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

The Power Of Understanding

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now.  Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”.  Both agreed.  What has occurred as a result is nothing short of incredible.  Understandings have been forged, exchanges of ideas and beliefs have been made.  They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer…  Many people take these types of conversations for granted.  But we do not.

Listening and learning…

Nic & Em

The YouTube Video of Ari Ne’eman and Emma Zurcher-Long

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).   

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on.  At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic.  As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By  the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?”  (I know, talk about asking the obvious…)

I am painfully aware that  by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media.  If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change.  So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made.  And what about those who do speak, are their feelings not important?  These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear.  Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.”  I suggested.  Once outside I asked Emma if she wanted to discuss the video Ari was referring to.  Emma wrote, “The video has a mom who is lost and cannot rationalize hope.”  Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.”  Read that again -

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced.  Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

“Self-Knowledge Avails Us Nothing”

There are things I forget to talk about with my daughter.  Things that someone will mention or I’m reminded of in some other context and suddenly I’ll think – Gosh, why haven’t I discussed this with her?  These are things a parent would typically talk to their child about, but that because my daughter cannot easily communicate her thoughts I, without meaning to, do not immediately think to talk about with her.  This is the impact my limiting ideas about language and not being able to communicate through spoken language have on my daughter.  It doesn’t always occur to me to discuss with her a great many things until I am reminded.   Out of respect for my daughter I am keeping this post purposefully vague.

I am moving along here, learning as I go and continue to make a great many mistakes.  I have never deluded myself into believing the – making mistakes – part will end, the most I can hope for is that I won’t continue to make the same mistakes, but even so, I do.  I seem to need to repeat the same lesson many times before I am able to make lasting change.  It is a mistake to believe non Autistic neurology does not have trouble with transitions, generalizing information, learning something taught and immediately changing behavior to demonstrate this knowledge.  I will often know something, yet it will take many attempts before I am able to put that knowledge into practice.  You could say that my actions lag way behind what I know or believe.

In the 12 step rooms there is a saying – “self-knowledge avails us nothing.”  What is meant by this is that we can intellectually know something and yet that knowledge does not produce a change in the way we behave.  The only way to change is by doing something differently.  How easy that sounds and yet, look around, people have struggled with this since the beginning of mankind.  Addiction is the obvious example, but there are other, far more subtle things that are great examples of how we want to do something – eat better, exercise, be polite, more friendly, etc -  we know it would be better if we did whatever it was, only to find ourselves unable to do it.  Behavior modification, were it as helpful as many seem to believe, should have helped anyone who has ever attempted to “just stop” and yet it has shown itself as useless.  Unless behavior modification is used in its most extreme form, which I would argue is not dissimilar to torture, in which case it will and does produce short-term change, though at a terrible cost to the person being “treated”, it does not help those of us who are trying hard to change our less than ideal ways of coping with discomfort, fear, pain, and suffering.

Change is hard.  Changing the way we act is even harder than changing a belief.  Yet, we expect and ask children to change all the time.  We tell them something and then when they do exactly what we’ve asked them not to do, we wonder why.  Except that they are behaving the way most of us behave.  Adults are no exception to this.  Now add a neurology that makes communicating more complicated and all kinds of misunderstandings develop.  Conclusions are drawn, ideas and theories are created to explain, and yet…

Recently Emma was asked about something that happened at school.  She wrote, “if every time you tried to speak, the wrong things came out of your mouth, how would you feel?”  We live in a society where people knowingly say and do hurtful things all the time, yet those people are not put in institutions, given random medications against their will, labeled as “low functioning, ostracized, given electric shocks, condemned and treated as though they were criminals.  I’m thinking of a number of radio and talk show hosts whose ratings soar the more outrageous and venomous they are.  These people are rewarded for such behavior!  I’ve never met a parent who said, “I want my child to grow up to be rude, disrespectful and a bigot.”  And yet…

Today I will suggest a few topics and ask both my children what they’d like to discuss.

Em & N. ~ 2010

Em & N. ~ 2010

And the Winners Are…

Emma randomly chooses the winners...

Emma randomly chooses the winners…

This morning  I placed all the names of those who commented on yesterday’s post into a bowl and Emma randomly chose five names to win Barb Rentenbach and Lois Prislovsky’s hard cover book, I Might Be You

Be prepared to be blown away.  This book is absolutely wonderful.

To all the winners – Julie L., Edie, Kathy Quoyerser, Corinne Joly and Jill – I will be contacting you by email. Your book will be sent via United States Postal Service after I’ve received your address.

And for those who want to read it, but didn’t win, please consider purchasing this terrific book either as a hard cover or as an ebook available for all eReaders, or the audiobook, which I had the honor of recording with Barb and Lois in New York City last year.  I am the “voice of Barb” and documented that amazing experience ‘here‘, ‘here‘, ‘here‘ and ‘here‘.

2

without looking…

And the winners are...

And the winners are…

“Barb Doesn’t Talk” ~ Emma

I have a friend who, when they met over a year ago, Emma observed, “Barb doesn’t talk“.  “Doesn’t talk” means she doesn’t talk with her mouth to communicate the way she can and does when writing.  Her name is Barb Rentenbach and she and her therapist, Lois Prislovsky wrote a book, I Might Be You.  I’ve written about Barb and Lois before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  If you haven’t read their book, you must.  (Continue reading for a surprise later in this post about that book.)

I met Barb at the Autcom Conference in 2012 and though I didn’t know it at the time, Barb and Lois  would have an enormous impact on me that was far-reaching.  You see, it was because of Larry Bissonnette, Tracy Thresher, a boy I saw writing to communicate, and finally Barb, all of whom I met at the Autcom Conference, that I began looking into other ways for my daughter to communicate.  (You can read more about the process by clicking “How We Got Here“.)  Even though Emma can and does use her voice to speak, she has described her attempts to communicate with spoken language as, “I can’t talk the way I think.”  Later Emma wrote, “Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.”

In Barb’s most recent blog post (I urge everyone to read it) – Open Hearted Letter Quilt to Andrew Solomon -  she writes about autism, empathy, and how autistic people are often misunderstood:

“It’s like Saxe’s (1873) poem, “The Blindmen and the Elephant” where each blind man is partly in the right as he describes an elephant piece he studies, but all are in the wrong in knowing an elephant.

This autistic pachyderm will expand perceptions by presenting more pieces.”

Barb goes on to describe herself, “I don’t look normal.  I appear quite messed up and a prime candidate for nothing but pity and patronization, with a sprinkling of repulsion and fear.  I am disguised as a poor thinker.”

Still further along she quotes Emma:

“To quote my mentor Emma who is 12 (This old dog is all about learning new tricks) who wrote this by saying each letter aloud she pointed to it on a stencil board, “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”

This short video shows Barb typing just a few days ago.

Now there are some people who have suggested Barb is not typing on her own.  They believe that the person whose two fingers are tentatively touching her back are actually guiding her and that it is their voice and not hers that we are reading. This is a video of Barb writing four months ago…

And here is a video of Barb typing in 2011…

I am showing you these clips so you can see Barb’s obvious progress and please note, Barb is not a child.  I know that’s obvious, but it seems many people forget this or have trouble believing that people of all ages can and do progress.  Just as Barb works hard to become more independent while typing, so does my daughter.  Emma’s way of writing is slightly different in that no one is physically touching her and she points to letters on a letter board,  but she is working hard to move from pointing to the stencil letter board to the laminated letter board to a qwerty keyboard, with the eventual goal – being able to type on a computer regardless of who might be seated nearby.

As all these videos show, none of this is easy.  Barb is working hard and so is Emma.  Some days go more smoothly than others.  As Barb writes -

“I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time.  Please try harder later.”

For any of you who would like to have a hard cover copy of Barb and Lois’ terrific book, I Might Be You, I am giving away five hard cover copies.  Please comment below, saying something about yourself and why this book is of interest.  I will place all comments into a hat and will choose five at random.  If your comment is chosen I will contact you, via the email you use to comment, for your street address, where I will send you your copy of Barb and Lois’ MUST READ book at no cost to you and in appreciation to Barb, Lois and Emma for their hard work in bringing much-needed awareness to all who are like Barb and my daughter!

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

 

 

 

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

Respectful Engagement

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

Thoughts On Thinking

Friday evening I asked Emma whether she wanted to use the laminated letter board or a qwerty, bluetooth keyboard connected to the iPad.  She told me she wanted to write using the keyboard.  Emma has written on the keyboard during her RPM sessions with B., but this is not something I’ve attempted.  I have been reluctant to use the keyboard because Emma has done so well using the laminated letter board with me and I’m always worried about changing something that’s working well.  But when using the letter board I have to transcribe as she writes or hope that I’ll remember what she’s written, whereas with the keyboard it automatically types directly onto a document within the iPad.  Often I can’t remember what she’s written, or think I have remembered correctly, only to find out later I did not.

This was the case Wednesday night when Emma wrote in front of an audience at CoNGO.  I hadn’t stopped to transcribe her words as she wrote them, thinking I’d be able to remember, but once she’d finished the sentence, I couldn’t remember.  Afterward, when we thought we hadn’t recorded our presentation, I tried to remember what I thought she’d said – “Autism is not what parents want to hear, but I hope that will change as more people meet someone like me.”  What she actually wrote, once we found the video recording, I was disconcerted to learn, was – “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”  That is a subtle, yet significant difference.  I’m so sorry Emma for getting your words wrong.

Our goal has always been for Emma to write on a keyboard and eventually be able to write with the keyboard resting on the table, so that no one need hold it.  That she wrote both Friday evening and over the weekend on the keyboard is a huge leap forward and very exciting!!

So.  Friday evening Richard asked Emma for permission to ask her a few questions about thinking.  Now for those of you who know Richard, you will smile as you know this topic is one of his favorites.  He loves nothing more than to read and discuss thinking, consciousness, dreams, reality, and anything remotely related.  These are the topics Richard explores in his writing and the things he is fascinated with.  Richard wrote on Emma’s Hope Book FaceBook page - I “think” of “thinking” as my constantly chattering internal dialog.  I have long suspected that Emma has either NO internal dialog, or very little, and that what she “thinks” of as “thinking” must be very different from what I “think.”

Emma generously agreed to allow her dad to ask her a few questions though she did remind him that she had the timer on.

*I need to interject here that the following conversation is representative of Richard’s “thinking” and Emma’s as she describes it.  No one is suggesting that ALL people, either autistic or non autistic think as either of them do.  It would be a mistake to assume Richard is somehow representative of ALL non autistic people, though many may relate, or that Emma is representative of ALL Autistic people.

Richard:  Mom and I have this internal dialog going on all the time and that’s what we call “thinking”. How does this differ from the way you think?

Emma: I only think in voices when I am working with you (Ariane).

Ariane: Is this also true when you write with others?

Emma: Yes.

Richard: Do you see our internal dialog as an advantage or disadvantage compared to your own way of thinking?

Emma: It is more distracting than the way I think.

Richard: Tell us more about how you think. If it’s not with an internal dialogue, what is it like?

Emma: Know that I am almost always happy and take great pleasure in sounds, color, fabric.  Everything in life is beautiful if you are able to be here.

*Whoa!  “Everything in life is beautiful if you are able to be here.”  

Richard: I’m so used to thinking with an internal dialogue. It’s hard to imagine thinking without talking to myself.

Emma: Have you felt this always?

Richard: When I was a kid I didn’t talk to myself all the time. I was probably a lot happier. As I grew older, my internal dialog became stronger and now it’s there most of the time. I have to meditate or concentrate to temper it.

Emma: It’s too bad that you have difficulty.

Richard and I looked at each other and shook our heads in amazement.  Then Emma began to laugh and we joined her.

*The keyboard we are using is a Kensington Keyboard.

**A brief update on Emma and Ari Ne’eman’s presentation at CoNGO last week that we video taped, thought we hadn’t then found we had.  We have not had time to upload it and we haven’t received approval from Ari yet, so it may take a few more days before we can post all or part of it here.  Bear with us.

Emma types on a qwerty keyboard

Emma types on a qwerty keyboard

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