Poetry is ballet in words.
Graceful, agile words, yawning and leaping while whispering and shouting all at once.
The ending is the beginning
like water colors
I had no access to any of it
no way to share the beauty
alone
the dance
with no one to answer or interact
I was alone in the intense happiness
but now
I can choose to dance with others
when I want.
Posted in Autism, autistic, communication
Tagged alone, ballet, Communicating, dance, happiness, joy, non-speaking, poetry, speaking, together, Typing, unreliable speaker, Words, writing
This is Merlin
Nothing vanishes without questioning Merlin’s participation in the disappearance. He never admits to wrong-doing, but instead greets the attention with purrs. Even dog lovers fall under Merlin’s spell, charming the most biased minds to rethink what they had assumed true of all cats.
Merlin is unusual because he plays fetch and follows his favorite humans around with devotion. If you don’t like cats it is because you have not yet met our Merlin.
But if you ever lose something, don’t blame Merlin. He had nothing to do with it.
Merlin approved this post. 🐾
Where’s Merlin?
Merlin among the cookie jars
Posted in Autism, Creative Writing, Parenting
Tagged assumptions, Autism, autistic, cats, cats vs dogs, creative writing, essay, homeschooling, Parenting, pets, RPM, Typing, typing to communicate, unreliable speakers, unschoolling, writing
Outside looking in on a world with a different reality.
There is room for all.
Benign feelings contradict human thoughts about survival.
We treat others with care and feel the joy that comes with that. We treat others harshly and then pain is felt by both.
Problems arise when people take pleasure in other’s pain. Words cause joy, but also can cause pain.
Better to sing and dance!
This is what Emma wrote this morning in answer to my question, “What do you want to blog about this morning?”
We have been studying gene mutation, evolution, Darwin and how species adapt to their environment. We have also just finished reading Romeo and Juliet. I see the influence of all of these topics as well as Emma’s own unique and exquisitely compassionate take on this world and life.
Emma’s Bowl made in ceramics with cookie cutters and then painted.
Typically in school life there is a certain amount of busy work that one is expected to do, forms that need to be filled out (repeatedly), words that you are expected to say whether you mean them or not, because it is what we as a society do. “It’s just the way it is,” we are told.
However, let’s say you cannot speak and must type to communicate. And let’s say you are in school where upon arrival you are expected to sit down, state write your name, what day of the week it is and the date. You are also expected to say write at least one sentence about the weather and another sentence to describe how you’re feeling. Now let’s also pretend that typing is really difficult for you and it takes you some time to do so in the best of circumstances.
For example, writing five sentences may take you ten minutes or more. You are in a classroom with other students, most of whom speak and cheerfully say their name, the day of the week, the date, what is going on weather-wise and how they feel in under 30 seconds. Go ahead, time yourself and see how long it takes you to give that information. I just did -sixteen seconds and I didn’t have to think about any of the information I was giving for more than 5 seconds. I did pause for three seconds to figure out how I would describe my current mood, and probably could have used a more descriptive word than “okay” but for the purpose of this exercise, just went with “okay” and shrugged. 🙂
But what if you can’t do this. You cannot find the words readily and when you do, you blurt out someone else’s name or maybe you get the day of the week wrong and some of the other kids chuckle under their breath, but your hearing is excellent and so, of course, you hear them. Maybe you see that the weather is beautiful and so you say cheerfully, “Pool!” and there’s more laughter or worse confusion and silence. The only way you can prove that you know any of this is by typing, by pointing to one key at a time with the index finger of your dominant hand, and fortunately you’ve been given the help you need to be able to do this, maybe you’re one of those lucky few that even has someone who is with you who holds the keyboard for you and gives you encouragement.
As you look for the key or the first letter you become distracted and by mistake you hit the wrong key. You meant to press the S for September, but you hit the d, right next to it instead. Hitting the d completely derails you, but you know there’s a month that starts with the letter d so you spell out December. Maybe everything breaks down from there, or maybe you’re able to tough it out and with some patience and help you are able to get back on track, you type the date and the day of the week. You must constantly check in and remind yourself to keep on task. You must concentrate and not become distracted. You know you must write about the weather, something you don’t particularly care about as you know you won’t be able to go outside to enjoy it anyway, so why does the weather matter?
Still you persevere. You say that it’s sunny outside and finally you’re in the home stretch. You have to write a sentence about how you feel. That’s easy. You know you must write that you’re happy because last time when you wrote that you were feeling frustrated there were questions, questions you couldn’t answer and so you write, “I am happy.” By the time you are ready to hand in your paper you look up and find the classroom is empty. Everyone has gone to do “movement” or morning yoga or they’ve split into smaller groups and are reading. Those five sentences that were asked of you, those sentences that you labored over and now have finished, no one seems particularly interested in reading.
The above scenario is imaginary, but I can still remember the busy work we had to do in school that was very similar to what I’ve described. It was easy for me. I answered the questions without thinking twice and I answered them in under 20 seconds. But my daughter cannot.
If you are going to ask someone who cannot use spoken language to communicate easily, or they cannot speak at all, but can type, even though it may take them five or ten minutes to type a sentence, you better be sure what you’re asking them to write is worth their time and energy.
Typing To Communicate
Emma typed that she wanted to write – “How about a story about what we attach ourselves to when we are most afraid.”
“In no particular place that anyone has ever heard of, there lived a girl who was friendly and loved to laugh. She had a body like any other girl her age, but it moved in ways that were unusual. This caused people to stare and even made some think that she wanted their mean looks and comments.
“Do you know anyone who likes to be the focus of such hurtful and nasty attention?
“No. I do not think anyone enjoys being made fun of.
“The fun is a question I do not have an answer to. Laughter is pure when it hurts no one.”
By Emma Zurcher-Long
August, 2014
Posted in Autism, Bullying, Parenting
Tagged afraid, autistic, bullying, creative writing, difference, fear, joy, laughter, making fun, non-fluent speaker, non-speaking, writing
Preface: My mother has been tracing our family’s history for many years now. Many of our ancestors on her side of the family were German and wrote in German script. She has been painstakingly translating the letters they wrote and kept. During our recent vacation my mother told us about some of our ancestors and the lives they led. All of it was fascinating.
This morning I asked Emma what she wanted to write about. Emma typed, “I want to write about recent stories heard.” I said, “Okay. What do you mean by that? What recent stories are you referring to?” Emma then typed the following story.
“I will write about an ancestor who is imaginary.
“Long ago in another era there lived a writer who did not think in words. She was fiercely independent in an age when this was not viewed favorably. She was believed to be peculiar and could not say what she thought as words escaped her, fleeing to dark, secret places out of reach. The only way to capture the words was by writing them down, restraining them to the confines of a piece of paper. This made her sad for the words that wanted nothing more than to run wild and free. So she spoke and the words rushed out, but other people did not understand and thought she needed to be controlled. She was my ancestor.”
Our Ancestors – Top and going clockwise – Emma, Anina, Antonie and Marie
Posted in Autism, Creative Writing, Parenting
Tagged Ancestors, autistic, creative writing, genealogy, non fluent, non-speaking, Parenting, Words, writing
“No one knows how to help us.” This was what I once said to my husband. It was many years ago. So many, I no longer remember the year. Along with that realization was this one – “We are in this alone.” And while, at the time, that thought terrified me, it was the beginning of finding another way. It was the moment when I realized all these people we were looking to for guidance, didn’t know what was best for our daughter, even when they believed they did.
In the beginning we were told how fortunate we were, our daughter was “mild” we were told and if we followed their advice – an aggressive implementation of ABA, Speech Therapy and Occupational Therapy – she would be in a regular classroom by the time she entered kindergarten. She was still two years old when she was diagnosed and we knew nothing about autism. We did as we were told. We were assured she would “skyrocket.” We fought to increase the hours of therapy, we went to the team meetings, we took notes, we learned how to “play” with her using ABA’s techniques, we monitored her and kept charts. We filled notebooks with our observations and we waited for her to “skyrocket.”
When she turned three we enrolled her in an ABA based pre-school. By the end of that school year I no longer believed all that I was being told. The therapists were no longer assuring us she would “skyrocket.” Now words like “red flag” were being used to describe her behavior. She had “behaviors” and these were being pinpointed and noted with alarming frequency. We were getting reports of non-compliance, an inability to “use her words” as though she was being defiant and then she began to self-injure. No one understood why. Everyone was baffled.
And now, so many years later, I look back on those years and it all seems so understandable. They say hind sight is 20/20, that looking back we can easily understand that which was once incomprehensible. I understand now. We didn’t appreciate what was going on. We didn’t think we understood our child, and for the most part we didn’t and we kept looking to others to explain her to us. The explanations they gave us, we believed. We thought, since we didn’t understand and they seemed sure that they did, they must be right. It took several more years for me to realize they didn’t and they didn’t know how to help us or her either. When the methods they believed in didn’t do what they believed should and would happen, they blamed us and they blamed her.
Emma continues to remind me that “regret is not needed” and she’s right. I am working hard on that one. I cannot describe someone else’s experience, I can only write about mine. This was mine. As the mother of a daughter who was once believed “mild” and later “moderate” and finally “moderate to severe” on autism’s vast spectrum, we have learned a great deal. And while many may not derive any solace in what I’m about to say, I would have. No one can predict what life holds for your two, three, four, five, six or seven-year old child. No one can predict another’s future, there are too many variables.
That my daughter has some spoken language is, and was, the single biggest red herring for those who meet her. It never occurred to us that all that speech therapy, focusing on spoken language, would ultimately be unhelpful. I knew nothing of AAC (Augmentative and Alternative Communication) devices or methods and as spoken language seemed to me to be the ideal, the idea of her using something else honestly never crossed my mind. Why would I encourage her to use something else to communicate if she could speak? When, after years of speech therapy focusing on spoken language, she still couldn’t have a conversation with us, our answer was to try more, push harder and it would come.
So many people ask what we would have done, knowing all we know now. This is a question that is specific to my daughter, but I know there are other children who are similar as I’ve met so many of them. I would not have waited so long to begin using other forms of communication. In fact, this would have been the thing I would have concentrated on right away. There is no evidence that using an AAC device will have a negative effect on spoken language acquisition, in fact there are studies showing the opposite is likely to be true. Had my daughter been able to communicate at an earlier age, many things would have changed. The most important one being that we would have understood much earlier all that she knew and understood. This may strike some as a little thing, but I can assure you, had we realized this early on, had we believed this right away, it would have changed every single decision we then made. Not to mention the massive reduction in our stress, anxiety and fear.
There is so much we are learning and still have to learn, but we are no longer alone. We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter. And of course, our daughter, Emma whose patience, love, wisdom and endless compassion is teaching us more than any.
One year after the diagnosis
Posted in ABA, Autism, Parenting
Tagged AAC, Autism, autism experts, autistic, communication, communication methods, diagnosis, fear, high functioning, language, low functioning, mild autism, moderate autism, non-speaking, Parenting, severe autism, Stress, worry, writing
First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.
Emma ended our presentation by singing one of her favorite songs, You’ll never see me again. We uploaded this separately and changed it from “public” to “unlisted” as someone has already given her singing performance a “thumbs down”. As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.
We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet. In the meantime here it is, though this link may only work until we’ve made the new video.
As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause. This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time. In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.
This morning I was reminded of how Emma, when asked, “How old are you?” will, without hesitation and in a matter-of-fact voice, say, “Nine.” If I give her the keyboard she will then type, “I am 12.” When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.” She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”
I asked Emma if she was willing to say more. She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all. Words pouring forth like water after a dam break, do not pay attention to me. I am so used to it I no longer fight. I dread the smiling talkers who insist on spoken language as proof of being and serious thought. Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”
I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”
This morning, in answer to the question, “What shall we talk about?” Emma wrote:
Today I am going to talk about using words to describe things that cannot be described.
How can it be done?
It is the poet’s attempts that come closest, but even then, much is left to the reader’s interpretation.
Poetry becomes an interactive experience then, with the poet having to cede all control of words created.
Real creating asks question of all. The answers are unknowing.
From Ariane: Last night I dreamt I could not speak. I was at the airport, leaving for the Far East and realized I had left my passport at home. I kept reminding myself this was a dream and that I could recreate the story line. I didn’t have to stay in the feelings of intense anxiety the dream was provoking. I could speak if I could just change the dream. I didn’t have to follow the dream’s labyrinth. Straining against all logic, I tried to fly, literally, back home, but kept being pulled back into heavy traffic and the anxiety of knowing I would never make it home and back to the airport in time for my flight. Not being able to use my voice to tell the cab driver where I needed to go, without pen or paper to write, I felt intense frustration and then rage.
Knowing I would miss the flight, knowing my family was at the airport waiting for me, and the nagging, ongoing critique of how foolish I was to have forgotten such an essential document as my passport made me finally wake up. It was one of those dreams where you are so horrified by it, waking at three in the morning becomes the more attractive choice, superseding the desire to continue sleeping and the knowledge of the inevitable consequences of waking at such an early hour.
Those feelings, like so many incessant and blaring alarms, jangle the nerves, and linger long after sleep has yielded to wakefulness. And then Emma wrote the above and I was reminded, once again, of how often words fail us. How often things said are misinterpreted, or said in ways not meant, or how even for those of us fluent in spoken language, words can become a kind of cage from which we cannot and do not easily escape.
Richard has been editing the video of our presentation. Hoping to post it over the weekend or on Monday…
Emma chose this image after typing “words” into Google search
Posted in Autism, communication, Parenting
Tagged Anxiety, autistic, dreaming, dreams, language, poetry, presume competence, Speech, spoken language, Stress, unspoken language, Words, writing
Written by Emma Zurcher-Long
“Today I will tell a short story about a girl who wanted to speak to the wind. She listened with ears attuned to wind’s song, and desired to speak with its power and beauty. But the wind was not used to listening, and the sounds she made were ignored. People heard her and told her to be less noisy. The wind was loud, yet no one attempted to quiet it. The girl understood the wind’s voice and eventually it heard her. Neither one spoke with words.
“The End”
Emma chose this image from a google search “Girl in the wind”
This morning I asked Emma what she wanted to work on. She wrote, “We could write a blog post.”
“Okay, what do you want to write about?” I asked.
“I could make up a story about an Autistic girl who means well, but is not believed smart,” Emma wrote.
“Okay. Good idea,” I said.
Emma wrote, “She has a mind like a magician’s hat. Mysterious things are inside. When revealed, people gasp in astonishment. Tied to the words regular people can hear are lots of other things they miss.”
“Like what?” I asked.
“All sorts of pleasing sounds, colors and tastes that are healing, but only a special few can experience this. As loud minds drown out hers, she must work harder than most to be heard. The End.”
This is the image Emma chose to accompany her story
Posted in Autism, Creative Writing, Parenting
Tagged autistic, communication, Education, Parenting, presume competence, Rapid Prompting Method, writing
We are homeschooling, or unschooling or… I actually don’t know how these terms are defined and haven’t had time to do the research necessary to speak about any of this with any authority, let alone knowledge. In fact “time” and what that means has kind of blown up in our faces as there never seems to be enough of it. Richard and I are scrambling to make this work, while making jokes about how many clones we would need to do so, if cloning were an actual thing. All of this is very new and we have not fallen into a routine yet. I guess the best description of what we are doing at the moment is – winging it. We are winging it, though this will change as time goes on, we think. We hope. We expect. What I can say is that Richard asked Emma what part of history she was interested in learning and she chose ancient Egypt and ancient Rome. This then led to several lessons on the Druids. Who knows where all of this will lead next!
Meanwhile, Emma and I have embarked on the exciting adventure known as the German language, as per Emma’s request. We had a particularly hilarious conversation a few weeks ago when Emma first brought up her interest in learning German. I was somewhat incredulous and kept saying things like “Really?” and “Are you sure you want to learn German?” and “What about Spanish or French?” But no, Emma was not to be swayed, so German it is. And guess what? It is SO much FUN!! We are using a couple of different programs, one is Duolingo, which was recommended by a couple of people. It’s a free online language program. Did you know all nouns in German are capitalized? Why? Who knows, lots of theories, but there is no one answer as to why, that everyone agrees with.
In addition Emma is working on several writing projects. One is a chapter idea, in which we will write alternating chapters. Emma wrote, “How about starting on what you presumed parenting would be before I was born.” I said, “Can you ask me questions, things you want to know?” Emma wrote, “Very happy to ask.” I said, “And what will your chapter be about?” Emma wrote, “What I presumed the world would be like when I was a baby.” I cannot wait to hear what she has to say about that!
We continue to make our way through Malala’s autobiography, I am Malala about the Pakistani girl who fought for her right to have the same education as boys and was shot by the Taliban. This has led to some terrific discussions about advocating for one’s rights, oppression, prejudice, violence, silencing, education, and the lack of. Recently Emma wrote, “Her life is unlike mine.” (Referring to Malala.) “But the oppression is similar to what I have experienced.”
While I continue to go through periods of abject terror at the thought of what we have undertaken, these moments are tempered with the excitement and joy I feel knowing that pulling Emma from school was by far the best thing for her. She is ecstatic and the marked change in her anxiety and stress levels makes all of us very, very happy.
Emma chose this image for today’s post.
Posted in Autism, homeschooling, Parenting
Tagged autistic, communication, Education, homeschooling, New York City, non-speaking, prejudice, presume competence, Rapid Prompting Method, RPM, unschooling, writing
“Having a voice after years of being ignored saves me from treacherous loss. Years of nothing, makes the smart ideas percolate. It is a strong force within, waiting for encouragement.” ~ Emma
There are people who would like to silence my daughter and those like her. One person recently accused me of “exploiting” my daughter to “satisfy your own vanity and craving for attention” by publishing things Emma’s said she wants others to read. This particular person went on to write (as though to Emma), “Autistic people are irrelevant in your mother’s world. And parenting is more of a competitive sport to her than a domestic responsibility. That is truly disgusting.” And yet if I do not publish the things my daughter writes and says she wants others to read and understand, then I become the silencer. I cannot presume her competent, but then selectively do so, by not publishing what she has asked to have published.
As with my older child, we have discussed, and continue to discuss at length the internet, the importance of realizing what one says on the internet, stays on the internet. We have discussed issues around human rights and advocacy. We are currently engaged in an ongoing discussion related specifically to blog writing because of the book we are reading, I am Malala in which Malala writes about being increasingly threatened and silenced by the Taliban and how her right to an education was taken from her simply because she was born female.
There are those who say that the words someone like my daughter writes are not really hers. This is a different way of silencing, but it is as equally brutal and effective. They say that because science has not shown RPM to be an easily replicated method it is therefore suspect. They say, parents like me are so determined to believe in their child’s intelligence and competence, we will go to any lengths to “believe” even when it’s clear (to them) our children cannot possibly be the competent beings we know they are. This is the opposite of presuming competence. They go on to suggest that though (in the case of RPM, where there is no physical contact of any kind) no one touches my daughter, those nearby are able to influence, so much so that they can actually force the person to point to letters, which spell out things they do not mean to write.
People like my daughter are in a perpetual state of limbo, a kind of no man’s land, neither here nor there. For those of us speaking out, writing about all of this, giving our children a platform from which to write, we are easy targets. There will always be people who disagree. There will always be people who are threatened by ideas that confront what they believe and have been told. There will always be people who viciously attack for reasons that may or may not be apparent to those they strike out at. I’ve been fortunate and have not had many who have attacked. In fact this recent commenter is the only one who has come after me, repeatedly, with such viciousness and undisguised hatred.
But I will not be silenced, nor will I allow my daughter to be; as long as she wants to be heard, I will do all I can to make sure she is.
*Emma chose this photograph to go along with her and my words. Yes, I read this to her, before publishing. And sadly, it seems, I must also state the obvious, I do not and will not publish anything ever, that she does not want me to publish. This blog will disappear the instant Emma tells me she wants it taken down.
Emma Riding Beau
Posted in Autism, Parenting, RPM
Tagged attacks, autistic, autistic kids, communication, competence, exploitation, I am Malala, intelligence, Malala, non-speaking, Parenting, presuming competence, Rapid Prompting Method, RPM, Typing, writing
Emma and I are speaking at the upcoming icare4autism conference here in New York City, July 2nd. Over the weekend I asked Emma what she thought the topic of our talk should be. She wrote, “Let’s talk about mind/body disconnect and how that makes people misunderstand someone like me…”
I told her I thought this was an excellent topic particularly as this conference will most likely not have an audience familiar with the idea of there being a mind/body disconnect or if they are, what that actually means. In fact this is one of those topics I wish I’d known about from the beginning. It would have been so helpful had someone explained to me, when Emma was diagnosed, what it meant. Perhaps more than anything it is the body/mind disconnect that caused me to make all kinds of assumptions about my daughter, which I now know were incorrect. Because she did not look at me or turn her head toward me when I spoke to her, I assumed she wasn’t listening. Because she said things that I couldn’t understand or were disconnected from my questions, I assumed she didn’t understand the question. I believed the words she spoke were the words she intended and meant. It didn’t occur to me that I was wrong. It didn’t occur to me that she was thinking a great many things, but had no way of communicating all that she knew and thought.
Both Ido Kedar and Naoki Higashida talk about how their bodies do not do as their brain requests. Tracy Kedar, Ido’s mom, writes in the introduction to Ido’s book, Ido in Autismland, “Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. You want to speak and you know what you want to say, but either you can’t get words out, or what comes out are nonsensical sounds or the same embedded phrases you have said thousands of times. Imagine your face staying flat and blank when inside you are furious, sad, or wanting to smile in greeting.” Later Tracy writes, “Since you cannot express your thoughts, only you know that you are intellectually intact.” And still later Tracy writes, “Imagine being stuck in an educational program, year after year, that is designed for a preschooler who learns slowly. You are bored, frustrated, angry, misunderstood and more than a little hopeless.”
Emma has written about some of this before, but in the next month will be writing about her experience with the “mind/body disconnect” more. I will be reading her thoughts and insights at the conference and adding my experience of what I once believed. Emma will then answer questions from the audience time permitting, by writing on her keyboard.
I asked Emma what she wanted to call our presentation. She wrote, “Let’s call it – Rethinking Your Beliefs About Autism”
And so we are…
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's Hope Book 