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 a story about a teen girl chasing a dream to be a singer, despite being unable to talk…
The first time she heard a voice being used as an instrument, was the day she would mark as euphoric. How hard able bodied people have to work to make their visions come to life, caused her to doubt whether she could dare to desire such a career for herself. Speaking was almost impossible though she was given the tools to sing words by hitting letters on a keyboard. She knew with determination, practice and patience she could, at least, try. A challenge she embraced and will tackle greedily.
Easy and challenge are not friends, but joy and challenge can be.
Find joy in challenges and life changes.
Emma Singing
Posted in Autism, autistic, Teens
Tagged career, challenges, communication, dare to dream, dreams, hard work, joy, Performing, RPM, singing, spoken words, Typing, typing to communicate, unreliable speaker
I think this has been one of the best days of my life. We had a full day of learning. I’m exhausted. Seriously. I feel as though my head is going to explode. We began the day with our daily Skype call with Dr. C. Emma and Dr. C. had great fun teasing me about the fact that every time Dr. C. asked Emma something like, “How many F- will bind to a single Mg^2=?” Emma typed the correct answer while I looked on with befuddlement. Every so often Dr. C explained something incomprehensible and then asked, “Got it?” Emma immediately typed “Yes!” while I muttered, not so quietly, “NO!” As I was continuously slowing them down with clarifying questions, it was suggested, jokingly, that I put a metal bucket over my head. Emma then typed to Dr. C. “Do you have one?”
As Dr. C. gave Emma increasingly difficult and complex questions, I resigned myself to the fact that I didn’t have a clue what they were going on about, but Emma did, and that filled me with unspeakable joy. There was lots of uproarious laughter and shouts of “Go Emma! You can do this!!” after each question and Emma literally bounced up and down with glee.
Science was followed by a break, then math, a break, American history, a break, creative writing, where Emma wrote the most amazing piece that, sadly, I cannot post because it has been submitted to an anthology. (Any who type to communicate are encouraged to submit. Click the link ‘here‘. I believe the deadline is October 1st.) After Emma cranked out her absolutely mind blowing essay, we did German and then she had her book club with K. where they discussed George Orwell’s Animal Farm and the Russian Revolution. Oh and did I mention Emma did all of this dressed in the most fabulous red gown?
Quick aside – We are so incredibly fortunate to have people in our lives who have enthusiastically and generously volunteered their time to help teach. To those people, a million thanks.
Now it’s time to do nothing. Emma? She’s in the back with Richard watching Seven Wonders of the Universe, I kid you not…
Posted in Autism, Education, Parenting
Tagged animal farm, autistic, communication, Education, history, homeschooling, joy, literacy, Parenting, periodic table, science, typing to communicate, unschooling
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
It’s been eleven days since anything was posted on this blog, the longest stretch, in the more than four years of its existence, that it has lay dormant. It was not intended, but instead just happened.
This has been a year of incredible transformation… I’ve turned a year older today and yet see how much there is to still learn. Learning and traveling… nothing makes me feel more alive, more happy, more eager. And because of my daughter, I am learning more than I ever believed possible. But that is for another post(s). Today… today is a day I am celebrating my family, friends and beautiful life.
Coyote roaming the ranch, looking back at us with the same curiosity we were viewing them
Heading out on a hike
One of a number of bucks who hang around the barn…
Sunset – The Rocky Mountains
A rare photograph of Richard and Ariane together as Ariane is usually behind the camera and not in front of it…
Photograph taken by John Kelly.
Wishing all of you a wonderful day.
More will be revealed…
Years ago I wrote about the difficulties involved in writing a balanced and yet honest depiction of life. I just reread that post and my first response was to delete it. But as I no longer do things on this blog without asking Emma, I asked her if she wanted me to remove it and others like it. She wrote, “no.” So I’m leaving it, though, for the record, if this were left entirely up to me, I would delete it, along with a great many others where I detail personal things about my daughter without thinking about how she might feel having such information made public. To be honest, I would delete the first two and a half years of this blog, just wipe the slate clean and begin with the spring of 2012 when I began to become aware of Autistic people who were writing about their lives. But this blog is not mine alone. This blog is a group blog, written by three people, one of whom has their name featured on it, Emma. (Emma has said she likes the name of the blog and does not want it changed.)
A blog is a curated version of life. We tell what we are comfortable discussing, what we are aware of and understand at the time of writing. But when writing about others, particularly family members, things get trickier. Even a year ago I wrote things I am not comfortable with, but as Emma wrote a few weeks ago, “it’s important to show that times were difficult. It is still not easy at all times.” Emma wrote this regarding another project, but when I asked her if her statement applied to this blog too, she wrote, “Yes.”
My dilemma in continuing to contribute to this blog concerns that difficult balancing act of writing about the things I am learning, processing and thinking about, while being respectful of other members of my family and not writing in a way that suggests I speak for them. Even so, I am not always successful. But more and more there’s a great deal I don’t write about. If Emma is going through something that causes her pain, I no longer feel comfortable writing about it, even from my perspective unless she asks me to. I argue that a certain amount of self censorship, particularly when done to protect the confidences and security of others, is not necessarily a bad thing.
The only time I’ve posted things that are personal and painful are when Emma has written, “Put this on the blog.” Or when I’ve asked her, “What do you want to talk about?” And her response was, “I want to write a blog post.” But these omissions, this version of life that I do feel comfortable enough to discuss here, cannot, by their very nature, give a true picture of our lives. So for some, it may seem our lives are ideal, or some readers may mistakenly think we never struggle, or perhaps these posts give the impression that we live a pain-free life of nothing but joy and ease.
Blogging is an intimate and immediate form of writing. Those of us who blog are far more available to those who read what we write than other people who write. Anyone can make comments and most bloggers, even those who do not or rarely respond to comments, read what commenters have to say. It is part of what makes blogging unique, and to me anyway, particularly compelling and interesting. Comments from others, whether they agree or not, are fascinating, often thought-provoking and some even make me reconsider what I believe or how I think about something.
Blogging is the reality TV version of writing. But even so, there is more left on the editing room floor than gets seen. It is the nature of the beast. Life is far too complex and messy, particularly when it is four lives or five, if one counts our mischievous kitty, to capture in 800 words or less, even when posting Monday through Friday.
Posted in Autism, Blogging, Parenting
Tagged Autism, autism blogs, autistic, Autistic child, balance, Bloggers, blogs, Communicating, honesty, joy, life, non-speaking, pain, Parenting, reality TV, suffering
When I was young I was told I was too sensitive. I was told this by many, many people. I cried easily and often. I didn’t take criticism well. When scolded I felt awful about myself, took all the words said, mulled them over and concluded I was a terrible child. I remember wondering how it was that I could be so awful? Why did I make so many dreadful mistakes and so often? I believed that I was unusual in this way. I thought there was something very wrong with me, confirmed by all the things I did that caused me to get into trouble so much of the time.
This thinking caused me a great deal of pain and suffering later in life. I was not able to step back from what people said to me in annoyance or anger. Even when they would later compliment me about something I’d done that they approved of, it was tempered by the last admonishment. I didn’t know how to hold two opposing ideas about me at once and make sense of them. It never occurred to me that it was my behavior that was being objected to. It didn’t dawn on me that teachers and adults were talking about things I’d done and that my actions were separate from who I fundamentally was.
This morning I awoke and my child bounded out of their room in an exuberant flourish of happy energy and good cheer. I urged them to lower their voice as I busied myself with preparing their breakfast and my coffee. Over the course of the next hour I admonished my happy child to not pound the floor by jumping in gleeful abandon for fear of waking the downstairs neighbors and again to lower their voice for fear of waking their sibling and reminded this joyous child to not slam the door to our apartment (which slams on its own without anyone’s help) and while waiting for the elevator to lower their voice yet again. And by the time the bus had come to take my wonderful child to school I had tried (I am hoping, unsuccessfully) to tamp down their enthusiasm a dozen times. As I made my way to the subway I realized I had not shared in their joy for all that was joyful and wondrous. I had not joined them in greeting this beautiful day with such untethered optimism. And that old crushing feeling came down upon me like an avalanche. I felt terrible. I reflected on all those days when I was a child and how it felt to be hushed and told to lower my voice and how I would try with all my might and yet never could lower my voice enough.
As awful as I felt, as sad as it made me to reflect on all of this, by the time the subway came to my stop I saw how being overly sensitive is highly under-rated. How can one be “overly” sensitive, anyway? And what’s the alternative? Even now in my mid-fifties I still am extremely sensitive, too sensitive, or so people tell me. I no longer believe I will be able to develop a thick skin as so many predicted I would at some point obtain. And honestly I no longer strive to. Besides, if I weren’t too sensitive would I have noticed how I was shushing my child more than was necessary. Without being overly sensitive I might not have made a mental note to be extra playful and bouncey when I see them this afternoon. Without being far too sensitive for my own good, I would not have connected my child’s awesomeness with my younger, often exuberant and very sensitive, self.
Joy
Posted in Gratitude, Happiness, Parenting
Tagged being too sensitive, childhood, developing a tough skin, empathy, exuberance, joy, optimism, overly sensitive, Parenting
A friend of mine hasn’t been feeling well. She had a cold or maybe it was the flu. When she wrote me I could tell by the uncharacteristic abundance of typos that she wasn’t feeling great. I thought about her, hoping she’d feel better soon. And then yesterday there she was, so much better, her old self, witty, funny, silly, and I felt tremendous relief. I hadn’t realized how concerned I was until she was better.
When I was nine my father went horse back riding. It was a Wednesday. He and my mother always went riding Wednesday afternoons. I was home, sick with the flu that afternoon. I remember staring out the window of my bedroom, the sunlight far too harsh forced me to turn my head from its glaring light. My father told me he’d look in on me when he returned. He never did. At least not for a long time. That afternoon he fell off his horse and, as luck would have it, he did not die as, those who administered to his broken body, predicted. He did not die, but he was never the same.
Sometimes our lives change so suddenly it is impossible for our minds to keep up. Sometimes it takes years to fully appreciate how one second can change so much.
When Emma was born, I could not have anticipated how completely my life would change as a result of her being. It took years for me to process, to catch up, to fully appreciate the magnitude of one child’s existence and all that would occur as a direct result. I could not have imagined how completely her life would change mine. And now, today, in this moment I can say with complete and utter conviction, her life has made mine infinitely better, infinitely more enriched, infinitely more meaningful. Her life. Her existence. Selfishly, and I do mean that literally, selfishly, I have benefited so completely from her being in this world, it takes my breath away.
In any given moment our lives can change. Just like that. And in that moment we have no way of knowing where we will be led. Awhile ago I made a choice. I didn’t think of it as a choice at the time, but I see now, that in fact it was. I chose to view the things that have happened in my life as moments of possibility. As long as I am allowed to live, each moment is a possibility to learn, to grow, to be open to new ideas. I can say that easily now. I understand this. As lives go, mine has been a privileged one. My perceived “hardship” is nothing compared to what so many have endured. I do not say any of this flippantly. This choice I made has been relatively easy to follow.
When my friend was sick I worried, when my father almost died I was devastated, when my child was diagnosed I despaired, but these things happened regardless of my response. My response to them didn’t change their occurrence.
In this moment it’s raining outside. Drops of water plop erratically on the air conditioning unit outside my studio, the clouds drift lazily along, skimming the tops of the multilevel buildings I see outside my window. The red brake lights from the cars careening along the interlaced roadways create a moving collage as they speed off and on the exit ramps of the 59th Street bridge. In this moment I am safe, my husband is safe, my family is safe, my friend is feeling better… In this moment, in this brief moment, all is well and I am filled with gratitude for all I have. I am filled with appreciation for the enormity of how one life has so profoundly changed my own in ways I could not have dared imagine. I am humbled, knowing I will never be able to fully repay the gifts she has given me.
Beautiful Emma
First off, you’ll notice to the right of these words a blue “badge,” which, if you click on it, will show you a line up of all the blogs nominated for the “Top Autism Blogs for 2012.” To vote for Emma’s Hope Book, click on the “like” button. At the time of this writing Emma’s Hope Book was in the #4 position! Very exciting.
Below is the “story” Emma wrote yesterday morning in preparation for our much anticipated day.
I had to help Em with some of the words such as shower, Elite Gymnastics and she wanted to write – After lunch will go zoo – so I had to help her with that too, but otherwise Emma did most of this on her own. To recap, a year ago Emma had just finished learning how to form all the letters of the alphabet and we were in the initial phase of beginning to work on reading, writing and typing actual short words. She’s come a long way, baby!
As her writing stated, after lunch Emma and I went to the zoo. “Just Mommy and me, together,” Emma reiterated several times that morning. “Yes, just you and me,” I confirmed each time. “Going to take the yellow R train,” Emma said matter-of-factly. Emma loves the R train. She refers to it as the “yellow R train,” because the letter R is in the middle of a yellow circle. All the subway trains here in New York City are designated with a number or letter within a colored circle. Whenever possible, Emma requests the R train, which is fine, except that this is not the train closest to our home and a few months ago the R train wasn’t running on the weekend, much to Emma’s consternation. As we made our way to the station, I cautioned Emma that we had to take whichever train came first. “Yellow R train!” she insisted. The very prospect of riding the R train, almost more than she could cope with, caused her to bounce up and down. She beamed at me. “Okay, but Em, if a Q or N train comes, then we’ll take either of those too.” “Take the yellow R train,” she responded. “Em…” I started, but before I could say more she cut me off and said, “Okay, okay, okay. Maybe take the yellow R train, maybe not.” Then quietly she muttered, “Take the yellow R train!”
Another train flew by on the express tracks, so fast I couldn’t tell which train it was. But Emma knew with barely a glance. “Look, there’s the yellow Q train,” Emma said, pointing as the train whizzed by. “Yeah, that’s the yellow Q train with blue seats,” she said.
“What?”
“The yellow Q train has blue seats.”
This was news to me, not the sort of details I notice, but exactly the kind of details Emma notices. As I was pondering this, Emma said, “Look!” Then she grinned. “It’s the yellow R train,” she said with a kind of reverence, as though greeting an adored and much admired friend. As the train slowed to a stand still, Emma found us both a seat and giggling said, “We’re sitting in orange and yellow seats!”
“Is that why you like the R train?” I asked.
“The yellow R train makes me happy,” Emma said, before peering out into the dark tunnel and grinning at her own reflection.
And so it does.
Coming tomorrow – The Central Park Zoo and The Puffin.
To read my most recent Huffington Post, click ‘here.’
To read my guest post on Special Needs.com, click ‘here‘
Posted in Autism, New York City, Parenting
Tagged Autism, autistic, Central Park Zoo, handwriting, joy, literacy, Parenting, R train, subway trains
This morning, Emma turned on Maroon 5’s Moves Like Jagger featuring Christina Aguilera.
It began like this… (By the way, the turquoise thing Emma is holding is her string. It’s a work in progress. Every few days she adds more duct tape to it. Pretty soon she’ll be able to use it as a snowboard.)
and then she did this
Which turned into this
and then this
“I’ve got the moves like Jagger”…
and she did and she was…
It was beautiful.
In it’s purest form – joy.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
My friend Kelly sent me this link to a post entitled The Obsessive Joy of Autism. The piece is written by Julia who is on the spectrum and one of three contributors on a blog, Love-NOS. I have only begun to read some of the posts, but it’s a terrific blog regarding autism and being autistic, but also about being human, our differences, our intolerances, our society and culture and how we hurt others with our judgements and by insisting our ideas of what is “right” should be adhered to by all.
“One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.
But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy.”
Julia goes on to write – “Without this part autism is not worth having.”
I have written before about Emma’s joy. We call it her bliss. Left on her own she is in a state of almost constant bliss. The kind of bliss we neuro-typicals work so hard to attain. We take classes, read books, go to retreats and meditate all with the hope that we will be able to feel that bliss, no matter how fleeting. Emma’s bliss is a part of who she is. It is one aspect of her Emmaness. It is infectious and beautiful.
Julia writes – “If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”
My wish for Emma is that one day she could articulate her thoughts and opinions as beautifully as Julia has here. Everything I am doing, every “study room” session we do is with that hope in mind.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
Posted in Autism, obsessive compulsive, Parenting
Tagged Autism, autistic, bliss, joy, LOVE-NOS, obsessions, Parenting
Emma's Hope Book 