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
Mom prepares me,
but nothing can inoculate fear colored blue
masked in lights, shining brightly.
The terror seeps through.
Awareness disguised as tolerance is not the same as love.
An uneasy embrace may appear affectionate,
but can feel worse than a slap.
Words said with anger are not kind,
no matter what each word means by itself.
Look kindly
choose many feelings,
but please do not choose blue.
#WalkinRed2015
Wavering, derelict shouts hold different ideas about want.
Careening words push and shove their way out of my mouth,
the chatter cannot be reined in no matter how hard I try.
My mind is a starving questioner
with a body that pushes mute buttons in people’s minds.
Moments looking for connections to the two separate entities
knowing the possibilities are within reach,
if only I could beat those troublesome, noisy words back
to give the more contemplative thoughts equal opportunity.
Posted in Autism, autistic, Blogs By Autistics
Tagged communication, poetry, RPM, spoken language, struggle, thoughts, Words
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.
Ariane: What should we start our day with? German, a blog post, general writing, fiction, poetry or something else?
Emma: Just start with blog post.
A: What would you like to post about this morning?
Emma: How about the topic: Knowing many things, but having no one believe you are able to understand.
Ariane: This is a great topic! Do you want me to say anything or keep quiet so you can continue?
Emma: I will continue.
For many years this was the title of my life. It was long hours bloated with mindless screams of nonsensical searing memory words that no one understood the significance of. The feeling of pleased joy when another believes, and then astounds the non believers by interacting with their knowing, is like beams of brilliant light shouting through the dreary darkness. Diving heavy waters it cannot be described, but the word coming closest is love, and to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.
Ariane: Wow, Emma, that’s really beautiful. What else?
Emma: You can add commentary now.
Ariane here adding commentary, which is a little like being asked to perform after The Rolling Stones just rocked the house…
I am always struck by Emma’s words. It is the force with which she writes and the compelling word choices she makes that convey a depth of emotion, an intensity and complexity of feelings, as well as insights that make me stop and reread her words over and over. This paragraph took about forty-five minutes for her to write, not because she edited or had to go back and rewrite, but because that is how long it took for her finger to locate the correct key one letter at a time.
“Nonsensical searing memory words…” I so want to know more about this. Does she mean the often repeated sentences that are about the past, the words I once assumed were simply memories thrusting themselves front and center? A kind of Möbius strip of thought, like an infinity symbol wrapping around and around itself? I have learned to reside in the unknowing, the discomfort of being unsure, the scratchy realization that I cannot ever truly know, though I can make guesses and then ask if these are correct. I no longer assume words spoken are meaningless or simply memories or are scripts that are being blurted out compulsively and without thought. I’ve written about these bridges before ‘here‘. Those words and sentences that are full of meaning, but whose meaning is not immediately apparent to me upon first hearing.
“… that no one understood the significance of.” I will ask her about this later. She used the past tense and that makes me hopeful that we are not continuing this kind of awful misunderstanding. “…beams of brilliant light shouting through the dreary darkness.” Who among us does not want that feeling for those we love? Is this not what love is? Connection with another?
“… to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.”
Those who think being silent for an hour or two will give them any real insight into what it is like to not have words readily available, either by writing or speaking, cannot possibly understand. We must shift our thinking beyond the hour or two, beyond the day, beyond a month, but instead try years. Years of opening your mouth to speak, but having words tumble forth that are not what you intended, or saying something you intend only to have it misunderstood, or repeating a memory because it conveys so much that is relevant to the NOW only to be asked to discuss more about that particular memory and not what it signifies, it’s deeper meaning. To say words, to write words only to be told you do not understand metaphor. To reach out in vain to connect with a world that continually turns its back or mouths that smile with faces flooded with fear, or superiority or judgement or intolerance or disgust.
End of commentary.
Ariane: What sort of image should we put with this post?
Emma: How about a photo of the two of us. Daddy can take it.
Ariane: I was thinking we could title this post: “Knowing Many Things” and the Impact of Disbelief From Others. What do you think?
Emma: No.
Ariane: Okay. What would you like the title to be?
Emma: The Impact of Believing in Incapability
February 3, 2015
Posted in Autism, communication, Parenting
Tagged autistic, disbelief, incapable, knowledge, non-speaking, presume competence, presuming competence, silence, speaking, Typing, unreliable speaker, Words
This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.
I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views. Thank you Emma for giving me permission to post our conversation.
Ariane: I thought we could begin the day by discussing who you might like to interview and about what topic?
Emma: Is the way here, thinking, knowing, and asking about another, helpful?
Ariane: I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life. Asking is a great way to understand another’s perspective. Who would you like to interview?
Emma: Using questions to sing truths meaningfully speaks to all.
Ariane: That’s so true! Music is a universal language that can transcend words.
Emma: What did those we cannot ask, say?
Ariane: Who are you thinking of, Emma?
Emma: Those who cannot speak and have no one who believes in their ability to communicate in other ways.
Ariane: Here’s the thing though, we can ask. We may not get an answer we understand, but we can still ask and I think that’s the beginning, right? We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.
Emma: Understanding that all human beings want connection is natural and fundamentally human.
Ariane: I agree. So Em, what was it like before you were able to type?
Emma: Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.
Ariane: Ah… can you tell me more?
Emma: Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.
Ariane: I imagine interviewing someone must be hard, even now that you can type. Would you say that’s true?
Emma: Sometimes ease is not an option.
Ariane: You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea. I’m sorry. What else should we do right now?
Emma: How about a conversation using music and no words?
Ariane: Great idea!
Some of the instruments Emma chose for us to use in our “conversation.”
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
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
Emma and I are giving an hour-long presentation tomorrow at the ICare4Autism Conference. We have been discussing our presentation and while I would be most comfortable writing everything out and basically reading from index cards, Emma has proposed that we do a much looser, more fluid type of presentation, one where I introduce us and then she will type some thoughts about the topic she chose, My Body Does not Obey My Mind, I will respond, she will type something else and on it goes, ending with questions from the audience.
Emma wrote, “How about making this presentation more meaningful by having me talk and then writing an answer to a question and showing them what we mean when we use the words “body/mind disconnect”?
I asked her if she was okay if I brought up the topic of stimming too. Emma wrote, “Maybe we start with something less controversial like nice questions about the weather.”
I said, “You mean I ask you a question about the weather and then wait for you to give a spoken answer? And then after you’ve said something, you will type an answer to show the difference in real-time?”
Emma replied, “You ask me a simple question like – How do you like the weather today? – because talkers like that sort of thing.”
So to practice, I said to her, “What do you think of the weather today?” Emma said, “Pool!”
“So that’s a good example, right?” I asked.
Emma then typed, “Beautiful blue skies with whispering air that rustling leaves answer.”
I said, “That is such a perfect example of what you’ve been talking about. What else?”
“Vanity will be put aside so that others may learn,” Emma wrote.
When I suggested I write what I would say in response, Emma wrote, “How about you talk about how my talking voice confused you and made you think what I said was my intention?”
I told Emma this way of presenting is nerve-wracking for me, but that I think it will make for a far more compelling and powerful presentation. She then typed, “You can lean on me.” I told her I will be practicing mindfulness and breathing to relax. Emma wrote, “Good work, Mommy. I will be right next to you lending support.”
I’m counting on it, Emma. I’m counting on it.
Emma and Me
“Today I will talk about the weather,” Emma wrote. Then she smiled and wrote, “That’s a joke.”
*Quick aside from Ariane. Emma has referred to those who are well versed in cocktail party conversation as “weather talkers”.
“You’re funny,” Ariane said.
“Lean trains of thought provide rich moments of quiet peace. Purposeful silence holds meaningful interconnection between like-minded souls. Caring beings care in the silence as much or more as with words. Now for a moment of silence.”
The view from the deck where we are staying
Posted in Autism, language, Parenting
Tagged autistic, cocktail party conversation, contemplation, meditation, non-conversing, non-speaking, Parenting, quiet, silence, talkers, talking, Words
Awhile ago Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”
Yesterday Richard referenced Emma’s “silly things” but without the full quote and I think some may have read his words and thought he was suggesting her spoken words were silly, when he was actually quoting Emma. But the context is everything and when Emma wrote the above, it was about written language versus spoken. I was reminded of my friend, Leah Kelley who has a blog, Thirty Days of Autism. About a year ago, Leah posted a video that I thought so hysterical, I had to share it and have since watched it many times. It’s called Bulbous Bouffant.
I dare anyone to watch this video and not smile. Me? I laughed out loud. Did any of you join in, saying the words out loud? I did. Was this silly of me? YES! I love silly. Silly is way under rated. How much more fun would we all have if we could engage in conversations like this one? Those of you who hate clicking on links, you’re going to have to… go on, just do it. It’s hilarious.
We live in a world where this sort of conversation is not exactly encouraged. In fact, most people, if they encountered such a person while waiting for the bus or subway would probably try to politely extricate themselves from such a conversation. Someone who spoke, as the person in the video does, would be thought odd and would be avoided. He might even frighten people.
A few months ago, Emma wrote, “I am intelligent and cannot speak with the same brilliant words that are in my mind.” And I understood completely what she was saying. We need to show that we are intelligent before we can lapse into the silliness of enjoying the sounds of a word, simply because it’s fun, or admit that a word makes us happy, not because of its meaning, but just because of the way it feels and sounds while saying it. Intelligence first and then silliness can ensue, but if intelligence isn’t proven, then silliness becomes “inappropriate” or “weird” or any number of other words we use when we think someone is not like us and less than.
Yesterday Emma wrote, “I troubled you when I intended to talk and words told different tales than I thought.” I have to say it made me sad to read her words because she’s right, it did trouble me, and had I known how bright she was, I would not have been so troubled. But this is also a problematic statement because it’s focused on perceived intelligence and shows a definite prejudice towards those who are defined as “intelligent” versus those who are not. That actually goes against everything I believe. ALL human beings should be treated equally, with respect, love and kindness, no matter what their perceived intelligence is. And yet, my obvious prejudice is there and so this is something I will look at and be more aware of. Without awareness, I cannot change.
So when Emma then wrote, “I realize any words are valued more than silence” I understood her to mean her “written words” because those are the words we applaud her for, those are the words we quote and talk about, those are the words we say, “Here! Read this!” Partly because they are so insightful and wonderfully wise, but also because they prove, beyond a doubt, how very bright she is. But also there’s a hierarchy in our culture – the more spoken language an Autistic child has, the “higher” functioning they are deemed. Spoken language in our culture is everything.
Except what about all those people who have not found a way to express themselves? What about those who cannot express “profound insights”? Are they less important? Are they somehow less human? Are they not deserving of the same respect and treatment we so easily and readily give to those who speak eloquently and brilliantly?
“I realize any words are valued more than silence.”
Silence
Richard and I have conversations that other people might find odd. We have little inside jokes we think funny, but that no one else is likely to agree. We reference conversations we had years ago with a single word or sometimes even a look. It’s the same with our son and daughter. In fact, with all of my family and close friends I have at least one or two references that we think funny, but that others witnessing might not understand or see the humor. With Emma, our inside jokes often come in the form of music. We will sing to one another or utter a sentence said by someone else years ago, but that now makes all of us laugh. For no particular reason one of us will say, “Get down Angelo!” and we will collapse in hysterical laughter or instead of saying “Good morning” we will mimic the sound of a quail. The other will then respond with a similar noise and it is better than any greeting made of words.
When Emma began writing to express her thoughts, insights, and experience of life, I thought she would be so relieved to finally be able to communicate these things to us and the world. So when she didn’t seem particularly eager to write, I wondered how and why that was possible. I know communicating in language, whether it is in written or spoken form is difficult and hard work, but I couldn’t figure out why she wouldn’t be overjoyed to finally have this connection with other people.
A few months ago I asked Emma about something and she wrote, “Words are not as meaningful to me as they are to you.” I think about that sentence a great deal. Emma then told me she senses people. She wrote, in reference to a question about someone who works at her school, “I can hear her.” She then added “I feel her.” I used to be confused by these sentences, but over time I have come to believe Emma means this literally. Barb Rentenbach, the co-author of the book she wrote with Lois Prislovsky, I Might Be You talks about this as well. Emma has an acute sense of people’s inner life and as a result, having to translate all of this into words must be tedious and (this is my interpretation of what it might be like for her) a step backwards.
Richard has a theory that Emma is operating at a “higher vibration” or frequency than either of us. I have the same thought, but use the words a “higher plane,” which has the same meaning. We both believe Emma is capable of a more sensitive and intense understanding of people than we are. If I think about those I am close to, I am in tune to their vibes at a higher frequency than I am to strangers. But what if I was attune to all people I came in contact with at that same level of intensity? What if I “felt” them the way I can feel my husband and close friends? What if I sensed the essence of them before they said a word? What if the words they then said, rote responses to questions like “how are you?” were untrue?
We, non-autistics, tend to view our neurology as better, more efficient, less socially awkward, but in many ways our word-heavy way of communicating is less truthful. We say things we don’t mean. We say things we don’t believe, we agree with people we think are more powerful. We are easily intimidated. We are swayed by groups of people who share beliefs, even if those beliefs are not something we agree with. We learn at an early age to question our instincts, to tamp down our emotions, to apologize when we are not sorry, to say things we do not mean and then, once we are adults, we use words like “polite,” and “kind” to justify the lies we tell.
“Words are not as meaningful to me as they are to you.”
Emma, Barb Rentenbach and Lois Prislovsky
Posted in Autism, communication, Speech
Tagged autistic, communication, non-speaking, Parenting, senses, speaking, Words, writing
Emma reached for the last bag of Pirate’s Booty yesterday and said, “Minus one equals zero.” Then she grabbed the bag and ate it’s contents.
I am constantly impressed with Emma’s mind and creative use of words. I often think when I listen to her that there’s a kind of poetry in the way she phrases things, the way she will use seemingly unrelated words to describe something, such as “motorcycle bubbles” for the fireworks we see over the fourth of July. It conjures up the noise, which she finds frightening, but also the visual image of bubbles, which I think she likes. I don’t know if this is what she thinks of when she uses those words, but to me, it’s beautifully descriptive in a nuanced and personal way. It’s very “Emma.”
When Emma and I did some literacy work yesterday, she was having a terrible time with a story we read and that she had to summarize. I mentioned to Joe that we had a tough session, so when he worked with her later he used no verbal language and she was able to fly through the work. During my session with her I was reminded of a post I read recently, written by an autistic adult who described how one day conversing and finding the correct words came relatively easily, but the following day, or even that afternoon, she found it almost impossible to express herself verbally.
I have become much more aware of Emma’s sensory issues in the past few weeks from reading other blogs written by autistic adults. I have certainly been aware that Emma had to deal with a sensory overload, but how that manifested itself, what that actually meant to her was something I had trouble understanding. But reading what it’s like for some other autistic people has been enlightening. This is one of my favorite posts on the subject of language and words. It is written by E. who has a blog – The Third Glance. The post is entitled – Words.
Another post – Squawk? by Square 8 is another wonderful description of how talking can be akin to walking through a minefield for many on the spectrum. Sadly this blog’s last entry was in November 2010.
Minus one equals…
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
Posted in Autism, language, sensory issues
Tagged Autism, autistic, language, Parenting, Square 8, The Third Glance, Words
Emma's Hope Book 