New Beginnings

Fools and Flowers

You see how the blossoms,

drenched in dew,

rise from last year’s

forgotten leaves?

How they lift their faces

to the new day

and drink in

the light?

Only fools

and flowers

are giddy enough

to rejoice

with their feet

already planted

in their graves.

Only fools

and flowers

and me,

drunk on life—

that heady stuff

which plies courage

through my veins.

--------------------------------------------

It has been a difficult few years, and, as I look back on my blog posts here, I realize that many of them are rooted in grief and loss. It has been important for me to process the deaths of so many beloved ones, and I hope that my reflections have also been helpful for others who are trying to come to terms with loss. 

Something has changed for me, though. Maybe it's a lesson that has been presenting itself to me again and again--one which I'm finally beginning to understand. Whatever the case may be, I feel that the time has come for me to move away from this blog, and to start one which does not focus so much on the past as it does on the present.

I will still post stories about growing up with my brother and sister here from time to time, but I'd like to invite you to visit my new blog, "The Mud, the Lotus, and the Pencil" at pencilblossoms.blogspot.com. It's going to be a "messy collection of thoughts on writing and transformation." The first blog is already posted--it's called "On Seeing."

You can find the link on the sidebar whenever you visit this blog. 

Thank you for making the journey with me in the past few years.  I wish you all the best, and hope you'll come along on this new path I'm walking (and writing about).

Enjoy the spring weather, and do as the flowers do: always find the courage to rejoice!

Heading for Shore

I took this photo on East Beach last year, and today I captioned it. Because it's one of those days. And because we've all been here. Tossed and worn down by life, wondering when the waves will let up. But look at the pic again. This beach is beautiful, isn't it? Look at the pebbles, all smooth and polished. They didn't get that way from sitting in a puddle. I'll let you extend the metaphor however you want. I'm heading for shore.

For Fal

 

Heart Work

I thought it was
a dagger
that brought me
to my knees
when I would
think of you.

And then the ache
of healing
was the stab
and pull of
stitches through

a raw wound.

But now I know
it was a
chisel in 
my heart that
carved the space
where I can

always find you.
I see you’ve
already
begun to
decorate
the walls.

http://www.designmag.it/foto/decorazioni-per-pareti-stencil-e-pittura_5911_2.html

Two years is a long time, and no time at all--it's hard to believe that Fal has been gone that long. My friend's life was much too short, but a loving and generous spirit never dies. She lives on in her family and in her friends--the ache of missing her is tempered by that knowledge. I like the image of Fal taking up residence in each of our hearts, creating a permanent space and making it beautiful--a place where each of us can find her, if we look closely enough.


Grateful for my time with you, my friend.

Remembering . . .

A Pebble, Smooth 

and Worn

I watched you cross that bridge

without me.

Holding your hand,

whispering love

and love

and memories

(all of them good)

to carry along 

like a pebble, 

smooth and worn,

in a pocket.

All my love

all my heart

all my soul

longed to guide you

longed to smooth your way

longed to tell you

I’d be by your side

forever.

But I guess we always knew

you’d go alone.

You took the last step

without me.

My brother,

my friend,

my heart .

Imagine Ido's World

 Cue: Sci-fi theme music.

 A male voice speaks as a person who looks remarkably like you appears on screen:  

Imagine, if you will, that your body has turned against you. Perhaps you’ve had a terrible accident, or a strange new virus has attacked your neurological system. Once you’ve recovered, your body appears to be intact, and, yet, you are different. You want to walk to the kitchen, but your legs take you to the living room, instead. You're hot and sweaty, but you cannot initiate the movement which will allow you to remove your sweatshirt. You’re thirsty and you want a drink, but you cannot speak. When you are shown pictures of a drink and a cracker and asked to point to the one you want, your hand moves to the cracker, even though you willed it to move to the drink.  And when you are asked to point to your name, which you can still read, your hand points to someone else’s name, instead.  Unable to access the words you are thinking, doctors and other experts determine that your brain is damaged beyond repair. You are deemed “intellectually disabled” and forced to attend training classes where you must point to cards to show that you are capable of learning. All the time, you know exactly what is going on—you can still read and reason and think-- but you can’t express your thoughts and abilities. Your body continues to betray you. It’s like the wiring has gotten scrambled somewhere between your thoughts and your actions.

You find that if someone holds your elbow and offers gentle prompting, you can stay on task and control yourself enough to point at pictures, and perhaps even form letters with a pencil. Your hopes are raised—surely now someone will recognize that you are still intelligent, and that you are simply trapped inside your uncooperative body. Maybe you’ll be presented with a page of letters to spell out some kind of S.O.S. You are relieved to know that, finally, you’ll be able to express yourself again!  You can stop doing all the pointing drills in which you fail to demonstrate your understanding of numbers, colors, and letters. You can have genuine human interaction; you can be taught things at your true intellectual capability!

But—no. The experts don’t believe you were pointing to the correct answers of your own volition. They think you’ve been given too much support from your aide. If you are really intelligent, you’ll need to demonstrate for them without help.

Again, your body won’t obey.

Fine, say the experts. Show us that you can point with one of us holding your arm, instead. Maybe then we’ll believe you.

Anxiety floods your brain. Your uncooperative limbs are even more jerky and uncooperative. You are frightened that you’ll lose this chance to prove yourself, and, in your fear, you are unable to respond.

The verdict? Your intellect is nonexistent. You will continue doing unsupported pointing drills until you can demonstrate that you know your name, or the difference between colors, or the answer to one plus one.   

And the aide who offered you gentle support and prompting will be shamed for planting false hope in the minds of your family. It is clear that you have no capacity to learn.

Cut to darkness.

 

Does this sound like the premise for a horror story? Maybe one of Rod Serling’s Twilight Zone episodes-- it’s frightening enough. But it’s a scene which is playing out again and again in our own classrooms, and has been for years. It’s the challenge faced by countless nonverbal autistic people who are being denied the chance to find communication opportunities because they are being asked to demonstrate their understanding in ways which do not work for their condition.

It's akin to the challenge a quadriplegic person would face if he were asked to demonstrate his understanding of a concept-- to prove his intelligence--by raising his hand.

As I work on the revisions of my novel, Sepia, I continue to research autism and facilitated communication (see my Dec. 27, 2011 blog entry, Sepia, Autism, and Facilitated Communication, for further explanation).  And I was fortunate enough this past week to come across the blog and book of an autistic teen named Ido Kedar, called Ido in Autismland.  I've just painted you a scenario which is eerily similar to Ido's struggles as a young, intelligent boy, imprisoned by the neurological misfirings of his autistic (yet otherwise intact) brain. What a nightmare he endured. And what a triumph of the spirit he has achieved.

Earlier this year, I read The Reason I Jump, by Naoki Higashida, a thirteen-year-old boy with severe autism. His perception and his empathy, his love and his fears of being burdensome to his family--they show a greater depth of emotion and far less ego-centrism than you might credit any thirteen-year-old with, and the story that he includes at the end is achingly beautiful. His work and Ido's certainly challenge the idea that autistic people do not possess "theory of mind" in which we are able to understand what others may be thinking as separate from what we, ourselves, are thinking.

There is a growing body of work by nonverbal autistic people (who have had the kind of support necessary to help them learn to communicate on their own terms) which I believe should be essential reading for all humanity. In the 2011 blog entry I referred to earlier, I mention other nonverbal autistic people who have managed to break out of their prisons—and there are many more I haven’t mentioned. Tito Mukhopadyhay, most notably, was taught by his mother, Soma, to write and type through a system she developed, called the Rapid Prompting Method. While many experts cast doubt on Soma's work because she supports and prompts her students as they learn to use a letterboard, it was Soma who helped Ido Kedar break free of his prison and learn to type and communicate. Ido now uses a letterboard and also a speech-enabled iPad to talk to others without anyone holding his arm, and his views and success challenge all of us to re-think our assumptions about facilitated communication and autism itself.

Ido’s autism is not cured. And he will be the first to say that he truly wishes there were a cure for autism, unlike many folks on the “higher” end of the spectrum who would like to be accepted by the world the way they are. Ido fights his body daily so that he can stay connected to the world which so many of us take for granted. But being taught to communicate has changed his life. He no longer despairs that he will always live as if he’s in a kind of hell, screaming inside for someone to recognize that his mind is intact while being drilled on the alphabet and simple preschool concepts. Now he is championing the cause of other nonverbal autistic people. He is trying to tell us that he is not an anomaly. He’s just one of the lucky ones, given a chance to communicate through a method that experts call “controversial”.  He’d like others to be given the same chance.

It is time for all of us to reexamine our beliefs about autism—especially severe autism. While we have learned a great deal about autism on the higher end of the spectrum from people who have Asperger’s, there is an assumption that those on the other end of the spectrum are suffering from the same neurological differences to a higher degree, and that they are also intellectually incapacitated. As Ido suggests, there exists the possibility that severe autism is a different form of neurological impairment (with many similiarities to Asperger’s), which means that the methods which work for some children on the autism spectrum are not going to work for all kids with autism. The inability of those with severe autism to function and respond may have nothing whatsoever to do with lack of intelligence, and everything to do with the approach that’s taken to teach them. And prompts, both physical and verbal, may be exactly what those on the severe end of the spectrum need in order to break through their prison walls.

When I began writing Sepia, one of my goals was to honor my disabled brother. Although he was intellectually disabled and not autistic, there was much more to him than met the eye. The fortunate few who took the time to get to know him were rewarded by their efforts. Out in public, most people turned away from him. Many would not even help us to get through a doorway when I pushed Bobby in his wheelchair. I believe that too many people are willing to dismiss others who are “different” as being somehow less human than others. It is this kind of thinking which I rail against.

Mickey Callahan, one of the main characters in my book, is nonverbal, intelligent, and autistic. There is so much more to him than he is given credit for. I want my readers to see people with disabilities differently after meeting Mickey. The power of story, the power of print--it is phenomenally strong. 

Reading Ido’s and Naoki’s writings makes me even more passionate about opening people’s minds to release their limiting views toward those with disabilities.  We need to look past people’s differences and embrace our common humanity. We need to be willing, always, to look for the potential in others, and to seek out ways to break down the barriers that divide us. We cannot remain satisfied with the status quo. It is time to push past old assumptions and explore other avenues of learning and communication for those who are at our mercy. Just because drill and point methods may work for some students, we cannot operate as though they will work for all. 'Sink or swim' is an unacceptable educational philosophy for any student. It is especially repugnant for students with special needs. We cannot be afraid to explore methods of facilitated communication because there is (heaven forbid) support embedded into the process.  What are we afraid of? Success?

Please read a recent article about Ido here, and view the embedded video which you’ll find halfway through. Read Ido’s blog. Check out his Facebook page. Instead of high fives, high praise is due to this young warrior who challenges us to help him change the world. Read his book, Ido in Autismland. He’s already begun to open my eyes. Will you hear him, and open yours?

So Long Ago

When my mother sang us
her old Japanese songs,
the window shades were pulled
and sunlight tiptoed
past the bedroom door.
I peered through the frames
of my heavy eyelids
into my brother's round eyes,
and saw the world,
its fullness.
I slept
and had no need
for dreams.

Rest in peace, Bobby. 
July 25, 1960 - October 19, 2011

On Seeing Eagles: Why Writing Matters

It was a few weeks after my friend, Fal, passed away, and I was missing her. Driving along the highway, I saw a dark shape flying up from the reservoir and over the highway. A hawk, I thought, or a vulture.  It was too early for osprey. I wish there were eagles around here. Fal loved eagles. I watched it as I got closer.

The bird veered low over the highway—low enough to leave absolutely no doubt. Pure white head and tail, strong yellow beak and legs—it was a mature bald eagle. I screamed in disbelief. An eagle in Groton? NO WAY!!! This eagle was far beyond the Connecticut River valley, far beyond normal eagle territory in Connecticut.

But it was there. I had seen it. And I might have missed it if I hadn’t been thinking of Fal and her love of eagles.

I didn’t see the eagle again for two months—but I eagerly searched the skies over the reservoir every time I passed by, and I looked a bit more carefully at every hawk and vulture that flew overhead, no matter where I was. This week I saw the eagle twice—once on its own, and once being chased by the osprey who had returned to its territory for the spring. My son got to see the two birds together, too—a rare treat, indeed!

The experience got me thinking about our expectations of the world around us, and how often we might miss some pretty amazing things if we operate only within the confines of our own thinking. “No eagles around here,” was a constraint I’ve lived with for years—so sighting one made me think about how we break free of those confines.

Our interactions with others are one way in which we expand our expectations. Missing my eagle-loving friend opened me up to the possibility of seeing eagles where I’d never seen them before, making me that much more observant as I drove along the familiar I-95 corridor, priming me so that I was ready to see a bird I may have passed by previously and dismissed without really looking. Talking with friends and co-workers helps us expand our pool of experiences and opens our realm of possibilities—we learn from the experiences of others, and our view of the world changes because of them.

As a child, I grew up in a very sheltered and protective family—my mother had lost two siblings and both her parents by the time she was a teen, and she worried about losing us, too. The fact that my brother and sister couldn’t really protect themselves from others made her fears even greater. We were limited in our experiences and traveled very little. And yet, I grew up with a sense of limitless wonder and possibility, and felt as if I had traveled and met many people whose circumstances were far different from my own. How was that possible? Through books, of course.

It began with Twenty and Ten, by Claire Huchet Bishop, which I read when I was in second grade. Twenty French school children hid ten Jewish refugees from the Nazis in World War II in this book, and I was transported to another time; I met children who were both alike and different from me, and my world grew larger. I was hooked. My mother, a Japanese immigrant, was proud of my reading skills, and she promised to buy me every book I wanted from the Scholastic Book Club flier that my teacher sent home that year. I wanted almost all of them. A large box of books arrived in the classroom the next month, and an enormous stack of books went home with me. I read them all, re-read them, and promptly ordered more. During my time in elementary school, Scholastic Book orders went home several times a year, and my personal library grew and grew (my teachers must have loved the bonus points!). There were times when the school would call my mother to pick up the books, because I couldn’t carry them all home on the bus. To this day, my mom still recalls the time our principal asked her, “Does Frances really read all those books you buy for her?”

 “Oh, yes,” Mom replied truthfully. “She reads most of them three or four times each.”

“Three or four times? Each?” asked Mr. Butterfield, whose son was in my grade. “I’m lucky if I can get my son to read his once!”

Those books lifted the limitations from my sheltered life. I see the world today differently because they became part of my life’s experience. I notice spiders spinning webs and clutching egg sacs; I watch for the promise of secret gardens; I believe that doing good acts matters more than in whose name you claim to do them; and I know that kindness is stronger than dominance. I am primed to watch for magic and miracles, even (and especially) the ordinary kind, such as seeing an eagle where you’ve never seen one before.

What does this mean to me as a writer? For most of my life, I've written only privately. Writing is what I do--it's how I sort out my feelings and process my world. It's an important act, but it wasn't until relatively recently that I began to think seriously about publication. I've had a few poems published, but it's my children's writing that I'm really working on now. And I wonder about my shift from writing privately, for my eyes only, to writing publicly.

Sometimes I chuckle at my efforts and wonder if striving towards publication of my children’s books means I have: a) an unconscious need for recognition or approval b) a sense of pompous authoritative knowledge c) a desire to rally against mortality by leaving my words behind for the ages. But then I realize that it’s more like d) a wish to give back to the world of literature what it gave to me: A sense of wonder and joy. A sense of being recognized—the “hey, you feel that way, too?” moment that reminds us that we’re all part of one human family. And most of all, a sense of being primed to expect the unexpected--to notice and appreciate the world around us and all the small gifts life bestows on us each day. 

Books do that for people. They’re like interactions with friends that help us see a little more than we might ordinarily see on our own. That’s why I’ll keep working on writing my novels and picture books, and why I'll strive to have them published. It's those interactions with books, and with friends, that change the way we see the world. Which is why, from now on, I’m always keeping an eye out for eagles.