reading half a dozen articles and interviews by and with Simon Baron-Cohen, is the damage he is doing.  His most recent book, Zero Degrees of Empathy, (which I am not providing a link for on purpose) where he includes Autistics along with psychopaths and borderline personality disorder as examples of groups who lack empathy will further the suffering of Autistics.  For a man who claims Autists lack empathy, he is bizarrely unaware of his own lack of empathy.

For those who would like to read an opposing theory and one that seems much more in keeping with what I see demonstrated by not only my daughter, but the many Autistics I have had the honor of getting to know, read this interview with Henry Markram.

Related Articles:

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Posted in Autism, empathy, Simon Baron-Cohen

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Is There A Future for Emma in the Theatre?

Posted on June 11, 2012 by | 25 comments

Yesterday, as we were leaving Nic and Emma’s gymnastics class, Emma found a stray balloon.  No doubt left by one of the children who attended a birthday party there earlier, Emma looked at me with a sly grin, then grabbed the balloon and said, “Look!  It’s a birthday party balloon.  Take it home?”

Emma loves nothing more than birthday parties, balloons and singing Happy Birthday.  “Sure Em.  But remember to hold on to it, because if you let go, it’ll fly away,” I said.

Emma nodded her head gravely and said, “You have to hold it.  If you let go, the balloon goes up in the air.  Oh no!  Don’t go away balloon.  You have to hold it.  But listen, if you let go, there will be no more balloon!”

Emma’s way of coping with anxiety is to repeat a script of sorts.  These are things she’s heard from a variety of sources.  She pulls together threads and combines them to make a dialogue that she then repeats.  Many Autistics script.  Some people feel scripting is to be ignored and even discouraged, but I find Emma’s scripts are informative and useful.  It is the way she is attempting to communicate.  I don’t believe they are nonsense or meaningless.  I believe she uses them in situations when she cannot come up with words of her own.

Emma managed to get through the next four hours without losing the balloon.  This was no small accomplishment as those four hours were packed with activities, ranging from shopping for shorts and an awesome camouflage swim cap for Nic, bathing suits for Em, swim goggles for me, ear plugs for all of us, slices of pizza for everyone, before meeting Richard at the local Y to swim.  Emma attempted to jam the balloon inside our locker, (we ended up letting it float outside the locker, with the string inside the locker ensuring it wouldn’t float away.)  After swimming we went to a room where they’d set up an obstacle course and bouncy castle.  Meanwhile Emma’s balloon, which she’d secured inside my swim bag, stayed put.

Once outside as we headed home Emma suddenly gasped.  All of us watched with dread as her beloved balloon sailed out of reach.  In the past, losing her balloon would have induced a meltdown of epic proportions.  “Oh no, my balloon!” Emma said, her tone and inflection sounded vaguely familiar.  Emma stomped her foot and said again, “Oh no, my balloon!  Can you tell how Katy feels about losing her balloon?  Yes, Katy is mad she lost her balloon.  We can tell she’s mad because she’s raising her fist and stomping her foot.”

I looked at Emma in shock. Emma was repeating the dialogue from an app Marc Zimmerman, CEO of the app The Social Express Lite sent me more than six months ago.  At the time I showed it to Emma who liked it and watched the five different lessons a couple dozen times and so a few months later, I bought the long version of the Social Express, but other things took precedence, so it was soon forgotten.

“Emma lost her balloon,” Emma said looking at me as I awaited the meltdown I was sure would come.  Instead, Emma stood still, gazed up at the balloon floating farther and farther away and said, “Emma’s mad she lost her balloon.”  Emma stared at me for a moment and began to laugh.

I was amazed.  This was NOT the reaction I expected.  “Katy’s mad.  Emma’s mad,” Emma laughed.  She gave me her pretend “mad” face –  frowning, mouth set in a silent scream – and dissolved into peals of laughter.

I was reminded of a conversation I had with a friend of mine (who’s autistic), just two days ago.  She told me how going into a theatre program changed her life.  She told me how theatre taught her a range of things, including an increased desire to read because there was a reason to,  she learned how others thought and what motivated them.  She said, “In theater, everyone is honest, they have to be.  If they are not, the director says, No, be honest.”

“I am determined to find a theatre program for Emma,” I said to Richard.  “I think it is the thing that could change everything for her.”

“I’m with you,” Richard said.

When we got home Emma and I watched the Social Express together.  When the story with Katy losing her balloon came on, Emma pointed to the screen.  “Oh no! Katy lost her balloon too!”

And she began laughing.

Emma demonstrating her angry face

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Posted in Autism, language, scripting

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Be Honest And Why That Often Hurts

Posted on June 8, 2012 by | 16 comments

Every morning I sit down to write a post for Emma’s Hope Book on this computer in my studio and look at the traffic speeding to and from Manhattan on the 59th Street bridge.  Sometimes I already know what I want to write about.  Often  I thought of something the night before, or if Emma did something I feel compelled to write about, I do.  But there are other mornings when I have a number of things I want to write about, but none seem ready to be put on the page.

Be honest.  I repeat to myself each morning before I begin.  But there are some mornings I don’t want to be honest, because honesty can be painful.  Some mornings I just want to write some other version of my life, a fantasy that doesn’t require me to dig down into the darkness.

Cover of "Boy Alone: A Brother's Memoir"

Cover of Boy Alone: A Brother’s Memoir

I read a memoir a few years ago, by Karl Greenfeld called A Boy Alone.  Karl’s father, Josh Greenfeld wrote a memoir about his son, Karl’s brother, A Child Called Noah  several decades earlier.  I didn’t love Josh’s memoir, but I was enthralled with Karl’s as he writes beautifully.

(Spoiler alert – do not read the next 2 paragraphs if you have any intention of reading A Boy Alone as I am going to give away the entire ending.)

Toward the end of the book, Karl writes about moving away from home and how over time, as he struggled with addiction and other challenges, his autistic brother seemed to find himself and eventually could not only live independently, but seemed to have a maturity and wisdom Karl was still struggling to obtain.  As I read these pages I began to read more quickly, trying to figure out how this could have happened, what therapy helped Noah, what exactly was it that propelled him forward, allowing him to become verbal and freeing him from a  life of institutionalization?  But Karl was not forthcoming with this information.

Karl ends the book with doctor’s reports from the various institutions Noah was placed in. The reports are horrifying, the drugs, the restraints, the “therapies,” sadly commonplace in such places are all documented in the dry, hollow tone of doctors and caregivers who have completely separated themselves from the human beings they are administering to.  As I read, I began to reluctantly realize that these reports were the truth, not the previous pages of Noah’s miraculous progress from institution to independence and I wept.  I hated the book.  I felt betrayed.  I felt manipulated.  That book, A Boy Alone has haunted me ever since.  Even now years later I cry when I think of it.

I’m nine-years old home sick with the flu.  My father comes in to read me a story before he goes out horseback riding.  He says to me before he leaves, “I’ll finish the story when I come home.”

“When will that be?” I ask him, turning away from the bright sunlight pouring in through my bedroom window.  

“Soon,” he promises.

Only he never came back to finish that story.  That afternoon he went over a jump with his horse where there was a low hanging tree branch from a massive oak.  His horse cleared the jump, but in doing so my father was crushed by that branch.  He fell to the ground, his back broken.  Paramedics were called and sped him off to the hospital where it was determined he might not live.  Later we were informed he would likely be paralyzed for the rest of his life.  He spent many months in the hospital.  Every few weeks the doctors would gravely give us their opinions.  They were almost always wrong.  Eventually he came home, over the years of physical therapy, exercises, sheer force of will and determination, my father was able to walk and even got back on a horse.   But the nerve damage to his legs was extensive and as he aged he lost more and more of his strength.  The last decade of his life was spent in a wheelchair. 

I write this because, though I didn’t know it at the time, his accident changed everything and has informed my life today in ways I could not have imagined.  I saw how people treated him.  I saw how a wheelchair had the power to change the conversation.  Often it was a subtle change, but there was no mistaking the looks of pity, the attempts to disguise their discomfort, the undisguised irritation strangers would display if his wheelchair caused them to slow down, move out of the way or forced them to accommodate him.  My father was a proud man, athletic, capable and prided himself in never depending on anyone for anything.  And yet, in the end he had to and he hated it.

Be honest.

I am.

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Posted in Autism, disability, special needs

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What’s a “Good” Mother, Anyway?

Posted on June 7, 2012 by | 24 comments

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.

24 Comments

Posted in Autism, neuromajority, Parenting

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How Emma Takes Control of Time

Posted on June 6, 2012 by | 3 comments

We have a morning routine.  This is not a routine forced upon us because Emma is autistic.  This is our morning routine.  A routine we all profit from.  It smooths the transition from groggy-still-asleep-trudgery to wakeful-functioning-so-that-we-can-get-out-the-front-door-and-go-our-various-ways.  In other words routine simplifies our lives.

Emma’s body clock, and  mine too, wakes at 5:30AM.  To tell her to go back to sleep is like telling me to take a nap at 11:00AM.  It’s not going to happen. But she knows she isn’t allowed to leap into our bed until 6:00AM.  This morning she came into our bedroom and announced “It says five and three and eight.”  Then, because she knows she isn’t suppose to come to us until six, she wandered out.

At exactly 5:57AM she reappeared.  I can’t tell her to leave with only three minutes to go!  She crouched in front of the DVD player and whispered, “It’s five and five and seven.”  She waited for exactly three minutes and then crawled onto our bed with an enormous grin.  “It’s six!” she said with gleeful abandon as she dove under the covers, tossing  Merlin from the bed like a toy sailboat on stormy seas.   He landed on the floor with a dejected plop.

Later, after Nic had reluctantly awakened, breakfast was eaten, dishes cleared, lunch made, Merlin fed, his water bowl refreshed and his  litter box cleaned, Emma ran into the other room, returning with my iPhone in her hand.  “Have to use the clock,” she said.  She then set the timer app to one minute.  She sat back in a chair, humming to herself.  When the timer went off she said, “Uh!  Time to take the vitamins!” and ran off to do just that.  She returned moments later and again set the timer for one minute.  Again she waited until the timer beeped.  “Uh!  Have to go brush my teeth and hair!”  and off she went.

What is astounding about this is that these are not things Emma particularly enjoys doing.  I must remind her, to which she will inevitably reply, “Just one more minute?”  “No, Em.  Do it now and then you can have a minute after you’ve finished,” I reply.  So Emma came up with a solution to this.  She has incorporated her need for the one minute adjustment period she needs into her routine before I reminded her!

As I write this, while marveling at Emma’s creative process and progress,  I can hear the timer going off again.  She is rummaging around in the dryer.  “Cokie‘s clean!” she says triumphantly.

Merlin looking majestic

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Posted in Autism, Parenting, Routines

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

Posted on June 5, 2012 by | 59 comments

“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

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Posted in Autism, diets, Parenting

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

Posted on June 4, 2012 by | 12 comments

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.

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Posted in Autism, New York City

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Breastfeeding? I’m More Interested In Emma’s Culinary Skills

Posted on June 1, 2012 by | 17 comments

All of you have undoubtedly heard and some may have even read the issue of Time Magazine featuring a beautiful young woman on the cover with her three-year old son, who by the way, looks large enough to take on my 12-year old, (but that really is beside the point, or maybe it isn’t actually) standing on a child’s chair while his mouth is glued to her delicate breast, presumably breast feeding.  Both are staring into the camera while the text reads “Are you, and in large, red, bold type, Mom Enough?”  I’ve included the photo at the end of this post.

This is not a subject matter I care about.  At all.  They may as well have made the headline  “Masturbation:  Who Does and Doesn’t.”  My response would still be – who cares and frankly, who has time?  I haven’t picked up a magazine, any magazine for a long time.  My idea of reading a magazine is to glance at the salacious headlines on various covers while in line at Duane Reade picking up another bottle of shampoo because Emma has just emptied the contents of the last bottle into our sink while stirring it around with a large wooden spoon and singing, “Stir, stir, stir the soup, stir, stir, stir the soup…”  (I’m taking run on sentences and parenthetical remarks to a whole new level here.  Feeling sadly proud of this, I should add.)  In any case, I’m showing up late to this particular party, something I seem to have a knack for, because I’ve got a lot of other stuff going on and simply don’t have time to keep up with the latest “news.”

But last night while waiting for Nic’s school concert to begin, I scrolled through some tweets and came upon this article written for Redbook (another magazine I never read), by Joslyn Gray entitled, 10 Reasons I Don’t Care About Time’s Breastfeeding Cover.   Had I not had an hour to kill, had I not forgotten to bring any other reading material, I would have ignored the tweet and thus the article and would have missed out on this hilarious piece.  I had to share the link here because I laughed out loud while reading it.  Literally.  Out loud as in inadvertently snorting.  Joslyn Gray also has a blog – Stark. Raving. Mad. Mommy.  I haven’t had time to go to it, but intend to.

After reading the article I had to find the actual cover of the Time Magazine piece.  As I looked at the cover, I thought – How much did this child weigh at birth?  How is it possible that her breasts are that small and perky and yet contain enough milk to nourish such a big kid?  Is he that tall because she’s still breast feeding?   Calcium…  And then I made a mental note to encourage Nic to drink more milk.  

I then went off into a whole reverie of when I was breast feeding my children and how I luxuriated (briefly, oh so briefly) in having, what Richard and I joked, “porn tits” because when they were engorged with milk they became rock hard and therefore looked fake, as in 1950’s fake, before cosmetic surgeons perfected the art of more natural looking and feeling, I’m told, breasts.  Emma didn’t get her teeth until very late and yet all she wanted was to eat real food.  Nic got his teeth early and yet preferred breast feeding.  It all seemed like a cruel joke.  Emma would snatch whole steaks off nearby plates while the unsuspecting person would stare in surprise at their now empty plate and wonder what happened, while she gummed the steak voraciously.

Thankfully Nic’s concert began, interrupting my musings.

The point is I, like Joslyn Gray, don’t care about who breastfeeds, who doesn’t, for how long or anything else breast related.  I’m much more interested in figuring out why Emma thinks pouring an entire bottle of shampoo into the kitchen sink and then mixing it with a wooden spoon constitutes soup.

The magazine cover that has America talking

My latest piece The Depiction of Autism and Why it Matters published in the Huffington Post

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Emma’s Unique Way of Telling Time

Posted on May 31, 2012 by | 5 comments

“The clock says four and five and seven,” Emma can be heard saying.  There’s a rustling sound and then an audible sigh as she settles herself on the floor six inches away from the “clock,” which is actually our DVD player.  I can just make out the shape of her back.  She’s watching the clock.  Literally.  I roll over onto our cat Merlin, who has taken to curling himself up into a tight ball against my upper body.  The heat he emits causes me to wake in a sweat several times throughout the night.  I’ve grown used to this and am grateful in the knowledge that when menopause hits I will be that much better prepared.  Merlin uncurls himself without resentment and arches his back.  All witchy and halloween-like, he gives me a baleful stare with his yellow/green eyes.  Emma stays put.  “Four and five and nine,” she mutters.

The morning light has yet to reach our northern facing windows.  Richard reaches for his cell phone.  We are inundated with technological gadgets of one kind or another.  iPads, iPhones, everyone has at least one computer, Richard and I each have three.  Despite the fact we do not watch television, there are always several screens of some kind on at any given hour of the day or night.  “What are you doing?” I whisper to Richard.  As if Emma cannot hear me.  As if she will not take this as permission to get into our bed with us.  

“Checking the weather,” comes his reply.

“Eighties.  It’s going to be in the eighties today,” I tell him.  I know this because I’ve already checked the weather and my email and am almost through writing a daily “to do” list having been up since three and four and two, as Emma would say.

Emma stands up and bounds over to my side of the bed, beaming.  “Hi Mommy!” she says in a loud cheery voice.  I am reminded of that commercial where a schlubby looking guy gets up and says in a grumbly voice, “It’s time to make the doughnuts.”  Was that actually an advertisement for doughnuts?  I can no longer remember.  

“I’m getting up,” Richard announces.

Richard’s first novel is being published in the next 48 hours.  There’s been a whirlwind of activity, he received a five star review from a major book reviewer on Tuesday, there’s still a great deal to finalize before we actually have a physical book, his novel, in our hands.  It’s all very exciting and while all of this is going on there are the very real daily things that still need to get done.

“Gotta get back to work,” Richard says as he wanders into the bathroom, turns on the sink faucet and then begins talking to me again.  I cannot understand a thing he’s saying.  The faucet’s running, he’s at least 20 feet away with his back to me.  Seriously?   I so cannot hear you.   Emma is grinning at me like the Cheshire cat and now leaps into bed next to me, while deftly pushing Merlin aside.  This is all done with a certain matter-of-fact-sorry-kitty-don’t-take-it-personally sort of way.

I smile at Emma, reach down to stroke Merlin, lest his feelings are hurt.  “What?” I yell to Richard.

“Never mind.  I’ll tell you when I’m out of the shower,” Richard shouts back.

It’s not even five and one and five.  Or for those of you unfamiliar with Emma’s unique way of telling time, it’s not even five fifteen.  I check Emma’s arm and hand to see if the angry red bumps, the tell tale marks left from last night’s meltdown when she bit herself over and over again, have calmed down.  They have.  In another day they will turn bluish-purple and by the weekend will have acquired a yellowy brown cast.  She pulls her arm away and stares at me.  “Emma’s sad.  Emma want to go to the sprinklers.  I know.  I know baby.  But listen, you cannot bite.  You cannot go to the sprinklers.  Maybe tomorrow,” she says, nodding her head and frowning.

I talk to her about how she can go to the sprinklers after school today.  I tell her we are going to Nic’s school concert to hear Nic play his saxophone this evening.  She smiles.  She begins to hum the song Nic composed last year and played at a piano recital.  Her memory continues to awe.  She hums the exact piece note for note in its entirety.  When she gets to the end, she looks at the clock, “It’s five and three and one.  Do you want to make cereal and toast?”  She bounces off the bed and races into the kitchen without waiting for my reply.

Last night Emma and I went up to the roof before bedtime.  If you look just to the left of Emma’s face, you’ll see the Freedom Tower, more than halfway finished.

My latest piece My Fear Toolkit published in the Huffington Post

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Expectations and My Reluctance To See What Is

Posted on May 30, 2012 by | 17 comments

Emma’s sleepover came with some fallout.  I suppose that is to be expected. Emma had a blast , so what’s my problem?

My fear.  My expectations.  These are the issues that plague me.

I watched Emma burst through the front door.  I saw how she didn’t acknowledge or even look at the other little girl she’d just spent the night with.  I saw how in the photos and from Joe’s summary of those sixteen hours spent away, Emma and M. didn’t interact despite Angelica and Joe’s attempts to facilitate.  They co-existed.  M. seemed a little sad, I may be projecting this onto her.  But I wondered what it was like for her to have a sleepover with a child who barely acknowledged her presence.  And then I felt awful that I’d had that thought.

Emma was happy,  genuinely happy to have had her sleepover, in fact, seemed exuberant to be away from us for a night.  When she left Sunday evening, without a look back, I could see that Emma was ready for this.  Emma was ready for her little adventure, time spent away from her family.  This is as it should be.  This is what all children experience.  That initial flickering desire to venture off, to have experiences that do not involve her parents.  A flicker, which over time, will grow into a more steady, stronger, determined flame.  This is a good thing.

So why am I having a problem?  Because I have expectations.  Because I have worries and fears.  In addition to all of this, I project my own hopes and feelings of what specifically a sleepover means, onto her.  Emma’s sleepover was not the sleepover I had in mind.  A sleepover of two little girls connecting with each other, whispering secrets in each other’s ears, laughing and playing and interacting, holding hands and friendship bracelets.  But what little girl was I projecting that idea onto?  Certainly not Emma.

Eighth grade – I was invited to a huge slumber party at my “friends” house.  Unbeknownst to me several of the girls, maybe all of them, got up in the middle of the night and threw my bra into the freezer, much to their amusement and my horror, embarrassment and shame.  Shame because I did not require a bra, shame because I was singled out and didn’t fully understand why, shame because it felt mean and made me sad, but everyone else was laughing.  Laughing in a way that made me feel all the more isolated and alone.  Shame because I wanted to be included, often was included, but never felt that I really fit in.  They laughed, so I tried to laugh too, which made them laugh all the harder.  I remember.  I remember feeling so relieved when my mother came to pick me up.  “How was your sleepover darling?”  my mother asked.

“Okay,” I answered.  How could I explain?  How could I tell her about something that I hadn’t entirely understood?  How could I put into words that which I found confusing and oddly shameful?

“Did you have a good time?” my mother asked again.

“It was fine,” I said, turning my head away from her to stare out the window at the blurred landscape as we drove back home.

I am grateful knowing Emma will be spared this kind of “sleepover.”  I am grateful when I take Emma to one of the many playgrounds in New York City with various water features, and she pulls off her dress revealing her favorite two-piece bathing suit, without any self-consciousness.  Her belly prominently displayed for all to see, she tears from one water drenched shape to the next with gleeful abandon.  Emma is without inhibitions.  She is without embarrassment, she is without shame.  Female neuro-typicals could learn a thing or two from Emma.  I could learn a thing or two from Emma.

It is in those moments, at the water park, as I sit watching her that I come face to face with my perceptions, my expectations, my ideas of what should and should not occur in our daily interactions with one another.  I catch glimpses of the fallacy, the dishonesty of the words we so carelessly toss about.

“How are you?”  “Great!”  “How was the sleepover?” “Fine.”  “Did you have fun?”  “It was nice.”  “Are you okay?” “Yup, everything’s good.”

Even when we aren’t.  Even when it wasn’t.  Even when we didn’t.

My latest piece My Fear Toolkit published in the Huffington Post

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Emma’s Momentous Sleepover And How We Barely Coped

Posted on May 29, 2012 by | 11 comments

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

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I Got To Meet A Unicorn Named Ibby

Posted on May 28, 2012 by | 16 comments

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

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Posted in Autism, Autism Acceptance, Simon Baron-Cohen

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

Posted on May 25, 2012 by | 10 comments

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

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That Pesky Issue of Death and The Desire For a Sleepover

Posted on May 24, 2012 by | 4 comments

“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

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