I have a piece of writing to share.
When your eyes are drawn to a mirror, what do you see?
Is it familiar or unfamiliar?
Do you like what you see?
There may be a struggle with recognition. Stay with it.
Imagine something beautiful.
Make yourself smile and hold it.
Recite a favorite story or joke. This can be done in silence or in speaking.
Repeat your name however you would like to.
Do you like what you see?
The End ~ By Emma Zurcher-Long
Mirror, Mirror, What do you See?
Posted in Autism, Autism Acceptance, autistic, self-advocacy
Tagged autistic, Beauty, communication, concepts of beauty, RPM, self acceptance, unreliable speaker
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
Posted in Autism, communication, Parenting
Tagged autistic, Awareness, Beauty, being present, communication, consciousness, internal dialogue, language, letter board, Parenting, qwerty keyboard, reality, thinking, writing
A couple of years after my daughter was diagnosed with autism, a well-meaning acquaintance said to me, “God must think you very strong.” It was one of those comments you wish the person hadn’t said. I understood they meant well, I understood it was some sort of convoluted compliment, I understood they meant to be something like supportive, but it felt awful. Least of all because I have never gained any solace from the existence or non-existence of the G-word, but mostly because of its obvious prejudice to those who are Autistic. The person then followed that sentence with this next one, which was like a second jab to the solar plexus. “I could never handle an Autistic child.” I stood there in stunned silence.
At the time I think I probably looked away and tried to untangle the multitude of feelings that surged through me. But today, now years later, I have a couple of things I want to say. Let me tell you about my beautiful, perfectly wonderful, very human, child. She is like the sunlight that glimmers off the leaves of an Aspen tree. She is that first ripple that appears on a crystal clear lake, extending outward in ever-widening arcs. She is the sound of rain on fallen autumn leaves, she is the smell of sage brush after an electrical storm, she is the glimmer of morning sunlight when it first appears rising up over snow capped mountains, she is imperfectly perfect and a gift and yes, a blessing. And if I’m going to be completely, utterly selfish, I must say this: she has taught me more in her short eleven years of existence than any book, spiritual leader, graduate class, academic study or person I’ve ever read, listened to or met.
I know Emma’s life will have challenges because of her specific neurology. I know she will often have to fight harder, prove herself more often, work more doggedly and persistently than her non Autistic peers to accomplish things that many do not even consider accomplishments, but assume are a given. Yet there are some things she can do and will learn to do that will be easier for her than many of her non Autistic peers. I no longer see autism as a road block, but more as a different road all together.
Every morning I wake up filled with gratitude for my family. But it is my daughter, my beautiful, beautiful daughter who has introduced me to a world I never knew existed. A world that is beyond anything I could have imagined, a world filled with other Autistic people who enhance my life and the world on a daily basis because of their existence. Emma has taught me the true meaning of gratitude. She impacts my life in ways I will never be able to fully describe or express. Gifts are like that. Strength has nothing to do with receiving gifts. It does not require strength to see the good in others. It does not require anything actually.
That is another lesson my daughter has taught me – the beauty in being.
Em testing out her new pogo stick. Her record? 62 bounces.
Happiness is….
My husband
Our son
Em
Our fabulous kitty
This…
and this…
the ranch…
7:00 AM in New York City
And this… this one’s for you, Brenda
and this… Angie, love and kisses… (Em took this and it’s pretty blurry, but you get the idea!)
What makes you happy?
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Posted in Autism, family, Happiness, Marriage, New York City
Tagged Autism, Beauty, children, family, Friendship, happiness, love, Marriage, New York City, pets
“Compare Emma to Emma. Don’t ever compare her to another child.” This was said to me years ago by someone whose name and face elude me. I was reminded of their suggestion this morning as I rode the subway to my studio and read the chapter by Lucy Blackman from Douglas Biklen’s terrific, must-read book, Autism and the Myth of the Person Alone – “That is best illustrated by asking each reader to describe the cultural or emotional characteristics of their own sex, whether man or woman, without any reference to the opposite, not even by implication, as if you were completely unaware that there is another set of options available.”
As the subway careened along beneath the streets of Manhattan, I reflected on this idea of not comparing Emma to anyone else or even to an abstract idea of anyone else. What if I didn’t compare her at all? “…without any reference to the opposite, not even by implication…” What if I saw Emma purely as Emma? “..as if you were completely unaware that there is another set of options available.” What if I pushed out of my mind all those evaluations, the reams of “reports” the specialist’s conclusions, the pages and pages of “information” gathered over the last eight years? What if all of it, every last word was meaningless? What if I emptied our file cabinet of all that and started anew?
We live in a culture of comparing. We look to our neighbor and envy their garden or, as happens in Manhattan, how many square feet their apartment is. We salivate over other’s imagined life, we covet that which we do not have and may never have, we pore over the lugubrious details of fallen celebrities and the train wreck of their lives, we gawk at the photos of dimpled hips, bellies, thighs occupying pages upon pages in magazines we may never purchase while in line at the supermarket, relieved that we are not the only ones whose bodies are not the chiseled, polished, perfection obtained through that impossible combination of genetics and a willingness to give over hours of our lives to a gym. Yet we still feel embarrassment and shame when we go to the beach and uncover ourselves.
I spent a great many years perfecting just this sort of thinking. I spent far too many years feeling alternately “less than” and “better than”. Oddly there was equal measure of shame in both and yet I couldn’t figure out how to extricate myself. It was one or the other, that sticky, messy area between those two points was much harder to occupy. But it is that area I long to find my place in. It is exactly that middle ground I now find myself reaching for. “…as if you were completely unaware that there is another set of options available.” That is what I strive for, when I think about and interact with Emma, but also in every area of my life.
“Compare and despair” is something I have heard people say. I can illustrate this saying with countless examples from my life and yet, even now, knowing what I know, the temptation to compare is seductive. How does it serve me? This is the question I know to ask. And I have the answer to this. It doesn’t, but it is a habit. Thankfully I am learning to stop myself when I catch myself comparing. What I am coming to realize is, comparing is my knee jerk response to stress. It is where I go when I’m tired. It’s my default setting for when I’m overwhelmed, hungry, sad or just confused. Repetition is how we acquire skill. Repetition is how we undo learned behavior. When I compare Emma to Emma I see tremendous progress, I see possibilities, I see limitlessness, I see the beauty in the small steps taken, I see a kind of poetry in her growth. Challenge becomes subjective, goals are no longer solid lines but instead shimmery bands of light, something one moves in and out of, no longer a mountain to climb, but rather a place to visit and then move on.
How do I stop comparing my child? By seeing her through a lens of wonder and curiosity. When I am able to accomplish this, I have found true bliss. A blissfulness Emma innately occupies and patiently awaits me.
Emma running through sprinklers outside the Museum of Natural History
Emma's Hope Book 