“Let’s Talk About Communication Abilities”

*As always Emma gave me permission to post this.  Emma typed her words by independently pointing to the letters on a bluetooth qwerty keyboard attached to her iPad.

This morning I asked Emma what she wanted to talk about.  She wrote, “How about we talk about communication abilities.”

A:  “Okay, that’s a great idea!”

E:  “Especially for someone like me.”

A:  “Yes, tell me more.”

E:  I am able to communicate really well with words, but people don’t expect me to, so when they see me typing, they eagerly watch, but they don’t listen to what I write as much as they listen to the words tumbling from my mouth.”

A:  “I think that’s such an amazing observation!”

E:  “Know that believing in someone’s ability will be greeted with inward smiles, so you must never give the doubts breathing space.”

We talked about “ability” and the power of believing in both oneself and another versus doubting.

E:  “Many insist on finding proof, but when sitting with someone like me they only see the things I do that confirm what they already believe and turn their backs on all that would prove them wrong.”

A:  “Is there anything or anyone specific you’re referring to?”

E: “It is what I have experienced, sadly.”

I told Emma how sorry I was.  We talked about this more and then I said, “I think your words really do affect many people who are listening and as a result are changing how they see their child.  Even if only a few people listen, it’s worth repeating, don’t you think?

E:  “Some that change their views, teach others well.”

A:  Yes, I think so too.  Many people have reached out to us on Facebook and on the blog to tell us.  It’s always so wonderful when we hear from them.

E:  “Now we must remain patient and doggedly trudge ahead.”

I told Emma, she was leading the way and I would always follow.

E:  “Together we will eagerly tether our ideas, so having happy thoughts will woo anger.”

Ariane and Em ~ May 2014

Ariane and Emma ~ May 2014

Transformations

I began this blog in April, 2010 as a document of what I thought would surely be our finding a cure for my daughter’s autistic neurology.  At the time I did not question that this was a worthy goal and one I should be pursuing.  At the time, all I could see were the things challenging her, making her life more difficult with no upside.  She was, I thought, the victim of a neurology that caused her nothing but pain and suffering.  It was not until I was confronted with the joys, things that I had witnessed right from the beginning of her life, but, after receiving her diagnosis then ignored and dismissed, that I began to appreciate the more complex truth about autism and what that might mean to her.  I could not have imagined that four years later my daughter would be posting her profound insights about life, her neurology and the impact society has on her, not because we found a cure, but because we didn’t.

For those of you who have read this blog from the beginning, or poked around and read a post or two from those early days or those who’ve looked through the archives of the pieces published on Huffington Post, you will see a transformation.  It is not a transformation of my daughter’s neurology as was once my goal, but a transformation of our thinking, and as a result the impact our thinking has had, not just on her self-esteem, but on our ideas about ourselves, individually and as a family.  We had to examine and question our own neurology and the challenges we face as a result, before we were able to fully appreciate hers.

We do not take credit for who she is becoming.  We cannot.  My daughter is strong, stronger and wiser than I have any right to claim influence on.  While it has certainly helped that we no longer fight against her neurology, but instead encourage, support and provide her with the help she needs to flourish, it would be wrong to suggest who she is and is becoming is all due to us.  Had we not found people who believed completely in her, people who saw beneath the words she spoke, the way her body moved, had they not shown us and encouraged us to question our beliefs and set them aside, to look beyond what we thought we were seeing and what that meant, we would still be lost in the horror of what we once thought and were told “autism” meant.

This concept, that of helping an Autistic child flourish to be all they autistically can be, is counter to all that we non autistics are told and urged to believe.  So much of the focus is on making our Autistic children behave and appear less autistic-like.  Appearing non autistic is the emphasis and the fact that this comes at a price, is not often spoken of or even considered among the non autistic population.  Many people see Autistic people, witness their inability to say what they feel and think, and believe there is nothing more to see.  They come to conclusions, having witnessed the person’s movement, their facial expressions or lack of, and believe what they see and what they then conclude is the “truth”.  Assumptions can create all kinds of misunderstandings that hurt a population who do not follow the unspoken rules of a majority.

(Trigger for abuse contained in links)  Misunderstandings that then lead to abuse.  Beliefs, like this and this are expressed and taken by many as fact, regardless of how misinformed, regardless of how shoddy the reporting, which further harm people and children, like my daughter.  The cure I seek now is for our society.  A cure for intolerance, sameness at any cost, and for those who seek to silence those who cannot speak with spoken language, but who have a great deal to say through the words they write, is what I dream of.

One of the many down sides of non autistic neurology is how we struggle mightily to blend in, to fit in at all and any cost.   We strive to be better than, to keep up appearances, to cover our awful feelings of insecurity and discomfort with pretense and by controlling those around us.  Some become obsessed with money and power and yet once they have both, they use it to further separate themselves.  Where and what is the cure for that?

This is the journey I now find myself on.  There are others farther ahead, I am doing my best to follow.  There are many who learned all of this sooner than I did.  There are some who will read this and because they have been on this road longer, will see how far I still have to go, but this is a trek, the best sort of trek, filled with discovery and beauty.  Emma is leading the way now.  I really am just trying my best to keep up, while remaining open to all that I still do not know, but am eager to learn.

 

Emma’s Take on “The Tyger”

The other day Emma chose to read and discuss William Blake’s poem “The Tyger” for one of our two sessions.  A brief aside:  When I was in graduate school, one of my favorite classes  was on Virginia Woolf’s A Room of One’s Own.  As I remember it, we spent a week discussing a single paragraph.  To me, this was bliss.  Are you familiar with Virginia Woolf?  A goddess of women writers.  A writer of imperfect perfection, truth, honesty, despair, joy and suffering, that tumultuous roiling, spilling of words on the page evoking sadness, confusion and ecstasy all at the same time, this was what I felt as I read Virginia Woolf for the first time.

But the other day, instead of pulling out my old copy of Virginia Woolf’s A Room of One’s Own, I thought of poetry and grappled with which poet and which poem?  Should we read Yeats, Wordsworth, Baudelaire or Keats?  But then, for some reason I decided on William Blake’s The Tyger:

“Tyger Tyger, burning bright,
In the forest of the night;
What immortal hand or eye,
Could frame thy fearful symmetry?”

After we’d read the entire poem to its end I asked Emma what she thought.  Emma wrote, “Beautiful illustration of torn ideas.  Rabid wondering regarding innocence and the result of omnipotence.”

Wow.

Seriously.

Wow.

This was her response after reading it through one time.  No discussion.  Nothing from me about meaning or interpretation.  Nothing.  This was Emma’s take away, having been given nothing else.

I then asked her what role if any evil played in the poem.  Emma wrote, “I am thinking evil is understood as being the tiger.”

“I agree,” I said, “What do you think about using the tiger to describe evil?”

Emma wrote, “The worst evil is the kind that is camouflaged as something else…  like an innocent lamb.”

The second to last stanza is:

“When the stars threw down their spears
And water’d heaven with their tears:
Did he smile his work to see?
Did he who made the Lamb make thee?”

Emma then wrote, “… maybe god understands what it’s like to be misunderstood.”

Emma ~ May 2014

Emma ~ May 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

A Documentary, Two Blogs and A YouTube Video

The following is a trailer for Spectrum:  A Documentary about Autism and Sensory Perception.  This is the documentary I cannot wait to see when it’s finished!  It features Nick Walker, Martial Artist, writer of the single best description I’ve ever read answering the question  “What is Autism?” and all around amazing guy and Judy Endow, a terrific writer, speaker, talented painter and sculptor and friend.  The third person featured is Tito Mukhopadhyay, eloquent poet, writer and son to the woman I am filled with gratitude for on a daily basis, Soma Mukhopadhyay, who taught me how to communicate with my daughter.

 

This is the first of two blogs you must know about, if you don’t already.  How to Talk to a Woman Whose Child is Dead the most recent post on Unstrange Mind.  It is so beautifully written by the multi-talented Sparrow Rose Jones, who also sells her fabulous art work in the form of t-shirts, stickers, hoodies.  Click this link Red Bubble to see and purchase Sparrow’s wonderful art work.

The second blog, We Are Like Your Child, is one I’ve been following since it was created.  It’s a group blog with a variety of people, mostly Autistic, who write about a wide range of topics.  A Checklist For Identifying Sources of Aggression is a great bullet point checklist everyone should read and Meltdown, Night Blooming Flowers: Sudden Skill Acquisition and Extreme Context Dependence,  Teaching Us to be Silent, and Please Don’t Rush Me are other examples of the kinds of posts you’ll find.

And finally I’m going to end by sharing again a video of the presentation Emma and I gave at CoNGO affiliated with the UN a month ago on World Autism Awareness Day, now captioned thanks to the beautiful and talented, Savannah Nicole Logsdon-Breakstone.  Thank you again Savannah!

 

And Then Suddenly Life Changes

Life has, quite suddenly, taken a dramatic turn.  Over the weekend I finally came to the decision that I cannot keep my business AND finish this book I’m writing AND work with Emma AND have the time to study this method of helping her, so that I can help others help her.  This feels like a good decision, the right decision, one I’ve been struggling with since last fall, but finally feel ready to take the actions to make this happen. So this morning as I looked around my studio, wondering how I was going to sort through everything and begin the process of dismantling a business and a working studio, I received a call from Emma’s school.  They are putting on a show next week and there have been some issues that required my presence.  As I’ve been going to her school every Tuesday afternoon in an attempt to teach some of the staff how to support her so she can write with them too, I left a little earlier than usual.

After school we met with the principal who asked Emma what she did for mother’s day, Emma wrote, “Mom helped me talk to my brother.”

“Oh!  What did you talk about,” the principal asked.

“We talked about whether Truman should have dropped the bomb on Hiroshima and Nagasaki,” Emma wrote.  Then she stood up and ran across the room, whipping her arms around like windmills before settling back in her chair.

It was decided that Emma needs to be in a classroom where she is being taught the same curriculum as her same age non autistic peers.  Except that she is not yet able to write with anyone at her school the way she can with me, so I volunteered to come in until someone can be trained.  It makes perfect sense.  But as Emma and I left her school yesterday, I thought to myself – what did I just agree to? It was one of those moments when the full weight of what you’ve committed to hits you and you think – am I going to be able to do this?  Really?  Can I do this?

Well, I guess we’ll see.  And for the next ten days I will get an interesting view into how her school does things.  And here’s the other thing…   There is nothing I could do that comes even close to being as important as finding a way for my daughter to communicate in a way that gives her greater access to this “awkward world” as she wrote the other day.  No book I might write, no piece of jewelry I might design, nothing comes close.

My life is suddenly no longer what it was.  I am nervous about going to her school with her and essentially being her one on one aide, but I am also really curious to see how it goes and I’m excited to see her in a class where, I’m hoping, she will be challenged.

Before we left school yesterday, the principal asked Emma whether she preferred being referred to as a young lady with autism or an Autistic young lady, Emma wrote, “I am an Autistic girl and proud of it.”

The principal smiled and asked, “Why do you prefer being called Autistic?”

“Because autism is part of me and can’t be removed,” Emma wrote.

“That makes sense,” her principal said.

I told the principal and assistant principal how fortunate we are that I have a number of friends who are Autistic, one of whom is like a sister to me.  And then Emma wrote, “They are my Autistic family.”

How lucky are we?

The journey continues…

Emma and Me

Emma and Me

Education

Yesterday I wrote a post, Your Child’s Been Diagnosed.  Now What?  There are so many things to add.  But something I wondered often during those early years was  – what good is a diagnosis if the “interventions” the professionals suggest and say will help, do not?  Now this is not everyone’s story, but it is ours.  All the recommended “interventions” did little, if anything, to actually help her.  In fact, I would argue that some of the interventions we agreed to, actually harmed her self-esteem.  And the general rhetoric, disguised as factual information, surrounding autism, encouraged her to feel damaged and at fault for the suffering of others.  No child should feel they are the cause of other’s pain and suffering.  And yet, so many do.

Once we began looking for schools that might be a good fit, we were even more horrified.  The choices were not – which one is best? – but became – which one will not harm her?  This shouldn’t be a parent’s guiding question when looking at schools, but for us, it was.  Will the staff be kind to her?  Will they be patient?  Questions like – will she learn?  Will she be taught science, math, english, social studies?  Those questions quickly gave way to – will she be harmed?  Are cameras monitoring what goes on in the classrooms and hallways?   Do they use isolation rooms?  Do they allow teachers to use restraints?  The best case scenario became less about education and more about physical safety and finding a place that did not harm or try to force compliance.

Academics were stripped down as it was “shown” that she could not understand basic concepts.  Because she could not read aloud, she was given picture books.  Because she could not answer the questions asked, the questions were simplified and simplified more and more and more until it was concluded she didn’t understand.  Because it was determined she could not understand a simple story about a boy and his dog going on a trip to visit his Grandmother, she was given less “complex” stories.  She was given “sight” words that were repeated for months and months, even years.  Billy Goat’s Gruff became the center piece for a curriculum that continued for three years, despite our disbelief and protests.  “Oh but we examine all the various characters in the story,” we were assured.  “THREE YEARS??” we responded.  “For three years?”  “Yes,” we were told with pitying looks and the hubris and bravado I’ve come to recognize from those who are convinced they “know” and understand “autism” and therefore my daughter.

Some of the worst offenders are those who have dedicated their lives to autism.  Those who are so sure they know, and as a result are no longer curious or interested in learning more.  Those are the people who are asked to give presentations at Autism Conferences, they are the ones who write books, that parents, not knowing any better, buy.  They are the ones we listen to and slowly as their voices are the loudest and most plentiful, we begin to doubt our instincts, we begin to soften our protests, we begin, slowly, slowly over time, to believe them.  Our ideas about our child are whittled away.  Our instincts are pushed aside to allow for those who know better, who have been doing this for “twenty years,” who have worked with “this population” and who, from having spent decades among children just like mine, know things I cannot possibly grasp or understand.  (This, by no means, describes everyone, but it does accurately describe a great many, and sadly, often those who were in a position with the most power.)

We parents are told to see our children for what they are: Intellectually impaired, socially inept, incapable, lacking and unable to understand the most basic concepts.  My child, as a result was shuttled off to learn how to tie her shoe laces and wash her face and hands.  While life skills are certainly important they should not take the place of academics.  So many of us are consoled with the idea that at least our child will be able to dress themselves, or not…  in which case we envy those parents who have children who can.  Our focus turns from philosophy, an exchange of ideas, history, english, poetry, literature, science, social studies, math and geography, to making sure our child can brush their teeth.  Until one is accomplished, it is thought, the other cannot be introduced.  A child who cannot dress themselves, surely cannot be introduced to Kant or Socrates or a poem by Yeats.

“Hey Emma, I’m curious, how is it that you know about WWII and Nazi Germany?”

“I hear you, Nic, and Daddy discussing,” Emma wrote over the weekend.

“Do you think it was right for Harry Truman to drop the bomb on Hiroshima?” my son asked.

“I have to learn more to say one way or the other,” Emma responded.

“Do you want to hear some arguments for and against the bombing of Nagasaki and Hiroshima?” N. asked.

“Yes, I can better understand using the bomb if you tell me more,” Emma wrote.

There is so much more to say…

Emma struck this pose while waiting for the school bus - May, 2014

Emma struck this pose while waiting for the school bus – May, 2014

Your Child’s Been Diagnosed. Now What?

I always think I’ve written something already about any given topic only to realize there is more to add.  So it was the other day when asked about advice for a parent whose child was just diagnosed with autism.  This is a question that comes up often and always when asked I hesitate and here’s why.  For every child that might respond to various “interventions” the way my daughter did, there will be countless others who will not.  The therapy may be worse or better.  The child may have different sensory issues, they may be voracious readers, hyperlexic or they may not be able to see the printed word because of visual issues, the letters may swim on the page until a different background is found or some other tweak is done, which allows everything to stay still.

There may be auditory issues that my daughter does not share, tactile, physical issues and the list goes on.  So what to do?  How does a parent wade through all the opinions?  How do you find a way to quell your fear, respect your child, ignore that list of all that’s wrong and find the things that will help your child flourish?

For me it boils down to two essentials.  The first is to presume my child competent.  I’ve written about this concept a great deal, but here are a few posts which talk about what that means – ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  Presuming competence is very much a work in progress.  What I once presumed as “competent” my daughter has shown me didn’t go nearly far enough.  We do the best we can with the information we have.  But anything intended to “help” my daughter, anyone who is going to be spending time with her, must understand the concept and be committed to putting it into action.  This includes, speaking to her and not about her in her presence.  It means, even if the child shows no sign of understanding, even if the child has no spoken language and has never written a single word, we assume they can understand more than their bodies and gestures and utterances indicate.

Presuming competence has evolved for me and is helped by keeping my fear, judgment and assumptions checked at the door.  I cannot presume my daughter capable if I am simultaneously engaged in a running list of all she’s doing wrong.  I cannot practice a presumption of competence if every interaction I have with her is really an ongoing test where I’m insisting she prove herself to me.  Presuming competence is a life long practice and it is has far-reaching implications for not just my daughter, but all human beings I come into contact with.

Presuming competence is key, without doing this, everything else I do, no matter how great my intentions, will fall flat.  I have to believe in my kid.  It means that I speak to my child the same way I would speak to any child their age.  It means I approach my child believing in their ability to learn.  It means I believe they can and will learn.  It means they will communicate, I just have to find the best way to support them so that they can and it may not be with spoken language.  It means any therapy, no matter how popular, must be based in presuming my child competent, respecting my child’s process and treating them with the same respect I would insist on for anyone coming into contact with my non autistic child.  It means I have to do the inner work regarding what I believe, notions of should and shouldn’t, entitlement, prejudices, and whatever ideas I may have about my child and who they should be.  It means I approach my child with love, consideration, respect and curiosity.

I have come to believe that services, those services that everyone talks about and that are centered on our children, should include services for parents.  Early intervention for parents is crucial and much needed.  We parents are often in greater need of help and support than our children.  Good quality respite care, therapy for us, the parents, designed to help us cope and sort through our messy emotions so that we are in a better position to be there for our children.  I needed support from parents who’ve traveled the path I now found myself on.  No parent should ever feel the kind of fear I once felt.  Which means we have to change the current conversation surrounding autism if we are going to help our children.  No one is helped by having their every flaw (which is completely subjective, by the way,) scrutinized, both publicly and privately.  There are ways to get support and the help we and our kids need without demonizing our children and talking about them in ways we would never allow people to speak about our non autistic children.

Which brings me to the second essential thing – Autistic people.  It is imperative that all parents be given a list of blogs written by Autistic people who are describing their experience of the world.  This has to be essential reading while we figure out a way to put into place advisory programs made up of Autistic adults who are able to help parents understand their children.  These must be paid positions just as all other people involved with early intervention are paid.

We need mentorship programs of Autistic people mentoring our kids AND mentorship programs where our Autistic kids are mentoring younger Autistic and non Autistic kids.  One of the most valuable relationships my daughter currently has is with a little boy who shows no signs of being Autistic himself.  But they enjoy being together and the boy’s parents encourage their relationship. An inclusive society is key as we move forward.

On the Resources page of this blog I’ve put together a fairly extensive list, beginning with non-speaking Autistic people’s blogs.  I am always adding to this list.  I encourage all parents to start clicking on those blogs, find the ones that resonate and speak to you and follow them.  Start commenting on them, reach out to others who share your child’s neurology, develop relationships.  Listen and learn.  You will learn more from doing this than anything I learned in the half-dozen years I spent listening and reading non autistic people’s opinions.

And finally this is a short list of what I consider essential reading/viewing for anyone who has an Autistic child.

Wretches and Jabberers
Ido in Autismland
Intense World Theory of Autism

Emma and Teddy

Emma and Teddy

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

Emma and Laura

Emma and Laura

Emma and Ibby

Emma and Ibby

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

Emma and Henry

Emma and Henry

The Value of Words

Awhile ago Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”

Yesterday Richard referenced Emma’s “silly things” but without the full quote and I think some may have read his words and thought he was suggesting her spoken words were silly, when he was actually quoting Emma.  But the context is everything and when Emma wrote the above, it was about written language versus spoken. I was reminded of my friend, Leah Kelley who has a blog, Thirty Days of Autism.  About a year ago, Leah posted a video that I thought so hysterical, I had to share it and have since watched it many times.  It’s called Bulbous Bouffant.

I dare anyone to watch this video and not smile.  Me?  I laughed out loud. Did any of you join in, saying the words out loud?  I did.  Was this silly of me?  YES!  I love silly.  Silly is way under rated.  How much more fun would we all have if we could engage in conversations like this one?  Those of you who hate clicking on links, you’re going to have to… go on, just do it.  It’s hilarious.

We live in a world where this sort of conversation is not exactly encouraged.  In fact, most people, if they encountered such a person while waiting for the bus or subway would probably try to politely extricate themselves from such a conversation.  Someone who spoke, as the person in the video does, would be thought odd and would be avoided.  He might even frighten people.

A few months ago, Emma wrote,  I am intelligent and cannot speak with the same brilliant words that are in my mind.”  And I understood completely what she was saying.  We need to show that we are intelligent before we can lapse into the silliness of enjoying the sounds of a word, simply because it’s fun, or admit that a word makes us happy, not because of its meaning, but just because of the way it feels and sounds while saying it.  Intelligence first and then silliness can ensue, but if intelligence isn’t proven, then silliness becomes “inappropriate” or “weird” or any number of other words we use when we think someone is not like us and less than.

Yesterday Emma wrote, “I troubled you when I intended to talk and words told different tales than I thought.”  I have to say it made me sad to read her words because she’s right, it did trouble me, and had I known how bright she was, I would not have been so troubled.  But this is also a problematic statement because it’s focused on perceived intelligence and shows a definite prejudice towards those who are defined as “intelligent” versus those who are not.  That actually goes against everything I believe.   ALL human beings should be treated equally, with respect, love and kindness, no matter what their perceived intelligence is.  And yet, my obvious prejudice is there and so this is something I will look at and be more aware of.  Without awareness, I cannot change.

So when Emma then wrote, “I realize any words are valued more than silence” I understood her to mean her “written words” because those are the words we applaud her for, those are the words we quote and talk about, those are the words we say, “Here!  Read this!”  Partly because they are so insightful and wonderfully wise, but also because they prove, beyond a doubt, how very bright she is.  But also there’s a hierarchy in our culture –  the more spoken language an Autistic child has, the “higher” functioning they are deemed.  Spoken language in our culture is everything.

Except what about all those people who have not found a way to express themselves? What about those who cannot express “profound insights”?  Are they less important?  Are they somehow less human?  Are they not deserving of the same respect and treatment we so easily and readily give to those who speak eloquently and brilliantly?

“I realize any words are valued more than silence.”

Silence

Silence

 

Asking Emma

Imagine for a moment if you had an idea.  It was an idea that was in keeping with a conversation taking place by others in the same room as you, but when you opened your mouth to share your thought, instead of using words that would convey what you were thinking you said something that sounded like, “Peacock!”  Not only did you say “Peacock!” but your voice was loud, some would suggest you were shouting, even though you hadn’t meant to shout, even though you weren’t thinking of a peacock, that was the sound that came from your mouth.

Now imagine that, in addition to this, you smiled and maybe laughed too.  Maybe you laughed because as you said what sounded like “peacock” you were also hit with a memory of a time that was funny, or maybe saying those two syllables made you happy, maybe the act of saying them made you laugh, or maybe you laughed, but nothing struck you as funny, the laughter was merely a response to anxiety or maybe it wasn’t any of these things.  Maybe the laughter just escaped from your mouth, unbidden.

Whatever the “truth”is about why the person suddenly shouts what sounds like “peacock!” and then laughs, while others are having a conversation about global warming or are discussing their concerns with a project they’re working on or are talking to each other about what to have for dinner, they are unlikely to assume the peacock shouter is listening to their conversation, much less that they have anything relevant to add.  In fact, the people having the conversation may regard this outburst as an intrusion, or an unwelcome distraction.  Or maybe they don’t, instead they stop their conversation and smile, or laugh and say something like, “is that funny?”  “Are you thinking of something funny?” or “Oh!  Do you like peacocks?” and when all of this is met with silence or some other utterance unrelated to both peacocks and the conversation they were having, they continue  with what they were saying to the other person.

Richard is good about saying to me, “we should ask Emma” or “Emma, what do you think?” or “Let’s find out if Emma has anything to add” or just turning to Emma and saying, “Hey Em, we’re talking about _____.”  Including Emma in our conversations is not something we regularly did.  It’s not that we never did, it just wasn’t something we regularly did.  Including Emma in conversations was not something we once considered doing, not because we didn’t want to, but because it didn’t occur to us that she was listening and understanding, much less had something she might like to add.  This is where her being able to write her thoughts has changed everything.

Once we began presuming her competent we began including her, but as she didn’t have a way to express herself, the – “do you have something you want to add? or so what do you think?” questions were not asked of her.  But once she began writing, all bets were off.  Suddenly and quite dramatically her words propelled me to reconsider even more what I’d once thought.  All of my assumptions, all those misunderstandings, I now view differently.  Now when Emma shouts, “peacock” I do not assume she is interested in talking about the colorful bird.  She may be, but she may not be.  But and this is a big but, I’m able to ask her and she is able to reply.

Emma has written often that the words that come out of her mouth do not always reflect her thoughts.  I used to think that whatever she said out loud, was indicative of what she was capable of and, in addition, was what she intended to say.  My misunderstanding of what was going on for her made for a great many misunderstandings.  Had Emma not found a way to communicate, had she not found a way to write what she knows, thinks and feels, many people would not question that her spoken language is representative of her mind.  They would not be able to believe that she has the complex and brilliantly observant mind that she has.  For most people this is a very difficult concept to fully grasp.  It has taken me daily exposure to such a mind to begin to stop making incorrect assumptions about not just my daughter, but all people I meet who do not speak or whose language is not an accurate reflection of their thoughts.

Emma

Emma

Theories or What Does the Least Damage?

“Of all the therapies and various interventions we tried before you were able to write to us, did any help you?” I asked Emma the other day.

“No,” she wrote and then looked me in the eye and said out loud, as if I might not have understood her, “No.”

I have written about what we would have done differently had we known all that we now know ‘here‘ but still, I have to admit, I was surprised.

“But what about OT?” I asked.

“It is helpful to move,” Emma wrote.

“But did it help?” I asked.

“It’s helpful to move,” she wrote again.

And then I realized.  I was doing that thing that people so often do.  I was asking her a question, she was answering and then, because I couldn’t fully take in her answer or because I was hoping for a different answer, I was asking again.  If this were an interrogation it would be called, “leading the witness.”  Asking questions to elicit a particular response.

“Really?” I said, without thinking.  This time, Emma didn’t even bother to answer, she just looked at the timer and observed out loud, “Six more minutes and study room is allll   doooooone!”

I know for parents new to autism, these words may strike terror.  I remember early on being told about a parent who chose not to do any of the recommended therapies and being horrified.  Wasn’t doing something, even if it wasn’t helpful, better than nothing?  And then I met Henry and Kamila Markram.  They are the two neuroscientists who came up with the Intense World Theory of Autism.  It was Henry who suggested that if you could create a stress free environment for your young child, if you could shield them from surprise, create a calm, safe environment, you would do more for them than any therapy currently available.

Now for those reading this who are thinking I am saying this amounts to doing nothing, I’m not.  But there are those, like Uta Firth and Anna Remington, who insist the Markram’s recommendation, to lessen or adjust the stimuli in autistic children’s environment, is comparable to Romanian orphanages’ and go on to say, “insufficient stimulation and impoverished neuronal input in early development are damaging to children’s social, cognitive and emotional functioning3.” Except this shows a serious  misunderstanding of what the Markram’s are suggesting.  Neglect, mistreatment and being chained to a bed are not what I would call providing a safe, loving, environment free of surprises and lessening of outside stimuli.  

All children crave stimulus, but with the hyper/hypo-sensory issues that confront most if not all autistic children, Dr. Henry Markram suggests sheltering children in a comforting environment that minimizes surprises, sudden unexpected changes of plans, entering new, unfamiliar environments without any preparation, sensory assaults from loud sounds, bright lights, etc. He especially suggests avoiding confrontational behavioral therapies that demand eye contact, verbal responses, compliance and restricting movement.  What makes sense to me?  Following the child’s lead in seeking out craved stimuli. This is an aspect of Floortime that I think is a good approach.

As for other suggestions on “the right way to do it” I’d love to hear more ideas from our autistic readers. What do you think would be truly helpful?

Ideally we would have more scientific studies that show which of these various ideas are correct and that parents should do x, y and z while knowing that they were doing the right thing, the best thing, for their child, but we aren’t there yet.  So until we do know, without a doubt, one way or the other I am going to continue to look to Autistic people and my daughter to guide me.

Riding on the carousel - 2010

Riding on the carousel – 2010

 

 

Differences

“I want to write about being an Autistic girl.  Sometimes difference isn’t easy.  Easiest is to be like everyone else.  Trying to fit in when you act and talk like me only makes everyone more aware of how I am not the same.  Blending in isn’t an option for me.  I stand out anyway. ~  Emma Zurcher-Long

Emma’s words, written last night, reminded me of the TED talk Sir Ken Robinson gave eight years ago, in 2006.  A talk that more than 26 MILLION people have watched on the TED channel, more than 6 million on Youtube

“…If you’re not prepared to be wrong, you’ll never come up with anything original.” ~  Sir Ken Robinson

He also said later in this same talk,  “…the consequence is that many highly talented, brilliant, creative people think they’re not, because the thing they were good at at school wasn’t valued, or was actually stigmatized. And I think we can’t afford to go on that way.”

He wasn’t referring to children with a different neurology.  He was referring to the NON autistic population!  Now think about his words in relation to those with a different neurology…  “wasn’t valued, or was actually stigmatized.”  THIS, this is something I think about all the time.  What if… what if we lived in a society that actually valued Autistic neurology?

We need to radically rethink our view of intelligence,” Sir Ken Robinson said.  He also said, “…creativity — which I define as the process of having original ideas that have value – more often than not comes about through the interaction of different disciplinary ways of seeing things.”  An Autistic brain is all about seeing things differently from the majority of the population.  Why are we trying to temper this?  Why do we spend so much time, energy, effort and money on trying to make Autistic people like their NON autistic peers?  Doesn’t this seem like a massive waste of time?  It does to me.  And this isn’t even taking into account the trauma we are inflicting on a group of people who canNOT be like their non autistic peers even if they were motivated to be.  

Sir Ken Robinson goes on to tell a story about a girl who is failing in school.  Her teachers are complaining, she can’t stop fidgeting, she’s doing poorly in all subjects and the mother takes her to a specialist who after listening to all the things the girl is doing wrong, tells the girl he has to speak with her mother privately and together they leave the room, but not before he turns on the radio.  “And when they got out the room, he said to her mother, “Just stand and watch her.” And the minute they left the room, she was on her feet, moving to the music. And they watched for a few minutes and he turned to her mother and said, “Mrs. Lynne, Gillian isn’t sick; she’s a dancer. Take her to a dance school.”

That girl, Gillian went on to graduate from the Royal Ballet School “and founded her own company — the Gillian Lynne Dance Company – met Andrew Lloyd Weber. She’s been responsible for some of the most successful musical theater productions in history.”

I’m not saying all of our kids will become famous dancers, heading up their own companies, but what I AM saying is that it’s time to rethink how we think about autism and our Autistic children who will one day grow up to be Autistic adults.  We can crush them with the insistence they conform, despite all evidence suggesting they cannot or we can encourage them to flourish.  We can insist they communicate like their non autistic peers and subject them to endless hours of therapies created to train them in how to be indistinguishable from their peers.  OR we can find other ways, creative ways to help them be all they can be.

Sir Ken Robinson ends his talk, which I hope you’ll watch if you haven’t already, by talking about the gift of human imagination and using it wisely.  He says, “the only way we’ll do it is by seeing our creative capacities for the richness they are and seeing our children for the hope that they are.”

“Seeing our children for the hope that they are.”

This, it seems to me, is at the crux of everything.  Every single child born, no matter how different they may be from the majority of people, must be approached with this in mind.

“Blending in isn’t an option for me.  I stand out anyway.” ~  Emma Zurcher-Long

Contemplation

Contemplation

“It’s Important That Other Parents Understand.”

Written by Emma Zurcher-Long

“I will talk about the upheaval from last night”

“I toyed with downward feelings of rage then

as bountiful memories seeped into my raging mind

I surrendered to purposeful sleep

my screaming mind is momentarily spared from stormy thoughts

piercing my being

threatening no kindness

patience is ground down til pounding terror is all that remains.

Only the dedicated few

talk about love during episodes of furious pain

their love is rejuvenative and restores faith in this awkward world.”

 

From Ariane:

Emma wrote this after having a very rough night over the weekend.  I asked her if it was okay to post her beautiful words here and she agreed.  I asked because there was a time before we had found a way to support Emma’s outpouring of words, before she was able to write, before we were able to understand, before we understood…  those were the times when nights such as the one she is referring to were even more devastating for all of us and our assumptions about what might be going on were so often wrong.  Emma agreed to post this because, “It’s important that other parents understand.”  The problem with the assumptions we made was that they often led us to then behave accordingly, even without meaning to, they affected how we responded to her.

We might have thought – this is a manipulation, she is doing this to us.  We are being held hostage to her screams.  We would mistake her terror for manipulation.  We might withhold our love in anger.  We might assume that to not do so was giving in or condoning the “behavior”.  We might do any number of things to “show” her that this way of being was unacceptable.  Except that this “way of being” was so beyond the scope of our experiences, so beyond what we could make sense of.

“Pounding terror is all that remains.”

And so I remembered afterward the comments from this post, “What Others Had to Say: Love, Overwhelm, Violence” and all the people who so generously opened up their lives and wrote about their experiences with being overwhelmed and no longer able to cope.  That point when feelings completely take over and all we can do is weather the storm.  Emily K. wrote: “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

And Autisticook who wrote:  “It will get better.”

And she also wrote this:  “Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.”

And this:  “You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.”

And this:  “Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me.”

And this:  “I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.”

And THIS.  This is SO important:  “Don’t ask me questions.  If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again.

And this: “Don’t try to distract me.”

And this:  “Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.”

And finally, this:  “Please give me time to process.”

I would like to report here that I remembered each and every one of these things and that I put them all into action, but I didn’t.  What I did do was try to remain calm and loving.  And when my calm began to fray, I tried to remove myself, while reminding her of my love.  I did a number of things right, and I made a number of mistakes.   We are all learning here.  When calm was restored Emma said she wanted to write about “the upheaval from last night.”  This was in response to my question, “Is there something in particular you want to talk about this morning or would you prefer we discuss an article from the New York Times?

I was surprised she wanted to talk about it.  And then she wrote those beautiful words, which I can only describe as less prose and more poetry, a song, really.  A song borne of experience, despair, and transformed into a thing of beauty.

The beauty of Emma.

Emma ~ 2012

Emma ~ 2012

 

The Dreaded IEP Meeting

Those annual IEP (Individualized Education Plans) meetings all parents of children with “special needs” attend are something I used to dread.  Meant to ensure our children are given the supports and accommodations they need, I went to our first meeting with eager anticipation.  This was where, I thought, we would be able to work with a team of people all of whom had the same goal for our child – getting and giving her the best supports and accommodations available so that she could flourish.

What quickly became apparent however was that this was when her team would write a series of bullet points describing all that was wrong with her.  All the ways in which she fell short, all the ways she demonstrated how incapable she was, were described in detail, documented and added to her growing file.  This was the time, once a year, when I would sit and listen to that itemization, fighting back my tears.  The few things said during that first IEP meeting that were supposedly positive regarding spoken language, were written as a criticism, “…uses gestures to whine or protest.  She is described as shouting or vocalizing to gain attention.”   I would leave these meetings feeling hopeless and filled with the sort of despair I described in yesterday’s post, Dare to Hope.

Today, almost ten years after that first IEP was written, Emma writes by pointing to letters on a letter board and more recently with both her RPM teacher and me, she is typing on a bluetooth keyboard attached to an iPad.  No one touches her as she writes.  Emma has written before about the words that come out of her mouth.  I will quote her, since the way she describes what happens to her when she speaks is far more descriptive and eloquent than anything I might write.  Emma wrote yesterday in her IEP meeting, “I try to talk, but the words just come out wrong.”  A few months ago she wrote how she wished people would, “listen to my writing voice, but they listen to my talking voice instead.”

As always, I asked Emma if I could write this post about her first IEP, as an example of the assumptions made and how far off we were in our thinking as well as a document for those of you who are at the beginning of all of this.  Emma generously agreed that this was a good idea and wrote, “know that just because a kid doesn’t talk or talks like me, doesn’t mean the words that come out are the same words that are in their mind.”  Regarding her so-called “behaviors” which Emma describes as a body/mind disconnection, she wrote,”I hope to better control my misbehaving body, but sometimes it won’t obey.”

A few weeks ago I asked Emma if she could remember when she was very young.  She wrote, “Yes, my body could not behave because I was not able to cope… too many competing sensations.  I couldn’t make sense of everything that did not connect me with my irritable body.”  Now keeping her words in mind, read these words taken from her IEP, dated 2005 (Emma was three years old):

Emma avoids “looking others in the eye, does not answer when people talk to her, does not get along with other children, seems unresponsive to affection and shows little affection towards people, withdrawn…”

“The skills that she does not show evidence of include:  does not yet engage in make believe play, does not yet match objects, complete interlocking puzzles, repeat digit sequences, identify body parts or show understanding of number concepts.  She does not yet point to body parts, clothing items, prepositional commands, or know size.  She does not participate in story telling or give her full name or use pronouns… and shows limited interest in other children.”

The report goes on to say:

  “She does not vocalize when another person calls her name.  She produces a variety of consonant sounds.”

When I read Emma’s words and the way she describes some of what was going on for her and compare her words to the words written on her IEP, it is impossible not to see the massive disconnect between what was actually going on and what all of us assumed was going on.  It is from those assumptions that her goals were then created.  Goals such as:  “Emma will increase communicative intent via word and/or gesture to consistently request object article/toy/food (8/10) trials.”  “Emma will maintain eye contact and prompt (8/10) trials.” “Emma will use at least 10 objects functionally, 4/5x”  “Emma will imitate 1-2 word utterances during play, 4/5x” the list goes on, but the goals are all either regarding compliance and/or acting according to non autistic standards of behavior using spoken language.

In contrast, yesterday we went to Emma’s IEP meeting with Emma, who contributed her own thoughts and opinions about the goals that were set by writing on the keyboard I held for her.   At one point she wrote, “it’s very good having time to go over goals.”  And when asked about the efficacy of being asked to use a mood chart, she wrote, “Sometimes I feel many things at once.  Would the mood chart work for you?”

Can I just say how proud I am that my daughter asked this question?  And by the way – No, Emma, being asked to chart my moods or anticipate what my mood might be would not work for me.  I think it would actually really piss me off if I was asked, while feeling both upset, sad, frustrated, maybe a little frightened and annoyed  to use one word to describe what I was feeling and then was asked, “What’s wrong?” when I could not rely on spoken language to adequately express myself and no one could support me in the way I needed, so that I could write either.

What was wonderful about yesterday’s IEP meeting was that her staff is dedicated and completely committed to listening to Emma and learning from her what it is that she needs and wants.  Everyone was kind, thoughtful and patient and in the end we have an IEP that reflects our goals for Emma, but more importantly it is a reflection of her goals for herself.

Emma the year before that first IEP

Emma ~ 2004, the year before that first IEP

 

Dare to Hope

Trigger Warning:  Parental despair

Five years ago I was in a bad, bad place.  Life felt unbearable.  The future loomed ahead shrouded in fear.  I could not imagine a life that was not bleak and filled with pain.  There were times when I could not bear the thought of another day.  There were times when I felt it was all too much.  People would make kind suggestions, but none of their words made sense to me.  I was sinking and saw no light.  I thought it was because of my specific circumstances.  I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her.  I was told she couldn’t comprehend this world.  I was told concepts like less and more, time, currency were beyond her ability to grasp.  I was told she was in her own world.  Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children  had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed…  There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry.  I cried for myself, but I also cried for my child.  I loved my child.  I ached for my child and what seemed to be her inevitable future.  Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being.  I had fantasies of “heading north”.  I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.”  Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing.  There was a part of me that meant it.  I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description.  There are those who will judge me and what I once felt.  There are those who will point out how self involved all of this sounds.  They will say, but how could you not see that what you were feeling was affecting your child?  There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror.  I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours.  She is writing now.

She is writing such incredible words.  Sometimes a sentence may take her five minutes to construct.  I would cheerfully sit for thirty minutes or however long it takes for her to express herself.  Parents hear about my daughter and they say, “Ah, but my child isn’t like that.”  And so I ask, “How do you know?”  Parents say, “I know my kid.  He/she isn’t able to understand.”  I once believed that too.  And so again I ask, “How do you know?”  Parents say, “I know my child better than anyone.”  I once said this as well.  I thought I knew.  I believed what others told me.  She would laugh and then run full force into a cement wall, using her head as a batting ram.  We would get the dreaded phone calls from her school.  All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.”  “She does not know the value of a penny.”   “We will continue to work on sight words.”

Today my daughter is enlightening me.  If you want to know more, read “How We Got Here“.  Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.”  Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that.  I cried because I didn’t know until recently.  I cried for all the years when she had no way of telling us.  I cried for all the times I didn’t believe.  I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams.  I cried for every single parent who has ever felt the way I once did.  I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them.  I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.”  I didn’t dare hope that one day my daughter might be writing the things she now writes.  I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair  – I was once just like you.  Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant.  I’m grateful now that I didn’t find such a group because there’s another way.  I found another way, but not before making many, many more mistakes.  This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope.  Without that we are all lost.

*As always, I asked Emma for her permission to publish this post.

Watch:
Wretches and Jabberers
Mark Utter’s I am in here

Read:
Ido Kedar’s book:  Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.

Emma getting ready to write

Emma getting ready to write