Category Archives: New York City

SpyGear, Flamingos, Freedom Tower And My Handsome Husband

Update:  Emma arrived safely at her new school via the school bus this morning!  The tracking device, surveillance cameras, James Bond style secret pen with microphone hidden in her backpack, spy cam disguised as trendy sunglasses and stress relieving songs of the humpback Whale downloaded (for me) worked wonders…  (Just kidding)

I encouraged Emma to rehearse with me this morning what she might say if the bus didn’t take her to the correct school again and Em, never one to pass up an opportunity to perform, said in a loud, clear voice, while dramatically gesticulating, “You’re going the wrong way!  You have to go this way!  I go to new school..  I go to ______  (name of her new school)!”  Then she beamed at me as I applauded and cheered.

Yay Emma!

Emma in her favorite Flamingo costume last night on the roof

Playing with Daddy who donned Emma’s hat as though it were a feathered pith helmet.  Can we all just gasp in appreciation at Emma’s magenta tail feathers! 

The light was so beautiful last night – A glimpse of the Empire State Building

And to the South, Construction of Freedom Tower Continues..

And finally my handsome husband…  who was engaged in an animated conversation with our son, Nic (off camera) about his, just released and new favorite, video game – Borderlands2

From Storm Clouds to Sunshine

Yesterday was one of those days when everything felt harder, everyone seemed grumpy, everything seemed to go wrong.  Yesterday felt like this:

By the time I got home I didn’t even try to conceal my irritability.  “You okay?” Richard asked when he saw me walk in.  “Just feeling out of sorts.”  Richard nodded his head.

I stayed away from everyone, tried to keep my interactions to a minimum lest I take my grumpiness out on my family.  After an hour or so I could feel my mood lifting.  Richard and I had the following conversation.

Me:  Standing in doorway  Hey honey?

Richard:  deeply engrossed in writing  Uh-huh?

Me:  What do you think about having some down time, you know, just you and me?

Richard:  still writing  Yeah.  That sounds good.

Me:   Still standing in doorway   Um.  Yeah.  Like, you know.  Just the two of us.

Richard:  Looking up from the computer.  Yeah.  Okay. 

Me:  Continuing to stand in the doorway

Richard:  Yeah  Big grin.  I’d like that.

Me:  Reaching for “Autism is a World” DVD   Great!  Cause I’ve got this autism video I’ve been wanting to watch with you…  Waves video in the air.

Richard:  confused look, trying to assess whether I’m being serious.  He knows me and knows this is just the sort of thing I might suggest, though the previous dialogue suggests otherwise.   So he’s trying to figure it out.  I can see him going through the mental gymnastics.  

Me:  Laughing

Richard:  Look of relief.  

Me:  Does a little dance.

Richard:  Glad you’re feeling better.

Fade to black

*As my friend Ib would say – on a lateral side note – I am off to the UN today for The Fifth Conference of State Parties to the Convention on the Rights of People With Disabilities moderated by Juan Carlos Brandt, Chief, Advocacy and Special Events, Department of Public Information, United Nations.  I intend to speak up about the need for including Autistic voices (emphasis on the plural) at any and ALL meetings such as this one.  Wish me luck.  It’s a beautiful day!

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Emma Takes Mom on An Awesome Adventure

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

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

“You want to stay on the train?”

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

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

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

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

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

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

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

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The Endless Parade of What Ifs

Emma and I are leaving this…

 

and returning to this…

without Richard and Nic.  I know.

Crazy, right?  Except that Emma is going to day camp.  A camp she adores and has been going to for the past four years.  A camp for neurotypical children, run by a man who welcomed Emma and urged us to let her attend four summers ago.  Each summer he gives me updates on how she is faring.  Joe will shadow Emma as he has the last three summers.  I will write and get work done for my business, before heading to Jerusalem for the Icare4Autism conference at the end of July.

This Thursday Emma and I are going to Fire Island to stay with my dear friend, Bobbie for the weekend.  She and her family have rented a house on Fire Island for the summer and invited us out several months ago.  Emma has been talking about going since April.  And while Emma is excited and can’t wait to go, I am filled with trepidation.  Because along with Bobbie and her two children, one of whom is Emma’s age, there will be another family too.  I have never done this, spent an extended period with a neurotypical family, forget TWO neurotypical families.  It will be just me and Em, with no one to help out if things start to go badly.  It is a testament to my friendship that I was able to accept Bobbie’s kind invitation.  I have spoken to her at length about some of my fears.  She has a vague idea of what I’m talking about.  But it’s vague at best.

What if the other children don’t include her?  What if they do include her?  What if she wants me to spend the entire time in the cold ocean?  What if she takes off all of her clothing and runs through the house naked?  What if she makes strange noises and whips her string around?   What if the other children make fun of her?  What if they say things to her that hurt her?  What if they pretend she doesn’t exist?  What if they talk about her in front of her?  What if I’ve turned away, even for just a second when this is done?  What if she wants to play “duck, duck, goose” and they tease her or laugh at her for wanting to?  Will I be able to remain calm if any of these things happen?  What if I don’t have the words to explain that they need to appreciate her?  What if I can’t find the right words to describe how amazing she is if they’d just put aside what they’ve been taught to expect from someone?  What if?  What if?  What if?

Why do I think in these terms?  Emma is Emma.  Let me take a page from her book of self acceptance.  She is who she is and who she is, is pretty f@#king fabulous.  I do not need to worry that Emma will behave in a cruel or manipulative way to another child.  I don’t have to worry that she will gossip or whisper behind another child’s back or knowingly exclude a child.  She will not bully or lie.  She will not play favorites or tell secrets.  Emma will not play tricks on any of the other children or make them feel badly about themselves.  It’s not in Emma’s nature to tease or ridicule.  She isn’t capable of behaving in hurtful ways to others.

I’d be lying if I didn’t admit to worrying.  Emma is different and truthfully, so am I.   I have never felt completely secure in these kinds of situations.  I have never felt fully at ease in groups.  I have always felt slightly apart from.  As though everyone else got the same script, but the script I was given was to a different play with different characters and in a different place.  It’s been this way, long before I had children.  I feel most comfortable with people who are a bit “quirky.”   One of the things I love about communicating with Autistics is that I don’t have to second guess anything.  If I don’t understand something I say that, I don’t have to pretend.  There aren’t any hidden agendas.  No one’s trying to socially outdo the other.  There is a directness and an honesty that I appreciate.  No one is going to talk about the weather or if they do, it’s because it’s somehow impacting them in a meaningful way.

My friend Bobbie and I have known each other for more than twenty  years.  We have been through a great deal together.  She’s one of those friends who asks questions instead of giving advice.  She has listened to me go on and on about Em and autism and she has followed Emma’s progress, and mine too.  She has been there for me, applauding me, cheering me on and when I’ve asked for it, given me her opinion.  When I think of her, an image of an extended hand comes to mind.  She is there for me.  She always has been.

So I’m taking a chance.  Whatever happens it will be memorable.  And who knows, we may even have a really nice time.  But regardless, I will have pushed past my comfort zone by trying something new and this time, Emma is leading the way.

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.

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

Handwriting and the Joy of the Yellow R Train

First off, you’ll notice to the right of these words a blue “badge,” which, if you click on it, will show you a line up of all the blogs nominated for the “Top Autism Blogs for 2012.”  To vote for Emma’s Hope Book, click on the “like” button.  At the time of this writing Emma’s Hope Book was in the #4 position!  Very exciting.

Below is the “story” Emma wrote yesterday morning in preparation for our much anticipated day.

I had to help Em with some of the words such as shower, Elite Gymnastics and she wanted to write – After lunch will go zoo – so I had to help her with that too, but otherwise Emma did most of this on her own.  To recap, a year ago Emma had just finished learning how to form all the letters of the alphabet and we were in the initial phase of beginning to work on reading, writing and typing actual short words.  She’s come a long way, baby!

As her writing stated, after lunch Emma and I went to the zoo.  “Just Mommy and me, together,” Emma reiterated several times that morning. “Yes, just you and me,” I confirmed each time.  “Going to take the yellow R train,” Emma said matter-of-factly.  Emma loves the R train.  She refers to it as the “yellow R train,” because the letter R is in the middle of a yellow circle.  All the subway trains here in New York City are designated with a number or letter within a colored circle.  Whenever possible, Emma requests the R train, which is fine, except that this is not the train closest to our home and a few months ago the R train wasn’t running on the weekend, much to Emma’s consternation.  As we made our way to the station, I cautioned Emma that we had to take whichever train came first.  “Yellow R train!” she insisted.  The very prospect of riding the R train, almost more than she could cope with, caused her to bounce up and down.  She beamed at me.  “Okay, but Em, if a Q or N train comes, then we’ll take either of those too.”  “Take the yellow R train,” she responded.  “Em…” I started, but before I could say more she cut me off and said, “Okay, okay, okay.  Maybe take the yellow R train, maybe not.”  Then quietly she muttered, “Take the yellow R train!”

Another train flew by on the express tracks, so fast I couldn’t tell which train it was.  But Emma knew with barely a glance. “Look, there’s the yellow Q train,” Emma said, pointing as the train whizzed by.  “Yeah, that’s the yellow Q train with blue seats,” she said.

“What?”

“The yellow Q train has blue seats.”

This was news to me, not the sort of details I notice, but exactly the kind of details Emma notices.  As I was pondering this, Emma said, “Look!”  Then she grinned.  “It’s the yellow R train,” she said with a kind of reverence, as though greeting an adored and much admired friend.  As the train slowed to a stand still, Emma found us both a seat and giggling said, “We’re sitting in orange and yellow seats!”

“Is that why you like the R train?” I asked.

“The yellow R train makes me happy,” Emma said, before peering out into the dark tunnel and grinning at her own reflection.

And so it does.

Coming tomorrow – The Central Park Zoo and The Puffin.

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

Happy Birthday Dear Emma

Emma’s birthday is today, but her birthday party was this past Sunday at an enormous gymnasium here in New York City.  She asked that we invite some 18 children, many of whom could not attend, but eleven children did, including Em and her older brother, Nic.  Seven of those children were on the spectrum.

When the children began arriving, Emma seemed uninterested and barely acknowledged them.  I told myself she was overwhelmed, that just because she asked for all of these things, perhaps once it became reality, she wasn’t sure what to do.  I tried to talk myself into a more accepting frame of mind, but if I’m being honest, I had expectations.  Expectations that, I realize now, were completely over and beyond what could realistically happen.  This isn’t unusual for me and it is something I am trying to become more aware of.

There is a great deal of talk about preparing one’s child for these sorts of events, going over the list of children who will be coming, talking to Emma about what will most likely happen, the various activities they will do, how she will need to wait her turn, how they will do a great many different things, how we will then have food and cupcakes and birthday cake at home later.  But there isn’t a great deal of talk about preparing oneself.  Frankly, this is where I need to do the most work.  I was utterly unprepared for Emma’s unenthusiastic response to all the other children.  I was unprepared for her to not only not pay attention to them, but to stand in front of a mirror toward the end of the party and make faces at herself while singing and dancing.  When anyone else tried to join her she would turn her back on them or move away.  The truth is, I was unprepared for exactly what happened and found myself feeling disappointed.  When I step away from all of this and put my emotions aside, after all this was not my party, it was hers, I think Emma had fun.  I think she was happy.  I think if she could tell us, she would have said her party was exactly what she wanted.

Happy Birthday Dear Emma!

Emma waiting for her turn to jump into the foam pit

In the foam pit

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


Isolation, Autism and a New Camera!

It’s interesting to note that autism, something defined by a lack of social skills, which in turn can lead to isolation in the children who are diagnosed with it, can have an isolating affect on the parents of those children for very different reasons.

How many of us have lost friends, seen some slip away after our child’s diagnosis while others we chose to avoid because they seemed unable to understand?  And what about family members?  When Emma was first diagnosed I felt such fear and worry and turned to a number of girlfriends I had at the time.  A couple of them were suddenly too busy to get together, while others just didn’t reach out.  Perhaps it was too much for them, too painful, who knows, but I felt incredibly sad when I realized those friendships were not able to withstand the diagnosis.

Now seven years later since we received Emma’s diagnosis I have new friends, many I’ve never met, others are from my life before, some even came back after having left for awhile.  What is wonderful though, is that those that are no longer in my life, I rarely miss and those that are in my life I am grateful for.

On an entirely separate note – Richard, my wonderful husband, bought me an early Christmas present, a new camera!

Emma at gymnastics on Sunday

Getting a little help from Brett

This morning waiting for the school bus

This is a hawk we saw in Union Square Park on Sunday!  (This has nothing to do with autism, I know, but isn’t he beautiful?)

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