Story About A Teen Girl

This is a story about a teen girl chasing a dream to be a singer, despite being unable to talk…

The first time she heard a voice being used as an instrument, was the day she would mark as euphoric.  How hard able bodied people have to work to make their visions come to life, caused her to doubt whether she could dare to desire such a career for herself.  Speaking was almost impossible though she was given the tools to sing words by hitting letters on a keyboard.  She knew with determination, practice and patience she could, at least, try.  A challenge she embraced and will tackle greedily.

Easy and challenge are not friends, but joy and challenge can be.

Find joy in challenges and life changes.

Emma Singing

Emma Singing

Mirror, Mirror, What do you See?

I have a piece of writing to share.

When your eyes are drawn to a mirror, what do you see?

Is it familiar or unfamiliar?

Do you like what you see?

There may be a struggle with recognition.  Stay with it.

Imagine something beautiful.

Make yourself smile and hold it.

Recite a favorite story or joke.  This can be done in silence or in speaking.

Repeat your name however you would like to.

Do you like what you see?

The End ~ By Emma Zurcher-Long

Mirror, Mirror, What do you See?

Mirror, Mirror, What do you See?

“Let’s Pretend You Are the Autistic One”

(A note on Emma’s post.  Because this is a fictitious dialogue that Emma wrote, for clarity’s sake, I asked her if it was okay to put the Autistic person’s words and thoughts in italics and the non autistic’s words in quotation marks.  She agreed.  My part of the conversation is in parentheses.)

For today’s blog post, let’s pretend you are the Autistic one and I should be the non autistic.

“Oh dear!  Why are you hurting yourself?”

(I asked Emma whether the Autistic person could use spoken language to speak.)

You can’t speak and I will talk for both of us, it will be more authentic that way.  Maybe you talk, but not with the words that best describe what’s in your mind.

“I don’t understand, do you want to go outside?  Why are you biting yourself?  Does that mean you do?”

You are thinking about expectations and how hitting yourself takes away the pain of not being understood and unable to say the words that will help.

“Here!  We will go outside.  It’s a beautiful day.”

I don’t want to go outside.  I want to read a story.

Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind.  Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear.  Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.

Emma's Ceramic Dish of Hope

Ceramic Dish of Hope ~ Made by Emma

Cures, Fear, Freedom and Some Advice ~ By Emma

Freedom, Fear And Questions concerning Autism

Barking in the terrible terror that comes with being something so feared and hated.
Daring tremendous love for those who fear.
Healing tears for those who are in brutish pain.
Freedom from hurtful words about cures for being a part of the human race.

Help me so I can communicate.
Give me an education so I can learn.
Treat me as you want others to treat you.
Cheer me on.
Remind me of all I am capable of and focus on what hinders you, but don’t hurt me because I do not experience this world as you do.

We can learn from each other, but learning requires an open and willing mind.  Too many have given us fear instead of hope.

Which, when, why, who, where – we ask.

We matter.
We are all capable of being kinder, more compassionate, more loving to others and ourselves.

*A word from Ariane – Emma became very upset while writing this and began banging the table with her fists and then bit herself.  When I asked if she was able to continue, she typed, “No.  No more.  No more.” – I asked her if she was okay with me adding this here.  She typed, “yes.”

Emma ~ 2015

Emma ~ 2015

A Case for Merlin ~ By Emma

This is Merlin

This is Merlin

Nothing vanishes without questioning Merlin’s participation in the disappearance.  He never admits to wrong-doing, but instead greets the attention with purrs.  Even dog lovers fall under Merlin’s spell, charming the most biased minds to rethink what they had assumed true of all cats.

Merlin is unusual because he plays fetch and follows his favorite humans around with devotion.  If you don’t like cats it is because you have not yet met our Merlin.

But if you ever lose something, don’t blame Merlin.  He had nothing to do with it.

Merlin approved this post.  🐾

Where's Merlin?

Where’s Merlin?

Merlin among the cookie jars.

Merlin among the cookie jars

Calling All Autistic Teen Girls ~ By Emma

Emma typed this post yesterday and asked that I post it on the blog today.  Her typed words are in italics.   This post began with Emma writing, “How about a teen girl post on the blog where I see if I can find girls that want to participate in a chat?”  (She asked that I begin this post with the above sentence.)

Calling all teen girls.
Are you Autistic?
Are you a female?
Are you an Autistic female in your teens?

If so, I hope that I have your attention.
It is a time full of confusion with many unanswered questions.
You might be fearful, curious, and feeling alone.

Let’s find each other.

Now Mom helps.

My help will come in the form of setting up a private group, probably on Facebook, if one or more teenage Autistic girls show an interest.  This group has to be a place where everyone feels safe to say anything they want without fear of being quoted or spoken of outside the group.  If anyone knows a teenage Autistic girl who might like to be a part of this project, please reach out to Emma either here in the comments or privately through email: emmashopeblog@gmail.com or on Emma’s Hope Book FaceBook Page where you can send a direct message.

Emma posing for today's blog post ~ February 12, 2015

Emma posing for today’s blog post ~ February 2015

“Outside Looking In” ~ By Emma

Outside looking in on a world with a  different reality.

There is room for all.

Benign feelings contradict human thoughts about survival.

We treat others with care and feel the joy that comes with that.  We treat others harshly and then pain is felt by both.

Problems arise when people take pleasure in other’s pain.  Words cause joy, but also can cause pain.

Better to sing and dance!

This is what Emma wrote this morning in answer to my question, “What do you want to blog about this morning?”

We have been studying gene mutation, evolution, Darwin and how species adapt to their environment.  We have also just finished reading Romeo and Juliet.  I see the influence of all of these topics as well as Emma’s own unique and exquisitely compassionate take on this world and life.

Emma's Bowl made in ceramics

Emma’s Bowl made in ceramics with cookie cutters and then painted.

The Impact of Believing in Incapability

Ariane:  What should we start our day with?  German, a blog post, general writing, fiction, poetry or something else?

Emma:  Just start with blog post.

A:  What would you like to post about this morning?

Emma:  How about the topic:  Knowing many things, but having no one believe you are able to understand.

Ariane:  This is a great topic!  Do you want me to say anything or keep quiet so you can continue?

Emma:  I will continue.

For many years this was the title of my life.  It was long hours bloated with mindless screams of nonsensical searing memory words that no one understood the significance of.  The feeling of pleased joy when another believes, and then astounds the non believers by interacting with their knowing, is like beams of brilliant light shouting through the dreary darkness.  Diving heavy waters it cannot be described, but the word coming closest is love, and to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught.  This might help the misunderstood.

Ariane:  Wow, Emma, that’s really beautiful.  What else?

Emma:  You can add commentary now.

Ariane here adding commentary, which is a little like being asked to perform after The Rolling Stones just rocked the house…

I am always struck by Emma’s words.  It is the force with which she writes and the compelling word choices she makes that convey a depth of emotion, an intensity and complexity of feelings, as well as insights that make me stop and reread her words over and over.  This paragraph took about forty-five minutes for her to write, not because she edited or had to go back and rewrite, but because that is how long it took for her finger to locate the correct key one letter at a time.

“Nonsensical searing memory words…”  I so want to know more about this.  Does she mean the often repeated sentences that are about the past, the words I once assumed were simply memories thrusting themselves front and center?  A kind of Möbius strip of thought, like an infinity symbol wrapping around and around itself?  I have learned to reside in the unknowing, the discomfort of being unsure, the scratchy realization that I cannot ever truly know, though I can make guesses and then ask if these are correct.  I no longer assume words spoken are meaningless or simply memories or are scripts that are being blurted out compulsively and without thought.  I’ve written about these bridges before ‘here‘.  Those words and sentences that are full of meaning, but whose meaning is not immediately apparent to me upon first hearing.

“… that no one understood the significance of.”  I will ask her about this later.  She used the past tense and that makes me hopeful that we are not continuing this kind of awful misunderstanding.  “…beams of brilliant light shouting through the dreary darkness.”  Who among us does not want that feeling for those we love?  Is this not what love is?  Connection with another?

“… to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught.  This might help the misunderstood.”

Those who think being silent for an hour or two will give them any real insight into what it is like to not have words readily available, either by writing or speaking, cannot possibly understand.  We must shift our thinking beyond the hour or two, beyond the day, beyond a month, but instead try years.  Years of opening your mouth to speak, but having words tumble forth that are not what you intended, or saying something you intend only to have it misunderstood, or repeating a memory because it conveys so much that is relevant to the NOW only to be asked to discuss more about that particular memory and not what it signifies, it’s deeper meaning.  To say words, to write words only to be told you do not understand metaphor.  To reach out in vain to connect with a world that continually turns its back or mouths that smile with faces flooded with fear, or superiority or judgement or intolerance or disgust.

End of commentary.

Ariane:  What sort of image should we put with this post?

Emma:  How about a photo of the two of us.  Daddy can take it.

Ariane: I was thinking we could title this post: “Knowing Many Things” and the Impact of Disbelief From Others.  What do you think?

Emma:  No.

Ariane:  Okay.  What would you like the title to be?

Emma:  The Impact of Believing in Incapability

February 3, 2015

February 3, 2015

The Joys (and Terror) of Homeschooling

When we began homeschooling I was absolutely terrified.  I didn’t see how I could do it.  I closed my studio.  I set up a space in our home so that I could continue to run my business.  I told myself we would take each day as though it were one small baby step at a time.  I reminded myself when I began to hyperventilate from panic and fear that I just needed to concentrate on today and not the rest of our lives.  When my anxiety felt too difficult to manage I focused on the next moment.  I wrote lists, I purchased an old fashioned day calendar to write out subjects we would cover each day.  And then I sat down with Emma.  I asked her whether she thought homeschooling was a good idea.

Emma typed, “You believe in me and once creating versions of getting the truth, I am able to go far.”

I said, and I’m not exactly proud of my need for reassurance that she understood, but I said it anyway, “You realize it means you will not go back to school, right?”

Emma wrote, “Yes.  Taking my awesome nice teacher named mom what cabaret kind of life awaits me, I can only guess.”  A little later she wrote, “Know that love teaches more than doubt.”

I asked Emma how she wanted to do all of this.

She typed, “make a schedule mapping out lots of topics both written and spoken.”  Then she shocked me by writing, “sometime I want to learn another language, how about german?”

“Wow!  Seriously?” I asked.

“Yes.”

So here we are some eight months in and we are still finding our footing.  Each day is slightly different.  I still rely heavily on that old fashioned calendar where I fill in what we are working on and for how long.  Every morning I ask Emma for her input as to what she wants to learn.  I still, occasionally, feel I’m not doing enough.  I still, though far less frequently, find myself panicking and wondering how we are going to do this.  I still, though rarely, wonder if what we are teaching is enough.  But through out these last eight months, I have never felt so sure of anything we’ve done as this decision to homeschool.

As many of you know I am no stranger to regret.  Homeschooling is not on that list.  In fact, the only regret I have about homeschooling is that we didn’t do this sooner.

We have been blessed with a couple of wonderful family members who volunteer their time via Skype and one non-family member who teaches Emma literacy.  At the moment Emma is ripping through Act 4 of Romeo and Juliet.  Her sessions with K. are a highlight of her week.  K. tirelessly and enthusiastically comes to our home with new ideas of how Emma can make notes on text so that she can later cite parts of the play to back up her answers to questions like:  “At the end of Act 3, Scene 2, Juliet is of two minds about what has happened.  What are some words that demonstrate her split thinking?”

Together K. and Emma are exploring “writing craft” and delving into language, tension, foreshadowing, story arc and character development.  We use Khan Academy, Brain Pop, books, lots and lots of books and the internet to research and learn, as well as Rosetta Stone for German.  I also am using Duolingo to supplement Rosetta Stone for German, but Emma is not yet able to use it as it relies too much on writing.  The beauty of Rosetta Stone is that it relies on pointing to images to match text primarily.  In addition, we have a Graduate Student who comes to work on art and Emma is taking ceramics, swimming/diving, gymnastics and piano and guitar lessons.

We have created a little nook devoted to various materials we use for lessons and while it’s usually in a state of complete disarray, there is some semblance of order, even if only to me and Emma.  The single most essential item other than the keyboard and stand for the iPad in the photograph below is the Timed Timer.  Without it we would be lost.  Emma explained to me that when I forget to put on the timer she is filled with rising panic and anxiety.  She told me that without a visual timer, “time can stand still, while anxiety pushes all out of its way.”  We now own three different sizes of the Timed Timer, though Emma’s preference is the largest one they have, twelve inches, for our home sessions.

A nook of one's own...

A nook of one’s own…

“The Mean Voice” – Facts vs Feelings

“You get to write about thinking feelings are facts,” Emma typed this morning.  Then she smiled at me, got up, and walked away.

Eight months into this whole homeschooling thing and I’m just now starting to figure out how I can work this blog into our busy schedule.  Emma wrote the other day that she would write a blog post once a week or, she thoughtfully added, “suggest topic for you to write about.”  Then last week she wondered if she might ask questions that she hoped readers would want to respond to.  The first of that series with all the wonderfully considerate, insightful and thoughtful comments and answers to her questions from readers, can be read ‘here.’

My goal is to carve out time Tuesday and Thursday to post something on this blog.  Only time will show how well I do with this goal.

But for today, Emma has given me an assignment.  “You get to write about thinking feelings are facts.”  When she typed this sentence I immediately thought of “the mean voice.” This is the voice in my head whose sole purpose seems to be to give a running critique of everything I’m doing and why it’s all wrong.  The Voice is harsh and can be very, very cruel.  It will say things to me that I would never say aloud to another human being, no matter how angry I might be.  The Voice feels real, it says things in a matter-of-fact way that makes me think the words it is saying are true.  When I believe The Voice all joy is deleted.  Any glimmer of hope is snuffed out.  The Voice tells me I suck and whatever I’m doing sucks.

But I’ve come to understand that The Voice is not to be listened to, which is easier thought than done.  It does not tell me the truth, it is mean and it says things that are not based in fact.  I call it “The Voice” but in fact, it is fear.  It is hopelessness.  It is anger.  It is a whole medley of emotions, some of which I cannot even identify or untangle to identify.  The Voice is feelings and it is most certainly not “fact”.

Feelings are not facts.  Feelings are not facts.  This is something someone said to me early on in my addiction recovery.   It was one of those “slogans” that at the time made no sense to me.  Well of course feelings aren’t facts, I remember thinking to myself.  Anyone knows that.   They’re feelings.  But what I didn’t know then and what I still forget now, is that when I’m upset or scared or angry, the conclusions I come to as a result of having those feelings are also not facts.  They are feelings and the two are very, very different.

So for example, if I’m afraid to do something that I really want to do, like write this book that Emma and I are working on together, I feel tremendous fear.   The Voice kicks in and will say things like, “What the hell are you doing?  Why are you even trying to do this?  The last thing the world needs is a book written, even co-written by you.  Who are you to write about your experience with this?  Who do you think you are?  No one wants to read what you think.  You think this will be helpful to someone else?  What kind of narcissistic, self-involved crap is that?  You can’t do this.  You suck.”  If that doesn’t stop me in my tracks The Voice amps it up a notch and gets even more vicious.

People have suggested imagining a volume control dial and mentally visualizing turning the volume down.  Others have suggested saying, Thank you for your thoughts and then doing the thing I’m terrified of doing anyway.  Others have said – just don’t listen to it or don’t believe it.  But none of that has had much impact or made a difference.  Logically I know this voice isn’t real.  It’s in my head.  I know it isn’t some divine, all-knowing voice.  I know it is mean.  I know all these things, but when the emotions come it is like being pulled under and the energy it takes to keep my head above the water, the energy it takes to just breathe is exhausting and sometimes, most of the time, I don’t feel able to fight it.

When I was an active addict The Voice told me to go and eat.  Go ahead it would say.  Oh go on, you deserve it, The Voice would encourage.  You’ve had a tough day, give yourself a treat, eat a dozen doughnuts.  If I fought it, it only got louder and more insistent.  Oh go on, GO ON!  And I would.  I couldn’t refuse.  I felt out of control and helpless.  I felt unable to stop.  Now, almost two decades later, I know to “out” that particular voice.  I know to tell on it.  The Voice doesn’t like that.  And saying to another human being who understands, who can identify, who can say – oh yeah…  wow, I so get that – is often all it takes now to give me that moment of grace so that I can pull away and not do that thing that will hurt me, the thing that it’s telling me to do.

While The Voice is usually no longer the boss of me when it comes to food and compulsive over-eating, it has never completely gone away.  It crops up when I least expect it.  It tells me things about myself that make me feel awful.  It makes me believe it’s telling me THE TRUTH.  I’m fifty four years old and I still find myself believing The Voice, not about food and eating, but about other things, healthy things I want to do or accomplish.  There’s another slogan used in addiction recovery – Progress not perfection.  And I am making progress, but it is very, very slow.  And to be honest, far slower than I’d like.  But then if I gauge myself from where I once was, the progress has been nothing short of miraculous, so maybe the next post will be about – progress, not perfection!  Unless Emma has another idea, that is…

I’m turning Emma’s topic over to all of you – “…write about thinking feelings are facts.”

The Mean Voice

The Mean Voice

Sensory Assaults

My friend Bridget wasn’t feeling great.  She felt off-balance and couldn’t walk and it was making it difficult for her to talk.  And then she told me the carpeting made her dizzy.  I hadn’t noticed the carpeting, but when she said this to me, I realized the pattern of the carpet was like an op-art nightmare, in sharp contrasting hues, the repetitive pattern was eye-catching and I suddenly wondered how I could have blocked it out.  But, you see, I had.  The carpet wasn’t a problem until she mentioned it and then I couldn’t not see it.  In addition, there was a plexiglass barrier that gave the sensation of being in an infinity pool, without any of the relaxation involved.  It was as though the carpeting spilled over the edge and disappeared into an abyss.  It was disconcerting and even frightening.

I held out the crook of my arm, the way a blind man in New York City taught me to do, years ago.  A stranger, he’d asked if I could help him cross a busy intersection.  At the time I was carrying my son in a Kelty pack on my back and had my then infant daughter in a snuggly.  When I offered my hand to the man, he told me it was easier for him if I crooked my arm and he then held that, it was more stable, but also gave him the ability to control his own movement more.  Bridget took my arm and we were able to make our way to the elevators without mishap.

It was like pain, you don’t realize how awful it is until it’s gone, and then you’re filled with indescribable relief that makes you hyper aware and surprised by just how bad the pain had been.  Afterwards you wonder how you managed it.  Realizations are like that.  Once you have them they’re impossible to undo or un-think or un-feel.  This is how it is with autism too.

A few months ago I was waiting for the cashier to ring up my groceries.  Suddenly a load bang sounded.  Without meaning to I jumped and turned toward the sound.  It was another cashier smacking a paper bag open.  She was smiling and the cashier next to her did the same thing.  Other cashiers began to laugh and followed by banging their bags open.  I was furious.  The noise felt intolerable.  I wondered what I might say to make them stop.  I went through various scenarios in my mind, from yelling obscenities, to self-righteous indignation, to calling the manager.  And then they stopped.  The deafening sound that felt like a physical assault ended and I realized I’d been holding my breath.

As I walked home with my groceries I thought about how angry I’d gotten and how my body froze and then I thought about how awful it would be if I was assaulted, bombarded with intolerable sounds all the time or lighting that had a similar effect and suddenly, very suddenly, I understood something I had not understood before.  I understood what people meant when they suggested that sensory issues can affect one’s actions, or as they say when referring to autism – how sensory issues can result in “behaviors”.

Had the banging noise continued in the grocery store I would have said something, and it would not have been kind or thoughtful or restrained.  I would have had “behaviors” as a direct result of that awful noise.  Had someone told me to calm down I would have been even more furious.  My actions would most certainly have been viewed as over reacting or needlessly extreme.

Had I not been present when my friend Bridget told me how awful she felt and that she needed to sit down for a second and then told me why, I would not have noticed the awful carpeting nor would I have understood how the pattern of a carpet could disrupt one’s equilibrium so much so that one might lose the ability to speak.  These are the things I am learning.  These are the things that make the difference between understanding, and maybe even being able to do something helpful and not.

An Innocent Paper Bag...

An Innocent Paper Bag…

Actions Taken and Puberty

“Actions taken that get responses you don’t want.”

This was what Emma typed in response to my question, what should we write about on the blog today?

Emma proposed making one blog entry a week, possibly asking for readers to answer some of her questions, but before we could continue, she had a  few concerns.

“Would thinking about stressful times cause upset?”  she typed.

I said that it might, but we could put a trigger warning above with the topic so that if the topic was something specific, people would be warned and could stop reading.  As I said this to her I marveled at her endless compassion and concern for other people’s feelings.  Then I said I believed that sometimes it can be helpful to know you aren’t alone in feeling and thinking things that you don’t necessarily know others feel and think, at least this has been my experience.

We discussed the experience of going through puberty and how adults will often talk about their children and what they believe they are going through, but not about their own experience of going through puberty.  “Maybe we should ask people to share their memory of puberty and what was the most difficult part about that period of their life?” I suggested.

Emma wrote, “You can ask and please say that if this question causes stress to not answer and next week I will ask a fun question.”

“That is such a thoughtful and kind thing to say, Emma,” I told her.

Before we ask for other people to share their experiences with either of these questions, Emma and I asked Richard to talk about “actions taken that get responses you don’t want.”

Richard said, “I put work out into the world, like my book and I want people to enjoy it, but some people say all kinds of nasty things, or let’s say I wrote a blog post and my intention is to be helpful to Autistic people and advocate for them, but because I’m not Autistic and I am highly opinionated, maybe I write things that are actually offensive to the very people I’ve meant to help.”

I asked Richard if this had really happened to him or if the last part was hypothetical.

“It’s hypothetical, but I certainly am capable of doing something like that.  People can do all kinds of things with good intentions that don’t get great responses.  To me the question is – what if you do things that you think are going to be helpful to yourself and other people and they aren’t and they aren’t appreciated either.”

I told Emma I would write about my experience with both these questions, so beginning with the first – actions taken that get responses you don’t want.

Saying something that is taken in a way I didn’t mean, particularly if it causes upset, anger or comes across as offensive.  There have been times when I’ve said something and not realized it was offensive until much later, but there have been other times when I’ve said something or asked a question and it’s been taken as meaning more than simply information gathering.

Puberty…

One of the things I really love about this question is that it’s one of those topics people don’t often talk about, at least not with any personal specifics unless it’s about someone else (often without that person’s permission) or in small groups.  So here’s the trigger warning – if the topic of puberty causes you stress, stop reading, otherwise, please join in and share a memory or an experience of going through puberty.  What was it like?  What was most challenging?  Please keep this about your own experience.  If you want to remain anonymous, you can always send your comment to the blog email address:  emmashopeblog@gmail.com or you can DM us on Emma’s Hope Book Facebook page.

We asked Richard to start things off: (insert smiley face here)

“It was the late sixties and early seventies and I became obsessed with – when will I have cool looking sideburns? –  I remember doing drawings of sideburns and imagining what my sideburns could look like.  I remember a lot of thinking about sideburns. They were emblematic of becoming a man.”

Okay, so I can’t really ask readers to share if I’m not willing to do the same, so here goes:

One of the more troubling memories I have of puberty was when I began to develop breasts and wanting to have them because most of the girls in my class already did and I was taunted by the boys at my school for not having any breasts.  They would yell, “hey flatsy!” at me when they passed me in the hallway or whisper it to me during recess.

But I also hated that I was developing them.  I had both feelings at once.  There was shame about my body for not looking like the other girls, but also fear and shame that I would.  I remember lying on my stomach at night, thinking this might limit or reduce their growth, only to put small wads of kleenex in my “training” bra to see what I would look like once I had them.

The larger issue, though I don’t think I was aware of it at the time, was the conflict of growing older and being excited by this, yet part of me wanted to stay a kid. And there was terror too.  I was going to say “fear,” but it was more than fear, it was real terror at the idea of looking more adult like and less kid like, coupled with growing into a woman’s body and not liking the attention that elicited, which interestingly enough ties this answer to Emma’s first question about – “actions taken that get responses you don’t want”  and very much encapsulates the essence of all that was problematic and difficult for me about puberty.

We’re turning these questions over to all of you now…

1.  Actions taken that get responses you don’t want

2. Puberty – what was your experience or a memory of that time in your life?

PubertyBoy2

The Horrifying Events that Changed A Young Man’s Life

There’s a young man, his name is Reginald.  Everyone calls him Neli.  He was on the high school wrestling team, wore a key on a chain around his neck, liked to hold three playing cards, loved his hoodie, repeated “television and movie lines ” and carried a “string that he runs through his fingers.” He was described as being shy and he liked going to his local library, which was two miles from his home.  But one day none of that mattered.  One day someone saw Neli sitting on the grass outside the library waiting for it to open.  They called the police, reporting a “suspicious male, wearing a hoodie, possibly in possession of a gun.

Neli is black.

Neli is also Autistic.

All the schools within a few miles of the library “went on lockdown.”  SWAT teams were called in.  That’s at least five schools, though one report said it was eight.  Five schools.  Eight schools.  Lock down.  SWAT team.  All because an anonymous source said they saw someone suspicious sitting outside a library.

Suspicious could mean any number of things.  Maybe it means someone who moves differently, keeps their head down, stares at their feet, doesn’t look you in the eye when you speak to them or doesn’t answer you at all when you ask them a question.  Maybe they rock back and forth as they stand or sit, maybe it means they run a piece of string through their fingers or maybe they twirl it around and around the way my daughter does.

Neli was found, frisked and was unarmed.  This is where the story should have ended.  It is at this point that the situation should have been diffused.  This is where the person who had the ability to calm things down could have, but chose not to.  Maybe a parent, teacher, someone in the community who knew him, who could have vouched for him might have stepped in.  Except the school resource officer who approached Neli and frisked him, did know him or at least had seen him at his high school.  Whatever he knew or didn’t know wasn’t helpful as Neli’s life was about to get much, much worse.  Neli was forced down over the hood of a car and told he was being taken in.

According to one report Neli cried, “I didn’t do anything wrong!” The arresting officer replied, “You don’t have to – Welcome to Stafford County.”  Then he held a gun to Neli’s head and said, “I will blow your head off, nigger.” Neli fought back and in doing so the officer was hurt.

The jury deliberated for three days, found Neli guilty of “assaulting a police officer among other charges” and recommended a sentence of ten and a half years.

Ten and a half years.

The judge disagreed and sentenced Reginald Latson to two years in prison with time served.  Except Reginald had done nothing wrong.  Except that ONE YEAR in prison for seeming “suspicious” to someone is not justice.

“Suspicious” could mean someone who utters lines from a favorite movie or says something that is considered out of context or not relevant to the conversation.  Or maybe suspicious means “not white” and when combined with any of these other things this results in people imagining there’s a weapon as well.  Or maybe not being white is all it takes.  But one thing is certain, being viewed “suspicious” and black and Autistic in today’s world can get you locked up, sentenced by a jury of your peers to ten and a half years, put in solitary confinement for most of your time in prison, and when you’re broken, when you give up the will to live and try to kill yourself, it’s enough reason to put you in a straight jacket, restrain you for hours, hours in a chair, and then slap you with another charge to make sure you never get out of prison.

The Bazelon Center wrote before sentencing last week:

 This counterproductive and inhumane cycle continues with charges Latson is scheduled to face this week stemming from an altercation with a prison guard that occurred when he was being moved to a crisis cell while in psychiatric crisis and suicidal.  There was no serious injury to anyone in this incident other than Latson, who was shot with a Taser and bound for hours in a restraint chair.  Nonetheless, a new felony prosecution was initiated.

As I write this Neli has been sentenced to another six months in prison.  This is beyond unacceptable.  Neli should never have been charged to begin with.  None of this should have happened.  But it did.

A massive number of people have been working hard to gain Neli’s release.  At this moment it could not be easier to do something that could help.  If you only have a moment, sign this petition that my friend Kerima Cevik of the blog Intersected started.

Please.  It literally takes less than 60 seconds to add your signature to this petition.

Grant a pardon to Reginald Cornelius “Neli” Latson

If you have more time, please contact the Governor’s office directly Phone: 804-786-2211; via email by clicking here or on Twitter @GovernorVA and add your voice to thousands of others.

Neli Latson before his arrest

Neli Latson before his arrest

Obsessive Compulsive Urges

Increasingly I am uneasy about writing on this blog unless Emma is an active participant.  In other words, no longer can I sit down and write something the way I once did four or five days a week, even if it is about autism in the most general sense of the word, without Emma giving her views.  After all, this is her neurology (and her blog) and not mine.  I can write about how our different neurologies intersect, even overlap at times, but without her weighing in, I am left feeling so uncomfortable I just can’t do it.

So…

I just read Emma this paragraph and this is what she typed:

“You can continue, giving an example of how you cope with your obsessive-compulsive urges and ask others to share their experiences with this too.”

“Oh,” I said, a little surprised by where this was headed, “I wasn’t thinking about writing about that.”

But you see, this is the thing…  I have another blog, Where Art and Life Meet, and that’s the blog where I can write about whatever I feel like, but this one…  this one bearing my daughter’s name…  this one is hers, not mine.  So every time I write something on Emma’s Hope Book I am a guest and I’m hyper aware of that.  I am here only because Emma has given me permission to be.

So this morning Emma has asked me to write about coping with my “obsessive-compulsive urges” and so I will.

When I think about the things I become obsessive-compulsive about it is less about a particular thing and more about anxiety, worry and stress.  It is the process that occurs in my brain that reminds me of a scratch on a vinyl record causing the needle to skip, playing the same  few notes over and over again until someone comes, lifts the arm with the needle and allows the song to continue.  My mind gets caught in the skip and it can get stuck there with just about anything, a word misspoken, a misunderstanding, an idea of something I did, but wished I’d done differently, or something I’d like to do but haven’t, I can get stuck on a conversation, something that was said to me that hurt my feelings, or something I said that I worry might have hurt another or it might be something I want to do, but have not yet accomplished.

The worst times for my obsessive thinking are in the evening hours or late at night.  There is always anxiety, often stress, combined with worry and as I spiral, it often feels as though I were falling down through blackness, bouncing from one awful thought to the next, unable to grab onto anything to steady or break my fall.  It feels terrifying and there’s an aspect of feeling completely out of control and yet trying desperately to regain control of not just myself, but of all my surroundings.

Over the years I’ve learned some tricks that mitigate how bad things get with varying degrees of success.  The first is to remind myself as I’m falling into the blackness that these are just fears and feelings and not facts.  I can listen to them, but remind myself that they will wear themselves out eventually and I do not need to believe them.  Listening and believing are two separate things.  This sounds much easier than it is.  Sometimes reminding myself of this helps and I’m able to detach enough that I can calm myself but often it does not.

Sometimes the best I can do is identify the obsessive-compulsive thought, label it, accept that I’m having it and sit tight until it passes.  When I was in a particularly dark place many years ago, I would outright lie to myself.  I used to tell myself that for the next five minutes I would not give in to the compulsion, but after the timer went off, I could do whatever it was.  Then the timer would go off and I’d set it for another five minutes, promising myself again the same thing until the urges passed.

Some other things I’ve done that have been intermittently helpful are talking to others who understand and who are also obsessive-compulsive, meditation, writing, reading, taking a walk, exercise, or learning something new, like studying a new language, some sort of mindless activity like knitting or crocheting.

Obsessive thinking, the kind where your mind feels as though it were spinning out of control, where you go from one stressor to the next like a pin ball, ricocheting from one thought to the next then finally calming yourself down only to have your mind latch on to another dreadful thought, is a private kind of hell that if you’ve never experienced this, you cannot really have any idea what it’s like.  It’s a feeling of desperation, horror and self betrayal all rolled up into one.   And the self talk usually makes it worse because the self talk can be so brutal and cruel.

Emma has asked that I invite others to share their experience with “obsessive compulsive urgings” and so I am.  Please keep in mind sharing your experience with obsessive compulsive thinking and what has or hasn’t worked for you is not the same as advice giving.  Advice giving can be annoying, particularly if the person giving the advice takes on an attitude of superiority.  This is not the place for that.

ocdcycle

Friendships

“Both of us writing this post is fine.  We are working together,”  Emma typed just now.

But first a short explanation is needed:  Twice a week Emma has an in person typed “chat” with her friend, Joey.  Yesterday’s chat was a little different because the person Joey usually writes with on Mondays was ill, so I asked Joey if he’d be okay with me holding the keyboard for both him and Emma.  He gave me the go-ahead and so I alternated between them, each taking a turn to type.

During their chat, Emma did what she often does, which is talk out loud.   Often she will talk about things that happened in the past, as in, “Maddy needs to sit down.  Maddy wasn’t nice to Emma” or it can be about the future as in, “chat with Joey,  get groceries, German, Math, Skype call with Granma, see Daddy, have dinner, sleep, wake-up, Skype call with Dr. C….” Emma wrote, “When my brain gets busy it remembers things that have been said to me or what I have heard.”  I wrote about this recently – Scripts – A Communication Bridge

As Emma and Joey typed with each other, Emma said aloud her nickname for Joey – JoeyAllison.  This is a nickname Emma came up with a few months ago when Joey unexpectedly appeared in the same place that someone named Allison had been, the last time we were in the building.

What follows is their chat, which they both agreed to share on this blog (I added punctuation to clarify with Emma’s approval):

J:  I begin this, you go next, not Monday schedule threw me.

(J. has a daily schedule and his and Emma’s “chat” wasn’t listed for Monday.)

E:  How was your thanksgiving?

J:  Good food I like, how about yours?

E:   Thanksgiving in two parts is the best way to celebrate holiday of gratitude.

(Emma kept saying out loud “JoeyAllison”)

J:  Liking nickname not much, but tolerating since hoping you will find another more likable.

E:   Joeyallison is etched into my brain, so hard to overwrite, but I will try.

J:   Knowing you make an effort helps, thanks.

E:  I don’t mean to hurt your feelings.   It’s meant in friendship.

Later Joey’s mom told me Joey’s middle name, which is oddly similar to the name Emma has taken to calling him.  I told Emma what his middle name was and she said it out loud several times, as though she were trying it out and then said, “good.”  Then she typed, “I will call Joey by his first and middle name to his face, if my mouth obeys, because he’s my friend while secretly saying JoeyAllison to myself.”

Friendship