“Presume Competence” – What Does That Mean Exactly?

When my daughter was first diagnosed at the age of two and a half, presuming competence was not a concept I was ever told about or had heard of.  And even if someone had suggested we do so, I’m not sure I would have fully understood what that meant exactly.  So what does “presume competence” really mean?  And how and why should we carry out a presumption of competence?

In an interview, Douglas Biklen explained:  “Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”

A key component to presuming competence is to become aware of the prejudice that currently exists regarding autism and how these ingrained beliefs harm not just our children, but ALL Autistic people.   Like any prejudice, based on layers and layers of misinformation, misperceptions, and misunderstandings, we must be willing to acknowledge our own “beliefs” before we can begin to deconstruct them.

When my daughter was little with almost no language I could not understand how it was possible for her to learn to read and write if she did not speak first.  I was surprised and confused when I learned how completely wrong I was.  When I read about all the non-speaking Autistic people who had learned to read and write despite being given no formal instruction, it seemed magical to me.  This mind that seemed, from my limited perspective, to not understand so much, actually was taking in far more than I could imagine, let alone believe.  It wasn’t until I was able to see my own limitations caused by the things I had been told about autism and hence, my daughter, that I was able to move beyond that thinking and embrace another way of thinking.  I had to acknowledge my misperceptions and the misinformation I was given, then I had to question everything I thought I knew and was being told.  I had to seek out Autistic people who were kind enough to share their own experiences before I was finally able to dispense with my erroneous ideas and move beyond them.  In case anyone’s missing it, there is a certain irony in my early assumptions regarding Autistic competence.

At the Institute on Communication and Inclusion conference, which we’ve just returned from, and I began writing about in yesterday’s post, Tracy Thresher typed, “… couldn’t let anyone know I could read and I understood what was said to me the training gave me the way to communicate with others.”  On the Wretches and Jabberers website, Tracy wrote, “My communication is paramount to my well-being and is key to my being an active citizen.”  He goes on to say, “I may appear to be a man shrouded by a cloak of incompetence but if you will take the time to listen to my typing you will understand I am intelligent.”

What I have come to understand, is that a presumption of competence is much more than a set of beliefs, it is a way of interacting with another human being who is seen as a true equal and as having the same basic human rights as I have.

A presumption of competence may seem like a leap for many non Autistic people,  it may even feel like a disconnect.  Some may argue that their non-speaking child cannot possibly understand, that they know this beyond any doubt and I must ask, but how can you know this for sure?  We may tell ourselves that our child is too “severe” and we are setting them up for certain failure by presuming competence.  To these people I would suggest the opposite is true.  The only true failure is when we walk away and assume incompetence.

Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.

To presume competence means to assume your child or the other person does and can understand when they are being spoken of and to.

Presume competence means talk to your child or the other person as you would a same age non-Autistic child or person.

Read and have available age appropriate stories and give access and instruction to age appropriate learning material.

Presumptions of competence means treating the other person with respect and as an equal without pity or infantilization.

It does not mean that we will carry expectations that if not met will cause us to admonish, scold or assume the person is being manipulative or just needs to “try harder”.

To presume competence does not mean we assume there is a “neurotypical” person “trapped” or “imprisoned” under an Autistic “shell”.

Presuming competence is not an act of kindness.

Presuming competence is not something we do because we are a “good” person.

We do not get to pat ourselves on the back because we have presumed competence.  If we believe we deserve a pat on the back and/or acknowledgement, then we are not presuming competence, we are more likely being condescending.

One last thought regarding presuming competence…   to presume incompetence is to actively do damage.  Let’s all agree not to do harm to our fellow human beings.

“Autistic People Are…”

*Following on the heels of the tremendously successful “Autistic people should…” flash blog last Saturday, today’s flash blog has bloggers adding their thoughts to “Autistic people are…”

Autistic people are…   

human beings.  

with the same rights as anyone else.  

equal.  

as diverse as those who are not Autistic.  

Autistic people are.  

Welcome to the human race.  

Now let’s start treating them as such.

For some history and the flash blog link, click ‘here‘.

As a direct result of last Saturday’s flash blog and thanks to the hard work by Yes, That Too, Unstrangemind and many other Autistic bloggers, this happened – Google Changes Policy for Autism 

While those policies have not yet gone into effect, it is hopeful news and a wonderful first step.

Embracing Change

When Em turned two, I said, “I’d give a limb to have her ask for something.”

When Em was three, I said, “If only she could tell me what was wrong.”

When Em was four, I said,  “If only she was able to understand.”

When Em was five, I said, “If only she would sleep through the night.”

When Em was six, I said, “If only she would learn to use the bathroom during the night too.”

When Em was seven, I said, “If only I understood what she was thinking.”

When Em was eight, I said, “I just want her to be safe.”

When Em was nine, I said, “I want her to have choices in her life.”

When Em was ten, I said, “I think I’m beginning to understand.”

When Em turned eleven, I said, “Thank you.  Just thank you.”

Things continue to change.  We adjust.  I continue to change and my life gets bigger and fuller.  Em continues to change and her life gets bigger and fuller.  I didn’t fully appreciate or understand this when Em was first diagnosed, but I do now.

Everything changes.  I’m learning to embrace it.

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The Dentist and Tiny Steps

“Take it out!” Emma said.  “Take it out!”

We were at the dentist’s office where she had just had a baby tooth pulled because it was obstructing the adult tooth from descending.

Five years ago when Emma had two cavities that needed to be filled on two baby teeth, we had to take her to the hospital and have her anesthetized as she could not tolerate having an x-ray let alone having a cavity filled.  The two baby teeth were capped and while she was unconscious the dentist applied a sealant to all her teeth as they are unusually porous and susceptible to cavities and plaque.  When she regained consciousness she cried, “Take it out! Take it out!  She then tried to pull the metal caps off her teeth.  I still remember sitting with her at the hospital, horrified as she screamed and cried and pulled at the caps on her two teeth, wondering what we were going to do.  After a few days, when she realized the capped teeth were not going anywhere anytime soon, she grew accustomed to them and stopped trying to pull them off.

Over the years Em has grown used to the dentist and dental visits and allowed him to clean her teeth without protest.  A year ago she sat still long enough to have multiple x-rays taken of her mouth and teeth.  This was a first!  Em was ten years old.  Now Em has four braces on her four front teeth and has a palate expander in place that she tolerates, though doesn’t much like.  (Who would?)  Two days ago she tolerated the dentist giving her a novocaine like numbing agent allowing him to pull her baby tooth.  This was a first and a huge milestone.

“Take it out!” she kept saying.  At first the dentist thought she was eager to have him pull her tooth, but I had a feeling she meant the numbing sensation.  “Do you mean take out the tooth or take away the strange sensation?” I asked.  “Take it out, Mommy.  This,” and she pulled at her upper lip, twisting it with her fingers.  “I know it’s an awful feeling, but it will wear off, Em,” I told her and then asked the dentist how long he thought the numb feeling would last.  The dentist told me it should wear off in about an hour, so I set a timer on my phone and handed it to her.  She held the phone and watched the minutes tick by.  Meanwhile I hoped beyond hope the dentist had given me a correct estimate and wasn’t being optimistic.

After the tooth had been pulled and the bleeding had stopped, he came by to check on her and saw Em with my phone and the timer counting down the seconds and minutes.   He laughed, “Uh oh, you’re going to hold me to it!”  Then he said, “You better give her something hot to drink, that will speed up the process.”

“Good to know,” I said.  “Hey Em, when we get home, I’m going to fix you some hot chai.  It will help that weird feeling go away.”  “Take it out!” Em said.  “Yeah, it’s going to make the numb feeling go away faster.” Em nodded her head and off we went with Em clutching my phone watching the seconds tick by.

By the time we arrived home there were about ten minutes left and Em kept repeating, “Take it out!  It’s okay, it’s okay.  Timer goes off and it’ll be gone!”

I fixed her some hot tea, told her to drink it and when the timer went off the numbness must have abated enough to make her less panicked.  About an hour and a half after the first shot she said she felt fine.

Tiny steps, taken one after the other over time, can and do take us far…

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Dreams, Love, Loss and Gratitude

I had a dream last night that unsettled me.  I dreamt that I was standing with some other people and saw a woman with her young son.  He was small, maybe five years old at most.  I was fascinated because he was holding what looked to be a “string” like Emma has, but much smaller.  It was proportionately the same size as Em’s given how little he was.  I turned away because Em was saying something to me and when I turned back around the mother and her son had walked away.  On the ground was the little boy’s string.  So I picked it up and ran after them.  As I approached the mother I held out the tiny furl of string and said, “I think this is your son’s.  I wouldn’t want him to lose it.”  The mother stared at me and said, “What is that thing?”

I said, “Oh!  I think it’s maybe his string.  My daughter…”  but before I could finish she interrupted me and said, “That isn’t ours.  It’s garbage.”  I felt as though I had been punched in the stomach.  And then she turned away, carrying her son who gazed at me wordlessly over her shoulder.  I stood there watching them walk away from me and felt stunned and confused.  I wondered if maybe I’d somehow misunderstood and that perhaps it wasn’t important to her child.  And then I felt ashamed for having approached them and said anything.  Ashamed that I’d assumed it was important because my daughter’s string is so important to her.  Ashamed too, that what is considered beloved and of value to my daughter is seen as garbage by another.  I stood there feeling these things and then I turned to find my daughter was no where in sight.  I felt that horrible surge of panic and adrenaline as I began going through the various scenarios of where she could be or what might have happened to her.

When I woke up I wanted to cry I felt such unspeakable sadness.  All morning that dream stayed with me like a shadow.  All morning I have felt fragile and on edge.  And then I read my friend Gareeth’s latest blog post.  You can read it ‘here‘.  It is a daughter’s moving and powerful tribute to her mother.  I cried as I read because it is so beautifully written, but also because it is about profound loss as well as gratitude for what wasn’t lost.  Loss of time, loss of relationships, loss of missed opportunities…  and as I read I realized that dream was also about loss and judgement and denial and how we harm those we love.  And now as I sit here in my studio looking out at the bumper to bumper traffic on the 59th Street bridge, the rain pours down.  I can hear drops splattering the top of the air conditioner that juts out of one of my studio windows in irregular plops and pings.  Rain drops stream down the windows obscuring my view and I am surprised that I hear no angry honking given how treacherous the traffic is, just the occasional siren can be heard in the far distance.

I feel so grateful to all those people driving their cars who aren’t honking at each other.  I feel so grateful that though the traffic is at a crawl, people are being patient and it gives me hope.  Let me be patient today with every person I come into contact with.  Let me give myself the same respect and patience.  Let me be aware and kind and respectful to others today.  Let me feel gratitude for all that I have.  Let me feel my feelings and not behave as though my feelings are facts.  But most of all, let me know the difference.

Em’s string – February, 2013

Em's string

 

A Witness to Her Own IEP Meeting

This morning we went to Em’s IEP meeting…  with Emma.  I wrote about this ‘here‘ last week.  It was the first time we’ve done this and while Em chose not to add any goals when asked at several points during the meeting, she did express interest in speaking with me during our typing session together, later.  So I intend to talk with her about what was covered and see what she might like to add or discuss.  Most importantly, she was there to witness and hear the thoughts others have regarding her academic goals for the coming year.

At one point she began parroting every word I said.  It was like being in an echo chamber.  I looked over at her and it reminded me of when I was a kid and my siblings and I would do this to make each other laugh.  I do not believe this was the reason Em was doing this however.   Both Richard and I felt she was trying hard to show that she was listening and an active participant.   A few times when one of us directly asked her  whether she agreed or had anything to add she scripted, “Bertie kitty!  You have to get off the table.”  Or some other equally, (seemingly) unrelated script about my old cat who died five years ago.  I kept reminding myself that Em’s language default is a set of scripts.  The scripts may or may not be related to the conversation, but are most definitely an indication of intent and interest in being part of the conversation.

For almost an hour Em sat in her favorite chair during the meeting.  Not once did she try to get up and go somewhere else.  Not once did she indicate she wanted to leave.  Not once did she say anything to show upset or stress.  I was proud of her.  And I was glad she was there, not because she added any specific goals to the IEP, she did not, but because she was present and witness to a conversation regarding the coming year’s goals for her.   And her presence matters and changes the conversation, even if just slightly, it makes a difference.  As Richard and I continue to move forward in our journey to give our daughter the tools she needs to help us help her, this is an important first step.  I had no expectations going into this meeting regarding her input.  I had no idea what would happen or if she would want to leave.  All I knew was that I gave her the choice to come or to stay with her class and she asked to be present.  So she was and for that I am very grateful.

More will be revealed…

Tears and Love

This past Saturday we took Em to meet and have a session with Soma Mukhopadhyay, who developed RPM ~ Rapid Prompting Method for Autism.   I’ve written about Soma before, ‘here‘ and briefly on a number of other posts.  If you want to read those old posts you can put “Soma” into the search box and everything I’ve written mentioning her will come up.  A word of warning, however, those early posts show a very different mind-set regarding autism and my daughter than the one I now hold.  I find it difficult to read them because I had so completely bought into the Autism = tragedy mode of thinking.  As anyone who follows this blog knows, this is not the view I hold now.  It is good to see that my daughter is not the only one who is making progress!

One of the first things Soma did, (who has never met nor worked with Emma before) was comment to us that Em needs help to slow down.  This is identical to Pascal’s observations.  Em’s default is to script or point to the first thing she sees, whether that is a piece of paper or a key on a computer.  So despite the name of Soma’s program, for Emma this is less a literal “rapid” method and more a sustained level of interaction.  During the entire session Em remained focused and answered each of Soma’s questions appropriately.  There was no physical contact of any kind.  Rather Emma was asked to point to letters on a stencil board or to scraps of paper with different options on them.

Soma began with “I am thinking of a month when the leaves start to fall.”

Em then dutifully spelled “October” on the stencil board and my tears began to flow.  “I’m thinking of the season when the leaves grow,” Soma said.  To which Em pointed to the letters to spell “spring.”  For forty-five minutes Soma covered math, the seasons, an Aesop’s fable, reasoning, science and for forty-five minutes I watched with tears in my eyes as my daughter attended with focus while holding on to her string.  Every now and again Em would verbally respond to Soma’s question and then glanced up at her with a little smile.  By the end of the forty-five minutes Soma asked, “do you have any questions?”

“Will you come live with us?”  Was the only question I could think to ask.  I was kidding of course, but it was the only way I knew to sum up how I felt.  For years now we have been trying to find a curriculum that will help Em learn in an academic setting.  For years we’ve tried, her various schools have tried many different methods, none of which have worked.  Yet here we were watching a program that not only worked, but that I could see the potential and the potential is limitless.

Yesterday I decided to try to combine some of what I saw Soma doing with what Pascal has been helping us learn with supporting her typing by creating resistance to her.  I sat on Em’s right side and brought out our iPad.  I also had Nic’s old globe and we talked about how we live on a planet called Earth. I showed Emma where we live and then where one of her favorite people lives in London, England and how to get to London we would need to fly over the Atlantic Ocean.  Em typed, with me providing resistance, “We live on a planet called Earth.  To visit England we have to fly over the Atlantic Ocean.”

This was the first time I have supported Em’s typing and given her the proper resistance.  I could feel it.  I could feel her reaching for the keys.  I could tell when I needed to provide more resistance, I could feel when her body was tensing and when she was trying to perseverate or trying to script.  This was the first time I have worked with Em that I knew without any doubt that I was not directing her at all.  She went on to type that if she could visit any other planet she would like to visit Mars.  We then ended with her typing her full name, her age and where she lived.  She knows all of this and so much more.

And finally, just finally I know she knows.  I know, she knows, without any doubt.

Tears and love.

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“Autistic People Should…”

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

Goals and IEP Meetings

My goals for my daughter have completely changed since she was first diagnosed with Autism more than nine years ago.  I have been thinking about goals a great deal because her IEP (Individualized Education Plan) meeting is coming up and for those of you familiar with IEP meetings, it’s all about goals, both long-term and short-term.  The parent’s goals, the teacher’s and therapist’s goals, everyone’s goals are discussed and written down.  Except for Emma’s.  What are Emma’s goals for herself?  For those who have children with either spoken or typed language this is an easy enough question to ask.  For those of us whose children do not it gets a bit more complicated.  Still, I plan to ask, even if I do not get an answer, whether verbally or typed, I will ask and I plan to talk to her about her IEP and what that means as well.  I may even type out some of the goals we are thinking about and ask her if she agrees with them.

I have to admit that sometimes when I speak to Emma about things, whether it’s about privacy, our bodies and bodily functions, the power of saying no, the importance of self and self-determination, or something like explaining what is going to happen over the weekend or asking her what her goals are at an IEP meeting, I catch myself wondering if she really understands.  What I have learned, what I continually remind myself is that it’s okay to wonder, it’s okay to feel all those feelings, but it’s not okay to act or behave as though she does not understand.  I have to speak to her as though she does understand, even when I don’t know that she does.  In the end I have to do this, because to believe that she can’t/ won’t/ doesn’t understand and to be wrong is a risk I cannot take.

 

The Tug of The Unknown

Ever since Em was first diagnosed I have looked to others to tell me what was best for her.  I have read countless opinions.  I have read hundreds of articles written by self-appointed Autism experts, educators and therapists.  I have listened to organizations, I have consulted doctors, neurologists and developmental pediatricians.  Emma has had quantitative EEGs, hearing tests, vision tests, colonoscopies, endoscopies, x-rays, and more hospital visits than any child her age should have to endure.  She has been prodded, poked, examined, questioned and discussed.  She has had more “professionals” come and go in her short life than I have in my entire 52 years.

A year ago I began meeting Autistic adults and what they were saying and describing first hand wasn’t what all those experts, doctors, educators and therapists had been telling me.  In fact what Autistics were telling me was often in direct opposition to what all those other people said.  The more I listened to what Autistics said and how they experienced their childhoods and life now as adults, the more I saw how wrong most of the professionals were.  It’s not that any of the Autistic people tried to predict what my daughter would be like as an adult, or that I came away believing I’d just met an older version of my daughter, but I’ve gained a clearer picture of autism and I am not as afraid as I once was.  As a side note, I have yet to meet a single Autistic adult who has assured me my daughter would be just like them, quite the opposite in fact.  Each and every person I’ve personally been in contact with has made a point of saying they are not representative of any Autistic child.

When I went to the Autcom Conference in Maryland last fall I met a great many older Autistic adults.  People who are in their 40’s and 50’s, some had been institutionalized, others lived in group homes, some lived with their aging parents, others lived independently, but all were Autistic and while it was surprising to meet so many (the hidden Autistic adults that our society knows almost nothing about)  it was a relief too because the fear I had and to a lesser degree still have about autism falls away the more time I spend with those who are Autistic.

My fear is about the unknown.  My greatest fears are those I create in my mind.  I have to remind myself of this on an almost daily basis.  I have tremendous fear.  I have always been fearful.  Long before I had children or got married I have lived with fear.  Fear of failure, fear of success, fear of relationships, fear of rejection, fear of abandonment, fear of being hurt, fear of hurting others, fear of saying the wrong thing, fear of life, fear of being.  You name it and I can figure out a way to fear it.  I have mornings when I wake up and feel fear like a second skin shrouding my body and mind.  There are days I cannot shake it.  There are days when the best I can do is get up and just put one foot in front of the other.  There are days when I cannot even acknowledge how scared I am.  A good day is when I keep doing the next thing that needs to get done and not say or do anything hurtful to anyone who crosses my path.  Those are the days when the image of myself is that of being covered in a thick cloak.  I keep my head down, keep to myself and do my best to not cause others pain.

Then there are the days when even that is too challenging a task.  Anger is almost always the result of tremendous, debilitating fear.  This is just one reason why I so vehemently object to the way in which autism is depicted in the general population.  Just about everything that is currently written by non-Autistic people regarding autism is fear based and increases fear.  And where there is fear, anger is not far behind.  Fear and anger cause many to behave in ways they wouldn’t, were they not feeling terrified and/or enraged.  Fight or flight.  I do both, sometimes within minutes of each other.  Neither is particularly helpful.

I know I still have a tendency to look to the “next thing” that will help my daughter.  I know this is what I have a tendency to do.  I am trying to trust myself and her more.  I am trying to remember that I don’t always know what will help and, as it turns out, neither does anyone else, but I can make sensible, informed decisions.  I am trying to accept that no one can predict with absolute knowledge what will occur in the future.  I am trying to parent my children with respect for who they are, what their interests are and not what they may or may not become.  I am doing my best to be present, to enjoy the moments of joy.    When I go off into future, fearful thinking, I try to gently pull myself back to the present without admonishment and judgment, but rather lovingly and with kindness for my own faltering, uneven progress.

Em – 2002

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A Dream ~ Autism: The Documentary

Richard and I finished up our “staycation” by watching the Oscar nominated short documentaries at the IFC Center (Independent Film Channel) yesterday.  As I watched them I thought about the documentary I would most like to see.  It would be about Autism and Autistic people.  It would go back to Lovaas and Hans Aspergers, then Bettelheim, the evolution of what we thought we knew about Autism and those who are autistic and the ways in which we thought to “treat” it.  It would cover the move away from institutionalization to the current, though still negative thinking regarding the neurology we call Autism.  The documentary would have dozens and dozens of Autistic people of all ages, non-speaking, speaking, sometimes speaking, those who have careers, to those who are unable to work to those who work for themselves.   It would look at functioning labels and address why those labels work against everyone, it would cover the various myths surrounding autism and why those myths are ultimately destructive and limiting.  It would be a collaborative effort of Autistic and non-Autistic people.  It would be an example of what we can create if we work together, regardless of our neurology.  That’s the documentary I would like to see made.

Short of making such a documentary myself, I won’t hold my breath, though.  The whole idea of neurodiversity is considered radical and even threatening by many.  I understand that.  I understand that it is not a popular or particularly good way for organizations to raise money, especially those whose main goal is to fund research for treatments and cures.  I understand that change happens slowly.  I understand that any movement involving the rights of a minority moves slowly before it is embraced by more than a radical few.  But I also understand the power of good film making and that it can reach many more than any written piece could…

If you could see a documentary about Autism and Autistic people, what would it cover?

Em – 2003

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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!

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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

*Richard

Emma Knows Best

This past Christmas I bought Em a snow fort.  Em loves bouncy castles and the snow fort looks a bit like a bouncy castle.  It seemed like an excellent idea at the time, except that it was missing a key component – it didn’t bounce.  It’s one of those gifts that looks good when you receive it, but once it’s been constructed it’s not so interesting.  Even I wondered, once we’d blown it up and put it out in the snow, now what?  What exactly does a kid do inside a snow fort?   Em was a trooper and sat inside it for a minute or two before extracting herself.

Em's Snow Fort

“No, it’s not a bouncy castle,” Emma said shaking her head as she wandered back into the house.

I stood there looking at it for a minute before following her.

“It doesn’t bounce,” I told Richard.

“Right.  It is without bounce,” Richard reiterated.

“And it’s not even a castle,” I added.

“It’s an inflated dome,” Richard said.

“It’s basically a piece of colored plastic,” I replied.

“What were you thinking?” Richard grinned at me.

I could interrupt this dialogue by going on at length about how Richard has the single best smile of any human being I’ve ever met, how when he grins these little dimples appear that take my breath away, how I can become so distracted I lose track of time, thought, words… I could do that, but I won’t.

Theatrical pause and winsome smile.  

Now where was I?  Oh yes, thinking… what was I thinking?  Well, the truth is I didn’t think it through.  I was thinking about her love of bouncy castles and how this looked sort of like one.  I remembered over the summer how we’d gone to our local YMCA to play on the bouncy castle they’d set up for a limited time and how the guy setting it up didn’t know how to operate it and finally Emma had to tell him.  At first he didn’t pay attention to her, probably assuming she didn’t know what she was talking about because of her non-fluency with language.

“What’s she trying to tell him?” another mom asked me as we watched from across the room.

“She’s telling him that he needs to tie the other end and that he has the air pump attached to the wrong tube, but he won’t listen to her,” I explained.

“Should we go over?” the mom asked.

“I already did.  I told him to listen to her, but he seems to believe he knows what he’s doing,” I said.  “I’m betting on my daughter.  She is rarely wrong about things like this,” I added.

“I’m betting on your daughter too,” the other mom said.  The guy fumbled some more with the defeated looking, semi-inflated bouncy castle as Emma looked on with an exasperated expression.

Finally he did as Emma instructed with a little help from me and the other mother, and the bouncy castle was, well, bouncy as it was meant to be.  Emma was ecstatic and soon joined by a dozen other kids all screaming and bouncing together.

That’s what I was “thinking”.

Moral to the story ~ A brightly colored inflatable plastic dome is not the same as a brightly colored inflatable plastic bouncy castle.

Feel free to add your own wisdom to this story or add your own story…

Mistakes Will Be Made

Over the weekend something happened.  I did something I regretted.  It was one of those “jokes” that isn’t funny.  One of those things that afterwards you wonder why you ever thought that was even remotely funny, because it wasn’t.  Instead it was hurtful and nobody thought it humorous.  I immediately apologized, but my apology wasn’t enough to make the hurt disappear.  Apologies are like that.  They’re certainly better than nothing, but they don’t erase the regrettable action.  So there I was holding this child who was understandably upset because I did something without thinking or stopping to ask myself “is this a good idea?” “If someone did this to you, would you think it funny?” I felt terrible.  The child felt terrible, but allowed me to tell them how sorry I was.  They allowed me to hold them.  They allowed me to witness their upset and it took everything in me to stop talking, to give them the space to feel their feelings without tramping all over them with words.

“Aw….”  Emma said as she embraced the child.  “_____’s upset,” Emma said, looking at me with concern.  “_____’s sad.  He wants to go to Sydney’s playground.”  Emma was doing her best to make sense of the situation, citing a playground long ago closed.

“No, that’s not it, Em.  I hurt ____’s feelings and….”  I looked over at Richard.  “Well I shouldn’t have done that,” I finished.

“Aw….”  Emma said again, wrapping her arms more tightly around the other child’s torso.  “It’s okay.  Take a deep breath.”

“I’m okay.  Thanks Emma,” the child said.

“Aw…” Em continued.  “Here.  Take a deep breath… It’s okay.”  Em looked over at me and said, “Then time to do yoga!”

It was one of those moments.  A moment where there are lots of feelings, lots of different emotions.  Sorrow and remorse for doing something hurtful to another person.  Proud of my daughter for being so kind.  Concern for the hurt person’s feelings.  It was one of those moments when you know you’re never going to do it all beautifully or elegantly or even well, but that you, like everyone else on this earth does things you wish you hadn’t and you can sit with that and hopefully learn from it so you don’t repeat it.

I watched Em hugging this child.  I watched this child feeling their feelings and I knew the biggest apology I could give was not one of words, but of honoring and respecting their feelings, without trying to undo or change or make light of it.  I know, once I make a mistake, I must not make more mistakes in an attempt to cover up the original one.  Once I make a mistake I have to own it.  I have to acknowledge the other’s feelings and respect them enough to give them space and the time they need to process, while being there if they want or need me to be.

As a friend of mine said –  if you don’t want someone to have bad memories of you, don’t do things to give them any.

Nic reading to Em – January, 2013

Nic & Em