Category Archives: New York City

What Are State Assessments Assessing?

Yesterday, while at Emma’s school, her teacher showed me a sample of the state assessments that Emma is required to take, though there were record numbers of parents this year who protested them by opting out.  These assessments are done twice a year and take an enormous amount of time and energy from all involved.  The page the teacher showed me was about Ronald Reagan.  It was a series of facts that are read and then the student is supposed to choose the correct answer from two choices related to the facts just read.  I decided to use the page as an example of why I so vehemently object to these state required assessments as they are currently laid out.

I read the facts to Emma and then asked her to give me the answers by saying the correct answer out loud.  This is how the test is typically done.  Emma chose the last choice to each question every single time.  I then said, “Okay.  Now let’s do this using your letter board.  I asked the same questions, only this time, offered her the letter board and without any hesitation she got 100% correct.  I then asked her to circle the correct choice and she was able to do that too, which was interesting to see.

We did not go over more of the assessment, but for all those students who are like Emma, these assessments are useless.  They are not telling anyone anything helpful.  In fact they are giving inaccurate data.  If Emma had not been given the opportunity to learn to communicate using a letter board, she would have no way of proving she knows the correct answer.  How many children are just like Emma?  I do not believe for a second she is the only one who cannot say what she knows, but if given appropriate accommodations would be able to.

It is incredibly frustrating to have the state require her to take such assessments, which, as they are currently written, do not accurately assess what she is capable of.  This is my biggest objection with so much that is done when it comes to autism.  Far too often the current conversation is by people who are looking at things, similar to these assessments, and basing their beliefs on the information they are getting from them.  Incorrect information that tells us nothing of what a child is actually capable of.  Assessments, that in fact are assessing nothing.  What is being learned?  What a massive waste of time and money.  We should be doing better.  Our children deserve better than this!

*We are hoping to have the video of Emma’s presentation at CoNGO up on the blog tomorrow!

April 9, 2014

April 9, 2014

Trapeze, Knitting and New York City

“Put it on the blog!” Emma said, happily.  And so I am.

Emma has been going to trapeze school for several years now and loves it.  Absolutely loves it.  Yesterday she told me she’d like to learn how to fly an airplane and learn to knit.  I can’t help her out with learning to fly a plane, though one of her uncles can, BUT I can help her out with knitting as I learned from my mother and during a brief period in my life when I was a fashion designer, I designed…  wait for it… yup, that’s right.  Knitwear.

In fact, I used to be a contributing editor at Elle Magazine where they featured a hand knit with the pattern on the back of the page.  This was long ago, as Emma would say, and for a short time, I had my own page where once a month I designed a hand knit and it was photographed like this… A beige hoodie, which originally I had designed to have a faux fur trim around the edge of the hood, but my boss nixed that idea and so I had to remove the knitted trim.


GreenknitThis was during the 8o’s when magazines like Elle gave editors like me a car and driver.  Remember this is New York City where having a car and driver at your disposal is something people only dream of.  It was at a time when CBGB’s reigned and Studio 54 was a place many of us had danced in.  The meatpacking district was still used to slaughter meat and transvestites and transexuals hung out just west of it on the edges of the Hudson River.   Times Square was considered squalid by most and Nell’s Nightclub was in full swing.

It was a different time in New York City.  Yarn shops flourished.  On the subway, it wasn’t unusual to see people knitting, and I was one of them.

So yes, Emma.  I will teach you to knit.

Diversity Abounds

It's Spring!

Spring at the New York Botanical Gardens!


Orange Epidendrum ~ The Orchid Show at the New York Botanical Gardens


Pink Phaleanopsis


I can’t remember what the name of these orchids are.  Dendrobium, perhaps?  Richard gave me one years ago.  

I love orchids.  When I went to Thailand almost two decades ago, I was surprised to see orchids growing like weeds on the sides of the roads.  Something that is seen as exotic here in New York City was tossed into the backs of pick-up trucks in Bangkok.  Something that is thought difficult to grow, given the right climate flourishes in other parts of the world.

As I looked for an orchid to take home with me, I thought of diversity.  I thought about how some orchids require just the right light, just the right amount of water and soaking and humidity and how others require much less, but once its needs are met, all can and do flourish; just like us!

When Plans Go Awry… Take Photos!

The kids are here…

Water Park

And Richard and I are not…

That’s right.  We are having a staycation!  Woot!  Woot!

Don’t misunderstand me, I think about the kids all the time.  I began to worry when we hadn’t heard from them in 10 hours, but being in New York City for two days to just do whatever we want, when we want, without worrying about anything other than what museum we should go to next or where we should eat dinner, while knowing the kids are having a blast…  Yeah.  It’s pretty fabulous!

We began with a trip to the Metropolitan museum, where we saw the George Bellows show, followed by the Matisse show and then we wandered through various other galleries, and saw this, from the artist, El Anatsui who lives in Nigeria, but was born in Ghana. I love this artist.  Look at how the fabric drapes and folds.  This piece is massive and covers most of an entire museum wall.

El Anatsui

After a few hours we headed back downtown where we roamed the East Village, ate at a terrific little restaurant called The Redhead where the cheese grits are fantastic, as was the buttermilk fried chicken.  Then off we strolled to the IFC Center  (Independent Film Channel) where we saw the Academy Award-Nominated Live Action Short Films.  There are some great ones, but my vote goes to the South African short film, Asad.

Yesterday we slept in and went to MOMA (Museum of Modern Art).  This wonderful sculpture is on 6th Avenue and 54th Street.

The Egg

For those of you unfamiliar with my jewelry, I’m including an image of an 18 Kt gold and Ceylon Sapphire ring I designed and made three years ago.  I think you’ll see why this sculpture speaks to me!


After MOMA we went back to the IFC to catch the Academy Award-Nominated Documentary Short Films and had dinner at another fabulous East Village restaurant, Back Forty.  If you find yourself there, you have to get the  freshly baked Parkerhouse rolls.  Amazing!

At 3:50AM this morning my cell phone rang, which I ignored and then the home phone rang, which can only signal trouble.  It was my security company calling that they were being notified of “unknown” activity at my studio and did I want the police called.  Yes, thank you very much, I would like the police called, I responded groggily and then threw on some clothes, grabbed my keys and grabbed a cab and went over to my studio (which is NOT in Manhattan).  I arrived just in time to see a police car slowly cruise past my studio building without stopping!  I ran upstairs, carrying…

wait for it…

yup, my camera!  Because I am never one to miss an opportunity to photograph something and you never know…

I know.  Not exactly a weapon, but I figured if anything was amiss, I could at least document it.  This was my thinking.  And I’d just like to remind everyone that it was FOUR IN THE MORNING!   Everything was dark and quiet and so after checking all the windows and door, I returned to the city.  But not one to miss an opportunity I hung out the window of the cab and got some crazy shots of the Chrysler Building as we drove over the 59th Street bridge.  The white light is the Chrysler Building.

The Chryslar Building

I was back home by 4:30AM and… wide awake.

But what an adventure!

An Ode To Richard ~ On His Birthday

Richard’s birthday falls on Valentine’s day.  We met on Christmas day at a Christmas party.  I didn’t know many of the people at the party, but parlor games were being played (always a good ice breaker) and Richard, no matter who he was teamed up with, was winning.  I remember seeing him seated on a couch near the window that looked out on to the snow drifts on 8th Avenue.  I remember how intense he was and focused.  He was funny, in a dry, smart kind of way.  He was  one of those people who doesn’t seem to really care about what others think, a bit of a rebel, certainly someone who doesn’t take orders from others.  (Have I mentioned that people say I can be a little “bossy”?  Not that there’s any truth to that mind you.  I just have really good ideas about how things should be done.)  I remember the way he looked at me.  I remember saying to him in front of everyone there, “Are you flirting with me?  I thought you were flirting…”  He grinned at me, with those dimples of his and answered, “Well I was flirting, but I was also asking you a question.”

I can’t remember the question any more.

Right from the beginning ours was not a traditional nor particularly conventional courtship, if you can even call it that.  We went out with groups of friends a few times, always making sure we sat together, always pretty much ignoring everyone else.  We had planned on going to a New Year’s Eve party together, but Richard got the flu, so I went alone.   The next day I received a call from my mother that my father wasn’t well.  I grabbed my wallet, a toothbrush and a pair of underwear, (I’m serious and yes it was a bizarre choice, particularly as I brought nothing else) hailed a cab and caught the first airplane I could get, out west.  Those were the days when you could show up at the airport, without a driver’s license and take a plane where ever you felt like going.  By that night I was at my parent’s house.  Two days later my father died.  Richard and I spent at least an hour every night on the phone.  He held my virtual hand.  He said all the right things, he listened, he talked, I listened.  We talked about death and life and our childhoods and everything in between.  There were lots of tears and emotions.

A week later I returned to New York in love with a man I had spent almost no time with alone.  But I knew the essentials.  I knew he was kind.  I knew he was smart and funny and wise and ambitious and curious and utterly unconventional.  I knew he was a tad quirky.  I knew he had strong opinions, was a bit esoteric, had some weird ideas about aliens and wanted more than anything to see a UFO in his lifetime.  I knew he had a tough childhood and a past that was complicated and I knew we were both in for the ride of a lifetime.  I knew it wasn’t going to necessarily be an easy relationship,  we are both far too feisty, opinionated and sensitive for that, but I knew this was a man who would challenge me and I wanted and needed to be challenged.  That hasn’t changed.

Over the years we have learned to give each other slack, to not pick apart every perceived slight, we have learned to weather our differences, we’ve learned to respect our marriage even when we’re angry with each other and don’t agree.  We’ve learned the art of letting go, not needing to control so much, it’s definitely a work in progress.  We’ve learned a great many things from each other and we keep learning.  We have two beautiful, quirky kids whom we love and adore.  We do not own them.  We do not mistaken our children as extensions of ourselves.  We do not mistaken each other as extensions or expressions of ourselves.  We are a family, a beautifully diverse, vibrant family who respect one another and give each other the space each needs to (hopefully) grow and flourish.  Richard reminds me to “take it down a notch” when I become too fixated on something that is not within my power to change, he encourages me to fight and change the things I can, he is always there for me, supporting me and cheering me on.  He believes in me even when I don’t believe in myself.  He believes in our children with the same dedication and passion.

I can honestly say I love him even more today than when I first fell in love with him on that snowy, wintry Christmas day so long ago now.

Happy Birthday dear Richard!

Richard – then

A young Richard Long

Richard – Now


The Joy Of Communicating Without Words

This morning it was 17 degrees fahrenheit, but with the wind chill it felt as though it were 5 here in Manhattan, this was according to my “The Weather Channel” iPhone app.  Because of the ongoing New York City school bus strike and because my husband is SuperDad minus the voluminous cape and lycra tights, Richard has been taking Emma to school each morning for the past ten days.  But this morning it was my turn to step up to the plate.

7:30AM this morning

Me:  Okay Em.  So here’s the deal.  I’m going to take you to school today, but Daddy told me it’s tough getting a cab, so we may have to walk.

Em:  Take taxi with Mommy to school.

Me:  Well, we’ll try to get a taxi outside our building, but if we can’t get one right away, we’re going to walk.

Em:  No, I don’t want to walk.  Take taxi.  Just you and me.

Me:  Em, we’re going to try to get one, but if we can’t we’re going to walk.

Em:  Nodding her head.  Together.


After trying for several futile minutes to hail a taxi we began to walk to Emma’s school.  The sidewalks were crowded with parents and children.  As Emma and I made our way in the cold, Emma began to make a loud singing like sound.  It wasn’t a song, more like one line of a song, sung loudly.  People turned to look at her.  At first I just continued to walk next to her, my hands tucked into the pockets of my coat for added warmth while Emma repeated the same song-like refrain loudly.  A few people stared.  Em linked her arm through mine and sang again.  I looked over at her, ignoring the curious looks from those we passed and sang back, but in a slightly different pitch.  She smiled and did it again.  I echoed her.  She laughed.  As we continued along toward her school in this way I noticed a few people smiling as they walked by us.  Once at an intersection Emma stopped “singing” and instead winked at me.  I winked back.  When we eventually arrived at her school, Emma turned to me and said, “Bye bye Mommy.  Had so much fun walking to school with Mommy!”

Yup.  Me too.

Emma – 2003


A Celebration With Some Unexpected Surprises

This past weekend we spent celebrating Emma’s birthday.  For the past few months we have been planning Emma’s birthday with her.  Emma was very specific.  She asked that we spend the night in a hotel that had a swimming pool followed by a party at the same place she takes gymnastics with her brother every weekend.  We visited the hotel with Emma before booking it.  The pool was on the roof and when we visited, the saline water was at a lovely 94 degrees.  We booked the place where she wanted her party and sent out invitations.  We called the hotel ahead of time to confirm they had wi-fi and a DVD player as Em wanted to bring her favorite Charlie Brown video.  Saturday afternoon we piled into a taxi, arrived at the hotel, settled into our room, donned our bathing suits and made our way to the roof where it was windy and quite cold, but looked forward to the lovely warm water awaiting us.

Emma jumped into the water without hesitation, with Richard following.  I turned as Richard gasped in surprise.  It was the sound someone makes when the wind’s been knocked out of them.  I stared at him.  “It’s really, really cold!” Richard said in answer to my confused look.


“Uh.  Yeah.  Feel it.”

Tentatively I dipped a hand into the water.  It was not a lovely 94 degrees, it wasn’t even a tolerable 84, in fact, it seemed unlikely that it was anywhere close to being “warm”.  The outside temperature had barely climbed above 35 degrees and the wind was brisk.  Nic took one look at my face and voiced what I was thinking, “There’s no way I’m getting into that water.”  Richard, being the champ that he is, hung in there for another ten minutes before getting out, his lips having turned blue and his teeth chattering, while Emma, being impervious to cold of any kind lasted another half an hour.

It's Cold!

The beauty of Manhattan awash in the afternoon light. Taken from the hotel roof’s pool.


Framed Sky – Taken from the hotel’s roof while Em and Richard swam

Framed Sky

The hotel assured us the pool would be warmer by the following day, so we promised to come back the next morning for a longer swim.  Our evening was lovely, the children had a blast, and the next morning, after a wonderful breakfast we headed back up to the pool.  This time Emma did not immediately jump in, but felt the water with her toe.  It was a little warmer, though not much, but despite its cold temperature we resolved to bite the bullet and swim anyway if Emma chose to jump in.  Eventually she did and was delighted when the rest of us followed her.  It was cold, very, very cold, but it was also beautiful up on that roof, with the sun shining and the gorgeous view of Manhattan spread out before us.  We swam laps and splashed and played and Emma had a wonderful time.  When we finally got out of the water, dried off and put on our fluffy robes, we snuggled together on an enormous wicker chair, Richard called “the egg”.

Nic and I in the “egg”

In the egg

Later that afternoon we went to the gym where we celebrated Emma’s birthday with half a dozen other children whom she’d specifically asked to have invited.

Over the years we have learned to involve Emma in every aspect of planning her birthday, doing what she requests as much as possible.  Despite some unexpected surprises we have gotten better and better at giving her what she wants rather than what we think she might want.  And over the years we get it right more and more.

Em with her string and her new book – Landon Bryce’s “I Love Being My Own Autistic Self!”



Living in the Grey

No, this post has nothing to do with porn, soft, hard or anything in between.  In fact, this post is not about sex at all.   There will not be any numbers or shades or subtle, implied meanings of anything remotely titillating.  For those who were hoping otherwise, best to move along…

However, I do have a confession to make.  I tend toward extreme thinking.  An example, if someone cuts me off while I’m waiting for the subway, grabbing the one remaining, unoccupied seat, forcing me to stand, I can get into some pretty abysmal thinking.  I am likely to assume the day is cursed, as I engage in heinous thinking about the person who “stole” MY seat, to apocalyptic views about the nature of human beings.  I know this about myself.  I know I have a difficult time living in the soft, greyness of life, while rejecting the glaring, yet far more exciting black and white tragedy or ecstasy of my circumstances.

For years I felt mildly victimized by Em’s diagnosis.  I felt no one really understood or could possibly understand and any who suggested otherwise offended me.  Then I found Autistic adults who were not living the tragedy I had assumed was my daughter’s inevitable future.  In fact, these adults were interesting, smart, some spoke, some did not, others spoke on occasion, some communicated through typing, others communicated through typing with a facilitator, some had careers, others didn’t, some were in relationships, others weren’t, some had children, others did not.  Some have become friends, one in particular has become a close friend, someone I seek out, think about, want to spend time with, look forward to talking to and miss when our schedules do not allow us to connect.  In knowing her I’ve been able to dispense with the “victimized” mindset.  She’s helped me enormously, not just in giving me a better, more tempered view of autism and breaking down some of the more harmful stereotypes and beliefs I once held about autism and Autistic people, but in what it means to be human.

I have gone from feeling a low-grade sense of sorrow for my circumstances to feeling fortunate and grateful for my life and family.  I don’t mean that everything is perfection and that we never encounter moments of sadness or unhappiness, I just mean that I no longer pin my dark moods and feelings on “autism”.  In fact, I feel ridiculously fortunate.  I have met more fascinating people in the past year than I ever imagined possible.  I no longer wonder what life would be like had I not had an autistic child.  I am grateful for the life I have.  I am grateful for both my children and I’m grateful for my friendships.  I find I am living more and more often in that comfortable grey area of non-extremes.  (Please feel free to remind me of this post when I write something less “evolved”.)

And that woman on the subway, who for the past four years has shot in front of me to grab the only remaining unoccupied seat on more mornings than I can count?  I wish her well.  I even gave up my seat, so she could sit this morning AND I didn’t feel smug or resentful; I just kept reading my email.  Who knows?  Tomorrow I may even muster up the courage to smile at her.  Because you know what?  Life is just too damn short.  Besides I’m growing fond of the grey.

Christmas Eve Dinner – 2012

“Burden”? I Don’t Think So.

The roller coaster I call “autism” is less actual and more a description of my emotions, expectations and judgments surrounding specific things such as communication differences, internal issues, pain perception, sensory issues and the different ways in which Emma takes in information as opposed to the way my (more often than not) non-autistic brain works.  (My friend, AspieKid calls brains like mine NT-NOS, which I think is a hilarious and fitting acronym.) It is a “roller coaster” of my own design and construct.  A roller coaster being an accurate description of my emotional state, something I’ve grappled with my entire life and certainly well before I ever met my husband and had children.  Suggesting “autism” is the root cause for those pre-existing twists and turns my emotions tend to take or pinning the psychological upheavals I’m experiencing onto “autism” is not only wrong, it’s dishonest.

The truth is, I’ve always been a bit high-strung.  I live in New York City, a city whose inhabitants wear their neuroses proudly.  Neuroses in New York city are treated the way a runny nose is looked upon in the mid-west.  No big deal.  New Yorkers have melt downs at the drop of a hat.  I’ve seen fist fights break out between grown men in the middle of an intersection because of a perceived insult, people routinely scream at each other and cut each other off while driving.  Moms pushing babies and toddlers in Hummer-sized strollers wield them like tanks plowing a path for themselves along clogged sidewalks like Moses parting the Red Sea.  People think nothing of getting into loud arguments with lovers, neighbors, friends and strangers in the middle of the sidewalk, forcing pedestrians to walk around them.  It’s a city of ids and super egos.  It’s a city that is (perhaps) an exaggerated version of what one sees anywhere in the world.  People are capable of some pretty dreadful behavior.  Add a child with a different neurology to that already fragile, high-strung mix and you’re going to get some interesting results.  To then conclude that autism is to blame, defies all logic.  No one would do that.  Yet people blame their bad behavior, their inability to cope, their sadness, depression and general irritability on their autistic child all the time.

Suddenly it’s autism and Autistic people who are a “burden” to society.  Autism isn’t a “burden”.  It’s the negative views of autism, it’s the autism = untold horror, it’s the perception of autism and the lack of understanding and services, the lack of training and programs in our schools so they can help our Autistic children learn in a way that will ensure they flourish.  The “burden” is not our Autistic child on society.  The “burden” is the lack of support and adequate help families need so they can better support their child, giving them the sort of assistance  they need to thrive and flourish, a child who will one day become an Autistic adult and, in an ideal world, an active member of society.  We have to move away from this idea of Autism = burden.  Autism = tragedy.  Autism = _______ fill in the blank with a negative word.  We need to abandon our preconceived notions of what a non-speaking Autistic child cannot do.  We need to open our minds to the idea that our children are capable of far more than we may believe or can fathom.  We need to begin looking at what is good about Autism and the countless ways in which Autistic people can and do contribute to this world.  We need to remove the stigma and negativity and replace it with a more balanced and yes, positive view.

Imagine a world that includes Autistic people, accommodates Autistic people and stops shunning, restraining and abusing them.  A world in which it is not okay to have seclusion rooms and restraints, where a non-speaking person is treated with respect and without prejudice and where it is not assumed that because they do not speak they have nothing to say.  A world where people finally understand the burden isn’t the Autistic person, whether child or adult, it’s the lack of services, the judgments and the scare tactics being used.   Autism is big business and there is no better way to ensure dollars continue to pour in than when we are terrified. Let’s change that.

Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.  Having an Autistic child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.   One can say that about a great many things in this life.  Let’s stop blaming Autism and our Autistic children for the ills of the world and the bad behavior displayed by people.

Emma and her infectious laugh


What Makes You Happy?

Happiness is….

My husband


Our son



A flamingo

Our fabulous kitty

Merlin and the Gator



and this…

the ranch…


7:00 AM in New York City


And this… this one’s for you, Brenda

and this… Angie, love and kisses… (Em took this and it’s pretty blurry, but you get the idea!)


What makes you happy?

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When I climbed the stairs out of the subway this morning and began heading west to my studio, fog completely obscured the Manhattan skyline.  I’m no stranger to fog, whether metaphorical or actual.  In northern California where I grew up, fog was a constant.  Each morning the fog would cover the mountains near our house, but by 11:00AM it would have lifted.  I feel a certain nostalgia for fog.  As I walked the four blocks to my studio this morning I thought about how, when we can’t see something we often assume it isn’t there or what we assume is there, actually isn’t.   Had I not known fog was covering an entire thriving metropolis called Manhattan, I would not have been able to imagine it.  That’s the beauty of fog, it usually lifts and when it does, it often reveals surprising things.

This has been my experience with my daughter and autism.  Autism was, for a great many years, like the fog, obscuring the child within.  I kept trying to lift the fog, thinking that if I could do so, I would “find” my daughter.  Then I began to realize the “fog” was my thinking.  The way I thought about autism was obscuring my daughter.   My daughter has always been there, just like Manhattan is and when the fog lifts I can see her in all her magnificent glory.

Emma – 2004

“Hurricane’s Suck, Have A Croissant”

Processing…  I haven’t.  There are still too many people who are without power, whose homes have been destroyed, too many people who continue to have no heat, no hot water or any water at all, too many displaced people, too many who have lost so much….  How does one process this?

Nic had nightmares last night about a zombie apocalypse where he was the lone survivor.  Emma is perseverating more than usual; her stims have gotten noticeably worse; her scripting more pronounced.  I watched her yesterday as she did her Sunday morning DJ routine, listening to all her favorite songs, singing and dancing, losing herself in the music and felt both grateful for all we have and utterly exhausted.  I slept seven and half hours last night and yet feel as though it were 5.  I am feeling fragile particularly sensitive and emotional, and we were the lucky ones.  We have power, heat, hot water, a home that is undamaged, everything’s back to “normal” and yet it isn’t.  I don’t know what normal means anymore.  Where do we go from here?  How do we process this?

On Friday I went downtown and took photographs.  The lighting wasn’t great, it was impossible to capture the mood or what it felt like to walk along empty streets where the only lights came from headlights on busses, taxis and those who still had enough gas in their cars to get around.  I couldn’t photograph the group of young women weeping in the street or the man looking for his father whom he had not heard from in four days or the old woman painstakingly climbing the stairs of her unlit building, her pug tugging on its leash, urging her upwards into the darkness or the faces of all those people I passed obsessively checking their dead cell phones, trudging north with the hope they might find an available electrical socket that would breathe life into it.  I’m not a skilled enough photographer to be able to capture any of that.  (I’ve provided a couple of links to some professional photographers who were though.)  But I did get a few images that at least document the storm and our resilience…

One of the many Chelsea art galleries whose flooded basement held art work. 

An intrepid New Yorker who found a way to stay open despite the power outage downtown

Powering up on 7th Avenue

The “Doll House” on 8th Avenue

Kindness on 14th Street

Pizza by candle light

Emma wasn’t able to go trick or treating, but she still dressed as a butterfly on October 31st

The Statue of Liberty during the storm

We are capable of so much.

Be grateful.

I am.

A City Divided

Today is the first morning I’ve had the time, the electrical power and the energy to write a post.  It’s with some horror that I read my last post.  Who knew Sandy would cause so much devastation and damage?  Evidently  pretty much everyone, well except us, it turns out…  I don’t think I need to say a whole lot more here, other than we were lucky and are fine.  We had a huge stock of batteries, thanks to a tendency to overstock supplies and having children with battery operated devices, I even found a solar-powered radio/flashlight my brother had sent me a few years ago after the last blackout and a drawer full of candles and flashlights.  My mother periodically called with updates and my brother sent text messages with the latest news.

A good friend who lives above 26th Street (and therefore had power) was kind enough to open her home to many of us without.  It took hours to power up our devices, but at least we weren’t standing in line at one of the many delis and stores north of 25th Street who had brought out power cords allowing as many people as possible to power up.

All is dark, including the traffic lights south of 25th Street

Monday morning as we took the children west to survey the damage in our now dark world, we attempted to cross 8th Avenue, but had to wait as cars raced past taking advantage of the power outage and dark traffic lights, never breaking despite the fact we were with two children.  For those cars on the cross streets waiting, hoping someone would slow down enough to let them through, it was a lesson in patience and a stark reminder of how badly people can behave given the opportunity.

One of many buildings in Chelsea near the West Side Highway

Our building still has water, it’s only now running out, other buildings are not as fortunate.  We also were fortunate enough to have a gas stove, which means we are able to heat water and even made pancakes for Emma one morning.  By the third day, Emma’s stress level had become noticeably worse.  (As had mine.) Perseveration, stimming and echolaic speech had all worsened.   I started looking into hotel rooms for us already on Monday while waiting for our phones to power up at my friend’s home, but couldn’t believe when I saw a “Budget Hotel” in midtown charging over twelve hundred dollars per night for a room.  I probably could have booked something had I thought to (and most hotels were not price gouging), but by Tuesday there were almost no rooms left and by the time we seriously began looking on Wednesday we found only one hotel with a room available, which we booked, only to learn that it had been evacuated because of the crane in Midtown that forced a number of blocks to shut down.

Richard took matters into his own hands and called my cousins who welcomed us into their beautiful home uptown.  We are grateful to have somewhere to go and relatives who were willing to take us in, people who were kind enough to open their doors and had spare bedrooms to accommodate us.  Meanwhile Nic went to his friend’s house in Brooklyn, where he is playing one endless marathon video game of who knows what with his friend.  We miss him, but are relieved to know he’s being taken care of and is happy.

I wrote the following and posted it on my Facebook page last night:  “It’s hard to capture a visual of A Tale of Two Cities: Downtown without power, Uptown life continues. North of 26th Street where there is power, lines of people wait to use an electrical plug to power up their cell phone, below 26th Street there is no power, many buildings are without water now, others will be without water soon. Guys are hawking C & D batteries on the street corners, one guy has a sign saying, “We sell CANDLES” Large flashlights are a hot commodity. And yet… just a few blocks north people are watching the news of devastation on their flat screen TVs. Two worlds divided by electrical haves and have nots.”

To be without electrical power is to literally be without power.  Those who are above 25th Street, a purely arbitrary division are able to listen to the news or not, make phone calls, take showers, fix nice meals for their families, choose to open their homes, help people if they decide to, but those south of 25th do not have these choices.  It is surreal.  Those without power who had the means and the wherewithal to book hotel rooms on Monday did so.  The decision to continue with the New York City marathon this Sunday was a stark example of the massive disconnect that has occurred in this city.  That officials were blithely holding press conferences defending this decision while people are trying desperately to locate family members they haven’t heard from who live in the southern parts of the city is  just one more example of how surreal things have gotten here in New York City.

*I am one of the people who feels it is insulting to carry on with the marathon, exacerbating the traffic jams, reducing the numbers of available hotel rooms, a symbolic thumbing of their noses at all those who have not showered, had something hot to drink or eat, are without heat, water, light or have been evacuated.  I see the people running along the streets, weaving in and out of the traffic grid lock and I can only assume, as they head south, that they will eventually head back north to a hot shower.  Yet another example of the difference a little electricity makes.

*This post was written before we lost wi-fi this morning and at the time the marathon had not been canceled.

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Awaiting the Storm

If you listen to the news, which I haven’t but Richard, in an uncharacteristic display of interest regarding the weather, has been keeping abreast of the latest news by reading updates on the NYTimes online, you already know Hurricane Sandy is heading inland and may or may not hit New York City at some unknown point…  it’s hard to say. Meanwhile, everything is shut. All the stores are closed, all public transportation has screeched to a halt, friends of ours who are in “Zone A” have had the boilers in their building shut off since yesterday evening, some others have been evacuated, and yet, other than the occasional breeze and light sprinkle, there is nothing to suggest anything is amiss.

On Saturday as Nic and I did our weekly grocery shopping run, Nic commented on the long lines. The typical four-hour window given for delivery of one’s groceries had been suspended and other than thinking it strange that so many more people were out getting groceries, it didn’t occur to me to be concerned.  It has to be said, we do not watch the news on television and my reading of the NYTimes online is topic specific.  When Nic asked why so many people were grocery shopping I said something about how it was always like this on Saturdays and then went into a lengthy explanation about typical Monday through Friday work weeks and how it made sense that Saturday was a good day for grocery shopping. By the glazed expression on my eldest child’s face, I’m pretty sure I lost him after the first 30 seconds. Looking back, the incredulous expression on the woman’s face directly behind us now makes sense and I feel a little saddened to realize it was not a look of awe at my brilliant analysis of the shopping habits of fellow New Yorkers.

Last night I explained to Emma that there was a big storm headed our way and because of it, school would be closed and that there might be heavy rain during the night, but that we were all going to be safe.  I was a bit more concerned that the changing air pressure might wake her in the night, causing her pain and upset.  When she woke this morning and came running into our room, I said, “Em, has it started raining yet?”  She said, “Rain, lightning and thunder!”

“Really?” I said, peering out into the darkness.  “I don’t hear any rain.”

“It’s raining.  No school,” Emma said, with the kind of unerring certainty that does not invite argument.   Then she pulled the bed sheets up over her head.

I asked Em if she wanted to go up on the roof to see first hand what the weather was like.  I grabbed my camera and rain gear .  “Oh honey,” Richard said as he watched me zip up my rain jacket, “you’re going to document the storm,” he wiggled his fingers to make quotation marks.  “I love that.”

“It hasn’t hit us yet,” I told him.  “It might.  Later.  You never know.  They’re saying 95 mile per hour winds and 10 foot waves.  Maybe I’ll take the kids to the river later,” I announced.

“I love that you’re going out to record the weather and not hunkering down into fear-bomb-shelter mode,” he looked at me with what I’m pretty sure can only be described as pure, unadulterated, adoration and admiration. (I am convinced I’m reading his look correctly and NOT the way I completely misinterpreted the look of the woman in the grocery store.  Of course, I have been wrong before…)

Em on the roof just now in appropriate, pre-Sandy, attire

The Joys and Terror of Motorcycle Bubbles

When I went to get my Master’s degree in Creative Writing my favorite class was one in which we spent the entire semester dissecting two paragraphs from Virginia Woolf’s A Room Of One’s Own.   We spent two weeks on ONE sentence!  This was bliss as I’d never completely understood the word before.  Pure bliss.  Needless to say, I was the only student in a class of about 25, who felt this way.  Everyone else grumbled and complained, spoke of their excruciating boredom, many even transferred out of the class.  I couldn’t understand their feelings.  What was NOT to like?

I’m a big fan of the highlighter, so it was with some amusement that I read a note from Emma’s teacher last night, “She enjoys highlighting words at school and this will also help to increase her ability to read sight word vocabulary…”  Her teacher had thoughtfully included an enormous neon yellow highlighter in her binder!  Love that.    If I had a photo of a random page in Douglas Biklen’s book – Autism and the Myth of the Person Alone I would insert it here as almost every page has notations and sentences highlighted.  Such as this one from the chapter, Reflections on Language – Lucy Blackman:  “Birthdays were happy, exciting, chaotic, and connectional with food – the ultimate source of pleasure – so excitement was a birthday party.   But excitement, terror and fury are very similar emotions, so I still scream “birthday party” when expectations are more than I can cope with.”

In Aspen, Colorado where we go several times a year, they have fireworks at the foot of Aspen Mountain on the Fourth of July and again on New Year’s Eve.  Emma both looks forward to the beautiful display and is terrified by the sound they make.  She calls the fireworks “motorcycle bubbles” which is such a wonderfully descriptive phrasing of what she is seeing and hearing.  This idea that “excitement, terror and fury are similar emotions” is not something I’d considered before.  While walking the dogs on the ranch road with Emma, who has then (seemingly) randomly said “motorcycle bubbles”, I’m left wondering why she would say this.  Now I question whether her fear of dogs is similar to the terror/excitement she experiences from the fire works display.   She loves sitting in our neighbor’s house protected from the loud booming sounds, while still being able to see the beautiful colors of light raining down on to the mountain and town below.

Could this also be why she links rain to “motorcycle bubbles”?  Is rain equated with an electrical storm or the “raining” of lights during a firework display?  I can, literally, become lost in this kind of thinking.  I find it fascinating and exciting.  Like Virginia Woolf, whose writing I happen to be a fan of, Emma uses such disparate and surprising words to describe things.  I am reminded of the German word for “skyscraper”, the literal translation, I believe, is “cloud scratcher”.  How fantastic is that?  It’s beautifully descriptive, even poetic.

One of my favorite Cloud Scratchers – The Chrysler Building 

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