Tag Archives: Education

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

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

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

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

 

A Living Amends & the Ripple Effect

Last night I was on Marc Rosen, Nick Hale and James P. Wagner’s blog talk radio show Human Potential.  You can listen to the show by clicking on the link provided.  The show focused on “The Importance of Allies.”  I was really honored to have been asked on the show, particularly given my past and the things I once believed about autism and my daughter.  I certainly did not begin this journey as an ally and so I am filled with a great deal of gratitude when told there are those who think of me as one now.

One of the things I forgot to mention last night as we talked, was this idea I’ve had ever since that day when I found Julia Bascom’s blog, Just Stimming, and specifically her post “The Obsessive Joy of Autism.”  It’s an idea I’ve tried hard to put into practice these past few years. The idea is that because I made so many really awful decisions about my daughter, I needed to make a “living amends” to her.

The idea of a living amends is that as long as I am alive the only true amends I can make that will have any lasting impact, that has any chance at countering at least some of the bad choices I made, is to do everything in my power now to live my life differently.  A living amends is different from an apology no matter how heartfelt that apology may be.  It is an ongoing commitment to change, to be open, to be willing, to have humility, to learn, and to behave differently as a result of this new-found awareness and commitment.  This is what I promised myself and my daughter just over two years ago when Julia’s blog opened my eyes to a different way of viewing my daughter’s neurology.

Since then I’ve had time to contemplate all of this and believe my role as Emma’s parent is to support her, encourage her, cheer her on and do everything in my power to make sure she feels empowered and supported to be all that she can be.  I do not ever want either of my children to be who they think I want them to be, or who anyone wants them to be, for that matter.  My job is to help them figure out who they want to be and then give them the support to help them be that person.

It is also this thinking that continues to drive me to do all I can to change how the world views autism.  I don’t mean that to sound as egotistical as some might take it. I do not expect, nor do I believe I have the power to change the world’s view, but I do believe each one of us can and does make change happen one person at a time.  There is a ripple effect that then occurs and that ripple effect repeated many times over does have the power to change what no single one of us can.  There is a saying – together we can do what neither one of us can do alone.  Or as Helen Keller is quoted as saying, “Alone we can do so little, together we can do so much.”

Julia Bascom’s blog is a perfect example of this.  How many, like me, were radically changed as a result of her words?  How many people then took her words and began to live their life differently?  How many then altered the lives of their children because they now presumed them competent?  How many?  I’m guessing the answer is more than just a few…  that’s the ripple effect in action!

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

What Are State Assessments Assessing?

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

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

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

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

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

April 9, 2014

April 9, 2014

How Do We Put A Price on Communication?

As I was downloading a couple of photographs just now, I found the video we took of Ari and Emma’s presentation Wednesday evening.  Intact.  We’ve got it all!!  Woot!  Woot!  But before I put the video on here, I have to get permission from Ari and Emma.  So let me do that and then, if both agree, you should be able to view it next week.  I’m hoping by Monday.

In the meantime, there’s something else I want to talk about.  And that is the experience of hearing your child’s thoughts and opinions, interests, questions, and desires, when you weren’t sure you would ever be able to do so.  Now this is a little loaded because there are some who believe it’s wrong to suggest all Autistic people will be able to express themselves.  Those people believe there are some who cannot and it is creating false hope to suggest otherwise.  There are still others who feel that communication comes in myriad forms and we must stop insisting one way (speech) is the only way. They believe we should honor all methods of communication, whether that’s through words, sounds, body language, or silence and using our other senses.   Those people believe, and I am one of them, that we all have the wish to connect with our fellow humans in some capacity, at least some of the time, and it is incumbent upon all of us to figure out how we can support each other so that all have the opportunity to do so.

When Emma first wrote an unexpected sentence, described in detail ‘here‘ it was the beginning of what would turn out to be nothing short of an odyssey for all of us.  From that moment, on November 25th, 2012, we have experienced what can only be described as a dream-like adventure with Emma leading the way.  The degree to which she was underestimated by almost everyone who met her, including us, is beyond my ability to describe.  I say “almost” because there were a few people who met her who were not fooled.  It is interesting to note that those few were Autistic.  My friend Ibby was the first and we’ve written a little about this in two pieces she and I wrote featured in Parenting Autistic Children With Love and Acceptance’s first addition of their terrific new magazine, which you can read ‘here‘ (It begins with a piece by Ibby on page 17 and then ends with my companion piece beginning on page 21.)  By the way, the entire magazine is filled with wonderful pieces by Beth Ryan, Nick Walker, Cynthia Kim, Amy Sequenzia, Renee Salas, Sharon davenport, Alyssa Hillary, Kimberly F. Steiner, Juniper Russo, Amy Caraballo, Jane Strauss, Kelly Green, Steve Summers, Leslie Rice, Zita Dube-Lockhart, Leah Kelley, Lei Wiley Mydske and others who donated their art work.

When someone sees Emma, who now communicates by pointing to letters on a letter board, (which is different from when she wrote that first sentence a year and a half ago) I sometimes hear the following comments – “I just don’t see how this can translate to a school setting” or “It takes too long” or  “economically it’s not feasible because it requires a one on one ratio that most schools won’t be able to pay for.”  Except here’s the thing…  The way Emma communicates is tailored for an academic setting.  Just as in any classroom, a student is called upon to give an answer or thought, about any given topic, so could Emma be given the opportunity.  All it requires is for the teacher to say, “Emma when you’re ready just signal and you’ll be next.”  The aide can then raise their hand when Emma has finished writing.  This would also deal with the comment that it “takes too long” and I’ll just add that our society’s increasing desire, that everything be reduced to a sound bite, should be tempered, and having someone like Emma in a classroom, would be beneficial to all, by the very fact that we all need to slow the f*ck down.

As far as what this means economically, I argue that there is a great deal of money being spent on a great many things that are NOT working.  Things like trainings for methods that do not produce the type of complex and nuanced language we are seeing.  How do we put a price on communication?  How can anyone suggest that having someone who was thought to be unable, or worse, incapable of expressing their thoughts, not be supported to do so because of the cost associated with it?  How can any of us seriously object?  And yet… people do all the time.  And it catches me by surprise every, single time when they do.

To see your child express their thoughts, as we have had the opportunity to do, is beyond anything I’ve ever experienced.  It has changed everything.  Literally everything.  Some people have said to me, “Oh you’re so patient.”  No.  I’m not.  When Emma is writing something, I am filled with eager anticipation for what she’ll say.  Patience?  No.  Ecstatic is a better way to describe my feelings as I witness the outpouring of her words.

How we engage with our daughter, how we speak to her, what we think and now believe, all of it has dramatically changed as a direct result of her communication.  I haven’t even begun to discuss what this has meant to Emma.  And here’s just one more massive difference between then and now.  Instead of me guessing or making assumptions about what this means to Emma, she can now tell us.

“I want to tell you that I am capable.  Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.”                                         By Emma Zurcher-Long

How does anyone put a price tag on this?

Emma Wears A Pretty Dress To School ~ April 4th, 2014

Emma Wears A Pretty Dress To School ~ April 4th, 2014

When the Body Does not Obey the Mind

Emma gave me permission to quote her words, written this past Sunday.

“Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.

“Sometimes I want to scream.  I am trying so hard, but no one notices and they are annoyed instead of understanding.”

Emma wrote this in response to her gymnastics teacher, but it applies to so many instances where she confounds those around her by doing things she knows she shouldn’t, things she doesn’t want to do, doesn’t intend to do and yet does anyway.  Typically people assume she is doing these things because she doesn’t care, or is trying to be mischievous, or “wants attention” or any number of assumptions people make when witnessing her actions.  But in speaking with Emma, it is clear how incorrect these assumptions are.  As Emma wrote, “I am trying so hard, but no one notices and they are annoyed instead of understanding.”

Sydney Edmond is an Autistic young woman who describes herself as “… locked inside a body that won’t cooperate.”  Sydney published a book of poems, The Purple Tree and Other Poems.  Recently Sydney gave a lecture to a group of Special Education students and educators at a high school.  She generously gave me permission to reprint some of her lecture here.

“People need to know, because Society apparently thinks autistic people are lacking intelligence. Our wandering wayward eyes and hands flapping, screaming, and anxious stimming don’t help, either. But in truth, we polish our souls deep down inside where they can’t see us, while our dastardly bodies act in ways we can’t control. That’s right. I told you I have lousy control over my behavior. Can you relate? Perhaps you have moments when your body does things without your permission? When you lose control and shout at someone or hit out? Well imagine what it would be like if you were just the opposite, and were always out of control with little solid gold moments when all the pieces come together and knowledge passes impulse? For those moments we are the captain of our ship and we feel unbelievably perfect. But, passing time wipes it away. Possibility becomes disability again. Look at your fellow students with autism deeply and with patience. We are in here.  And we are exhausted, panicked, and lonely.”

Ido Kedar, who wrote the book Ido in Autismland writes about the body/mind disconnect he experiences, as well as the embarrassment he then feels when his body does not do as he wishes.

“I feel it’s time autistic people finally say what it’s like to be drilled in flashcards over and over when your hands don’t move to your thoughts, or to have your teacher say in front of you that you can’t count because your stupid hands refuse the right number you’ve counted in your head.  I remember standing miserable and embarrassed, holding the wrong number of straws and hearing my teacher say, “It’s clear he has no number sense,” as if I couldn’t understand or had no emotions either.  When I think of these frustrating experiences I am grateful I am not in that situation anymore.  But many of my friends still are.  That’s why I cry for them.”

Sydney Edmond, from her recent lecture, wrote:

“I found freedom and wonderful joy when, as a ten year old, I was taught how to point to letters on a Letterboard and spell what I wanted to say. I eagerly worked, and within a few months, I was able to communicate. In the beginning, I needed a lot of support. I couldn’t even point my finger when I wanted to. My body, as usual, did not cooperate. I had to force it to, so all my words, stored away for ten years, could finally come out into the world. Do you want to know what I asked for? Well, I asked to have my own pizza. And then I asked to learn ballet. And piano. And I asked to learn about history. I was thirsty to learn. I finally had a way to ask questions that let people know I was intelligent. Soon I learned how to type on a keyboard and have a lovely voice added to my words. I went back to school to prove I was intelligent. I had been tested and told again and again I had the intelligence of an infant. Having a method to communicate turned it around. My language comprehension was college level in 8th grade when I was actually given a means to show what I knew.

“Loads of us, people all over the world, type to communicate. I am one of many, and we all want people who cannot speak to have the opportunity we are enjoying. I hope that my words today might spark a willingness to proceed on the journey of a lifetime. I hope one of you will take action to give a voice to someone who cannot speak.”

Ido, Sydney and Emma all began writing to communicate by using a letter board.  All of them discuss what it is like to have a mind that “…tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.”  Each of them describes their experience, whether that includes frustration, embarrassment, or shame and what it is like to be so thoroughly misunderstood.

I am grateful to each for allowing me to reprint their words in the hope that others will begin to reconsider their assumptions and how they then respond.

"Happy"

“Happy”

“Put it on the Blog!”

“Put it on the blog!” Emma said with glee as she bounded into the house. A master at multi-tasking, she twirled her string, unzipped her coat and raced off to put on some music all within seconds of opening the front door.  I knew what she wanted to put on the blog.  She’d successfully completed a catch in Trapeze School that morning.  I knew it had been recorded.  So… here it is, for all of you to see.


Yesterday afternoon Emma wrote some pretty wonderful stuff about how her body and mind are often not in sync and what that’s like for her.  We taped some of it and once I have her permission and we’ve uploaded it, I will attempt to post it here.

Earlier I showed Emma a NYTimes article about the missing Malaysian Airlines jet leaving Kuala Lumpur heading to Beijing.  I asked Emma what she thought and she wrote, “It is terrible and worrisome for all of us.”  I then asked if she had any questions and she wrote, “Has anyone asked for anything yet?”  I asked her if she meant a ransom note of some kind, to which she answered, “yes.”

I write this as an example of the sorts of things we discuss these days and because there are some who continue to doubt Emma is capable of understanding such things…

“Talking is Easy, But Saying What I Mean is Hard”

Most of us, who have spent our lives using spoken language as a way to socialize and convey what we are thinking, do not ponder what it would be like if we could not do so.  Most of us who are able to speak do not spend time imagining what it would be like if we could speak, but what came out of our mouths did not necessarily match what was in our minds, or wasn’t what we wanted to say, or was taken to mean something else.  For those of us who speak and have little difficulty having a conversation with another it is difficult to imagine what it might be like if we could not speak at all.  We easily tune out our environment allowing us to focus on what is being said by another person.  Asking questions comes naturally, and without thinking we ask for clarification about things we don’t understand or want to know more about.  When we cannot hear something or lose part of a sentence spoken by another, we ask to have the part we didn’t hear repeated, or request that it be said in a different way.  And even so people misunderstand each other all the time.

But what if we could speak only a little and those hard-earned words we finally managed to say were met with confusion, irritation, even anger and led to misunderstandings.  Or what if speaking words was so difficult it was easier to utter sentences constructed by others, sentences that held special meaning to us because it reminded us of a happy or sad or anxious or frightening time. Whenever one of those emotions surfaced, we would blurt out that sentence from the past, because it so beautifully captured what we were feeling now.  Maybe though, other people who did not understand or know the meaning they held for us, took them to mean something entirely different.

A blogger friend, E. of the fabulous blog The Third Glance wrote an amazing piece, Words, a couple of years ago about trying to participate in a conversation with a group of friends.  I’ve never forgotten that post, it was one of a number of posts that radically changed my thinking.  You can read it by clicking ‘here‘.  She describes wanting to keep up with a conversation that a group of people she knows is having in a busy place, while trying to filter out the noise that comes with being in a public place, the stress of trying to figure out when it would be appropriate to interject a comment, the pressure of knowing some sort of response is expected of her, and not being successful.

Yesterday Emma wrote, “Talking is easy, but saying what I mean is hard.”  I understand that when she wrote that, she meant it literally.  Emma “has language” yet cannot carry on a spoken conversation.  Emma cannot answer with spoken words questions like, “What did you do in school today?”  Or “What did you think of that movie?”  Or “Which student in your class do you like best?”  Or “What’s your favorite subject?”  Or even “What are the names of the other students in your class?” or “Where do we go to borrow books?”  As a result all those so-called reading comprehension questions are met with silence, or with words that seem to have nothing to do with the question asked.

The other person then draws the conclusion that Emma does not understand the question, or cannot read, or isn’t interested, or doesn’t care or is intellectually disabled, impaired, has a disorder, a disease, is afflicted, suffers from, is a puzzle piece, is locked in her own world or any other word or phrase used to convey what we believe to be true because of our understanding of her and those like her based upon what she can or cannot say with spoken words.  This is the same girl who wrote, ““I can’t talk the way I think.  Where is the label for that?”  The same person who eloquently answered questions about functioning labels, stimming and autism, ‘here‘, ‘here‘, and ‘here‘.

“Talking is easy, but saying what I mean is hard.”

Emma Playing the "My Mouth is Glued Shut" Game

Emma Playing the “My Mouth is Glued Shut” Game

“Picture Day Moments”

Yesterday was picture day at Emma’s school.  Over the weekend I went to the photographer’s website, paid for the photographs online, chose which packet we wanted and then filled out the little envelope that had been sent home and placed it in Emma’s back pack.  Emma and I discussed picture day and she carefully chose what she wanted to wear, a red velvet dress worn with black velvet leggings.  She’d washed and rinsed her hair the night before with particular care, and as she waited for the bus, she smiled at me and said, “Smile!”  I laughed and told her I couldn’t wait to see her photograph. The bus arrived and off she went, sprinting up the steps, with me waving good-bye.

That afternoon I had a meeting at her school with a few people from her team.  I was informed that there’d been some issues in the morning with Emma distressed.  Something about wanting to leave the room.  There was mention of her wanting to leave the room because of it being picture day, but that she had to stay in the room and was not allowed to leave.  I assumed that was because the other children were waiting their turns too and didn’t think to ask for more information.  The conversation veered off to other, seemingly more important, topics.

When I returned home with Emma I opened her back pack to find the envelope for picture day just where I’d left it.  No one had taken it.  Still, I didn’t put two and two together, didn’t think to ask Emma about it and besides, she’d already been asked to write with me that afternoon at school.  I emailed her teacher telling her the envelope was still in her back pack and received a reply that they hadn’t seen it and therefore assumed that I did not want Emma to have her photograph taken, but that she had been included in the class photo.  And I felt that awful feeling when your throat feels swollen and you can feel your heart beating and your chest constricts and your breathing becomes shallow and your vision blurs.

This morning I spoke with Emma about picture day, telling her there’d been a misunderstanding and how sorry I was.  I asked her to talk about it.  She told me how upset she was that she didn’t get to have her individual photograph taken as the other children had.  “I’m so sorry” I kept saying, but I can’t make what happened any different.  I know it’s just one incident, something relatively small and in the grand scheme of things not particularly important, but you see, this is just one example of what occurs regularly for our kids who do not speak, or, as is the case with my daughter, cannot say what she necessarily intends.

There are dozens and dozens of “picture day” moments.  Little things where she is misunderstood, cannot initiate a complaint, is not asked the right questions, cannot “speak up”, cannot protest with a reason why, instead she is thought to have “behaviors” when she tries to leave the room.  Assumptions are made, well meaning staff decide they understand her and know what is going on, and maybe they do, but maybe they don’t.  How many “picture day moments” happen from one day to the next.  Expectations and questions gone unanswered, thoughts and feelings unable to be formulated into words, or words at the ready if others were only capable and able to support enough that those things could be expressed.  How often?

Teachers are trained in a definition of autism, that is incorrect.  A definition that assumes intellectual disability which is connected to an inability to make oneself understood, low IQ, problematic behaviors, unable to read aloud and therefore cannot read, a whole series of assumptions are being made daily about Emma and kids just like Emma, but those assumptions are based on a false premise.  Teachers must give our children state required assessments and those scores are believed to represent capability when, in fact, they do nothing of the kind.  Our children must prove that they are not the sum of what others believe to be true.

There is so much that is wrong with the way we think about autism and Autistic people and it begins with our children and continues from there.  Our children who are then put into schools, most of them ill-equipped to help them flourish, spend their days in classrooms where they protest in little ways all the time.  The Board of Education is a massive machine and it is one that must change from the bottom up.  The premise they are working from – that what our children who have the ability to speak words are saying exactly what they mean, that their spoken language represents what they are capable of, that those who cannot speak, who protest by biting themselves, hit their heads against walls of brick and concrete are demonstrating “behaviors” as opposed to actively protesting a system that is not helping them, curriculum is dumbed down, life skills are taught, a high school diploma is not a given, college is not viewed as a realistic goal, all of this is wrong, so very, very wrong.

How many “picture day moments” does a child have in any given day?  How many?

Picture Day ~ 2008

Picture Day ~ 2008

Conversing With Emma

I asked Emma if I could write about a conversation she had with Soma last week.  She told me I could.

Emma told Soma she wanted to open a day care center.  When Soma asked her what she’d call it, Emma wrote, “Emma’s Hope Care.”  Soma then asked what the philosophy of the center would be and Emma wrote, “No Autistic child left behind.”  And then a little later Emma wrote, “early education” and “no behavior management.”  Soma asked Emma where this center would be located, Emma wrote that she intended to have several, but that the headquarters would be in Chicago.  I smiled when she wrote that as my brother and his wife live nearby as does our friend Ibby, or as Emma calls her, “Ibby from Ibbia”.  Emma also said there would be a center in New York.

This was an easy back and forth conversation, with Soma giving her thoughts about things then asking Emma for her thoughts or Emma volunteering her opinion without being asked. Emma pointed to letters on a laminated alphabet board while Soma spoke, and on it went.  It was an example of something most speaking people take for granted.  We do not think twice about exchanging an idea with another, asking questions about things we don’t understand, listening to the other person, formulating an opinion, discussing, perhaps disagreeing, but in the end each person coming away with more information than they had before entering into the conversation.

I was fascinated to hear that my daughter knew about the “no child left behind” bill, passed by the United States Senate in June of 2001 and signed into law in January, 2002.  I also wondered if her comment, “No Autistic child left behind”,  was said with a touch of irony and humor, perhaps even sarcasm, as the current situation in so many special education schools in New York City, both public and private, are leaving a great many Autistic children behind.  In fact children, like my daughter, are regularly put into classrooms where a high school diploma is not a given, much less a goal.  Not only has Emma told me she wants to get a high school diploma, but she intends to go to college as well.

But what I loved most about what Emma wrote was her obvious compassion for others and her desire to do good.  Last fall she wrote about wanting to visit “old people” and then added, or “people in a cancer hospital.”  Funny how when you listen and watch what Autistic people are saying and doing, it is not in keeping with what so many non autistic “professionals” are saying about them.

A completely unrelated photograph of Emma holding Teddy.

Emma holding Teddy

Emma holding Teddy

Emma’s Letter to Her Teachers

This is a letter Emma wrote yesterday to her teachers.

Dear ____________________,

I would like to teach you how to use a stencil board so that I can show you how much I know and so we can discuss what you are teaching me in class.

I want to learn both syntax and style of diverse writers.  Poetry and prose both interest me.  I love to write stories and welcome the opportunity to do so.

You try to teach me, but not in a way that I can learn.  Try to learn what my mother has learned from Soma and change how you think about autism.

Addition and subtraction are fun, but I have been doing that for many years and numbers are easy for me to understand.  It is boring to do the same thing over and over all the time.

I do not like school and I wish I could go to a regular school where I was treated like other kids.

Sincerely,

Emma

After Emma wrote this letter I sat with my husband Richard, clutching the three pages it took to contain these words that Emma wrote, pointing to one letter at a time on her laminated letter board.  I asked Emma if I had her permission to read her words aloud to her dad, she nodded yes and then said out loud, “on the blog.”

Education for our kids, whatever their neurology, is something every parent worries about.  Our schools are buckling under the weight of mismanagement, bureaucracy, out dated and irrelevant standardized test requirements, politics, and the diverse needs of our children, make any one-size-fits-all method of teaching impossible.

I don’t have any answers, but I intend to get some.

To anyone who has successfully gotten their non-speaking child (or a child like Emma who is able to speak, but says things they do not intend) into a “regular” school, please contact me and let me know how you did it.  Does your child have a one-on-one aide?  Did you train the aide yourself?  Do you do RPM?  Did the school work with you?  If they didn’t, what did you do instead?  Any and all experiences are welcome.  You can also contact me by email:  emmashopeblog@gmail.com.

A Session With Soma

A Session With Soma