Tag Archives: presume competence

What Are State Assessments Assessing?

Posted on April 9, 2014 by | 15 comments

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

15 Comments

Posted in Autism, Education, New York City

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Respectful Engagement

Posted on April 8, 2014 by | 22 comments

Respect.  I think about this word a great deal.  There are things I do, things I think in any given moment are examples of me teaching respect and yet in the teaching I am not modeling the respect I am trying to teach.  Here’s an example of what I mean –  (this example is fairly mundane, but it serves my purpose because it’s something that most of us can relate to.)

Let’s say Emma and I are in a new place.   Somewhere, perhaps like the place we recently went to give a talk on Autism Acceptance, where most or all of the people are strangers.  As we enter the room I notice someone I do know and they walk over to say hello.  My upbringing dictates that I introduce this person to my husband and daughter.  I do this by saying, “Hello _______, this is my husband, Richard, and my daughter, Emma.”  The person nods and says hello, maybe they even extend their hand.  My husband without thinking, says something along the lines of “Hello _______, it’s nice to meet you.”  Maybe they shake hands.  My daughter turns away saying nothing.  I am aware that this is not the conventional way (polite) to greet someone so I, without thinking, direct her, “Emma say hello to _________.”

I know enough not to ask her to touch the other person, even if they’ve extended their hand, but I forget that there may be a good reason for her non-greeting.  Perhaps the lights are too bright, or all these strangers are too much, perhaps she is overwhelmed, or the noise is making it difficult for her to concentrate on any one thing.  Perhaps she senses this person is not someone she gets a good vibe from, perhaps the person is standing too close to her.   Regardless of whether I know what could be causing her not to say hello, demanding that she do so, is not the best thing for me to do.

Instead, I might lean down and whisper in her ear, “Do you want to try saying hello to _____?”  If she does decide she’d like to and can, fine and if she cannot, for whatever reason, then that’s fine too.  But before I say something like this I will want to have done a lesson plan around “social niceties” or the things people say to each other and why they do so.  This is the ideal.  However this is not what I always do, because I forget, but these are the little things I constantly think about.  How can I parent better?  How could I have approached that situation more respectfully?  How can I use this as a teaching moment, not just for my daughter, but for myself?

One of the things I’ve learned over the years is that kindness, directed toward myself and others is the single best way most of us learn.  When someone yells at me, I don’t learn, in fact, I shut down.  Even if the person does not yell, but criticizes me, scolds me, directs me to do something without explanation, I feel myself becoming self-conscious or worse, shutting down.  I close in on myself.  I can’t hear what the other person is saying.  I become engaged in an internal battle.  When someone is respectful and kind, I am open and much more likely to listen to them.

People say things like – “oh but that takes such patience,” or “who has the time to do all that?”  I understand.  But I know that the other way, while easy and perhaps quick, is nothing more than a quick fix, if that.  The person may say the words I’ve just directed them to say, but the next time I will go through the same process.  But there’s an even more important piece to all of this, because one can argue, who cares about social convention?  Why should any of us care?  Why should we say hello to one another?  None of this matters.  And I agree, none of this is really the point, the bigger point is that I want my children to understand that we live in a world filled with other people who may or may not share their neurology and that many of those people when met for the first time may offer their hand, if in the United States, and say hello.  I want my children to not be put off by this, but know that they have the option to say hello if they are able to, or not and that I will be respectful of them no matter what their response is.

Directing my daughter to say words that I give her, is not being respectful of her and it also is not presuming competence.  When I give her words to say, I am allowing my issues around social convention to take precedence over respect for my daughter and her sensitivities to her environment.  I want to do better than that.

*I purposely have used the present tense, as this is something I continue to explore and am trying to do things differently.  This is very much a work in progress!

Dressed for spring rain - April 8th, 2014

Dressed for spring rain – April 8th, 2014

22 Comments

Posted in Autism, communication, Parenting

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How Do We Put A Price on Communication?

Posted on April 4, 2014 by | 26 comments

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

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Posted in Autism, Autistic Role Models, communication

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Emma Presents At CoNGo With Ari Ne’eman

Posted on April 3, 2014 by | 22 comments

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

Fade to the following day.

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

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

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

Applause.

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

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

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

Ari Ne'eman

Ari Ne’eman

 

 

 

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Posted in Autism, Autism Acceptance, Autistic Role Models

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Awareness Sucks

Posted on April 2, 2014 by | 21 comments

Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”.  I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful.  But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me.  After all today is World Autism Awareness Day.

A year ago I wrote a  post – Autism Awareness? where I discussed how my awareness regarding autism has changed over the years.  The next day I wrote  – “What I Wish I’d Been Made Aware of When my Daughter Was Diagnosed With Autism“.  After rereading those posts, I then remembered a couple of others I’d written about autism awareness and acceptance, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  And after all that I just felt cranky.  Seriously.  Just cranky.

I don’t look forward to April the way I once did.  April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter.   What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible.  I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.

In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now).  More fear. More anger.  More calls for action.  More listening to people who don’t know what they’re talking about.  More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.

So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.

How’s that for a little awareness?

Emma ~ 2010

Emma ~ 2010

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Posted in Autism, Autism "Awareness", mother/daughter

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Emma Discusses – Awareness

Posted on April 1, 2014 by | 20 comments

“Awareness is deciding something is worth your time and attention.  It is not necessarily good.  Real awareness needs to be balanced.” ~ Emma Zurcher-Long

I asked Emma whether she wanted to write something about autism awareness since April 2nd is World Autism Awareness Day, designated by the UN in 1989.  Emma wrote,

“Autism awareness really does me very little.  It is not honoring or making my life easier.  So many believe I am unintelligent even though I write well.  Until they see me writing, it is not what they assume.  What good is awareness if it doesn’t tell people the truth?”

Ariane:  “What is the truth?”

“The truth is, so much of what we perceive compared to another, isn’t known.  People see me, but don’t understand what they are seeing.  I want people to know what it is like to have smart thoughts, but not be able to prove it.

“No one wants to be treated with impatience.  I am happy when people are aware of how bright I am.  Maybe they have a special light bulb for that.  Shine some awareness on those of us who can’t talk the way we think.”

Texas ~ September, 2013

Texas ~ September, 2013

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Posted in Autism, communication, Parenting

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Talking By Writing

Posted on March 27, 2014 by | 25 comments

*Emma gave me permission to write about the following…*

Every Tuesday afternoon I go to Emma’s school where Emma and I do a sample lesson, or Emma answers questions from staff or sometimes someone wants to share what they worked on with her and what her answer was.  As Emma “talks” by pointing with a pencil to the letters on a laminated letter board she twirls her string, and often, while she is “talking” by writing, she is also talking, as she describes it, “with my mouth” at the same time.  When I mentioned this to her at our last training session she smiled and wrote, “It is hard for non autistic people to multitask as well as I can.”  Which was one of those frequent – oh-my-gosh-Emma-you-are-so-fabulous – moments, because, really, not only does she have a wickedly wonderful sense of humor, but whoa(!) how right she is!

Later Emma wrote in answer to the question, “Is it problematic for you to switch from the letter board to a qwerty board, she wrote, “No.  It’s not a problem.  Is it hard for you?”  I was so taken aback by her response, because, honestly I had not ever considered that it isn’t a problem for me, so why did I assume it would be for her?  And yet, I have.   This was yet another reminder to me of how I presume competence as best I can with all that I know and yet, am humbled by constant little nudges urging me to go farther.  How beautiful is that?  Seriously?!

When I began witnessing people who use spoken language like my daughter does or who do not speak at all, but write, often poetically, often beautifully, I was astonished.  It was unlike anything I had ever seen before.  It’s been close to two years now since that first time I witnessed in real life someone communicating this way.  At first I was so incredulous, all I could do was watch and try to take in what I was witnessing.  After many encounters, repeated by so many people, men, women, teenagers, boys and girls as young as seven or eight I went from shocked amazement to a more calm feeling of  excitement, but even now, having spent nearly every day watching my daughter write this way, I often still feel like I’m in a dream.   It is as though I have been allowed into another dimension, and it is more beautiful than anything I ever believed possible.

"Talking" with the letter board

“Talking” to Soma using the letter board

 

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Posted in Autism, communication, Parenting

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On Being Judgmental

Posted on March 26, 2014 by | 61 comments

The other day a parent felt I was being judgmental because of my Demanding Speech post.  I felt terrible that was her take away from the post, but I also understood why she felt that way.  One walks a fine line when criticizing current therapies or suggesting we do things differently while not sounding preachy or judgmental to those who feel the very thing I’m criticizing has helped their child. And I have to admit here that in writing the previous sentence I initially wrote, “suggesting we do things better for the sake of our kids…” which, yeah…  that sounds judgmental and yet…

So how do we protest, how do we talk about things, things we feel outrage about, things we believe are wrong without sounding like all those “autism experts” I so often criticize here on this very blog?

And the only answer I have, for myself and anyone else, is – stay open to other points of view, be willing to listen and learn.  But how do I speak my truth while understanding that what I say may upset some?  I don’t think it’s possible and I’m okay with that.  Not everyone is going to agree with me.  That’s okay.  I don’t agree with the vast majority!  But what I won’t do is stop talking about all of this.  I won’t.  And while I talk about all of this, people comment and email and reach out and give me feedback and many times after reading what they’ve written I rethink my position. I change, I grow, I learn.  All of this is a process, and by that very fact it means that what I believe, is in a state of constant flux, there’s movement, more to learn, more to understand.

I know what it feels like to feel another person is judging me.  It isn’t a great feeling.  And it doesn’t help me understand the other person’s point of view and it definitely doesn’t make me feel particularly inclined to stick around to hear what else they might have to say.  In fact, when I believe someone is judging me, my visceral response is to retreat or fight back.  But, if I can let go of that initial desire to flee, I often learn, even if it is a lesson in verifying what I already thought.  The most important thing I can do is not preach, not convince, not judge, but speak honestly about my experience.  If that resonates with others, great, if it makes people angry, so be it, if it alienates some, okay, but this blog is about our experience, mine, Emma’s and Richard’s.  I don’t speak for anyone but myself.  I don’t pretend to know what Emma’s experience is, even when she writes about it here.  The best I can do is interpret it, respond to her words, talk about what it means to me and ask more questions, but that’s it.  The same goes for my husband, I don’t and cannot speak for him.

And in the end, that’s all any of us can do.  I hold deep convictions about much of what I see going on with autism.  I object to most of what is commonly believed to be the “truth”.  Yet I also know I continue to get things wrong.  I have tremendous humility when it comes to all of this.  I am constantly learning.  People, usually Autistic people, are generous enough to share with me their experience of things and it changes my thinking.  I listen. I revise.  I tweak my constantly shifting beliefs.  I ask questions.  I continue to learn more, I realize how I haven’t gone far enough in my thinking.  I  dig deeper.

But when I am in a room where a teenage boy is being watched like he is a prisoner while eating his lunch, pelted with questions he cannot easily answer by speaking, his favorite food, in this case, rice, withheld until he finishes some other food, again in this particular case fresh, cut up fruit, overseen by someone else, whose only real power is that they can speak easily while the boy cannot, spoken to with barely concealed impatience and irritation, I’ve got a problem with that.  When I see a group of people being treated as unequal, with less respect simply because their neurology is in the minority, I feel physically ill.  When someone who cannot communicate through spoken language is treated as incompetent I feel sick.  When people speak to my daughter or speak about her, often in front of her, with exasperation, irritation, barely disguised annoyance, I feel enraged.  When a human being is treated with condescension by another human being simply because that person is deemed less intelligent regardless of whether this is true or not, I am motivated to speak out.

This is personal, it isn’t just some issue I feel strongly about.  Do I feel judgmental?  Sometimes, but more often I feel  sad.

What follows are a few photos that make me happy…

Henry and me laughing as Emma tries to convince Henry that the water isn't freezing cold

Henry and I laughing as Emma tries to convince Henry that the water isn’t freezing cold

My friend Ibby

My beautiful friend Ibby.  Photo taken by Emma

One of my favorite photos of Emma as a baby, because even then her personality shines!

One of my favorite photos of Emma as a baby, because even then her personality shines!

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

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Some Thoughts on Stereotypes and Empathy

Posted on March 25, 2014 by | 34 comments

Stereotypes are more problematic than not and yet most people, even though they may be unconscious of this, behave according to what they’ve been told or have observed to be true, even though it may not be true.  So, for example, if we are told Autistic people lack empathy, we will unconsciously be on high alert for any example of this.  In doing so, we behave in accordance with the very stereotype we are critical of.  In other words our own empathy suffers.

In the case of war, where we are fighting an “enemy” this type of stereotyping is actively sought and pursued so that those who are on the front lines can justify their actions.  We are told the enemy are “radicals” or “terrorists” or “fundamentalists” or “extremists” or unduly aggressive, thus justifying our own aggression toward them, which is seen as “good” and “necessary”.  Often we are told the enemy is deceitful, even “evil” or “bad”.  Stereotyping is usually negative, but not always.  It is a way to claim pride and feel a sense of belonging to one group, while seeing the other group as different, lacking understanding and often threatening.

To take this a step further, the people, usually a group of people who are not the majority, such as those who are being grouped into the “lacking empathy” category, may also internalize this idea and be on the look out for instances where they “lack empathy.”  And yet, most of us can find examples of this if we look hard and long enough, times when we have behaved in ways that would be seen as “lacking empathy”.

Empathy is both a feeling and the ability to sense another person’s emotions as well as imagine what they might be thinking or feeling, coupled with the ability to communicate all of this.  If communication is even remotely an issue, expressing one’s empathy will be difficult.  If you are in a country where the spoken language is not one you understood or know, its culture one you are not familiar with, would you be able to adequately express the empathy you felt in a way that would be recognized and understood?   Is it possible you would be misunderstood and labeled as something that you are not, simply because the cultural norms did not come naturally to you or you had not learned them and could not express yourself in a way that the other group recognized?

Additionally being on the defensive, feeling constantly attacked and criticized might also erode your ability to express yourself.  Feeling anxiety, judged, and ill at ease might put you on high alert.  It’s really tough to feel for other people when you are in a state of almost constant attack.  This is counter intuitive to all human beings regardless of their neurology.  But saying that those who are under almost constant attack (and for those of you who will argue that this is hyperbole, please know I am not suggesting every single person whose neurology is Autistic is feeling attacked, rather I am pointing out that many are and have been saying so for quite some time now) lack empathy is an interesting twist, exonerating one’s own actions and part in all of this, while holding another to a higher set of standards.

While stereotypes may help one identify with a specific group, they are largely negative and encourage assumptions that, more often than not, exclude rather than include.   I keep hoping we are heading toward a more inclusive society, but so many of the current debates suggest otherwise…

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

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

This post was inspired by yesterday’s post over on  Diary of A Mom, that Jess alerted me to.

Related Links from others:

Empathy as a Form of Communication by Michael Forbes Wilcox
Not Guilty by BJForshaw
I am in here by Mark Utter
The Sound and Worry By Arianna
Inventing Empathy by M Kelter

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Posted in Autism, Autistic Role Models, Parenting

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“How Did You Learn To Read?”

Posted on March 20, 2014 by | 29 comments

A few days ago someone asked Emma, “How did you learn to read and spell?”  Last night, in response to this question Emma wrote, “I learned by watching the words my mom read to me.”  She went on to write, “I was able to read many years ago and could write, but didn’t have any way to show it.”

I asked, “Were you able to read as a very little girl?”

Emma wrote, “Yes.”

“As a toddler?”

“Yes,” Emma wrote again.

What is interesting about this is that for years, when Emma was very young, I assumed she didn’t like being read to because when I tried she would grab the book, insist on flipping the pages faster than I could read them, and generally seemed (to me) uninterested.  But from what she wrote last night, it suggests I was incorrect about these early assumptions or at least was partly incorrect.  I am no longer shocked by all that I didn’t understand.  It no longer surprises me to find out, even now, how wrong I was and continue to be about so much when it comes to my daughter.

Because Emma did not sit quietly while I read to her, I thought she didn’t like being read to.  Because Emma preferred holding the book and would turn the page before I had time to finish reading the words I assumed she wasn’t interested in the story.  Because Emma protested if I tried to take the book from her to continue reading, I assumed she wanted to be left alone.  Because Emma seemed distracted while I read, I believed she didn’t like the story, didn’t care for the book, didn’t like books in general.

How would I have viewed her various therapies, preschool, and later grade school, had we understood that she already knew how to read at such a young age?  Our decisions on how to proceed, our opinions regarding what others told us, so matter-of-fact, so sure of themselves… who knew how wrong they all were?   How wrong we were?

People say things like – parents know their child better than anyone.  In our case no one knew our child better than anyone.  We didn’t.  All those therapists who worked with Emma didn’t.  All her teachers, everyone who came in contact with her, not a single person during those early years ever said, “I’m guessing she already knows how to read” or “maybe she already knows, but we haven’t found a way to help her show us all she knows.”  Emma’s need to move, her inability to consistently say out loud what she intends, her deep need for sensory input, her attempts to regulate herself, none of that was understood by anyone, including us.

Had we not begun to find ways for Emma to communicate through the written word, had we insisted on her “speaking,” we would continue to be in the dark. All the things emphasized in  school for a child like Emma who is physically capable of articulating words made us believe spoken language was what we needed to concentrate on.  What we are seeing is that the less we focus on her speaking and the more we focus on her writing, the more she is speaking.

“Hey Em, do you want to put the smaller string in your backpack, just so you have it?” I asked as we headed down to meet her school bus this morning.

“N” “O” Emma said, as she bounded toward the elevator.

A self portrait in the making

A self portrait in the making

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Posted in Autism, communication, reading

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When the Body Does not Obey the Mind

Posted on March 18, 2014 by | 36 comments

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”

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Posted in Autism, communication, Parenting

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“Put it on the Blog!”

Posted on March 17, 2014 by | 15 comments

“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…

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Posted in Autism, Education, Parenting

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When Time Stands Still

Posted on March 13, 2014 by | 12 comments

After publishing yesterday’s post, “So Many Kids Are Just Like Me” I added a video of Emma writing those words and more.  I hadn’t added it when I first wrote the post because Emma hadn’t given me permission yet and we were still trying to get the video uploaded, ran into problems with the picture being condensed and other issues.  In any case, for those who want to view it now, you can.  On a personal note, I’ll just add that this video makes me feel very squirmy because it does not capture the playfulness we usually have together, and I’m hyper aware of the anxiety I was feeling while we were taping…  Also the video does seem to be taking longer than it should to load, at least it is on my computer, but Emma has said she’d like to tape more, so I’m hoping we will get better at uploading as we continue.

My friend Alex commented on yesterday’s post about the impact of watching Emma write, as opposed to reading about it.  It was exactly for this reason that we decided it was important to post the video.  There is nothing like seeing in real-time another person writing this way.   No amount of words, no matter how well phrased can describe this process the way watching it in real-time does.

I will never forget that moment at the Autcom Conference in 2012 when I watched a boy, younger than Emma is now, write such insightful and profoundly wise comments  that his mother then read out loud during a presentation.  It was that moment when I thought to myself – maybe, just maybe my daughter has thoughts like this, and we just have to find a way for her to express them.  It makes me cry with gratitude thinking about that moment not so very long ago.  No one could have convinced me then that just a year and a half later we would be where we now find ourselves.

It is inevitable that there will be people who say things like, “well it takes too long” and  “how can this work in a class room?”  But as a parent who has wanted nothing more than to know what my daughter was thinking, who believed despite what the majority of people believed and were telling us that maybe, just maybe they were wrong, watching Emma write is when time stands still.  The excitement I feel when she begins to point to a letter is like nothing I’ve ever experienced.  Each letter she points to is a tiny gift wrapped in beautiful paper, as the paper peels back to uncover the word inside the world and everything in it stops.  It is a sensation like none other.

To my daughter, who works so very hard to accommodate my need to hear her experience of the world put into words, I thank you.  Every single time you do, even though you feel it’s tedious, I thank you.  Gratitude does not come anywhere near my feelings.  There are no words for this.  And I know this is a tiny glimpse into what you, Emma, feel every time you are asked to put into words your thoughts.  Words can’t come close…  finally I understand…

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

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“So Many Kids are Just Like Me”

Posted on March 12, 2014 by | 32 comments

“I am smarter than most people think.  So many kids are just like me.”

Emma wrote this yesterday in response to my question, “What would you like teachers, who want to teach Autistic kids, to know?”

http://youtu.be/rtfJr46S7NQ

There are a number of young people who write to communicate things that they cannot with spoken words, just as Emma does.  Many of them are starting blogs of their own, some have parents who have blogs and like Emma they are beginning to take ownership of those blogs.  On the “Resources” page here on Emma’s Hope Book I’ve listed a great many blogs beginning with those written by non-speakers, or people who write to communicate.

When Emma wrote “so many kids are just like me” I thought about how when Emma was diagnosed I knew of none (of any age) who wrote to communicate.  The entire concept was completely foreign to me.  In fact, and I hate admitting this, I hadn’t spent any time considering neurology, literacy, language, or which parts of the brain process language.  I remember being confused by the idea that someone who didn’t speak, could still read.  I’ve come a long way!

I would like to take the opportunity to list here just a few blogs that I personally know of where people around or near Emma’s age are writing to communicate.  This is by no means a comprehensive list and I welcome any additions, which I will add here and on the resources page as they come in.

Oliver – Day Sixty-Seven
Philip – Faith, Hope and Love… With Autism 
Aidan
Cindi’s Blog
Henry Frost – Ollibean
Matteo – Matteo’s Loving Blog
Ido – Ido in Autismland
Joey Lowenstein
Nick – Teen Typer

“So many kids are just like me…”

Emma with her friend Henry ~ January 30, 2014

Emma with her friend Henry ~ January 30, 2014

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

Posted on March 7, 2014 by | 25 comments

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

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