Ten Years On: Revisiting the Magic Pebble

This is an essay I wrote before blogging was invented, composed for someone who was our first magic pebble. I posted it a few years ago on LettersHead, but here is clearly where it belongs. This is for you, K.

We used to read William Steig’s Sylvester and the Magic Pebble every night.  It’s the story of Sylvester Duncan, a young donkey that finds a magic red pebble, and, faced with a fierce lion on his way home, Sylvester panics and turns himself into a rock.  His frantic parents look all over for him, but give up in despair after a month of searching.  They are reunited a year later when his parents lay out a picnic on the rock that is Sylvester, and happen to find the red pebble and put it on the rock.  Sylvester wishes successfully to be himself again and they all go on happily with their lives, saving the pebble for a time when they may need something more than to be together as a family.

Whenever I read this story to our children, I find myself identifying with various characters in the story.  On some days, I am the mother and W. is Sylvester, hidden in the stone of autism, wanting to get out but locked in the by the spell of the pebble.  We are Mr. and Mrs. Duncan, haplessly eating lunch on the rock, wondering how we can possibly go on with our lives when the fate of our son is such a complete mystery to us.  On some nights, the story in my head ended there, with W. still trapped inside the rock.

There are more dramatic versions.  There’s the Harry Potter version where Sylvester the Dobby rock starts hurling itself around, crashing into people and things, a possessed bludger that no petrifying spell can stop.  The wayward rock eventually wears itself out, but only after leaving most of the Duncans’ town of Oatsdale beaten and bewildered.  Mr. and Mrs. Duncan split a bottle of dandelion wine and dream of summer on the beach.

Occasionally, I am Sylvester, trapped inside the rock, wondering how I got there and wanting only to sleep to forget how I got myself into such a spot.  The world moves around me, the people and seasons come and go but because I am a rock and I don’t look like myself no one knows I am there.  I am inches from the magic pebble that will set me free, but I am helpless to touch it or even be sure that it is there.  My parents are gone.  I cannot be rescued the way Sylvester was; there is no one to rejoice over my return so perhaps it doesn’t matter whether I am a rock or not.  But just as I warm to my mid-life crisis, I am touched by my magic pebble – it is W., reaching with two fingers to push up the sides of my mouth to make me smile.  And it is M., with a smooch that could bring the hardest granite to life.  And A., too, working her own magic just by reading her own book on the floor next to us.

And there are magic pebble days, days in which someone or something brings our beloved W. back to us.  On these days the story ends just as it should; the boy I see and the person he is inside are one and the same and we inhabit the same world.  The magic is the love we share, in his friends, in the water and sand of the beach, and in the people who work so hard to make the world understandable to him and to make him understandable to us.  These are the best days of all, and as the years go by there are more and more of them, and that is a miracle I don’t need a book to help me understand.

Finding Inspiration in the Life of Roger Ebert

IMG_3671“‘Kindness’ covers all of my political beliefs. No need to spell them out. I believe that if, at the end, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. To make others less happy is a crime. To make ourselves unhappy is where all crime starts. We must try to contribute joy to the world. That is true no matter what our problems, our health, our circumstances. We must try. I didn’t always know this and am happy I lived long enough to find it out.”

– Roger Ebert

Roger Ebert died today. I loved watching Siskel and Ebert, and even though I found myself agreeing with Gene Siskel more on serious films (my first movie critic love was Pauline Kael – I read all of her books and wrote a paper on her in high school), when Ebert said a movie was delightful I knew it was worth watching. When I got around to reading his reviews instead of watching him on TV, I liked him even more. Finally, the grace and bravery with which he handled his disabilities at the hands of cancer made him a hero. By that time (2006) I was trolling for examples of what people did when life threw them a curve. So many people withdraw from public life when faced with that kind of adversity, but he understood, used and took solace in the healing power of the written word. When we visited Chicago in October 2011, the only souvenir I brought back was a signed first edition of his memoir, Life Itself.

We take inspiration where we find it, which means it is important to raise our heads sometimes and take in the world free from the lens of autism. What better way to do that than watch movies, which can transport us to times and places far beyond our oft-constripted world. When I am looking for  a good movie – new or old – my first stop is the great movies page on rogerebert.com. You don’t have to read Robert Ebert to admire him, but if you need inspiration, there is a lot to choose from.

Pick a movie, any movie.

Putting Autism in its Place

Written by me on my non-autism blog. Clearly, I’m not that good at compartmentalization.

LettersHead's avatarLettersHead

Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with…

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Light it Up Blue: sometimes the reflection is brighter and more beautiful than the flame itself

Our blue light

Our blue light

As I angled the camera to get a good photo of the blue candle, I saw that the reflected flame is more beautiful than the original. With all the talk of Holland* and dashed hopes that some of us face with an autism diagnosis, with all the planning and worrying still to come, with all the explaining and misunderstanding and misinformation in the world out there, with all the emotional collateral damage yet to assess, there is still a light that shines in the darkness of what my life would have been without him (and his siblings, who show such tremendous grace and humor under pressure). As much as ever, I embrace what I wrote in 1998 when I tried to describe what turned out to be autism: this boy is closer to heaven and hell than I will ever be on this earth. His unfiltered (or sometimes, overfiltered…) take on the world reveals the sublime and the absurd and gives me the courage to keep fighting demons that, without my children, surely would have overtaken me long ago.

But I know the roles can reverse. There are many who justifiably curse the cloak of darkness that autism drapes over their child. It’s impossible to be grateful for every moment; there are millions of them that are best forgotten. But it’s in those dark moments that we are most grateful for the light when it does return (if we can just remember where we hid the matches).

***

*The Welcome to Holland essay inspires many people when they first face a disability diagnosis, but Susan Rzucidlo’s Welcome to Beirut has always been my personal favorite for families on the spectrum.

Easter Monday, April Fools’ Day, Autism Awareness Month. The Mind Reels.

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Renewal and irony and reality all converging on a single spring day. Melting snow, green shoots, black earth. The extremes of New England’s seasons are the metaphor I cannot ignore.

I tend to roll my eyes on the awareness month for anything, and even more so for Autism Awareness Month because I’m conflicted about foisting upon the world an awareness of what I consider to be our private business. But making the world more navigable for our boy is part of that business and thus I need to try to find ways to use the opportunity that autism awareness month presents without seeming insufferable and needy (good luck with that, I know). And what is a blog for if not for saying something that I think might be worth reading? I ask myself all the time why I do this and most of the time the answer is that I write about it because I can’t not write about it. From my perch, autism awareness is as much about the journey and the humor and poetry borne of the angst and the crazy – it’s not nearly as helpful as what others are contributing to the dialogue, but it’s what I have.

So in a nod to the everyday awareness that we have of autism, I’ll post something every day (an essay, photo, or link to those who are saying it better than I) in April in hopes that something and interesting and good will come of it.

Today, John Elder Robison continues to fight the good fight for people with Asperger’s Syndrome in the wake of Sandy Hook.

Saturday Moment: “Is THAT the Holy Child?!” The Pieces Fall into Place at Mass.

The Scene

Our church as it looked in January 2013

For many reasons going to Mass is a production for us (I documented some of our more memorable visits), and so we do not attend as regularly as I would like. The politics of the Vatican in recent years did little to stoke my religious fervor but we do make frequent trips to the empty church to say prayers for those we love, and in particular to remember the young friend my son lost to leukemia last year. The choice of Pope Francis I last week led us to venture to Mass this past Saturday afternoon, in honor of the forgiveness, renewal, and the promise of a fresh start his papacy and this Easter season may hold for all of us. It didn’t hurt that our boy, after a sigh, seemed willing to brave the crowd if it meant a chance to recall his friend. So off we went, arriving early so we could get a seat with a good view of the altar and the Blessed Sacrament.

We usually sit in the front section a few rows back. Hanging from the vaulted ceiling high over and in front of the altar is a massive crucifix with a fairly graphic representation of Christ. It has always been there, in that spot. There we sat, with my boy and his iPod open to a picture of his friend. He had used the paint app to put a yellow halo on his head, and he held it up high so that it faced the Blessed Sacrament. As I reached up to lower his arm gently he looked at me in alarm, pointing to the crucifix as if seeing it for the first time.

“Is THAT Jesus?!” he said in a stage whisper. I nodded, two fingers presses to my lips to remind him to speak quietly and to keep myself from smiling.

“Is THAT the Holy Child?!” Suddenly, the connection between Christmas and Easter began to forge in his mind.

“What HAPPENED?!” I told him we would talk about it later but the questions kept coming.

“Is he dead? Who killed him? See the blood?” He turned the iPod so his angel friend could see, too. That almost did me in.

Finally, in the car I did my best to tell him the full narrative, Christmas to Easter, promising him that we will go back during Holy Week and see the stations of the Cross that tell the entire story of the Crucifixion. He was wary, and raised his hand, palm toward me.

“I’m good.” Then he thought for a minute, playing something in his head. I mentioned that we have a movie at home that tells the story of Jesus.

“Wait! I get it!” And then he did a perfect imitation of the announcer’s voice on the preview from one of his Christmas videos:

“JESUS of NAZARETH!! That’s him!” It only took, like, fifteen years.

When we returned home he bounded up the stairs to say hello to his sister. She came downstairs, laughing.

On this visit in January he didn't even notice the crucifix.

At that point he didn’t even notice the crucifix.

“What happened? He came up to my room, jumped on my bed and said church was AWESOME. He never does that when he comes home from anything, ever.” I told her everything, and she went up to his room and hugged him. A while later he emerged and called down to me, standing at the railing where I could see him.

“Mom, does Jesus make our hearts happy?”

His smile, his voice, and the way he had his hands clasped over his heart told me it wasn’t really a question.

The Mystery of 2009 Returns

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Tonight we went out for an early dinner, and I could not convince the boy to tear his eyes away from the iPod. Usually he will at least look out the window at the cows on the hillside. Nothing doing. He met my eyes and said with frustration, “Mom, I am just too afraid of the world.”

“Why?”

“It’s just since 2009, when I was 14 and I saw the dates.”

“What dates?”

“Here, let me show you.”

He taps gently, furiously, and precisely on my phone, spending a lot of time on the Wurdle app, and then hands it back to me and sighs.

“Never mind, I can’t find it.” But then he takes it back and opens the calendar. Nothing remarkable.

“Dates. Birthdays. Worrying about death.” He hands back the phone and puts his earbuds back in.

Conversation over.

This is the beauty of blogging. I can go back to the summer of 2009 and see what I wrote – because the dates and the fear and this specific kind of withdrawal were all new to us then. But even after reading what I wrote then I don’t really know why all of those fears showed up today or how long they will stay – it could be as simple as the disruption of a half day at school or the disappearance of his memory bracelet from his dead friend. Or perhaps it is the big birthday that is coming up soon – or maybe it’s my worry about that reflected on him. He has my feelings before I do sometimes, I think.

Spring is coming; we’ll figure it out.

The ART’s “The Glass Menagerie” – a Southern Velvet Clash of Cultures, Lives, Centuries & People

Thoughts from our other blog on how old stories take on new meaning through the lens of parenting.

LettersHead's avatarLettersHead

IMG_3295 - Version 2

Snowstorms and all manner of events tried to sidetrack my visit to the American Repertory Theater’s production of The Glass Menagerie. After much ado I managed to go with one friend and meet another for a 2pm matinee on a snowy Saturday in February. I am not a theater critic – if you want to read a brilliant review of this play Ben Brantley is your man. I’m writing because it created a moment in my life I won’t soon forget. My memory of the play was of Kate Hepburn’s eccentric and rather monstrous Amanda Wakefield and a kind of over-the-top Streetcar Named Desire-ish play – sort of like watching a deep south train wreck in slow motion. I did not reread it or watch the movie again because I wanted to experience it in as new a way as possible – I knew that Tennessee Williams, Arthur Miller and…

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