Tag Archives: New York City

An Interview with Emma About Halloween

What follows is an interview I did with Emma regarding her thoughts about Halloween.

Ariane:  What do you like best about Halloween?

Emma:  The excitement of dressing up in costumes with no attention paid for oddities.

Ariane:  There were a great many people out.  What was it like to be among such large crowds of people?

Emma:  Wanting to be a part of the crowd and not necessarily the same.  There is acceptance in that.

Ariane:  Did you like going from house to house and interacting with the people?

Emma:  Yes, I like having one day when I am not penalized by strangers for being me.

Ariane:  What else about Halloween that you like or do not like?

Emma:  I mostly enjoy being with so many, on a night when individuality is celebrated.

Family Photo - Halloween 2014

Family Photo: (from left to right) Ariane, Emma, Richard & N. – Halloween 2014

Heading out while it's still light...

Heading out while it’s still light…

Many others had the same idea...

Many others had the same idea…

Richard terrified small children everywhere.

Richard takes a seat.  It’s hard work being this frightening.

A night when individuality is celebrated.  (Random stranger who was happy to pose with dogs.)

A night when individuality is celebrated. (Random stranger who was happy to pose with dogs.)

The dead rises… and gives out candy to all who ask.

The dead rises… and gives out candy to all who ask.

Heading home...

Heading home…

A Day of Learning

Emma does not go to school, instead the world has become an enormous classroom.  Here are a few snippets from today…

We began the day with our daily Skype call with Dr. C. who begins each call by asking Emma if she has any questions for him. Today she typed, “Inkling of noted capacity of space is to be reviewed?”

Without missing a beat Dr. C. said, “Recall that the inflationary hypothesis predicts that space is expanding faster than the speed of light, thus it has been theorized that if the entire universe is the size of planet Earth, the part of the universe that we can see with telescopes is about the size of a grain of sand.”  Emma replied, “Present state of what we understand, but may be limited by our perceptions.”

“Agreed,” Dr. C said and then added, “This is always the way with scientific advancement.  Every day new experiments are being run that either support or repute theories and hypotheses, thus theories are continually changing.  It may well be that the inflationary hypothesis will be abandoned and some new theory (maybe the Cyclic Universe Theory) will emerge.  That is the way of science, Emma!  It continually changes.”

What followed was a brief discussion about Cyclic Universe Theory and then the conversation returned to Units and Equivalents where Emma was asked to view a powerpoint slide showing two graphs showing weekly wages, which upon closer inspection were the same data, but because of the way they were shown, seemed very different.  Dr. C asked Emma which one she would prefer getting for a weekly allowance and Emma enthusiastically pointed to the one that appeared to be monetarily favorable.  Dr. C then explained why it was not and how this was a good example of how data can be changed, while still being legitimate.  Emma then typed, “Deceptively similar. We both need a raise.”

After much laughter, Dr. C. talked about how important it is to study data to be sure you are not being deceived.  Emma then typed, “Either one is a manipulation.  The facts are easier without ego.”

The lesson ended with a discussion about density and Emma was given a homework question where she will need to calculate the weight of a gold brick.  She has been given the dimensions, an equivalency chart to convert inches, centimeters, kilograms and pounds and the density of gold.

After our Skype call we went to see B.  Emma was asked, “Do you think you are learning more now that you are NOT in school?”

“My mind is expanding as big as a watermelon that feeds an entire school,” Emma typed.

Interestingly, and as a quick aside, earlier in the week we discussed with Dr. C Hubble’s Law and the idea that the universe may be expanding, so I found her choice of words particularly wonderful.

Later B. described a limerick, briefly talked about iambic pentameter (a limerick is typically AABBA) and gave her the “rules” of most limericks.  Limericks are five lines, lines one, two and five rhyme, with lines three and four rhyming with each other, they have a distinctive beat with lines one, two and five being longer than three and four, and they are usually humorous.

B. read the following limerick, the writer is unknown, which is about limericks!

“Writing a Limerick’s absurd,
Line one and line five rhyme in word,
And just as you’ve reckoned
They rhyme with the second;
The fourth line must rhyme with the third.”

B. asked Emma what she thought and this was Emma’s reply:

“Dancing each day is a joy,
It’s better than playing with toys,
If you disagree
Come spend time with me,
It’s fun for both girls and for boys.”

After we returned home Emma and I read the first chapter of George Orwell’s Animal Farm in preparation for Emma’s book club with K. on Friday and went on a field trip to the Museum Of Modern Art.  Prior to leaving on her field trip to the museum, she was shown the current exhibits and asked which looked interesting to her. Emma typed, “wandering through possibilities is best.”

I don’t know about you, but I want a T-shirt that says that.

“Wandering through possibilities is best.” 

"Wandering through possibilities is best." ~  Emma Zurcher-Long

“Wandering through possibilities is best.” ~ Emma Zurcher-Long

Being Home aka When School is No Longer an Option

Last spring we made the decision to pull our daughter from her middle school.  We did not come to this decision easily or without a great deal of thought.  Ultimately we decided we had no other choice.  Neither Richard nor I are “teachers.”  We are both far too impatient.  For the longest time I thought homeschooling meant recreating “school,” but at home.  This thought was both so awful and terrifying to contemplate, and was probably the reason it took me (I can’t speak for Richard) so long to come around to the idea, that having a child at home would be a good thing, and not bad.    

In many ways I wish school was still an option, but it isn’t. Richard and I know this. The conventional route is evidently not in the cards for us and frankly it never has been, but it’s taken me awhile to come to terms with what this means. That feeling of exhilaration and freedom, so many who do not have “school” as a part of their children’s lives talk about, is only now something I’m starting to feel and experience.  So it was with great joy that I read Emma’s thoughts on not going to school.  

Emma wrote, “Bathing for the first day of school is better when your classroom is closer by.”  When asked what she thought about not going to school, she wrote, “It’s invigorating.”  Then she paused and finished with, “I am a lucky gal.”   

When asked for advice on how we can help her learn and pursue her interests, she wrote, “Relax and relax some more.”

Which… yeah.  That’s sound, solid, advice for just about anything one is doing.

Back to school

 

An Erratic Life

Our lives seem to be particularly erratic these days.  We are homeschooling, trying to get some semblance of a routine, but that hasn’t happened yet.  I keep thinking it will, any time now… Each morning I wake up with a plan, fully intending for it to be put into action and assume everything will fall into place.  I’ve thought this since the end of May when we pulled Emma from her school.  At a certain point I may realize my plans will not be realized, at a certain point I may even stop making them, but I’m not there yet.

Meanwhile I’m trying to figure it out.  How is this going to work?  Why hasn’t the ceramics studio, where I’m hoping to get Emma pottery lessons, returned my calls?  What about swimming?  I’ve totally dropped the ball on setting up swimming lessons.  Then I spin off into a reverie about the word Schwimmen, which we’ve recently learned is the German word for swimming and why it is that in German all nouns are capitalized, and the stress mounts.

My latest brilliant idea is that yoga is the answer.  I hate yoga.  An emoticon does not exist for the expression on my face when I think of yoga.  I am old enough to remember when yoga was a thing back in the 70’s. Perhaps this was my first mistake, thinking this latest craze would be similar.  As I have an inexplicable dislike for yoga it made perfect sense that I would go online to see if I could find yoga for the Wii.   Some things are better done in private I reasoned.  The only DVD I didn’t already own was more than fifty dollars.  No, I thought.  This is not the answer.  And then I had to have a serious talk with myself.  This is a pattern for me.  Looking for answers to things I already have the answer to.  Yoga is out, redialing that pottery studio for Emma is in…  Wish me luck.

pottery

Homeschooling, Unschooling…

We are homeschooling, or unschooling or…  I actually don’t know how these terms are defined and haven’t had time to do the research necessary to speak about any of this with any authority, let alone knowledge.  In fact “time” and what that means has kind of blown up in our faces as there never seems to be enough of it.  Richard and I are scrambling to make this work, while making jokes about how many clones we would need to do so, if cloning were an actual thing.  All of this is very new and we have not fallen into a routine yet.  I guess the best description of what we are doing at the moment is – winging it.  We are winging it, though this will change as time goes on, we think.  We hope.  We expect.  What I can say is that Richard asked Emma what part of history she was interested in learning and she chose ancient Egypt and ancient Rome.  This then led to several lessons on the Druids.  Who knows where all of this will lead next!

Meanwhile, Emma and I have embarked on the exciting adventure known as the German language, as per Emma’s request.  We had a particularly hilarious conversation a few weeks ago when Emma first brought up her interest in learning German.  I was somewhat incredulous and kept saying things like “Really?”  and “Are you sure you want to learn German?”  and “What about Spanish or French?”  But no, Emma was not to be swayed, so German it is.  And guess what?  It is SO much FUN!!  We are using a couple of different programs, one is Duolingo, which was recommended by a couple of people.  It’s a free online language program.  Did you know all nouns in German are capitalized?  Why?  Who knows, lots of theories, but there is no one answer as to why, that everyone agrees with.

In addition Emma is working on several writing projects.  One is a chapter idea, in which we will write alternating chapters.  Emma wrote, “How about starting on what you presumed parenting would be before I was born.”  I said, “Can you ask me questions, things you want to know?”  Emma wrote, “Very happy to ask.”  I said, “And what will your chapter be about?”  Emma wrote, “What I presumed the world would be like when I was a baby.”  I cannot wait to hear what she has to say about that!

We continue to make our way through Malala’s autobiography, I am Malala about the Pakistani girl who fought for her right to have the same education as boys and was shot by the Taliban.  This has led to some terrific discussions about advocating for one’s rights, oppression, prejudice, violence, silencing, education, and the lack of.  Recently Emma wrote, “Her life is unlike mine.”  (Referring to Malala.)  “But the oppression is similar to what I have experienced.”

While I continue to go through periods of abject terror at the thought of what we have undertaken, these moments are tempered with the excitement and joy I feel knowing that pulling Emma from school was by far the best thing for her.  She is ecstatic and the marked change in her anxiety and stress levels makes all of us very, very happy.

Emma chose this image for today's post.

Emma chose this image for today’s post.

A Traffic Jam and an Analogy

Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city.  (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center.  You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.)  We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at all.

When we pulled up, Soma was waiting, we were exactly two minutes late(!) so we jumped out of the car and raced in to begin Emma’s session.  Emma wrote, “What happens if traffic never gets moving?”

Pause.

“You are stuck in a rut.  It’s like autism.  When you have the diagnosis you are stuck in stims and cannot proceed where your actions want to be.  It is always clogged like a caged mind driving through traffic.”

This morning I asked Emma if we could talk more about this as I’ve not heard her talk about autism and stims in this way before.  In fact, Emma has referred to stimming as self-care ‘here‘ and ‘here‘ and I wondered if she’d be willing to talk a bit more about this with me.  She wrote that she would.  She wrote, “Circular stimming begins in self-care and can aid focussed mind, but samples hasty stress when consumed by the stim.”

“So what I hear you saying is that the stim begins as a way to self-care, but can also become the cause of stress.  Is that accurate?”  I asked.

“Understand that I cannot always filter all that is going on easily.  My string grounds me.  Not having it can cause horrible stress, but it can also distract me.”

I asked Emma if there was anything that another person can do that would feel supportive and encouraging, but that might also make that struggle easier.

Emma wrote, “Don’t force me to put it away, but instead gently remind me to stay in the task asked.”

“Is it okay to suggest you hold the string in your left hand or wrap it around one hand so that you’re still free to type?”  I asked.

“It is nice to be helped with kind suggestions, not nice to be stripped of any say in what is being done.”

“Okay, I totally get that,” I said.  “With Soma you wrote, “What is wrong with the world?”  Then you answered your own question by writing, “In fact nothing is wrong with the world.  We are the problems.  We are not right.  We see things and create a problem.  I don’t have autism label on my forehead like Soma’s dot.”

(Emma was referring to Soma’s “bindi” the red dot Hindi Indian women often wear.  Soma, being Soma, made a joke and did not take offense.)  Emma then wrote, “But I have to walk around all my life with this label.”

I asked Emma if she’d talk a bit more about this and asked, “Do you feel if you didn’t have a diagnosis, people would treat you differently?”

“People see me, think she is different, forgetting that I have feelings like they do. If people understood what autism really is, it would not matter, but people don’t, and so it makes life much harder.”

“So it isn’t the label or the word “autism” that bothers you as much as what that seems to mean to so many people?”

Emma wrote, “This is the biggest problem and causes mistreatment and misunderstandings.”

“Thank you so much for clarifying all of this Emma.  Do you have anything to say to parents and educators who are trying to understand?”

“Keep your open mind and listen to the people who are Autistic for information about autism,” Emma wrote.

Soma and Emma ~ June 12, 2014

Soma and Emma ~ June 12, 2014

“Rethinking Your Beliefs About Autism”

Emma and I are speaking at the upcoming icare4autism conference  here in New York City, July 2nd.  Over the weekend I asked Emma what she thought the topic of our talk should be.  She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”

I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means.  In fact this is one of those topics I wish I’d known about from the beginning.  It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant.  Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect.  Because she did not look at me or turn her head toward me when I spoke to her, I assumed she wasn’t listening.  Because she said things that I couldn’t understand or were disconnected from my questions, I assumed she didn’t understand the question.  I believed the words she spoke were the words she intended and meant.  It didn’t occur to me that I was wrong.  It didn’t occur to me that she was thinking a great many things, but had no way of communicating all that she knew and thought.

Both Ido Kedar and Naoki Higashida talk about how their bodies do not do as their brain requests.  Tracy Kedar, Ido’s mom, writes in the introduction to Ido’s book, Ido in Autismland, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts.  You want to speak and you know what you want to say, but either you  can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times.  Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting.”  Later Tracy writes, “Since you cannot express your thoughts, only you know that you are intellectually intact.”  And still later Tracy writes, “Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly.  You are bored, frustrated, angry, misunderstood and more than a little hopeless.”

Emma has written about some of this before, but in the next month will be writing about her experience with the “mind/body disconnect” more.  I will be reading her thoughts and insights at the conference and adding my experience of what I once believed.  Emma will then answer questions from the audience time permitting, by writing on her keyboard.

I asked Emma what she wanted to call our presentation.  She wrote, “Let’s call it – Rethinking Your Beliefs About Autism”

And so we are…

Em strikes a pose

Emma Presents At CoNGo With Ari Ne’eman

Tuesday night I received a message from Jess of the blog  – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN.  She asked me if I’d be able to step in if she still felt awful Wednesday morning.  I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans.  So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light.  I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea.  Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?”  An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn.  After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance.  Emma wrote, “I am aware of many things, and so are you.  Acceptance takes more dedication.”  I paused and then turned to Emma and said, “Do you have anything else you’d like to add?”  I held her stencil board and gave her a pencil.  Emma wrote, saying each letter as it was pointed to, “Yes.  Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded.  And because we thought the whole thing was being recorded we didn’t bother taking any still shots either.  So other than a few photographs of Ari, we got nothing.  (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t.  And if I’m right then it was worth every second.

PS  Jess, I’m hoping you’re feeling better.

Ari Ne'eman

Ari Ne’eman

 

 

 

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.

Hoodie

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.

Emma’s Letter

Yesterday Soma (for more about Soma, RPM and the Halo Center please click on this link) spoke with Emma about ethanol, fuel and bio fuel, what happens to plants and animals when their bodies decompose, green house gasses, carbon dioxide, fossil fuels, how all of this can affect the economy, and finally Soma asked, “Suppose you are giving a speech at the UN.  What kind of speech would you give?”

Emma gave me permission to quote the speech she then wrote.

“Dear World,

Heat is important, but the world also needs snow.  We must think about the future and use fossil fuel wisely.

Personally, I like car rides, but I am going to walk more.  Walking is good for the heart.”

After we returned to our hotel, I told Em about her Grandpa who had to use a wheelchair when he could no longer walk.  We talked about other ways of getting around and how public transportation, particularly some of New York City’s older subway stations are inaccessible to those who use wheelchairs.  We discussed “green cities” and what that means.  We went to a website to look at photos of “15 Green Cities” and it turns out Austin, Texas is listed as the 15th.

I am too tired and do not have enough time to write more about our first day, and, as always, I need time to process all that has happened and is continuing to happen.

Every day I am being shown that what I believe it means to “presume competence” does not go nearly far enough.  Every. Single. Day.

S&E

 

“Let Me Tell You…”

Emma gave me permission to tell all of you what she would invent were she an inventor.  *A little background – the quotes from Emma are what she spelled out by pointing to a letter, one letter at a time on a stenciled alphabet board.  No one touches Emma as she does this.  In fact there is no physical contact of any kind during the session, also known as an RPM (Rapid Prompting Method) session.

Emma has been doing RPM daily with me since the end of September.  Within the past two weeks she has begun to answer open-ended questions with me.  However the session I am going to write about was with someone who was trained by Soma Mukhopadhyay (the creator of RPM) and whom she is now seeing a couple of times a week.  This person, who I have not asked permission to print her name and so will refer to as B, has been doing RPM for a while now and as a result is able to move far more quickly into open-ended questions than I am.

In their previous session they had discussed train engines.  At the end of their session B asked Emma to think about what she might invent were she an inventor.  When Emma returned for her next session they began with the question, “What would you think was a really great thing to invent?”

Emma then replied, “Let me tell you that it is not a train engine.”

I have to interject here…   I love how ballsy my daughter is.  I love that she didn’t just answer with one word.  I love how audacious, cocky even her answer was… “Let me tell you…”  Emma spells words out, and I sit watching, literally on the edge of my chair, waiting, wondering what wonderful words will she write?  “Let me tell you…”  YES!  I cannot wait to hear what you have to say!!!!!

Emma continued, “It is more from the future…”

B urged her to tell us more.

“It is a spaceship.”

For all who know my husband this answer has brought a smile to your face.  For those of you who do not, let’s just say he has a particular fascination with spaceships, UFO sightings, etc.  He has logged in many an hour watching YouTube clips of various sightings.   As I sat watching my daughter spelling out these words I kept thinking how much Richard was going to LOVE hearing about this session.  But there’s more…

B encouraged Emma to continue, asking her to tell us more about the spaceship she would invent.

Emma spelled out, “Have you ever seen spaceships in New York?”

Sorry, I have to interject again.  This question… this question is wonderful and defies all that is commonly thought about so many of our kids who cannot verbalize questions like this.  For all those parents who have never had their child ask a question, for all who have bought into this idea of Autistic self involvement, of a lack of interest in others, this thought that our children who are non-speaking or unreliable speakers are “caught” or “lost” in some other world… to all of you, I suggest we rethink these ideas.  My daughter is not the only one writing things like this, she is one of many, many children, teenagers and adults who cannot voice their thoughts, but are writing them.  I have watched her, time and time again, asking questions; this kind of engaged conversing goes against everything we are taught and being told about non-speaking/unreliably speaking autistic people.  

B answered Emma’s question saying that she had not seen a spaceship in New York City.  She said she’d seen a great many different types of transportation in New York City, but never a spaceship, to which Emma then wrote, “You never have to wait to go anywhere.”

B then asked her how you could get a spaceship and Emma wrote, “You buy it on your own or you get a monthly pass.”  (In New York City most of us take advantage of the terrific subway system.  To use the subway you need a “Metrocard” which you can purchase for a single ride, multiple rides or for those who commute daily a monthly card of unlimited rides.)

B observed that as parking in New York City is already limited she wondered where a spaceship would go.  Emma wrote, “No parking needed.  Once they have landed they become invisible.”

B then asked her,  “How do you call for one?”

Emma wrote, “You have a button to press and it arrives right away.”

Let me tell you…

images

Traveling Without A GPS

I’m traveling with Em.  We’re doing a kind of mother/daughter trip together, though not, as Em would like, to a spa where we sit around getting our nails done, (Em has fallen in love with the joys of a good pedicure) go swimming in heated pools that are like massive bath tubs and doing nothing else… that trip will have to wait.

And I made the mistake of opting out of the GPS system for the car I’ve rented, which means every few minutes Emma can be heard saying from the back seat, “Oh no!  You’re going the wrong way!”  And because I have no sense of direction, am driving in a state I’ve never been before, let alone city, she is correct.  We have been here less than 24 hours and have gotten completely lost, despite thorough directions from google maps (which suck, by the way, I’m totally blaming google maps) FOUR times!  This is not an exaggeration.

It seems I cannot drive more than a few miles without taking a wrong turn, end up inexplicably going in the opposite direction from where I meant and wanted to go.  So I’m like one of those annoying drivers who’s leaning forward, peering out the window, both hands nervously gripping the steering wheel and driving so slowly I’ve got a line of cars in back of me, pissed off and trying to get around me. But I won’t pull over because I don’t know where the hell I am and… Yeah.  That’s me in that car you’re honking at.  And that GPS system that I turned down, because really, at an additional 20 bucks a day or whatever it was, who would think that was a good idea?  Um…  it’s looking like a bargain, right about now…

This was not always the case.  When I was in my late teens and all through my twenties I lived and drove all over the place.  I lived in LA for three years, a city where you spend more money on your car than you do on your home.  So yeah, I’ve driven a lot.  But as I have grown older and my eyes are not as they once were, requiring glasses, my sense of direction (not that I ever had one) has gotten worse, not sure how that’s actually possible…  but it has…  so a GPS system, it turns out, is less an “option” and more a necessity.

But last night when we arrived, I was still thinking of the me that I was thirty years ago.  The me that took on New York City traffic without a second thought, the me that spent hours a day navigating Southern California’s freeway system, the me that drove all over the place, every day without hesitation, yeah, that me.

Turns out?

She’s gone.

Image representing Google Maps as depicted in ...

People: Interpreting and Responding

Two days ago Emma told me I could write about people’s reactions to her, though it is more accurate to say this post is about my reactions to what I perceive to be people’s reactions.   I asked Em if I could write about that too and she gave me her permission.  My feelings are not necessarily the same as my daughter’s.  I may perceive someone’s curiosity and even confusion as annoyance or impatience or even outright anger, while Emma remains in the moment, without judgment or adding layers of interpretation to people’s responses to her.  Someone who makes a comment or tries to engage her in conversation, a person she then walks away from or answers with, “Emmaemmaemma!” I may decide is judging her harshly or is drawing conclusions about her that they may not be.  Sometimes I decide my daughter is saddened by the reactions she gets from others, yet when asked, she tells me she liked that person and felt happy meeting them.

So it was, a  few nights ago when a dozen or so people came over for dinner.  I knew only one of them, the rest being complete strangers.  Typically at any gathering, either here or at our home in New York City, we know almost everyone who enters our home.   And they, in turn, have met, or at least know we have two children.  Whatever happens is usually met with smiles and kindness.  People might ask questions, some will actively seek to engage, others do not attempt to, but all are friendly and take whatever happens in stride.  We have wonderful friends, and those who are not kind, are not our friends…  but this group was made up of people I’d never met and so when Emma said she wanted to sit at the dinner table with them, I felt a certain degree of trepidation.

I imagined they were confused by her and it felt awful.  I stood nearby, ready to interpret, ready to intervene, ready to take over, ready to control the situation.  But my daughter does not need me to take over, she’s perfectly capable of interacting with people without my intervention.  At one point she thrust her hand out blocking one woman’s view of her, so that the woman could not see Emma, or more accurately, Emma could not see her and the woman immediately made it into a game of peering over and under Emma’s hand.  Emma smiled and began to laugh.  “Don’t look at me!” she said in delight.  The woman stopped and made a big point of looking away.  Emma giggled.

I went into the kitchen briefly and when I returned, one woman I imagined, looked worried.  Another guest I thought seemed annoyed or maybe nervous.  I am sensitive.  I know this about myself.  I think I can “feel” people’s energy, and often I can, but sometimes I decide I know what others are thinking and feeling and I’m wrong.  I have always been hyper aware of people’s vibes, sensing their emotional state, which has caused me problems when I’ve been wrong, as well as kept me safe, when I’ve been correct.

After everyone left, Emma said to me, “Have another dinner party tomorrow?”

“Did you have a good time, Em?”  I asked.

“Yeah!”

“How did you feel when that woman was looking at you and you held your hand out blocking her view of you?”  I asked.

“Playing don’t look at me game!”  Emma answered, laughing.

“Was that fun?” I said, wanting to make sure she was okay with the interaction that had taken place.

“Yeah!  Another dinner party tomorrow!!”

After Emma went to sleep, I lay awake, feeling troubled.  Emma’s experience of people is not the same as mine.  I am fearful of people, or I tend to be.  My daughter does not share my fears.  I sense people’s intent and often believe what I’m sensing, as though it were fact.  I hear and sense people’s words, often read between the lines, take their words, add my interpretation of them from the way they hold themselves, the tone they use, the way they look and draw conclusions from all these factors.  My daughter does not do what I do.  I’m not sure how she interprets others, but I do know it is different from the way I do.  Both my children interpret the world differently from me.  This is a good thing.

Neither of them are as fearful as I am.  Neither of them shrink in fear when someone is angry as I do.  Neither of them physically pull away when someone raises their voice as I do.  I have a physical response to what I perceive people are thinking and feeling.  I feel slightly nauseous when I think someone is angry, even if they are not, or if they’re angry, but not about anything to do with me, I still feel uneasy.  If someone seems particularly upset, my hands will shake, it’s hard for me to speak.  If I become angry, my face will turn red, my whole body feels hot and I will begin to shake.  If very upset I cannot form coherent sentences.  Sometimes, whether angry or hurt, I feel pain in my chest and it becomes hard to swallow, my breathing becomes shallow and it feels as though there is less oxygen in the room.  All of these things are ways of adapting, I understand this, but I also am relieved when I see both my children not interpreting people and therefore not responding to a perception of people’s emotions as I do.

Performing for guestsPerforming

Friendship – Another Myth Regarding Autism

My friend Ibby is here staying with us for a few days.  It’s a working visit, but that doesn’t take away from the joy we are all experiencing because she is here.  Who says work cannot also be a blast?

Emma and Ibby 

Em and Ib

I’ve spoken of Ibby many times on this blog (here, here, here and here to link a few) because Ib has, more than any single human being, done more to change my views regarding autism and my daughter than any other person.  I know that may sound hyperbolic, but it’s actually not.  It’s true.  Or as Ib would say, “Fact.”  And it is.  Fact.  Another fact is the gratitude I feel toward her.  Just tremendous gratitude for opening my eyes, not just to one thing, but to multiple things.  As an example, here is just one little thing that happened as a direct result of Ib.

Ib gently urged me to watch the documentary Wretches and Jabberers.  When I did not immediately watch it, she reminded me and again encouraged me to rent it.  I think she had to remind me three times, before I actually sat down and watched it.  And because I watched W& J, when I presented at the Autcom Conference last fall I went to hear Harvey, Tracy, Pascal and Larry’s presentation on supported typing and because I went to that presentation I had the idea that maybe, just maybe it might be the thing that could help my daughter communicate more reliably and because I had that idea I approached Pascal and asked if he was ever in New York City and because I asked him that, Pascal began helping us learn to support Em and because we started helping support Em I began to understand what presuming competence really meant and on it goes like the “If You Give a Mouse a Cookie” books, one thing leads to another and another and suddenly you look back and see that this person, this one person has influenced another (me) and the ripple effect is so far-reaching and beyond anything anyone could have imagined.

The Wretches and Jabberers example was just one example of one tiny thing Ib had a hand in.  I could name at least a dozen or more much larger examples, like the conversation (documented ‘here‘) we had about language and my daughter’s specifically and how sometimes she says things that seem completely unrelated to anything that’s going on, but how it is related, even if it’s not related in any way I can identify.  Sometimes it’s a leap-frog kind of association, often there’s an emotional component too, so when she suddenly blurts out, “No not going to see motorcycle bubbles” I now know Em is thinking about visiting her Granma in Colorado or is anticipating an electrical storm or watching the 4th of July fireworks display from the ranch. There’s excitement and maybe some anxiety and even fear and eager anticipation.   I know this now because Ib has helped me understand and has taught me how to “lean into” her words and not try to do a word for word translation.

Ib and I have been working on a book together about Autism, Inclusion and Friendship.  As a result I am thinking a great deal about friendships and relationships in general what they mean and how they develop and how the very definition of friendship is about inclusion and support and accommodation and giving each other slack and cheering each other on and appreciation and gratitude and being there for the other person.  It’s a mutual give and take and it’s reciprocal.  Relationships are basically what make this world and life worth living.  Ironically friendship was the thing I wrote about on this blog’s first entry.  It was what I wanted my daughter to experience, but feared she might not ever have, because I believed what I was being told about autism and that myth surrounding autism and being alone.

Over three years ago, when I started this blog, I wrote, “…hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her..”   Who knew that not only would my definition of what constitutes “communication” completely change, but so would my mistaken ideas about my daughter’s ability to have friendships.  As an added plus Ibby is not only in my life, but in my entire family’s!

So yeah, Ib is really important to me.  I love her dearly; we do all the things friends do when they get together: confide in each other, laugh, hang out without having to talk, hang out and talk and talk and talk, cry, and when we aren’t physically together we stay in touch.  But as with all really close friends, Ib is in my mind and heart regardless of where she is.  I think about her and when we haven’t spoken for a few days we reach out to each other and connect, sometimes briefly if we’re both busy, but she’s always “here” in my heart.

As Ib has said, “Friendship is Fact.”

Vanilla cake with vanilla icing – made by Emma, Nic and me 

Ib's Cake

 

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!

R11zoom

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!