Tag Archives: New York City

Fears Reduced to Nothing

Even though Emma and I traveled all day yesterday to get back to New York City, even though all kinds of things went through my mind as we spent the four-hour layover walking the entire length of the Denver Airport THREE times, in search of the ever elusive Nestle’s Chocolate milk, because no other chocolate milk will do as far as Emma’s concerned, even though I have a number of things I could say about all of that, I’m not.  Instead I’m posting these photos taken our last day and night in Aspen.

Because it was so wonderful to witness Nic and three of his friends being so great with Emma.  Because the last photo in particular piggybacks on, so beautifully to yesterday’s post about all my fears regarding Emma and neurotypical kids.  Because so often fears have nothing to do with reality.   And because I need to be reminded of that.

Emma on the Hunt’s trampoline 

A young buck in the field right outside my mother’s house

Emma,  the Hunt boys, Nic and Jack playing “Dead Man, dead man”

 

Emma, Nic (doing a flip), Ethan and Jack 

Emma was intent on jumping on the trampoline with Nic, the Hunt boys and their friend Jack, but none of them wanted to go.  It was already dark out, it had been raining, the trampoline was soaking wet, they were having fun rough-housing, it was unanimous, not one of them wanted to go.

Emma:  You have to ask.  Nicky, do you want to go on the trampoline?

Nic:  No, Em.  No. I don’t.

Emma:  Ethan do you want to go on the trampoline?  Yes?  Or No?

Ethan:  No.

Emma:  Say YES!

The boys start laughing.

Emma:   Yes, you do want to go jump on the trampoline.

Ethan:  Looking unsure, but smiling at Emma.  Well…

Emma:  C’mon, let’s  go!

And they did.  They all traipsed outdoors in the dark and they had a blast.  Emma was ecstatic.

And so was I.

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)

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.

Expectations and My Reluctance To See What Is

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

“Umbrella, Umbrella, Raincoat!”

Yesterday Emma, wearing one of her eight bathing suits, (Emma goes through bathing suits the way runners go through running shoes) requested that we play a game of “Duck, Duck, Goose.”
“Mommy!  I want to play duck, duck, goose, please!”  Without waiting for an answer she ran to find her brother.  “Nicky, I want to play duck, duck, goose with Nicky please!”  Again she shot out of the room to find her dad.  I could hear her muttering under her breath, “Haveta, gotta find Daddy.  Gotta ask Daddy!”  There was a moment of silence as I imagined she located her father and stood in front of him.  I heard her  say, “Daddy!  I want to play duck, duck, goose please!”

For most parents this sort of request from their child is commonplace, however, with Emma it is far from the norm.   In the past year she has increasingly asked us to engage with her, usually in the form of a chase game, hide and go seek or other activity involving lots of running and ending with tickling and loud utterances of “You better run!  I’m going to get you!”  followed by maniacal laughter – Woooohahahahahaha – done in a creepy, deep sounding voice.  These sorts of activities necessitate a lot of lung power and is how I justify not having a gym membership in an area of the city that is purported to have more gyms than any other.  I know it’s a stretch, but allow me to cling to my lame reasoning.

Within minutes Emma had managed to pry her brother away from his favorite TV show, Chopped, me from my emails, Richard from his book and gathered us together on the floor where we sat in a circle as Emma stood over us and began.  “Umbrella.  Umbrella.  Umbrella,” she said as she pushed down on each of our heads.  She even pretended there were more of us than there actually were and mimed patting at least three more heads of imaginary people seated in our circle with us.  “Raincoat!” she shouted after a third orbit around us and pushing on my head.

The whole, shouting out “Goose!” while patting the chosen person on the head then running as they manage to upright themselves from a cross-legged position and chase her, is the one part of the game Emma hasn’t quite gotten down.  However, it must be said, she is at an advantage as both Richard and I are in our golden years aka members of  AARP and careening rapidly into senior citizen status and so bounding from sitting position to standing takes us a tad bit longer than it once did.  Still, Emma is easily caught, but other than this small adjustment to the game, she gets it and loves it.

I’d like to point out her creative amendment to the game in using variations on the duck, duck, goose theme.  I loved “Umbrella, umbrella, raincoat,” which is a variation on her other favorite, “Carousel, carousel, horsey!”

What an awesome kid!

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

Frustration, Self Injurious Behavior & Autism

To all who reached out yesterday – Thank you.  The feeling of  being overwhelmed that I was experiencing, receded and by the afternoon I was feeling back to my old energetic self.  Amazing how something so simple as admitting out loud how you’re feeling can elicit such an outpouring of support which in turn can transform all those feelings into something positive.  It made me think about how we – those of us who are caregivers and autistics should have a place where we could go to get support, ask questions, a place where we could come together as a community and just be, with no leaders or hierarchy, just a place anyone who wanted or needed could gather and reach out to like minded people.   If such a place exists, please let me know.

Hunter College, here in New York City, is hosting the 12th Annual International Conference in Disability Studies in Education, May 25th – 27th and I will be attending one of the presentations – Autistic and Female:  They say That’s Rare, and so many other things – with Elizabeth J. Grace.  I am very excited!

The program looks fascinating and if I could, I would have liked to have attended the entire conference.  Who knows, perhaps next year I will be able to.

On a separate note, Emma became frustrated yesterday while at school and bit herself.  This has been an ongoing issue, one that began when she was at her special-ed ABA based preschool when she was just three.  A boy bit her, on three different occasions, causing the skin to break and each time this happened we would get a call from the school telling us that this same child had bitten her, that they were doing everything they could to monitor him, but that while it obviously hurt her, no real harm had been done.  Not long after that, Emma began biting herself.

It is horrifying to witness your small child, in such obvious pain, attempting to manage their upset by harming themselves.  Emma bites her arm or hand or in extreme cases will punch herself hard in the face.  We have used a variety of techniques hoping to stop the behavior, but so far none have worked, though she does not bite herself as much as she once did and rarely punches herself in the face any more.

A few weeks ago I reached out to a couple of Autists I know asking for their suggestions and one had some great ideas about things that might help, such as chewy tubes, which we have bags of and had all but forgotten, and having a favorite stuffed animal with her. I decided to ask Emma whether she would like to have a stuffed animal to take with her to school, and while she declined, she did say she wanted to have two chewy tubes in her backpack.  We discussed how when she becomes frustrated she can chew on the chewy tube and Emma nodded and shouted, “I’m so frustrated!” then grabbed the chewy tube I was holding and jammed it into her mouth, gnawing at it furiously.  I took her response as a positive sign.

I don’t know if anyone at her school remembered to remind her about her chewy tubes or if in the heat of the moment they were forgotten, but we will continue to remind Emma that the chewy tubes are with her and she can bite them instead of herself.

Telling her, “We do not bite!”  or “You may not hurt yourself!” while well meaning and said with good intentions has NOT proven remotely helpful.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

A Story About The Lady at the Zoo

Emma was confounded yesterday when she was told by one of the Central Park Zoo employees that she could not sit on the railing to watch the sea lions being fed.  She was very upset and wanted to go home.  However, instead of biting herself or doing herself injury, she came up with the following story, which is yet another example of her delightful temperament, personality and a wonderful display of the progress she is making in being able to turn something upsetting into a story that was both poignant and very funny.

Before we got on the subway, Emma verbally preseverated in her attempt to work through what had happened.  “Mommy says no.  Mommy go home, Emma stay at the zoo with just Daddy.”   Emma reasoned immediately after leaving the zoo.

“But Em.  This isn’t about Mommy or Daddy, this is about the zoo employees.  This is their rule now.  They won’t let anyone sit on the railing any more.  It’s a new rule,” We told her.

“I want to sit on the railing!”  Emma wailed over and over again as we made our way to the subway.  “You have to ask Daddy!  Daddy! I want to sit on the railing please!”

“Emmy, this isn’t up to me.  This is a rule that the zoo has.  You can’t sit on the railing.”

“But I want to sit on the railing!”  Emma cried.  Then Emma flung both arms around me and buried her head into my side.  “I know, I know.  You’re so upset,” Emma said, mimicking words I often say to her.

“Oh, Em.  I know you’re sad.  I know how hard this is for you.  But I’m also really proud of you for the way you’re handling this and talking about it.”

When her beloved R train arrived Emma secured seats for us by the window and then told the following story.

“The lady said, You have to get off the railing!  You have to get down!  Yeah,” Emma nodded her head and frowned.  Then she said,  while stomping her foot on the floor of the subway, “The lady stomped her food and said, You.  Stomp.  Have.  Stomp.  To.  Stomp. Get.  Stomp.  Down!  Stomp.  You get down right now!  Then the lady said, I’m going to get you!  I’m going to tickle you!”  Emma demonstrated being tickled.  She stomped her foot and continued.  “Yeah.  The lady is going to tickle you.  Then the lady had to go home.  She hurt her back.  Bye!  Bye, bye lady.  Lady gotta go home!  Bye!”  Emma waved her hand, like a Queen waving to her adoring subjects.  “The lady had to go.”  Emma nodded her head and feigned looking sad.  “The lady went home and Emma got up on the railing to watch the seal show!  She had to go home because she hurt her back and she has to put on a bandaid.  Now it’ll feel better.”  Emma finished and looking triumphant said, “Emma got to sit on the railing!”

“Wow, Em.  I love that story!”  I said.  “How did the lady hurt her back?”

“She tickled you!”  Emma said and then collapsed into giggles.

Earlier in the day, playing on the High Line

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

Sunday in Williamsburg with Emma

After Nic and Emma had their gymnastics lesson Sunday, we dropped Nic off in Williamsburg, taking the “blue A train with yellow and orange seats” much to Emma’s delight, (while disproving my theory that she prefers taking trains with corresponding seat colors) so he could spend the afternoon with a friend of his who lives there.  Richard, Emma and I originally had planned to go to the Metropolitan Museum, followed by a stroll through Central Park before ending up at the zoo, as per Emma’s request.  However it was suggested we walk to the East river and visit the thriving Williamsburg flea market before heading back into the city.

The day was lovely and as I’d never spent any time in Williamsburg I loved this idea and suggested we walk around and explore.  Richard was game and Emma, who really only cared about going to the zoo, was content to go along with this new set of plans as long as we found her some Nestle’s chocolate milk before we began our walk.  It was so warm that all of us shed our jackets within the first few minutes of walking.  Emma had a black fleece, which I helped tie around her waist.  She then shoved the unopened bottle of chocolate milk into the “waist” her fleece created, as though it were a gun being thrust into a holster.  Every now and again she would grab the sleeves of the fleece and tighten it around her belly, ensuring that the chocolate milk remain in position.  I wish I had a photograph, I can’t think now why I didn’t take one, it was such a powerful look and one she was able to carry off effortlessly.

For those unfamiliar with New York City and it’s nearby environs, Williamsburg, once occupied by large industrial companies such as, Pfizer, Domino Sugar and Standard Oil, was also a coveted resort for many of New York’s wealthy elite in the 1800’s.  In the early 1900’s it became home to Hasidic Jews escaping Nazi, Germany and much later to Puerto Ricans lured there by the abundance of factory jobs.  Williamsburg is now going through a gentrification, with hipsters and artists populating the unoccupied enormous factory buildings and loft spaces.  Though many artists have already begun moving east, unable to afford the rising rents in Williamsburg, it still retains a certain “hip” allure with almost everyone under the age of 50 showing off elaborate tattoos and unconventional hairstyles.

By the time Emma, Richard and I reached the East River, Emma enthralled with the notion we would take a water taxi back into Manhattan never once mentioned the zoo.  When I explained to her that we would only have time to wander along the piers before the water taxi arrived and would then have to head home she nodded her head and said, “Go on water taxi, then take number 1 train home!”

“Yes, except we can’t take the number 1 train, we’ll have to take the number 2 train.”

“Take the number 2 train,” Emma confirmed.

Emma was ecstatic when we boarded the water taxi and sat on a seat closest to the window.  “Mommy sit here,” she said, patting the seat directly in front of her.

“No, Em.  I’m going to sit next to you here.”

“Mommy sit here?”  Emma said looking slightly distressed.

I knew she wanted me to sit in front of her because she wanted to suck her thumb without any comment from me.  “It’s okay Em,” I said, before sitting down.

Another family sat directly in front of us, with two small children no older than three.  One of the little girls turned around in her seat to stare at Emma and then mimicked her by jamming her thumb into her mouth, just as Emma was.

When we arrived at South Seaport Emma said, “Go get Nicky.”

“No Em.  Nicky’s friends are going to drive him back into the city later. But we could walk a little bit and take the number 1 train.”

“NO!” Emma cried.  “Take the number 2 train.”

Which is exactly what we did.

“Hey Em.  This was such a great day.  Did you have fun?” I asked as we shot uptown on the number 2 train.

“Yes!  I had so much fun with just Mommy and Daddy!”

For my latest piece in the Huffington Post, click ‘here‘.

Emma and the Puffin – A Moment of Connection

As promised – Emma’s zoo excursion was this past Sunday.  As I’ve written before, the zoo holds a particular appeal to Emma, an appeal that, frankly, is often lost on me.  Still, I had agreed to go with her and because I had had a couple of days in which to mentally prepare myself, I felt eager and excited in anticipation of our little adventure together.

As predicted Emma wanted to visit the bats first, then made her way outside to watch the polar bear do his perseverative laps.  He has been doing the same routine for years.  He swims on his back to one side of his enclosure, then braces himself against the wall, pushes himself off and propels himself through the water to the opposite wall, before flipping over, diving down and doing the whole thing over again to the ooohs and ahhhhs of the admiring and curious crowd of humans standing against the thick plate of glass separating them from him.  Emma watched silently and then, like Howard Cosell reporting from ringside, (does anyone remember Howard Cosell?) began narrating.  “The polar bear is swimming!  He is under the water!  Uh!  Where did he go?  There he is!  He came back!”  After awhile Emma had had enough of the polar bear and off we went to her favorite perch where she likes to sit and watch the various ducks and other aquatic birds. (Truthfully I have no idea what types of birds were swimming around and as I was keeping my eye on Em, couldn’t find any plaque telling me what we were viewing, I’m afraid, “aquatic birds” is the best I can do at the moment.)

“Time to see the penguins!”  Emma announced and grabbing my hand she made off for the penguin house.  The penguin house has an unfortunate odor. I must hold my breath when we are inside because the smell is one I cannot cope with.  But Emma doesn’t seem to notice the smell and loves the penguins.  She presses her body and face right up to the glass as she watches them swim and strut about on the artificial land mass.

The puffins were next, a lesser attraction and so relegated to a tiny enclosure.  In the past the puffins have been no more than an exit marker, but this time she did something I’ve never seen her do.  She went right up to the window and stood perfectly still with her up-stretched arms flat against the pane.  A single puffin swam up to her and put his beak to the glass and then idled there, barely moving.  It was bizarre and beautiful.  I was so excited this photo is horribly out of focus!

Emma and the puffin stayed facing each other for a couple of minutes before Emma was pulling me out the door just in time for the 4:00PM feeding of the sea lions.

I wanted to ask Emma about the puffin.  I wanted to know what she thought of him.  What was she thinking and feeling as she stood there?  What was the experience like for her?  But other than to say, “Puffin.  I like it.”  I could get no more from her. Perhaps there are no words for what she felt standing there face to face with this curious creature who seemed so intent on being as close to her as was physically possible.

Stay tuned tomorrow for Emma’s self portrait!

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here

On Autism, Honesty and the Art of Not Yelling

Be honest.  This is what Richard reminds me when I feel stuck.  Whether its regarding my writing or when we are discussing something that is difficult or when I simply feel confused.

Be honest.

Sometimes it’s easy, like when I feel sad and a little frightened that Richard threw his back out again and is in so much pain he can barely walk or I’m annoyed because while waiting for the subway this morning a woman cut me off and sat in the only vacant seat, forcing me to stand or how happy I felt last night when Nic asked me to watch an episode of ‘Chopped’ with him and then pulled a blanket up around us both and said, “I love this, Mommy.  We’re having a son and mom moment.”  Or the sadness that tempered that joy because my next thought was – Emma cannot say that, does not say that, has never said that and then scolded myself for having had that thought because Emma can and does talk, while so many other kids cannot speak, let alone express more complex thinking.

Be honest.

Sometimes I just want to yell and say exactly what comes to mind, because, after all, wouldn’t THAT be more honest?  I already know the answer.    Not yelling is highly underrated, it seems to me.

Be honest.

I want people to love Emma exactly as she is.  I want people to understand when they meet her that in her short life she has already known more pain and discomfort than any young child should have to feel.  I want people to speak to her as they would any ten year old and not like she’s an animal.

I want people to be nicer to each other, which means I have to do my part.  A recent study came out saying autism may be due to older male sperm.  That evening I said to Richard, “Well that gets me off the hook.  It turns out all of Emma’s suffering is your fault.  It’s a huge relief.”  Luckily Richard loves me anyway, even when I say things like that and replied, “I’m so glad I could help you out with that, honey.”

And he did and does.

I’ll end with the conversation I had with Emma last night, showcasing her negotiating skills, inherited from her amazing dad.

“Mommy?”

“Yes Emma?”

In a sing-songy voice, she said, “Mommy takes me to the zoo tomorrow?” (It’s from a picture book entitled Going to the Zoo, from the Peter Paul and Mary song of the same name.)

“Not tomorrow, Emmy.  I can’t take you tomorrow, but you and Joe could go.”

“No!  Just Mommy,” she pointed to me and then pointing to herself, she added, “and me.  Go to the zoo together.  Maybe this weekend?”

“Yes.  We can go this weekend.”

“Just Mommy.”

“Yes.”

“Together.”

“Yes.”

“Time to read a story now.”

“Okay, Em.  I love you.”

“So much.”

(As my mother pointed out after I posted this, this conversation was a perfect demonstration of Emma expressing her desire for a – Mommy and daughter moment!)

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here

New York City Subways and Musings on Autism

Yesterday afternoon I received the following text from Emma’s therapist Joe – “Heading your way.  Em had a rough day after museum trip.  Wants to see you.”

First of all, I’d like to point out that the fact that Emma was able to communicate to Joe that she’d had a rough day is a massive leap forward.  Secondly that she was able to then make it known that what she now wanted to do was see me was nothing short of amazing.  It required her to identify her feelings.  It required her to map out what might make her feel better.  It required her to verbally put together the words in such a way that they would be understood.  It required her to then make her request.

Yesterday morning on the subway headed to my studio I was reading the memoir by the autist, Rachel Cohen-Rottenberg, Blazing My Trail on my ipad.  It’s a wonderful book, for those who don’t know of it, and had fully captured my attention when I felt a light tap on my arm.  I looked to my left and there sat a woman, about my age or maybe a bit younger dressed in a suit, clasping a briefcase.  “Excuse me,” she said.  “I get claustrophobic in subways, especially when they stop and it helps if I have someone to talk to.  Do you mind?”

“Oh,” I said, surprised by her directness, but also relieved that she seemed genuine (this is New York City after all) and was clearly frightened that our train had come to a halt in the middle of the tracks, something I hadn’t even noticed until she tapped my arm.  I closed my ipad and turned toward her.  “Sure,” I said. Not at all sure what to say next, but because I had just been reading Blazing My Trail in which Rachel Cohen-Rottenberg talks about wishing people would just ask how they might help, I asked, “What can I do?”

“Just talk,” she said, then to help me along she motioned to my ipad, “What were you reading?”

So I told her about the book I was reading and how wonderful it was.  We then talked briefly about autism, something she knew almost nothing about. I asked her where she was headed.  She told me about a business meeting she was on her way to at Rockefeller Center and how she was nervous about it.  And then the train began to move again.  She took a deep inward breath and exhaled, shutting her eyes momentarily before opening them again and smiling at me.  “Thank you for being so kind and talking to me.  You have no idea how much it helped.”  At the next stop she got up.  I wished her luck and she disappeared.  As I sat watching her leave I thought about how great it was that she had figured out what she needed to do to help herself through what was clearly a stressful situation.  And then I thought about Emma.  I thought about how I hoped Emma would one day be able to express herself in a similar way.  I thought about Rachel Cohen-Rottenberg’s memoir and how she has learned through a great deal of trial and error to get her needs met and I thought about how hard it is for so many of us to know what we want let alone muster up the courage to ask for help.

Not eight hours later I received Joe’s text – “Em had a rough day after museum trip.  Wants to see you.”

Wow!

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Crocuses, New York City Firemen and Emma

As Richard and I revel in Emma’s affectionate embrace, New York City is experiencing an extraordinarily, early spring.  Purple, yellow and white crocuses are peeking out from mounds of dirt in great bursts of color.

This weekend the weather hovered around 60 degrees, today it’s suppose to go up into the 70’s.  The firemen, always good indicators of the temperature outside, across the street from our loft, are wearing shorts.  People are smiling, daylight savings time is in effect and this morning Emma was still asleep when Nic and I left the house.  Short of pinching myself to make sure this isn’t all a dream, as we waited for Nic’s bus to arrive, I couldn’t help but wonder – What’s going on around here?!

In addition to Richard’s beautiful post from yesterday, Emma is making progress in countless ways.  So I’d like to take a moment here to take stock, a kind of inventory gathering of this past year, to highlight how far Emma has come.

One year ago, Emma was struggling with forming the letters of the alphabet.  (I’m not kidding, I just went back and looked at my old notes.)  Today Emma is reading at a first grade level or higher.  In addition, Emma is writing and typing full sentences in answer to questions posed.  Emma knows more than 200 words by sight, she understands punctuation and uses a period, question mark and comma appropriately.  Emma knows to use an upper case letter when beginning a sentence both when writing by hand and when typing.  Emma is learning to use the past, present and future tenses when speaking, writing and typing.  Emma has made a massive leap forward in her use of the correct pronouns.  In addition (no pun intended) she is able to write simple math sentences, adds and subtracts 1, 2 & 3 up to the number 30.  Emma loves doing mazes and connect the dot pictures.  Emma continues to enjoy favorite picture books, but is now reading them herself!  She is no longer simply flipping through the pages, but is actually pointing to the words and READING!  I know, I just said that, but I find this really, very, very exciting.

Emma’s greatest deficit is in her expressive language, but we have been working on that through Dr. Blank’s “Step into Stories” program and through a number of other exercises and work we are doing with her.  Emma is working with Joe after school for a solid two hours and is able to attend during that entire time, with just a few two to three minute breaks throughout.

For the past three weekends, we have taken both children out to brunch at a different restaurant each time and Emma has sat and eaten food from the menu.  Any idea how exciting that is?   We live in New York City, after all.  People here eat out more than they do in, but for us, it’s exhilarating.  She sits in her chair, waits for the meal to arrive, engages with us, and enjoys herself.  Eating out together as a family was not something we have, up until now, been able to do.  One year ago we were having to pack a separate suitcase with the foods Emma would eat whenever we traveled.  Going out as a family to a restaurant was not something we even considered doing.  Emma has slowly expanded what she will eat.  This past Sunday Emma ordered apple juice and made no fuss when it arrived in a tall glass with a straw.  A year ago, not only would she not have ordered apple juice that she was unfamiliar with, but had one of us ordered it, she would have refused to even take a sip without a great deal of protest.  This is the same child who would spend an entire day refusing to drink or eat anything, if it was not familiar and known to her.

In gymnastics Emma is beginning to be able to perform a cartwheel that actually resembles a cartwheel.  She is able to do a hand stand, does jumping jacks on the trampoline and has learned how to touch her toes during the stretching period.  I know, all of this sounds pretty rudimentary,  but for Emma these are monumental leaps forward.

As Richard so eloquently wrote, Emma spent Sunday walking with us, not running ahead, there were no grunting or squealing noises, no sudden bursts of arm waving while jumping about, just walking, arm in arm, sometimes reaching for one of our hands, sometimes stopping to give one of us a hug.  There was a great deal of laughter, playing and interacting while Richard and I floated along on a cloud of joy and gratitude.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book


A Staycation

For Richard’s birthday, Joe offered to take both children snow-tubing and to an indoor water park for three days and two nights over President’s Day weekend.  Both Richard and I leapt at his offer.  Don’t misunderstand, we love, love, love our children.  But it’s really nice to have a couple of days and nights off.  Richard and I haven’t spent time, just the two of us together, for several years.  That was not a typo.  YEARS.  And never before have we stayed home without one or both children here with us.  When I told my cousin about Joe taking the children and how excited we were, she said, “Oh you’re having a staycation!”

The kids and Joe left yesterday.

I cannot describe how incredible it is to have the comfort of our home with only Richard and me (and our cat, Merlin) here in it.  For one thing it is very, very quiet.    And for another we can come and go as we please without booking caregivers, worrying about being home at specific hours; it’s hard to believe a large portion of the population lives this way on a daily basis.  I can’t imagine!  So yesterday Richard and I went up to MAD (Museum of Art and Design) leisurely strolled through the exhibits, even wandered up to the sixth floor to the Open Studios, where we met the artist, Fergus Walsh, a puppeteer at work on one of his wonderfully expressive clay looking creatures with funny eye balls.  Then we made our way downstairs to the Beauty in All Things:  Japanese in Art and Design show, where I saw this Bronze Vessel by Iwata Kiyomi, made of metal cloth, composite, gold leaf, silk organza and acrylic paint.

Never once did one of us say with an edge of panic, even though she was right next to us, “Where’s Emma?”  or “I think the kids have had enough, we better get going.”  We took our time, pausing at things we found particularly compelling, like the moving Japanese screens depicting the changing seasons.

Later we went to see a silly movie about two hired assassins who fall in love with the same girl, unbeknownst to her.  By the time we left the movie it was dark. We walked over to a little restaurant in the Flat Iron District we like, Basta Pasta, a Japanese take on Italian food packed with an eclectic crowd of people from all over the world.  We didn’t worry about rushing home to relieve the baby sitter.  We didn’t bother looking at the time.  Though at one point I did say to Richard, “after dinner I think I’ll text Joe and just check in.”  But just as I said that, Joe sent me an email saying both kids were exhausted and asleep having had a great day snow-tubing and swimming.

By the time we returned home we marveled at how quiet the house was.  We discussed what we would do the next day before turning off our reading lights.

“I’m glad to have this time together, just the two of us,” I said in the dark.

“Me too,” Richard said.

“I’m glad the kids will be back Tuesday night.”

“Me too.”

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

New York City

Every weekday morning I get off the subway and as I walk to my studio, I see a version of this (minus the large truck and woman carrying a newspaper) –

Seeing Manhattan in front of me as I walk to work fills me with optimism; anything seems possible.  It reminds me of that first evening when I flew into JFK Airport to attend Parsons School of Design.  After hailing a cab, all my belongings packed in the trunk, we drove toward Manhattan.  I looked at the city’s breathtakingly beautiful skyline and knew I was home.  That was in August of 1981.  I love New York City.  I love the buildings, I love the parks, I love the art, the museums, the theatre.  I love that on any given night one can see world class dance, music, performance or dine at some of the best restaurants in the world.  I love the diversity of New York, a city that draws people from all over the world.

When I am with Emma, my beautiful girl who gallops more than walks, her head down, her arms flailing about, no one pays attention.  I am grateful when we are in the subway and the doors close with the accompanying bell sound and Emma mimics that bell, but says “Dank you!” in the same tone and volume, most people don’t bother to look up.  They’re New Yorkers after all, far too busy to be concerned with the weird utterances of a child.

I love how the city is in a constant state of flux.  The view from our living room windows, once dominated by the World Trade Center towers, show an ever shifting skyline of downtown Manhattan, a constant reminder of how everything changes, whether we want it to or not.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Anniversary

Eleven years ago, Richard and I were married.  As usual we were a bit unconventional in the way we met, dated, had our first child, then lived together and finally were married.  We were married in a beautiful, old, though dilapidated, building in New York City, which also happens to be the oldest  synagogue in New York City.  (Neither of us are jewish, the building is no longer used for religious purposes, but instead is rented out for performances, parties, Spike Lee filmed a music video in it and other events.)  The day we were married, New York City was in a blizzard.  The black limo we’d ordered never arrived.  Meanwhile Richard had gone ahead with most of the other wedding party.  I was with Nic and my sister, on the phone, yelling at the car company, demanding they send a car, any car to take us downtown.  When the car finally arrived, they’d sent a white, stretch limo.   I remember I turned to my sister and said, “I feel like I’m going to a prom.”

“Let’s just go,” she pleaded with me.

We were over an hour late.  When we arrived Richard said, with his usual dry sense of humor, “I was wondering if you were going to show up.”  As my mother’s cousin, Peter led me down the aisle I kept my eyes on Richard, so handsome in his tuxedo and mouthed, I love you.  My entire family were there, Nic, then nine months old and wearing a little velvet tuxedo was in the first row.  Emma would be conceived in another few months.  We had no idea of the events that would unfold in the coming years.  We couldn’t know the feeling of unadulterated joy at the birth of our daughter, Emma, just two years later or our pride in watching our son, Nic play his Alto Saxophone in the winter concert at his school, just a few weeks ago.   All those moments, millions of moments when events played themselves out.

It was 15 below zero and the basement of the building where we had a quartet set up to play after the ceremonies, played with their down coats on and fingerless gloves.  You could literally see your breath it was so cold, still even in the freezing cold, it was beautiful.  Richard reminded me to stop every twenty minutes or so to just take it all in, because this night, this moment would all be gone, before we knew it.

Eleven years later, Richard still has to remind me to stop and breathe, enjoy the moment because it is all so fleeting.  But I do, we do.   We have a good life: two beautiful children, a wonderful extended family, dear friends, a good, strong marriage, our love for one another and this moment.

Our wedding – December 22, 2000

For a more detailed look at Emma’s journey through a childhood of autism, go to: Emma’s Hope Book