Category Archives: New York City

What is

A Zen buddhist teacher told me once – anything that happens in life is an opportunity to practice.  I remember my feeling of irritation when she first said that to me.  As the years pass I think of her and her statement often.  Whatever it is that is happening – if I can suspend my judgement and not label it as good or bad, but just as what is, I have taken away one more obstacle.

I think of Emma, beautiful, amazing Emma, who is unique and like no other child.  Her autism is neither good nor bad, but what is.   Even as I write this I can feel the tug in my chest, the little voice whispering to me, no – it is bad.  As though by accepting I will have given up.  As if my judgement will somehow make it go away.  As though the label will somehow change it.  I am not in the we-must-accept-and-do-nothing group.  I am in the – my labeling her autism or anything else for that matter as bad does not take it away – camp.  It just adds one more thing that I am fighting.

My practice is to continue the fine art of balancing what is with what I wish to be. What I wish for, what I hope for, what I work so hard for is to help Emma become more independent.  To celebrate her strengths, to encourage her to sing, to join her in her joy of music, to push her to work on her spelling, reading, writing, typing, math and language.  To gently lead her away from her rigidity, to embrace her silliness, to urge her to explore and be curious.  While I am doing that, I continually remind myself that each moment is a moment that simply is.

Emma is and for that I am eternally grateful.

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

New York City Empire State Building taken from the High Line last night.

Halloween in New York

(Something odd happened in almost every photograph taken – either Emma’s or my eyes look creepy.  I figured since I was dressed as a “Fallen Angel” I should post the one with my weird eyes.)

In New York City, a great many people, adults and children alike get dressed up for Halloween.  And not just those who walk in the epic Halloween Parade that begins in the village and winds its way north until it ends just a block from where we live.   (This is in explanation to those of you who might think we’re peculiar – though we probably are.)  We live in Chelsea where at least eight blocks of brownstones go all out for Halloween.  New Yorkers take their Halloween very seriously.  The brownstones don’t just have a couple of fabulous pumpkins on their stoops, the building’s facades are covered in cobwebs, enormous black hairy spiders hang from windows and doors, strobe lights blink, Halloween themed music blares from speakers rigged outside (Michael Jackson’s Thriller is a big hit), a coffin with a corpse that suddenly comes alive decorates a front garden, dismembered limbs hang from trees, a couple of the brownstones even used dry ice to create a fog that meandered down the block. People travel from all five boroughs to trick or treat on these eight blocks, they have become so renowned.

We usually try to get an early start as the streets become so crowded it’s almost impossible to squeeze through the crowds by 8:00PM. What with Richard’s broad shoulders from his executioner’s costume and my tattered wings, we were like a double-wide, the Hummer of costumes, taking up most of the sidewalk, requiring us to walk single file.  I clocked half a dozen people inadvertently with my wings, though everyone was forgiving – one man even said in a reverential whisper – “I’ve been touched by an angel.”

Richard upstaged all of us though.  Every now and again I would turn to find him nowhere in sight.  Ten minutes later he would catch up, having been grabbed by someone who insisted on having their photo taken with him.

One of many Chelsea brownstones transformed for Halloween

Emma laughs with her scary dad

One of the dozens of shops open late for Halloween – This unicorn was one of my favorite costumes – look at the pose!

Luckily, Emma has never eaten the Halloween candy given to her, much to her brother Nic’s delight.  She did say at one point, while holding a lollipop, “Just taste it!”

“No, that’s okay, Em.  You don’t need to taste it.”  I smiled at her.

“Just lick it!”  She began unwrapping the lollipop.

“Oh that’s okay, Em.  You don’t have to lick it.”

“It’ll make you sick,” she said, putting it back in her halloween basket.

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

Emma and Food

I have been keeping a chart of the new foods Emma has tried these past six days.  To date she has sampled:  pear, banana, apple, blueberry, raspberry, watermelon, honeydew melon, papaya, raisin, dried apricot, homemade granola, oatmeal with banana and raisins, chicken, (catfish, kale – totally pushing my luck last night with those two)  and the piece de resistance – vegetable frittata!  To date her favorites are watermelon, pear, banana, apple, raisin, chicken and the frittata.

I am also reading the Gut and Psychology Syndrome (GAPS) by Natasha Campbell-McBride.  It is a diet created by Dr.Campbell-McBride who “healed” her own son diagnosed with autism.  It is a daunting proposition, which requires one to forego almost all foods (saving a meat broth which one is suppose to consume every 30 minutes or so) for a few days to several weeks in order to allow the gut to heal before slowly introducing easily digested foods until eventually the child is able to eat a wide range of foods.   This diet is so draconian in the beginning, it makes going gluten and casein free look like a picnic.   Still I continue to do my research.  I guess you either have to laugh or cry.  I’m going with laughter at the moment.  Tears to follow, I’m sure.

Over the long weekend we took the children to the New York Botanical Gardens.  It was in the 80’s and gorgeous.

The Haunted Pumpkin Garden

The “Herb” Garden

As delightful and creative as these pumpkins were, Emma was much more concerned with getting on the tram that runs through the grounds of the Botanical Gardens.

“She loves various modes of transportation,” Richard observed when we finally secured four seats on the tram.

Yup.  That’s our Emma.

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

Saturday with Em

This past weekend Richard did a bit of research and came up with a packed afternoon of things to do with the children.  Richard is the one who reads Time Out NY for Kids.  He pores over the finer details of exhibits, performances, always considering whether it will be appropriate for our neuro-typical son, Nic, but also for Emma, who has autism.  He takes into account her special needs as he peruses the various activities.  Richard is the one who reserves tickets, maps out routes, plans the schedule as only a seasoned New Yorker and caring dad can and would do.  When we went to California for my brother, Andy’s wedding, Richard put together a jam packed children’s dream vacation for two days.  Emma still talks about it.

So off we went Saturday afternoon to the West Village where we saw Cobu – a group of performers who mix Taiko Drums with American Tap dancing.   During forty-five minutes of dance, drumming and swirling costumes, Emma only once put her index finger to her lips during a rare silent moment and made a loud “SHHHHHH!” sound.  We glared at her and she then whispered, “No talking.”

After the performance we headed over to the High Line and walked toward the Chelsea Gallery district.

Whenever we passed a place that could be even remotely appropriate for sitting, Emma did just that – even when it was in unlikely places.

Our first stop was the Mary Boone gallery because of it’s unusual displays, which we thought the children might enjoy.  Emma, however, raced through pointing on her way out to one of the mannequins and shouted, “Costume,” before exiting the gallery as though she had an urgent appointment she was already late for.

Two doors down was the Gagoshian Gallery with a not-to-be-missed Richard Serra installation.

At one point Emma said, “Richard’s show.”

“Richard Serra, Em, not daddy,” I said.  To which she turned and looked at me as though I were an idiot for having felt the need to make the distinction.

“Don’t touch, Em,” I reminded her, just as she turned the corner.

On the way home Emma put her arm around her brother, Nic and the two of them made silly faces at each other.

“Hey Mom!  That’s the most she’s ever interacted with me!” Nic observed as we headed into our building.

Yup.  Everything changes.

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

Hope – Autism

For those of you planning a trip to New York City, you must take in the High Line, New York City’s most creative and interesting park, built on the old elevated tracks on the west side of downtown Manhattan.  The High Line spans more than twenty blocks and eventually will end at 34th Street.  Last Sunday we came upon this art installation at the bottom of one of the High Line’s many entrances/exits.

On each of the little red and yellow tags people had written what they hoped for.  One said, “Cure Ann of her cancer” another said, “I hope I will love Miquel forever”, and still another read, “Please make Mom get better”.

Love and health were the most popular “hopes”.  I would have written one of my own had I’d thought to bring a pen with me – Let Emma live an independent, happy life, filled with loving relationships.  I guess the thing about hope is it keeps us moving forward.  Hope allows us to get through tough times.  I am reminded of the prayer of Saint Francis of Assisi:  “Where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith, where there is despair, hope…”  Regardless of ones beliefs, these words have given solace to a great many, myself included.

For more on Emma and her journey through a childhood of autism, go to:  www.EmmasHopeBook.com

The Hurricane – Autism

Explaining to Emma why all the museums and most stores were closed and subways and buses had stopped running as of noon this past Saturday because of the threat of Hurricane Irene was difficult.  Particularly as the weather was not cooperating with all the dire predictions.  There was a vast disconnect between the news coverage and what we were actually experiencing on our street in Chelsea.  Since we are not near either river, the winds were mild if even present and though it certainly rained, it was minor compared to what many others along the eastern coast experienced.

Emma gazed out the window and said things like, “It’s raining.”  And then she would add, wistfully, “Go to the carousel.”  Followed quickly with, “No not going to go on the carousel, it’s broken.”

Try as we might to explain that the city had shut down in anticipation of the impending hurricane, she seemed unable to make sense of it. It was all the more implausible when the hurricane never actually arrived.

New York preparing for the worst?  May I just point out – this is masking tape.

Sandbags in front of the AT&T store.

One of hundreds of signs – these guys had just been through the tsunami, so they get to make fun.

Sixth Avenue – Saturday, August 27th.

Looking toward New Jersey from a pier in Chelsea – Sunday AM.

Nic and Em feel the wind on Sunday AM.

The only sign of damage we found the next day.

Merlin looking majestic through it all.

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

Sunday with Emma

Yesterday Richard and I took the children to the park, where Emma played in the sprinklers, while Nic sat with us in the shade and talked.

Emma in Union Square Park

Then off to Toys R Us to return a Nerf gun that was faulty, then to MOMA (Museum Of Modern Art) where we watched several video installations by the Belgian artist – Francis Alӱs.  Emma wasn’t interested in the video of him pushing a huge block of melting ice through the streets until it disappears, but she was fascinated with the video of him chasing tornadoes, particularly when he entered the tornado.  Another video she liked was one in which he is driving a VW Bug up a very steep dirt road, but never makes it to the top, instead rolls backwards, before attempting to climb the hill over and over again.  Talk about the trials of Sisyphus…

When we went to a lower floor Emma pointed to a giant collapsed fan and said, “Telephone.”

“Look Em.  It’s a huge fan!”

“Fan,” Emma said, before going to the next sculpture with wheels, “Bicycle,” she said.  Then she turned and pointed to an enormous sculpture of a man holding a steering wheel.  “Bus driver!” she said, jumping up and down.  And on it went.  When she didn’t know what something was or if it didn’t look like any recognizable object she would point out it’s color.  “Red!” She said.  Or, “Green!”

“Hey Em.  Look.”   I pointed to two sculptures that resembled melting metal.

“Blobs,” she said nodding her head before running over to a sculpture of a vaguely female form.  “Mommy,” she said, pointing and smiling at me.

Emma at MOMA

After the museum we made our way to the swimming pool at the Vanderbilt YMCA, where we went swimming.

Prior to our leaving the house that morning, I’d made a list of all the things we planned to do and went over it with Emma.  “Okay so first we’re going to go to Union Square, then the museum, then the pool and then Toys R Us.”  I pointed to each item on the list as she repeated all our activities.  Except when we got to Union Square and saw how hot it already was and how heavy Nic’s Nerf gun was we amended out list.

“I think we better unload this thing,” Richard said gesturing toward Nic who was barely able to lift the bag carrying his broken toy far enough off the ground so that he could carry it.

Once we got to Toys R Us and Nic found a newer, bigger, better and even heavier Nerf gun, Richard turned to me and said, “I guess we’re going to have to take this thing home before we go to the museum.”

Meanwhile the list I’d painstakingly made and gone over with Emma was no longer relevant.  I worried with each change that a meltdown was imminent.  But the meltdown never came.  In fact Emma was great, took each change in stride, repeating the change of plans to me, before cheerfully going along with the next activity.

“Well that was a great day!” Richard said as we headed home.

Everyone agreed.

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