Sepia, Autism, and Facilitated Communication

Research.  My son wanted to know why I was doing research yesterday—after I had finished my first draft of Sepia.  I explained that, while I had done some research as I was writing, and while I already had some experience with the topic, now I was working to be as well-versed as possible on my subject, to be sure that I do not misrepresent my characters or have them act in ways that are not true to reality as I make my first revision.

What are you researching? he wanted to know.

Autism.  Autism and facilitated communication.

I have had experience working with children who are autistic.  My first internship in college was with a preschool program for children with special needs, and while I did research and compiled a database of resources on siblings of children with special needs, I also spent my days working in the preschool and focusing on a bright autistic boy who communicated with gestures and echolalia.  Working with D. gave me a lot to think about.  Here was a child whose potential was locked up by his behaviors, by his way of relating to the world and to others, by his difficulty communicating.  I wondered what it must be like for his siblings, knowing how much he was capable of, and yet seeing how poorly he functioned in this world.

Later experiences in my work gave me more to think about.  A little boy who communicated in song; a little girl who did not speak at all, but hummed and smiled and took you by the arm to tell you what she wanted.  A glimpse was all we had of their potential.

I began writing Sepia just weeks after my brother passed away.  I needed to explore the relationship of a character with her special-needs brother, but I did not want the main character to be me, and I did not want her brother to be Bobby.  I was writing fantasy, not memoir. I was exploring relationships in a universal way, although I specifically wanted to explore the typical sib/disabled sibling relationship.  So I chose to make Cara’s brother autistic.

Now that I am reading about facilitated communication, and reading the works of autistic adults who were believed to be mentally retarded but are now able, through facilitated communication, to write of their experiences quite eloquently, I am especially glad that I chose an autistic boy as one of my main characters.  There is so much that is misunderstood about this condition, and there is such a universal need to be known which applies to all human beings, that I think I can do justice to one of the themes of my work with this particular set of characters.  All human beings deserve to be known and recognized as individuals; everyone has something unique to offer the world.  Facilitated communication has given many disabled individuals an opportunity to say this for themselves.  We need to listen to them.

Facilitated communication is a controversial method which involves the support of a non-disabled “facilitator” to assist while a communication-impaired individual learns to point or type at a keyboard.  At first, the facilitator supports the hand or arm of the disabled individual, and this appears to be the most controversial part of the process.  Critics say that the facilitators are guiding the subject to say what the facilitator actually (but subconsciously) wants them to say—like operating a Ouija board.  Critics say that it is the facilitator’s thoughts that appear on the keyboard screen, not the subject’s.  Certainly, this is possible and may be quite common.

But, clearly, there are instances in which the subjects do learn to communicate and type on their own, with only the gentle pressure of a facilitator’s hand on their shoulder, or the spoken reminder of what the subject had just typed and a little “nudge” to keep going and finish what they were trying to say.  Some autistic individuals who use FC (facilitated communication) write of their need to have emotional support as they write, to keep them physically grounded and to help them focus. While FC remains controversial, there is, at least, a small set of individuals who have gone on to become independent typists who are now able to communicate freely with the world.  And how much they have to say about the world, about individuality, about the universal need to be recognized, to be known as a person!  FC was a way to open doors for these individuals which may never have been opened otherwise.

Reading their words supports and validates so much of what I want to communicate about special needs through my story. Cara had always believed in Mickey’s potential, and the opportunity for her to communicate and interact with him easily in Sepia will have repercussions for both characters in the sequels.  I hope that Mickey will have an even greater role in the next book, advocating for himself and others while learning how to handle the challenges of being autistic. 

I can’t wait to do more research, to learn more from the amazing individuals with autism who are advocating for the disabled.  On my list of books/movies/blogs which I need to read and watch:

“Reflections on Language,” by Lucy Blackman  in “Autism and the Myth of the Person Alone” by Douglas Biklen

Lucy's Story: Autism and Other Adventures by Lucy Blackman.

Wretches and Jabberers (movie—Amazon)

info written by and about the following individuals: 

Sue Rubin, Chammi Rajapatarina, Tracy Thresher, Larry Bissonette

I am in their debt, as is the world.  Thank you for opening our eyes.

Merry Christmas

I finished my “zero draft” of Sepia this morning.  Almost two months of writing netted 190 pages of story, plus tons of notes that need to be sorted and organized and turned into a cohesive world and separated out into important threads to re-weave into the first revision of my book.  I’ve got notes and plot points for the two sequels that should follow this book, as well, and I can’t wait to get started on those books! 

Writing the end of Sepia during the Christmas season was especially significant for me.  My brother, always on my mind throughout the year, loved Christmas.  I cannot remember a Christmas when I was not planning how to make the day special for him.  From cooking the foods he loved (ham with pineapple and green bean casserole with French-fried onions) to finding him stocking stuffers and presents he would really enjoy, Christmas was a chance to hear him squeal with delight, to see him pat his stomach and declare that everything was delicious, and that he was full.

As I wrote the last chapters, I realized that, like Cara in my story, my father and I have been left with the emptiness of wondering who we really are now that my brother and sister are both gone.  A lifetime of caring for someone creates an identity that is hard to reconcile with their absence.

But, just as we are not the same people we were ten minutes ago, ten months ago, or ten years ago, we are not defined by our roles as caregivers.  It is an honor, a responsibility, a privilege, but it is not a definition. 

I am shaped by my lifetime with my brother.  I am saddened by his loss.  I am redefining my life as I move forward without him.  I mourn him, and hope to honor him as I move on.  But move on I will.  Because to stagnate is to throw away this precious gift that I still possess, this gift of life.  Because moving on is not a choice, but a necessity.  And for me, it is the only way to go.

Bobby's Request

Today is the two month anniversary of my brother’s death. My grief for Bobby is complicated.  It is like a crystal cut with many edges, shattering a single beam of light into a shower of multi-colored memories.

I began to grieve for my brother years before he passed away.  The schizophrenia which had been present but manageable throughout his adult life began to take over as he grew older.  Bobby spent more time “in his head” than he did with us in “reality,” and breaking through to my once social and happy-go-lucky brother became an ordeal which often yielded only a few moments of recognition.  What follows is an expression of my grief for Bobby at the time.

Lost

by Frances K. Prescott

I am

my brother’s ghost. 

I haunt

the edges of

his mind

each time

I visit. 

Calling out to him

across a gray abyss,

I hear

my voice — a tattered

echo in the wind.

I watch him 

walk 

with solid shadows,

substantive as stone,

as steel,

as serpents whose

deceitful voices

lure him out

and lead him further in

his mind

is a dark wood

I try to reach

him but my

limbs become

transparent

thin as air I 

cannot touch him

cannot move him

cannot make him

know I’m here so

I am gone

and now I know

what death is for.

I die

and die again

to haunt his world.

I wrote the poem, “Lost” about four years ago.  But it is not the first grief that I felt for my brother.  Growing up with Bobby, my life was filled with love and laughter.  But by the time I reached second grade, if not sooner, a greater awareness of Bobby’s limitations saddened me again and again. 

I remember a time when I came home from college to visit.  Bobby had been placed in a job unloading trucks at a retail store.  I sat with him on the couch, in our old familiar way, and he looked at me.  “Frances, I not a ‘retard,’ am I?” he asked.  He looked so worried.  He must have heard someone calling him that at work, and it was clear that he knew this was a derogatory term.

That’s when it struck me how lucky our little sister was.  Her intellectual impairment was severe enough that she would never be aware that she was “different.”  And the pain I felt then for my brother was so severe, it was as though someone had squeezed all the air from my lungs and would not let go.

I don’t remember how I answered him.  I know that we hugged, and he seemed to accept whatever I told him, and that I didn’t cry in front of him. 

But as I look back at this and other memories, I understand why my grief for my brother is different from the grief I felt when my sister died.  When Jeannette died, it was sudden.  There were not months of suffering and hospitalizations, years of withdrawal, no real sense that she understood her own mortality.  But Bobby knew about loss, and death, and he missed his sister but worried about growing older because “I still a young man.  I not go to Heaven yet, am I?”

He also missed his ability to work—he was accepted into a warm, loving vocational program called Seabird Enterprises shortly after the “retard” incident, and never wanted to miss a day’s work if he could possibly help it. 

And Bobby missed our mother when she had a severe stroke and had to go to a nursing home, but Bobby’s mobility and psychological issues prevented him from seeing her for months. Bobby understood loss. 

And so my grief for my brother is augmented in some ways by the grief I felt for him throughout his life.  Yet I also feel relief for him.  He has set down his burdens; his weary body rests.

So I try to remember the good times, the way he laid his head on my shoulder even in the last weeks of his life.  I try to focus on how lucky I was to have him in my life for so long, and not on how much I miss him. 

And today I look back at one of the poems I wrote when Bobby passed away, and at one of the pictures of us from our childhood.  And I will try to celebrate my brother more than I mourn him. 

Bobby’s Request

Come walk with me,

if you don’t mind

my halting steps

and distant thoughts.

I am, in some eyes,

broken.

But stay with me

and you will find

within my smile

an offered heart

whose voice is heard,

unspoken.

Now dance with me

on threads of time;

no boundaries left,

no hills to climb;

a road before me

opens.

October 2011

Frances K. Prescott

The Yellow Wood

Two roads diverged in a yellow wood

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth. . .

Robert Frost,  from “The Road Not Taken”

So, I was originally going to blog about how fortunate we are, as writers, to be able to dwell in the yellow wood of possibility.  How we don’t have to worry about never being able to come back to a turning point in our stories, how we are free to make choices for our characters without the fear that we’ll make a misstep.  About how different that is from our real lives.

It’s true, in a way, although I must admit that when my characters start traveling down roads I didn’t plan for them, I like to see where they go.  I like to see what they may discover.  And I find that their choices are usually the right choices.

I don’t have to bring them back to the yellow wood to try the other path.

Maybe that’s true of anything.  We may peer down one road as far as we can, but take the other, knowing we aren’t coming back again.  And maybe that’s all there is to it. 

I could bring my characters back to the yellow wood.  But I trust them to find their way.

Just as we must trust ourselves.

Happy writing, friends.

Words

I like to tell people that I’m drawn to writing because I can’t take good pictures.  I’m not a talented artist or musician.  And yet there are some moments that are so beautiful, I want to remember them forever.

The clear, crisp sunrise of winter, pale pink on its edges, a white-throated sparrow chip-chipping away at the icy stillness. . .

A grey wood watered by the slipping song of a thrush, drawing out of the brambles a gauzy green veil.

A thin, dry hand patting the back of my own.

I write to preserve my memories as much as I write to create worlds.  And I write, because, strangely, words are not my friends when I speak. 

Ask my husband.  Ask my friends.  Ask my kids or my students who always have to complete my sentences in class. 

Words are my friends on paper and screen.  I can anchor them here, rearrange them, paint and draw with them.  But in the air, they fly away before I can speak them, like caged birds that have found an open door.

Maybe that’s the way it is for me.  I hold them too tightly within myself.  I cling to my words as I cling to my memories.  I need to practice letting go.

My main character is working on letting go right now in my story.  I’m not sure how she’s going to do with it.  I think she’s ready.  Which means she’s learned more about life in her twelve years than I have in forty-eight. 

Wish us both luck.

Smudgy the Muse

My daughter snapped this shot of me at work today.  Smudge is a great companion--and I never want to get up and stop typing when he's so cozy in my lap!

To be known

The very first picture book I wrote (still tucked away in a folder on my computer) is a story called “My Big Brother is Different.”  I have not submitted it yet—for one thing, I think the title is horrendous—but I looked back at it today as I was writing about Cara and her brother, Mickey.  The picture book sums up many of the joys and frustrations in the relationship between a seven-year-old girl and her developmentally disabled brother.  One of the most important pages in the picture book really ties into the part I’m currently writing in my WIP today.

Other kids don’t understand.

They stare at him, and smirk, and point.

It makes me want to scream.

They don’t know my brother.

They don’t know my brother. It’s a recurring theme in much of my work.  Probably because it was a recurring theme throughout my life.  And I finally understand that it’s about prejudice.

My brother looked different.  He acted different.  He was different.  And the common pre-judgment (prejudice) that people share when they see a disabled person is that he or she is less of a person than anyone else.  (S)he is without feeling, or nuance, or worth.  So it’s okay to stare, or point, or make assumptions that they are simply taking up space in this overcrowded world and ignore them.

And nothing could be further from the truth.

In the last sixteen months of my brother’s life, I posted notes on his hospital and nursing room walls for the staff to read whenever I couldn’t be there with him.  I wrote about his favorite show (Walker, Texas Ranger) and his favorite activities (fishing with his cousin, John, and going to McDonald’s with our dad).  I wrote about the family he loved, the sister he lost, the jobs he used to hold with his supervised work crew.

And when Bobby passed away, I tried to write many of those things into his obituary.

I wanted my brother to be known. 

And he was.  Nurses and doctors and PCNs took the time to interact with him, to recognize his warm spirit, to become attached to him.  Some of these people would have done so whether I wrote notes about him or not.  Bobby’s spirit would always shine through if you took enough time to get to know him. 

But some people would not have taken the time, or would have been uncertain, or afraid to interact with Bobby.  Those were the ones who might turn their heads when I took Bobby out in public in his wheelchair, who hoped that if they ignored us, we would go away. 

I thought that, as an adult, it wouldn’t hurt so much.

It still did.  But it was different. The difference being that, when Bobby was fifty and people would turn away rather than help us get through a door with a wheelchair, or would ignore his cheery ‘hi!  have a good day!’, I was old enough to understand that they were operating out of fear. 

I had learned that I could smile and say ‘good morning’ and ask for help despite the averted eyes, and that many people would take my cue and relax.  And that those who didn’t probably deserved my pity, rather than my anger.

At the age of seven, it was harder to handle. 

So, as an adult, I take my pen in hand to continue speaking for my brother, for my sister, for other people’s disabled sibs and for anyone who is ignored or taken for granted.  Did my brother have a stubborn streak?  Did my sister have a temper?  Would they put their arms around me if I were sad, or make me laugh?  Does that little girl in the wheelchair have a richer life than you may ever know?

Maybe my writing can open a door on someone else’s life.  Someone overlooked.  Someone who deserves to be known.

What if. . .

You’ve said it yourself. It’s kept you awake. You keep it pinned like a shining star in the darkest corner of your closet. It haunts your dreams and lights your days; it’s one of the mightiest phrases in a writer’s box of tools: 

The amazing “what if. . .”

“What if” fuels the imagination and can set small, furry feet hurrying down the road in search of adventure.  It can instill a house with sentience and drive its occupants mad with fear.  It can bring wood nymphs to life and set horrors loose down city streets. 

It can open worlds.

“What if” brought the characters of my current WIP (work in progress) to another world.  A world in which outsiders are noticed immediately and sought out for their usefulness to those in power.  As I wrote about Cara and her autistic brother, Mickey, entering this world, I was delighted to delve into a swirl of “what if’s”—and to realize that I had a say in which ones became reality. What if trees could give gifts?  What if a mist could transport people to other worlds? What if colors didn’t exist? This was freedom, unlike any freedom I had found in realistic fiction.  Writing fantasy was amazing!

And as I wrote and explored my world, a great “what if” resounded within me.  An impossible “what if” that had been locked away in my brain for a long time—long before this WIP was begun.  A “what if” that will be recognized by most “typical” sibs of the disabled, even if they’ve never voiced it to others.  What if I could take away Mickey’s disabilities?  What if Mickey weren’t disabled in this other world?

That was when I realized I’d entered “writing as therapy” territory.  That’s not a bad thing—but I think it’s better for writers to be aware of the big issues they’re tackling when they enter the hidden corners and stairwells of this realm.  Otherwise, they may trip on them in surprise.  I realized, as I was writing about Mickey’s transformation, that I had tripped upon one of those unspoken “what if’s” from my late childhood and adolescence.  What if Bobby hadn’t been born with his disabilities?   I took a deep breath and headed down the stairs into the depths of my memory.

Early childhood had been a joyful time.  My family was my family; things were what they were.  I could understand that everyone was different—that wasn’t a mighty hurdle as I learned about my sibs’ disabilities. And we were happy, my sibs and me.  But as I got older, and I passed milestones that my big brother would never reach—learning to read, getting my driver’s license, leaving home for college—the reality of his limitations was something I railed against.  It was unfair.  It was not right. Those were the hardest years for me as a sibling.  I did not talk about these things with my parents.  I knew they had enough on their plates.  But it hurt.

“Someday I be able to read, Frances?  Someday I drive a car, too?”  Bobby was so proud of me, his little sister, reading him books and taking him to the mall.  The thrill of my accomplishments was  real—for him, and for me.  I was happy that I could read.  I was proud that I’d gotten my license.  But there was an added dimension to all of my accomplishments.  An augmented understanding that I was privileged to reach the milestones that many others could not.  That my big brother could not. I had a sense of guilt—the old “why him and not me?”—but also a sense of responsibility.  Everything we are able to do, everything that we take for granted, is a gift.  I wanted Bobby to be able to do these things, too.

Back to the big “what if?”.  What if Bobby had learned to read, had learned to drive?  What if he had been able to hang out with friends, and go to the same school as me, and tell me which teachers to avoid and which classes were the best ones to take?  What then?  Would it have been a better life for him?  I wondered that, and was certain at the time that I knew the answer.

Bobby passed away seven weeks ago.  It is hard.  I miss him terribly.  I wish I could see him again, and yet I know he could not go on. 

I’ve seen how both my siblings’ stories have ended. Their lives were meaningful and full of happiness and satisfaction with the work they were able to do.  I found that, as time passed, “what if they weren’t disabled?” became just an unproductive speculation on my part.  Background noise in the reality of our adult lives. Bobby and Jeannette were who they were, and the world is a better place because they were part of it.  There is no question that’s true.

So why bring it up?  Why raise the old “what if they weren’t disabled?” question as a writer of children’s literature, if, as an adult, I find the question to be unproductive?

Because it’s an opportunity.  An opportunity to explore what I think about disability and fairness and life in the way that I wanted to when I was growing up.  Because that’s what writing and reading are about, at least in part.  We use art and literature to make meaning of the world we live in now.  To create a dialogue with our innermost self about life, and fairness, and love.  Maybe my dialogue will resonate with my readers.  Maybe some of them will have disabled siblings and say, “What, you think about that, too?”  Maybe some will just see it as a chance to explore the impossible.  To think about fairness.  About love.  But, no matter what, the question becomes a door to open.  To explore.

What if that door opened for you?  What if you walked through it and discovered questions in your life that you thought you’d discarded long ago? 

What’s your big “what if. . .?”

Bones and Thorns

Taking it down to the bones.  That’s what I’ve been doing with my writing these days.  Looking for the structure of it all.  Not the structure of a single story line—something more elemental:  the structure of my body of work as a writer.  My poetry.  My picture books.  My novels and short stories. What gives it shape?  What supports it?  What makes it different from other bodies of work?  I’m not talking about themes.  I’m talking about foundations.

How do I define myself as a writer?  As a person?

What’s in my bones?

So Long Ago

When my mother sang us

her old Japanese songs,

the window shades were pulled

and sunlight tiptoed past

the quiet bedroom. 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.

Daughter of a Japanese immigrant and a French/Irish American father, sister sandwiched between two intellectually disabled siblings with degenerative muscle disease, my bones are inlaid with the experiences of our shared journey.

Worry, fear, joy, guilt, contentment. . . in my picture books and upper-middle grade/young adult novels, I hope to give voice to the tangled and thorny emotions experienced by “typically developing” siblings of children with special needs.

But I do not choose to hide among the bones (although Cara, the main character of my current work in progress, is literally doing so right now).  I can't dwell in the past. I choose to see what I can build upon the bones--on the thorny emotions, the good and the bad.  Hence, the title of my blog.  Be happy the thorn bush has roses.

A rosebush, when whittled down to bare bones, reveals a lot of prickers.  But the thorns give rise to a multitude of flowers. 

A life, when pared down, reveals joys and challenges.  But the stories that blossom from each life are just waiting to be told. We can make them beautiful.

What do you see when you take your life down to the bones?  Where are the thorns?  Where are the roses?

Welcome to my blog.  I’m off to rescue Cara from her hiding place now.  She may need those bones for shelter now, but she can't stay there forever.  She has a story to share.