Moving Through Challenge To “A Place of Peace and Resilience”

 

The original flap copy for THE ANTI-ROMANTIC CHILD described it as follows:

“Using Wordsworth’s poetry as a touchstone, Gilman speaks intimately of her poignant journey through crisis and disenchantment to a place of peace and resilience and shows how events and situations often perceived as setbacks can actually enrich us.”

In the past few months, many beloved people in my life have faced crisis and disenchantment, setbacks and challenges.  Friends and family members have been confronted with a cancer diagnosis, a father’s death, the loss of a dear friend and colleague, the news that cancer has spread, the break-up of a marriage, a serious illness, the loss of a job.   During this same time period, at bookstores, schools, and events, I’ve spoken to many parents who are in the first stretch of coming to terms with a child’s diagnosis of autism, ADHD, Down’s Syndrome, or other developmental/learning challenges.   When helping my friends and family members to cope with loss, sadness, and fear, when advising and offering compassion to parents terrified and disoriented by their child’s diagnosis or challenges,  I am often asked: how did I get to the place described above, “a place of peace and resilience,”  and come to view setbacks and difficulty as potentially enriching?

The first thing I say is that the “poignant journey” described above was not an easy or quick one, and it is one that I am still taking every single day!  By posting encouraging, uplifting, and hopeful quotations via Facebook and Twitter, I am both sharing the lessons I’ve learned from challenge and actively nurturing my own resilience in the face of the difficulties life continues to present me and my loved ones with.   We are all in this together, and a community effort of compassion and mutual support is one of the key elements in resilience.

Some synonyms of resilient: flexible, airy, buoyant, effervescent, elastic, expansive, hardy, irrepressible, pliable, quick to recover, rebounding, rolling with punches, snapping back, springy, strong, supple, tough, able to float and fly.   What makes us resilient and how can we all develop a greater resilience in the face of life’s daily stresses, inevitable challenges, and serious crises?  How can we remain optimistic in the face of apparently devastating news or deeply trying circumstances without succumbing to a Pollyannish blind faith or simple unconsidered denial?  How can we be both realistic and optimistic?  These are large questions that I’ll be exploring over the next few months on this blog, in interviews with inspiring people, via photographs and poems, and in my own musings and reflections.

On April 20th, I was privileged to appear on a panel called “Writing and The Art of Resilience” at the Woodstock Writers’ Festival.  Organized by Gail Straub, a brilliant advocate, spiritual teacher, and writer, I appeared alongside luminous Wellness Warrior Kris Carr (diagnosed with Stage IV cancer at the age of 31 and alive and thriving nine years later), priest and author of the wonderful spiritual self-help book Moving Through Fear Jeff Golliher, super (and super nice) literary agent Ned Leavitt, who’s represented numerous authors interested in helping us nourish resilience from Caroline Myss to Christiane Northrup, and editor Nan Satter, who’s worked on a wide range of projects about wellness, spiritual tenacity, and finding hope in difficult circumstances.  The discussion was  a thrilling tapestry of insight, inspiration, and wise counsel;  I hope to have a video to share at some point soon.  In the meantime, here’s a link to a piece about the Festival, with a photo of our amazing panel:

http://www.woodstockx.com/2012/04/28/woodstock-writers-festival-presents-varied-stimulating-weekend/

A few weeks later, I spoke with a newspaper reporter about resilience, hope, and facing challenge in one’s life and the result was this lovely piece about me and THE ANTI-ROMANTIC CHILD:

http://www.dailyfreeman.com/articles/2012/05/10/life/doc4fab3acd22524285302638.txt

At many of the talks I give, I recite this line from Toni Morrison’s Song of Solomon, “If you surrendered to the air, you could ride it.”   As I linger over the words, I can see the faces of my listeners relax and surrender to the incantatory beauty of Morrison’s prose and the deep wisdom of her idea.    I look forward to surrendering to and riding the air as we explore what it takes to face scary situations with relative serenity and find enrichment in challenge.

In Loving Memory of My Father, Richard Gilman, 1923-2006 (from The Anti-Romantic Child)

 

My dreams of romantic childhood were primarily formed, inspired, and fostered by my father.  Almost 50 when I was born, with a failed conversion from Judaism to Catholicism and a failed first marriage behind him, and with a strained relationship to his son from that first marriage, I think he saw in this second marriage and especially in his second chance at fatherhood an opportunity for redemption, for finding that place of transcendence and bliss, uncomplicated and pure happiness, that had proved so elusive.  And he committed himself to fatherhood with fervor and joy.

My very first memory is a kind of Wordsworthian scene, but one in which my father, the nominal adult, helped me, the young child, to see as a child ideally should.   It was a summer night in Spain, I was a little over three, and an especially dramatic thunderstorm woke me, terrified, in the middle of the night. The memory begins with my father’s voice in my ear and the two of us gazing out into the night.  Framed by the large window, the scene before us was like a little theatre: the familiar garden strangely unfamiliar, the sky an indigo blue lit periodically by silvery flashes.  Narrating the scene, my father sounded like a madcap sportscaster: “there’s a big lightning!  there’s a little one .  . . oh a big one again!” he exclaimed as he held me firmly with one hand and gesticulated skyward with the other.   I remember something disorienting becoming something glorious.   I remember feeling so safe not because he protected me from fear but because he helped me to confront it.  He didn’t tuck me back into bed; he took me to the window.   I remembered asking him: “when is the thunder going to come again, Daddy?” and him telling me “I don’t know, Sidda (my family nickname), but that’s part of the excitement, isn’t it?”  My father reassured me that it was all right not to know, to remain in a state of awe and mystery.  He gave what could have been a nightmare “the glory and the freshness of a dream.”

That same enthusiasm, energy, zaniness, and plunging into life he exhibited on the night of the storm in Spain informed his larger approach to parenting.  My father was dedicated to giving me and my younger sister Claire a childhood characterized by transformations of the common into the extraordinary, freshness of perception, spiritual intensity, and ardent dreaminess.  He participated fully in our imaginative life and shared our passions.  He looked forward to watching Sesame Street as much if not more than we did, and could have read to us from The Wizard of Oz series into the late hours of the night if my mother had allowed it.  He not only respected, he also almost seemed to share our belief that our Paddington Bears were not just well-loved stuffed animals but living, breathing members of our family; he asked them questions (which Claire and I answered in squeaky little boy voices), brought our baby clothes out of storage and gave us his old glasses and ties for us to dress them in, and offered them bites of his toast or sips of his juice.  He immersed himself in the world of our imaginary friends Tommy and Harry Tealock- “what did Tommy Tealock do at school today?” he’d ask, and once at the beach he cried: “there goes Harry Tealock!” while gesturing to no one in particular across the waves.  When I began to devour Hardy Boys and Nancy Drew books after he introduced me to them, he and I would compare notes on which plots were the twistiest, which titles were the spookiest (What Happened at Midnight and While the Clock Ticked) and which denouements the most satisfying.  He’d drive us to the library every weekend and help us pick books, read them to us over and over again, and engage in animated discussions about them with us.  He’d plan expeditions to a dollhouse store and share our rapture at the tiny Life magazines and miniature Coke bottles.  As the Reverend Gilman, he officiated at the numerous weddings of our stuffed penguins and bears to our Mme Alexander dolls (humorous because Protestant is the one denomination he never was).  As Director Gilman he visited the auditions Claire and I held for all-stuffed animal/doll productions of West Side Story and Oklahoma; he’d assess the vocal talent of Kanga and agreed that Horsie was perfect for the role of Judd Fry.  And as Maestro Ricardo Gilman, he conceived, directed, and served as ringmaster of a circus my sister, our dear friend Sebastian, and I put on in Sienna, Italy the summer I was seven.  Our best “trick” was the “clown car;” in a snaking rotation, we would all cycle through the back seat of our tiny Italian car and on the last go-round my father, who had lain unseen on the back floor the entire time with me, Claire, and Sebastian scampering over him, would rise from the floor and emerge, grinning triumphantly, from the impossibly small space.

My sister once aptly described what fatherhood meant to Daddy:

Fatherhood spoke to the core of who Daddy was as a person.  It resonated with his basic faith in creativity.  His love for the life of the mind.  His deep imagination. And his quest for spiritual enlightenment and beauty.  My father BELIEVED in childhood. And he infected my sister and me with this belief, leading us to develop the rich, imaginative life that we had as children . . . My father understood that imaginative creations were not secondary to real life but fundamental to a rich and fulfilling existence. Throughout his life, my father sought something higher, something beyond the dross of the everyday . . .  My brother, sister, and I provided him with that. We were more than just his children. We represented all that was good in the world.

My father’s magical combination of solidity and ebullience, fierce protectiveness and playful charm, made him both the most exciting and the most reassuring parent imaginable.   He was known in our family as the Great Finder, who could elevate a mundane search for a lost bus-pass or library book into a thrilling hunt complete with clues, retracing steps, and suspects, with my father in the role of the wise, witty, and unflappable Hercule Poirot, Sherlock Holmes, or Perry Mason (all great heroes of his).  On a nursery school outing to the Bronx Zoo, my father scooped up a young rapscallion who’d been bothering me, held him above his head, and said with a mischievous grin:   “I think it’s feeding time, and if you don’t stop pestering my daughter, it’s into the lion’s den for you!” But as anyone who knew my father well would attest, he was a person who himself needed a good deal of reassurance; he was an extraordinarily sensitive and vulnerable man.   Perhaps it was for that very reason that he knew especially well how to recognize and honor vulnerability in others, and that children and animals universally adored him.

Retaining that childlike intensity of feeling and capacity for wonder, that acute sensitivity as it blended into vulnerability, however, had attendant with it certain risks- for my father and for the daughters who learned to love as he did: with the entirety of our beings.   When you love like that, you can get your heart broken, even by a football team. My father frequently told the story of how, the day after he and I sat through a devastating Giants loss, I saw a photo in the New York Times of the linebacker Harry Carson sitting in dejection on the bench, and wrote him a consoling letter.  “You mustn’t be sad.  You’re a great player and a wonderful man,” I wrote.  “We’ll all be happy again. I love you. Priscilla Gilman, age 9.”  Just one year after I sent the letter to Harry Carson, I found myself uttering much the same words to my father as he was faced with the devastating loss of our family in the wake of my mother’s decision to end their marriage . . .

What though the radiance which was once so bright

Be now for ever taken from my sight,

Though nothing can bring back the hour,

Of splendor in the grass, of glory in the flower,

We will grieve not, rather find

Strength in what remains behind.

“Intimations Ode”

 

(from The Anti-Romantic Child: A Memoir of Unexpected Joy, pp. 5-9)

“All That We Behold From This Green Earth”: Happy Earth Day Everyone!

James in Connecticut, Spring 2004

 

Therefore am I still

A lover of the meadows and the woods,

And mountains; and of all that we behold

From this green earth . . .

. . . well pleased to recognise

In nature and the language of the sense,

The anchor of my purest thoughts, the nurse,

The guide, the guardian of my heart, and soul

Of all my moral being.

 

William Wordsworth, from “Tintern Abbey”

“Learning to Be the Right Parent For This Child”: A Q &A with Following Ezra’s Tom Fields-Meyer

 

Tom Fields-Meyer has been a writer and journalist for nearly three decades. He was a longtime senior writer for People magazine, where he specialized in inspiring human-interest stories. His writing has appeared in The New York Times Magazine, The Wall Street Journal, The Washington Post, and the Los Angeles Times.   Tom is a native of Portland, Oregon and a graduate of Harvard College. Tom and his wife Rabbi Shawn Fields-Meyer live in Los Angeles with their three teenage sons.

Tom Fields-Meyer is the author of the touching, sweet, and wise memoir Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son.  He and I have never met, but I am a huge admirer of his, and can I just say that I would follow his dear son Ezra anywhere?!  I love him!   Recently I asked Tom some questions in honor of Autism Awareness Month and National Poetry Month; here are his very thoughtful and compassionate answers.  They not only provide wisdom and support for parents of special needs children; they also bring the immensely charming Ezra to my readers.  Enjoy him, everyone!

1) Tell me about your son.

Ezra is the happiest person I know. He knows what he’s passionate about: animated movies, animals (particularly dogs), and animated movies about animals. The other day I was driving him between two of his favorite places—the zoo and his weekly animation class—and I had to give him some, shall we say, negative feedback about his behavior. He tried to listen intently, but then he spotted a passing billboard, and he couldn’t stop himself: “Madagascar 3! Look! A billboard for Madagascar 3: Europe’s Most Wanted!” He was so gleeful, and I couldn’t help but smile along with him.

2) What is the most important advice you would give to the parents of a child newly diagnosed with autism?

I try not to give advice, as everyone reacts differently to having a child with challenges. But the most important thing for me was avoiding the instinct to fix or change my child. At first my wife, Shawn, and I thought our job was to find the best doctors, the best therapies, the best diet. But then I came to realize that this isn’t about finding the right expert. It’s about learning to be the right parent for this child.

3)  What types of therapy or therapeutic approaches have most helped your child?

In my experience, it doesn’t matter what the person’s title is or what combination of letters they have after their name. The people who have helped Ezra most are those who have made a real, human connection with him—the ones who have taken the time and effort to get to know him and appreciate what’s special about Ezra. He feels that, and he rises to the occasion.

4)  What is the worst, most misguided, offensive, or otherwise disturbing statement you’ve ever read or heard about autism?

The list is so long. In the first few years, we heard a lot about early intervention and how the mind is malleable only up to a certain point. That caused a great deal of panic about doing all of the right things before Ezra’s brain locked in for good. Of course, that was nonsense. Ezra is 16 now, and we see growth, development and progress almost every day.

5)  If you were invited to speak to a group of typically developing children of your son’s age in order to educate them about autism, what would you want to tell them?

I would try to give them a sense of the complexity of Ezra’s mind: He’s always loved animated movies and has an elaborate calendar in his brain. When he was 12, we were at a bar mitzvah party and he started asking strangers their birthdays. Then he’d tell the person which Disney movie premiered on that same day. “June sixteenth? Pocahontas came out on your birthday in 1995!” At the same time, if you asked him the names of the seven or eight kids in his seventh grade class, he couldn’t tell you. He’d guess. The same wiring that makes these superhuman feats possible makes it extremely difficult for him to do things the rest of us find so ordinary.

6)  What is your child’s biggest fear or source of anxiety? What helps him cope with it?

Just not knowing when something important to him is going to happen. Ezra likes to see movies on the first Sunday after they come out. When there’s a big animated feature film coming up, he’ll remind me a few dozen times a day that we’ll be seeing it on Sunday, and then ask me again if we’re going to see it on Sunday. “Of course we will,” I’ll say. ” Ezra will say, “I’m just making sure.”

What helps? Writing it down, showing him the tickets, reminding him that last time he was worried about something like this, it worked out just fine.

7)  What is your biggest fear about your child’s future? 

When it comes to Ezra, I try to live in the present. My wife will tell you that I worry about a lot of typical things: money, work, various logistical matters. But I don’t focus on fears about Ezra’s future. We put a lot of energy and creativity and effort into him, and experience has shown that he nearly always exceeds our fondest hopes, and always in ways we don’t expect. I have great faith in him and his ability to find his way.

 8) What is your greatest hope about your child’s future?

That he will continue to be happy, that he’ll be surrounded by love, and that people appreciate him for who he is.

9)  How is parenting a child with autism like and unlike parenting a typically developing child?

Ezra is the middle of three brothers. Shawn and I made a decision a long time ago that our family was not going to be defined as a family about autism. We try to treat our kids equally, to give all three of them our love and attention. Parenting is about paying attention to the child, listening to the child, loving the child, and helping the child to become the best possible version of himself or herself. That’s true with any child.

10)  What one thing can anyone do to help support people with autism and make our society a more congenial place for them?

These things happen on a very small scale. Sit down and spend time with a person with autism. Listen, watch, share something about yourself. Talk to the person as a person —not as a person with special needs, or a person with a disability. Just a person. It’s all about building relationships.

11)  What is your favorite poem and why? 

I love listening to Garrison Keillor read poetry on the radio, and whatever he read most recently becomes my favorite. Shawn is a rabbi and she has a poem she often uses in her teaching: “The Summer Day” by Mary Oliver. It’s a reminder to live in the moment and take note of life’s blessings. (It also happens to include a swan, a bear, and a grasshopper. Any poem with that many animals would make Ezra happy as well.) I love the last lines: “Tell me, what is it you plan to do / with your one wild and precious life?”

12) Does Ezra like poetry and if so, what is his favorite poem and why?

Ezra creates animation. He also loves words and wordplay. At 12, he created a short film called “Alphabet House” that inspired a children’s book called E-Mergency! created by Tom Lichtenheld, the bestselling children’s book author and illustrator. Some of Ezra’s best animated shorts are based on Shel Silverstein poems. He recently made one called “The Two Boxes,” about two cardboard boxes that become friends. I love that he wanted to make a movie about friendship, and I adore the scene when the two boxes walk off into the sunset together.

“Everything Is A Miracle”: A Q &A with The Miracle Project’s Elaine Hall

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

– Albert Einstein

 

Today I’m sharing a Q &A I recently did via email with the inspirational teacher, author, crusader, and mother Elaine Hall.

Elaine Hall, or “Coach E!, who the New York Times described as “the child whisperer,” was a top Hollywood children’s acting coach whose life changed dramatically after her son Neal, adopted from a Russian orphanage, was diagnosed with autism. When traditional behavioral therapies didn’t work, she sought the help of the esteemed Dr. Stanley Greenspan who encouraged her to rally creative people to join Neal’s world, and he slowly emerged out of his isolation. Elaine then developed these methods to train staff and volunteers and created The Miracle Project, a theatre and film program profiled in the Emmy winning HBO documentary, AUTISM: The Musical, which aired on OWN, the Oprah Winfrey Network, on April 15th, 2012. Elaine has appeared on CNN, CBS, and Oprah Radio, and been featured in the LA Times, the New York Times, and the Wall Street Journal.  She is a keynote speaker and trainer throughout North America, and blogs for the Huffington Post.  Her memoir, Now I See the Moon, was chosen for World Autism Awareness Day at The United Nations.  She has received honors from Autism Speaks, The Mayor of Los Angeles, Senator Pavley, Areva Martin, Holly Robinson Peete, and others.   Her latest book, co-authored with Diane Isaacs, Seven Keys to Unlock Autism: Creating Miracles In The Classroom, shows parents and teachers how to apply the principles of her work to educational settings.  Elaine also recently created an arts enrichment and religious education program at Vista Del Mar in West Los Angeles. She lives in Santa Monica with the two loves of her life, her son, Neal, and husband Jeff Frymer, a Marriage and Family therapist.

I first encountered Elaine Hall when I watched AUTISM: The Musical in the spring of 2008.  From the first haunting notes of Joni Mitchell’s “Urge for Going” sung by a luminous autistic girl to the triumphant final performance of Elaine’s Miracle Project kids, I was completely bowled over.  Elaine herself reminded me of both my late mother-in-law, an unconventionally creative and effervescent yet deeply spiritual drama teacher for young kids, and of my beloved friend and mother figure Mia Farrow, whose oldest son I dated for six years and whose pioneering work in the fields of theatre and film, international adoption, and human rights resonate with Elaine’s.

But after seeing AUTISM: The Musical, I didn’t connect with Elaine Hall for another few years. When my memoir, The Anti-Romantic Child: A Story of Unexpected Joy, was published in the spring of 2011, my publisher urged me to set up a Twitter account, and soon after joining Twitter, I was told that I should follow Elaine Hall.  “Ahh!”  I thought, “a benefit to this new world of social networking is that I can actually connect with people I admire!”  And connect Elaine and I did, first via Twitter, then email, and then I bought and read her beautiful and brave memoir, Now I See The Moon, and marked it up with all kinds of “Yes!” “ohhh!”s, and “love this”es. I rented AUTISM: The Musical again so that my then boyfriend (now husband) could experience it, and Chris, a public school music teacher who understands better than almost anyone the fundamental importance of the arts to education and who fiercely loves my autistic son, was as rocked to his core as I was by Elaine’s work and fell in love with her autistic son, Neal, as I had.  About a week later, I spoke to Elaine for over an hour on the phone as part of research I was doing for a piece (it was one of those “how is this possible?!” moments that comes when you become a published author with a platform and suddenly have access to people you most admire).  After the conversation, I wrote to Elaine: “Elaine- it was one of the most profound and moving conversations I’ve ever had.  You are a beacon of goodness, wisdom, and integrity in this world.  I’m so delighted to know you!”

But nothing could prepare me for the experience of meeting Elaine in person.  I was standing behind a lectern in front of a sizeable crowd gathered to hear me read from my book and answer questions at Vromans Books in Pasadena, California. At one point during the Q & A session, I expressed my wholesale rejection of the idea that autistic people lack empathy, and I noticed a head bobbing with particular vigor, and then, I saw a luminous face beaming the most embracing and affirming smile at me. “Elaine Hall!” I thought, and I got what I can only describe as a “warming chill” up and down my spine.  After my presentation had concluded, Elaine came up to the front of the room and she and I hugged and hugged, I signed her copy of my book, and then I waited to see what she would think of The Anti-Romantic Child.  One of the great honors of my life was having Elaine and her co-author Diane Isaacs select The Anti-Romantic Child as a Key Resource for Parents and Educators of children with autism in their just published book 7 Keys to Unlock Autism: Making Miracles In the Classroom– a fabulous book about how to support our kids in school (and with a foreword by another hero of mine, autistic self-advocate, professor, musician, and music teacher Stephen Shore).

Elaine is tiny in body but huge in spirit.  She is one of my greatest heroines, inspirations, and role models, and one of the people in whose company, whether virtual or actual, I feel most peaceful, most authentic, and most truly joyful.  Her attitude, approach, and example are beneficent, nourishing, and uplifting not just for families affected by autism but for all of us.  I’m so pleased to be able to share her wisdom and grace with my readers today.

1) Tell me about your son.

Neal Weston Katz was born Nial Nordonuv in Ekaterinburg Russia, on May 6, 1994.  Seven weeks premature, Neal,  – now almost eighteen years old, 5 foot 10 inches and 134 pounds –weighed barely three pounds at birth, and was in a hospital until he was 6 months old.  Neal became my son in April 1996 when I adopted him from a Russian Orphanage.  When he arrived in the US, at 23 months old, he suffered from malnutrition, scurvy, liver toxicity, stomach ailments.  He revealed severe attachment issues and exhibited odd behaviors such as spinning around in circles, opening and closing cabinet doors, and staring at his hand for hours at a time. (Our journey is chronicled in my first book, Now I See the Moon http://www.amazon.com/Now-See-Moon-Mother-Miracle/dp/B004R96U9U/ref=pd_bxgy_b_img_b)

Shortly before his third birthday, Neal was diagnosed with severe autism, sensory processing disorder, attachment disorder, Apraxia, and cognitive impairment.  Through intensive interventions, Neal has emerged into an extraordinarily bright, compassionate, adventurous young man with a great sense of humor.  Neal uses sign language and voice activated ipod touch and ipad to communicate.  He has exceeded the expectations of doctors, therapists, educators, and family members and inspired two books, an Emmy Award winning Documentary, and an internationally acclaimed arts program (the Miracle Project) and religious education (New Gadol at Vista Del Mar) program for children on the autism spectrum.  Neal’s image has made an impression at The United Nations for 3 out of the 5 years that they have celebrated World Autism Awareness Day. (He is one of the nonverbal teens profiled in Kate Winslet’s book, The Golden Hat).

Neal has made a direct impact on many people – volunteers choosing to go into careers relating to special needs after being with Neal; students writing college essays about their experiences with him; professionals changing their entire way of working with kids after experiencing first hand, Neal’s progress.  Neal is honest, intense, and direct. He loves life, nature, and rollercoasters!

Neal chooses to push through his challenges with autism.  He types how difficult being nonverbal is for him and his wish to be able to speak like “the regular” and yet he continues to challenge his limits daily.  Neal is my hero.

2) What is the most important advice you would give the parents of a child newly diagnosed with autism?

Never Give Up.  When one door closes, another door opens.  Reach out for help.  You are not Alone.  Autism, though challenging, can be the most extraordinary journey of your life.  There is hope, humor, and happiness after diagnosis. Stick with the winners not the whiners. Always find one parent some place whether it be on the internet, a book store, or a parent of a friend – who knows just a little more than you do.  Someone who has walked the path before you.  They are there!

3) What types of therapy or therapeutic approaches have most helped your child?

D.I.R. Floortime created by Dr. Stanley Greenspan has been the cornerstone of our therapeutic approaches.  The key to floortime is to tune into the child, follow their lead/need and make Relationship with the Child paramount.  With this in mind, any other therapy and intervention is effective.  Plus every parent wants a relationship with their child.  With autism, I have found it is most helpful to tune into the child’s world first, before coercing them into ours.  Neal chose to join our world.  I could not bribe him, force him, or trick him into becoming part of our world….

I also needed to leave my pre-conceived notions of ‘normal’ behind.  Neal’s sensory system is extremely sensitive.  He needed to create protective devices to cushion him from the distractions, distortions, and disruptions of the typical world.  When you think about it, the world is too loud; there is too much going on for all of us.  Those with autism recoil from it.  We, so called typically developing folks, try to make sense of it all. Who knows the truth?

Other interventions that have been profound are Neal learning to point to words and to type. The ipad and ipod touch have been great tools for Neal to have access to communication.  Sign language has also been a great tool for Neal to communicate with family members and his coaches.

Becoming part of a social community with typically developing peers and those with autism and other special needs through The Miracle Project and through the religious education program, Nes Gadol at Vista Del Mar.

4) What is the worst, most misguided, offensive, or otherwise disturbing statement you’ve ever read or heard about autism?

That children with autism lack in empathy and do not desire friendships.  I have found kids (and adults) to be the most sensitive, loving, HONEST, kind humans I have ever been privileged to know.  We just need to learn to listen to the child who does not speak.  Read cues.  Seek to first understand then to be understood. Kids with autism want friendships like everyone else. Given the right environment of love and acceptance everyone blossoms.

5) If you were invited to speak to a group of typically developing children of your son’s age in order to educate them about autism, what would you want to tell them?

I actually speak often with and give workshops to typically developing children Neal’s age and younger.  We first start out by looking at our own strengths and weaknesses.  In reality, we all have special needs. I guide them to identify what are the most challenging things for them to do.  Perhaps they are great at math, but terrible with writing; or excellent in P.E. but terrible with academics.  I share that I am challenged with organizing paper. That it is easier for me to write a script then it is for me to figure out how to copy, collate and where to file it.  I then ask the students to imagine if all day long they had to be in a world that only judged them on the things that they were the worst in.  For example the math challenged student would have to be in a math program 5 hours a day.  Or I would have to work in an office where all I did was copy, collate and file.  I ask them to think how that would make them feel. I then do a series of exercises with them where they work with partners to 1.) tell them what is wrong with them; 2.) talk about them as if they aren’t there 3.) make fun of them for the thing they are challenged with.

After this exercise, I ask them how they feel.  The answers are profound: “I felt terrible; depressed; low self esteem; bad about myself, etc. “ I ask them how many times they say bad things to themselves.  They all agree that they put themselves down all the time. I invite them to “stop it!”  They laugh. I relate this to our kids with autism having to “hold it together” in school all day long and then be judged on their inabilities to speak, or socialize, etc.

Then I do the entire exercise again, this time focusing on their strengths rather than their deficits.  I then invite them to look at others for their strengths. What they can do rather than judging them for what they cannot.  After these series of exercises, plus a sensory exercise, the typically developing teens share with me that they will never look at a child with special needs the same way again.  I truly believe that Acceptance of others begins with accepting oneself.  Our world needs all abilities.  (I share these exercises in my book, Seven Keys to Unlock Autism co-authored with Diane Isaacs.)

6) What is your child’s biggest fear or source of anxiety? What helps him cope with it?

Neal is afraid of dogs. Really it is the unpredictability of how a dog may insult Neal’s delicate sensory system that causes the anxiety. He copes with it by using sign language to communicate his fears. He wears headphones on his ears to dull out intense sounds; and he stays clear of dogs as best he can.

He is also anxious (like any young adult) about his future.  “What do adults with autism do, Mom?” he has asked me several times.

7) What is your biggest fear about your child’s future?  

This question relates to the above.  I want to help create a place where Neal can be as independent as possible and still be part of a community.  My biggest fear is how long this will take to create and where Neal will be in the meantime.  Knowing that Neal has a guiding light that protects him (we all do….:) helps curb my anxiety.  Trusting in the powers of the Universe to guide me to make the right decisions and asking for help also alleviates my fears.

What is your greatest hope about your child’s future?

That Neal finds a lovely woman to share his life with and that he is happy.  (p.s. he has a girlfriend!!)

9) What one thing can anyone do to help support people with autism and make our society a more congenial place for them?

Only one thing?  Love and accept the child for exactly who they are. See the abilities within the disability.  View ALL Behavior as Communication. And above all, Listen to the Child who Doesn’t Speak.  Or the easiest: If you hear of a family with a new diagnosis  -Reach out to them! Ask how you can help. Pick up eggs for them when you go to the grocery store.  Invite the family over for dinner.  Don’t give advice. Listen, be patient. Don’t judge. Don’t flee in fear! Let them know that you are there for them.

10) and now, in honor of National Poetry Month, one question about poetry: what is your favorite poem and/or who is your favorite poet and why?

I love Rumi; I love Sydney Edmond – a nonverbal autistic teenager who points to letters on a letter board to write. Sydney’s poetry is filled with love, beauty and hope: here is one about her mom:

You are like a cradle;

you love me

and protect me

but rock to and fro,

back and forth about being me.

Back,

like our dreams of what I might be;

Forth,

like a tall taste of reality.

You are love

You are bossy

You are black

You are white

You are my closest friend.

God keep you till the end.

And then I must add my personal favorite that is the guiding principle of my life is a Japanese Haiku (read to me in Japanese by the Assistant Secretary General of the United Nations in honor of my book, Now I See the Moon, being chosen for World Autism Awareness at the UN).  The poem was written by Mizuta Masahide, a samurai and poet in the Zeze domain of Ohmi Province in the seventeenth century:

Barn’s burnt down –now I can see the moon.

 

Here is a recent photo of Elaine’s beautiful family:

 

Dancing With the Daffodils

As part of my celebration of National Poetry Month, in honor of my favorite poet, and as a tribute to my new and blooming marriage, I share both one of Wordsworth’s most iconic poems and daffodil photos taken on Easter Sunday by my husband, a true Wordsworthian who notices and pays tribute to the beauty in small, fragile, vulnerable things . . .

 

Daffodils
by William Wordsworth

I wandered lonely as a cloud
That floats on high o’er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the Milky Way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced, but they
Out-did the sparkling leaves in glee:
A Poet could not but be gay,
In such a jocund company:
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

 

 

 

 

What Wealth!   Happy Spring Everyone!

Q &A with Todd Drezner, director of the autism documentary Loving Lampposts and father of Sam

Today I’m sharing a Q &A I recently did via email with the filmmaker and autism father Todd Drezner.

Todd Drezner is the director of the autism documentary, “Loving Lampposts: Living Autistic,” released by Cinema Libre Studio in March 2011.  “Loving Lampposts” screened at the United Nations for World Autism Awareness Day, won best documentary at the Peace On Earth Film Festival in Chicago and the social consciousness award at VisionFest in New York, and screened at other film festivals around the country.  It has been called “groundbreaking, even revolutionary” by a contributing editor at Wired Magazine and “a revealing documentary with a personal touch” by the Chicago Sun Times.  Todd also blogs regularly about autism issues for the Huffington Post.  His previous work has been seen on PBS Philadelphia and Ovation TV.

“Loving Lampposts” explores how society views autism at a time when the condition is more well known than ever before.  Following a wide variety of autistic adults, autistic children, parents, and advocates, the film examines the controversies surrounding autism and how they affect the lives of autistic people.   For more information, visit www.lovinglamppostsmovie.com.

I stumbled across Todd’s Twitter feed last May, and after reading some of his brave and searching pieces for the Huffington Post, I went to amazon and bought a copy of his film, Loving Lampposts.  I also sent him a copy of my memoir, The Anti-Romantic Child.  Todd and I soon formed a professional mutual admiration society and he asked me to give the Keynote Address at the 2011 Aspergers’ Association of New England’s Annual Conference with him.   Over the next few months, we worked on our talk and wrote it “together” via phone conversations and email but never met in person!  In fact, Todd and I met for the first time in the grand ballroom of the Best Western Royal Plaza Hotel in Marlborough MA at 8:30 am on a Saturday morning last October, as we took the stage together to deliver our talk!  In the months since, Todd and I have become not only colleagues but also good friends, and we are now giving our presentation at conferences and schools all over the country.

It was my great pleasure recently to pose some questions to Todd and to read his interesting, witty, compassionate answers.   Todd is a fount of wisdom and humor, empathy and courage, and I highly recommend that anyone interested in autism watch Loving Lampposts and follow him on Huff Post.

Tell me about your son, Sam, who will be eight in June.

Rather than attempting a description of Sam’s qualities, I thought I’d share a few details and recent stories about him that should give you a sense of his personality, interests, strengths, and challenges:

— One of Sam’s favorite activities is “thinking about books,” which simply means reciting them from memory to himself.  He currently has 24 books that he thinks about.  We are not allowed to choose any of those books to read to him at bedtime because they are reserved for thinking about.

— Sam has had a lot of anxiety about the heating/cooling unit for our apartment, which is in his room (chosen before his autism diagnosis).  He worries about not knowing exactly when the unit will make the noise that begins the heating or cooling cycle, and the noise it makes at the end of the cycle.  Sam calls the unit the air conditioner.  One thing that has recently helped him manage his anxiety is to call the unit the “air conditioning” instead of the “air conditioner.”  Sam finds this hilarious.

— We recently started swimming lessons for Sam.  When we told him he would be taking lessons on Mondays, he was very upset because this meant he wouldn’t be able to visit the bookstore on Mondays.  As it turns out, he knows and can recite what his after school activities were for each day of the week stretching back for about three to four years.

— Sam’s challenges with receptive language can lead to interesting conversations like this one:
Sam: Can we play Monopoly?
Mommy: I would love to play Monopoly.
Sam: How do you play Monopoly?
Mommy: How did you hear about Monopoly?
Sam: I don’t know.

It’s very likely that he heard about it from a friend at school, but he most likely didn’t understand everything that was said, and it’s hard for him to retrieve the details to recount later.

What is the most important advice you would give the parents of a child newly diagnosed with autism?

Find a way to connect with autistic adults, either by reading what they write or, ideally, meeting them in person.  One problem that parents of autistic children have is that it’s harder to imagine their children’s future than it is for parents of typical children.  As a result, they can be very fearful of the future and are sometimes willing to try untested treatments to “cure” autism.  It can be enormously calming to meet autistic adults and to see that they can lead meaningful and fulfilling lives both because of and in spite of their autism.

What types of therapy or therapeutic approaches have most helped your child?

Most of the therapy that we have done with Sam has focused on relationship centered approaches like Floortime and RDI.  Sam has always been interested in other people, but unsure about how to interact with them.  The relationship based approaches help him learn about how to interact in a relationship and why it’s worth the effort.  Early on, it was a matter of inserting ourselves into his rituals (to his great annoyance).  As he’s developed, he’s slowly begun to develop his own imaginative games.  These can also become ritualistic, and so the challenge is to vary the game in a way that Sam will find surprising and funny.  Making him laugh by turning a ritual on its head is one of the best ways to interact with him and to make him experience the joy of a relationship.  (For example, Sam plays school constantly and has a special “hello” song for his “music class.”  We have lately taken to singing this “hello” song in the morning to wake him up, which he found really annoying at first but now finds kind of hilarious.)

Of course, Sam also gets traditional OT and speech therapy, and these have also been enormously helpful to him as well.  And he has worked with a therapist he calls a “bravery teacher” to help with his fears.

What is the worst, most misguided, offensive, or otherwise disturbing statement you’ve ever read or heard about autism?

Probably it was Dr. Jerry Kartzinel’s statement in the introduction to Jenny McCarthy’s “Louder Than Words” that “Autism…steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.”  That statement, along with the relentlessly one-sided and negative documentary “Autism Every Day,” was part of what inspired me to make a film that took a more balanced look at autism.

If you were invited to speak to a group of typically developing children of your son’s age in order to educate them about autism, what would you want to tell them?

I will never come up with a better answer to this question than Mom-NOS, a wonderful mother to a wonderful autistic son who blogs at http://momnos.blogspot.com.  She wrote a great piece a couple of years ago about talking about autism to the typical kids in her son’s class.  You really should read the whole piece (at http://momnos.blogspot.com/2010/03/on-being-hair-dryer-kid-in-toaster.html), but briefly, she asked the kids to imagine that their brains were not made of neurons and tissue, but rather were made of metal and plastic and electrical wires.  And what if, she asked, those elements came together to become a toaster brain.  Then she suggested that her son also had a brain made up of metal, plastic, and wires, but his brain was a hair dryer.

In a world of toaster brains, Mom-NOS went on, the making of a toast would be the most important activity someone could do, and toaster brains would have no problem doing it.  By contrast, someone with a hair dryer brain would be able to make toast, but it would take a lot more effort.  On the other hand, it would be great to have that person around if you had wet hair.

The kids really got the analogy and on their own were able to come up with examples of how Mom-NOS’s son’s brain differences manifested themselves in both positive and negative ways.  I think this is brilliant and hope that this analogy spreads to as many typical kids as possible.

What is your child’s biggest fear or source of anxiety? What helps him cope with it?

The air conditioner fear is a good example of the types of anxiety Sam has–it has an element of uncertainty (not knowing when the cycle will begin) combined with a sensory challenge (the noise).  A few other fears like this are dogs, rain, wind, and the possibility that his cousin will cry.  Like many autistic people, Sam also doesn’t like change, and his other anxieties can be heightened at times of change (like moving to a new school).

Somewhat counter-intuitively, one of his coping mechanisms is to choose something more manageable to be afraid of.  So for example when he was apprehensive about starting kindergarten, he decided he was afraid of the 3 train. At least the 3 train, unlike many of his other anxieties, runs on a predictable track on a somewhat predictable schedule, and it has a big label on it so you know it’s coming.

We have helped him with many other coping methods such as the CBT “bravery teacher” mentioned above, games in which Sam’s toys are afraid of things, and photo books that we make for Sam about his fears (“Sam’s Book About Change and Worry”  “Sam’s Book About Noises”).  We try within reason to expose him to his fears and to help him understand that he can control them.

What is your biggest fear about your child’s future?

A lot of parents answer this question by saying that they worry about whether their child will be able to live independently and who will take care of him if not.  Of course I also have this worry, but my first worry is about whether Sam will be able to be a good self advocate.  Will he be able to express his needs or wants to caregivers or friends or family, even if it’s not in a traditional way, and will they respect those needs?  If so, I think he has a lot better chance of having a good life, whether or not he’s living independently.

What is your greatest hope about your child’s future?

I hope that Sam will continue to develop in ways I can’t imagine or predict so that any specific wish I might have about his future is less amazing than what actually happens to him.

What one thing can anyone do to help support people with autism and make our society a more congenial place for them?

I was actually just part of a great group of autistic self advocates and allies who offered some terrific suggestions at Steve Silberman’s blog Neurotribes.  The post is long but well worth reading: (http://blogs.plos.org/neurotribes/2012/04/02/autism-awareness-is-not-enough-heres-how-to-change-the-world/#more-3989).

But in general, I would say that society should focus less on “solving the problem of autism” and more on helping autistic people navigate a world that can be challenging for them.

In honor of National Poetry Month, I also asked Todd a few questions about poetry.   His wife, Erika, is an English teacher and I knew that both Todd and Sam were poetic souls.

What is your favorite poem?

I don’t know if I can come up with one favorite poem, but I can tell you that the poet I always read if he shows up in The New Yorker is C.K. Williams.  I think this is partly because I’m more a reader of narrative than of poetry, and Williams’ poems often feel like narrative.  It’s probably partially a result of those overlong lines that leave him plenty of time to advance a story.  At the same time, his imagery is beautiful and poetic and sticks in the mind well after you read a particular poem.  And then finally, I got to hear him read at Carleton.

Does Sam like poetry and if so, what is his favorite poem and why?

Yes, he likes poetry, although he may not understand the term.  But anyone who loves Dr. Seuss as much as he does is definitely a poetry fan.  His favorites are “The Cat In the Hat,” “The Cat In the Hat Comes Back,” and “Green Eggs and Ham.”  (Erika adds:  Sam really likes “Us Two” by A. A. Milne.  He likes the story about being together, he likes the musicality of the meter and rhyme, and he likes the idea of “not being afraid.”  I speak this one to him as a story and he loves it.

 

“Look Very Carefully”: The First Day of National Poetry Month and Autism Awareness Month

 

On this first day of April, the first day of both National Poetry Month and National Autism Awareness Month, I share this image of quiet, stillness, beauty, peace, and promise.   The photo was taken by Benj’s great-uncle Pete and sent to Benj in a special 13th birthday email a few weeks ago.  As Uncle Pete wrote to Benj, “if you look very carefully—[you can see] small pink buds emerging on the tree branch.”

Thinking tonight about the value and preciousness of poetry, and of the value and preciousness of my autistic son, I look at this photo and remember Wordsworth’s famous lines:

“All good poetry is the spontaneous overflow of powerful feelings: it takes its origin from emotion recollected in tranquility.”

and Whitman’s assertion:

“If [the poet] breathes into any thing that was before thought small it dilates with the grandeur and life of the universe.”

To me, this photo epitomizes emotion recollected in tranquility, brims with and breathes a poetic spirit, and dilates with the grandeur and life of the universe.  It also symbolizes the fragility, the vulnerability, and the beauty of every human life.

Uncle Pete’s admonition to “look very carefully” also reminds me of one of my favorite poems, by the Wordsworthian Mary Oliver:

 

Praying

 

It doesn’t have to be

the blue iris, it could be

weeds in a vacant lot, or a few

small stones; just

pay attention, then patch

 

a few words together and don’t try

to make them elaborate, this isn’t

a contest but the doorway

 

into thanks, and a silence in which

another voice may speak.

 

A Doorway Into Thanks Indeed . . .

Benjamin’s Poem, “Snow Bird”

 

Today I want to share a poem that Benj apparently wrote in school last year and that I just found while packing up his room in preparation for our impending move.  I’d never read it before, and was quite astonished by it.   “A poem begins as a lump in the throat,” Robert Frost once wrote, and Benj’s poem has created a very large lump in mine:

 

 SNOW BIRD

The bird I imagine is totally white.
You couldn’t see him with snow all around.
But if you were out on a clear starry night,
His bright in the deep of the dark would astound.

Bird or snow, it’s hard to tell
Which is which, or which one fell
Down from the frosty, starry sky,
And which flew up to call “Bye-bye!”

The dark is deep, you can’t see it.
His cry comes out, a loud “Whoo-hoo!”
It’s almost as if a lantern’s lit
Up the way from him to you.

Bird or snow, it’s hard to tell
Which is which, or which one fell
Down from the frosty, starry sky,
And which flew up to call “Bye-Bye!”

You might reach your hand to feel warm in
the cold.
There’s no fire, no light, no heat you can see.
But something is there that makes you bold;
No snow, no chill, only the dream in the tree.

Bird or snow, it’s hard to tell
Which is which, or which one fell
Down from the frosty, starry sky,
And which flew up to call “Bye-bye!”

Benjamin, Winter 2011-2012, Age 11

 

I have always had a special fondness for winter poems and bird poems, and now I have a new one to admire and cherish.  As a graduate student at Yale, a poem about a bird in winter, Robert Frost’s “Looking for a Sunset Bird in Winter,” was the subject of the very first class I ever taught.  In The Anti-Romantic Child, I write about how I shared Frost with little Benj and then in the wake of the discovery that he had hyperlexia, worried that his dramatic and seemingly impassioned readings and recitations of poignant lines from Frost’s poetry were mere symptoms of his disorder, not the result of any real attachment, understanding, or appreciation.  I feared that Benj, who at three years old had severe fine and gross motor delays, virtually no original language, and a zealous resistance to pretending, would never be able to express himself in the first person, construct a meaningful and coherent thing (be it a sentence or a tower of blocks let alone a poem), imagine, reside in uncertainty (“hard to tell”), convey his fears, dreams, observations, and ideas to listeners, readers, loved ones.   How wrong I was.  “The bird I imagine,” Benj’s poem begins, and that phrase alone encapsulates his growth, his flourishing, his flight.  Thank you Benj, my snow bird, for making me bold.  Your brightness astounds me . . .

“Courage and Stamina and Love”: Celebrating My Cousin Rachel

February 4th is the birthday of two of the most important and influential women in my life, my maternal grandmother, Priscilla Swan Nesbit, who was known in our family as Grammy Peg, and my Mother’s first cousin, Rachel Oatman Johansen.  Grammy Peg died in the fall of 2005, four months after her husband of 68 years died just shy of his 101st birthday, and Rachel this past October after an eight month battle with cancer.  I’ve written of the inimitable Grammy Peg in THE ANTI-ROMANTIC CHILD, so tonight I want to celebrate Rachel.

Here is the gorgeous obituary for her that ran in the Santa Barbara newspaper:


Rachel Oatman Johansen

 

Rachel Oatman Johansen: 1931-2011

Teacher at Starr King Parent-Child Workshop

By Nick Welsh

Tuesday, January 10, 2012

One of my big regrets is that I didn’t have Rachel Johansen to open the doors of education for me. My first classroom experience involved well-meaning nuns who put me on notice there was but one path and that those who strayed wound up in Hell. Thankfully for my own children, Rachel — for 31 years one of the pillars of the Starr King Parent-Child Workshop — was all about giving young minds and souls the freedom to wander, choose, to experiment, and to stumble. In Rachel’s world, failure was not failure if you managed to learn something from it, and experience was always the best teacher.

It was Rachel’s mission to create a safe place — for the thousands of kids going through Starr-King during her tenure — to have as many of those experiences as possible. Sometimes that involved protecting the children from their parents’ best intentions.

Then as now, Starr-King requires active parental participation. Parents show up for mandatory Monday night meetings; they also show up to volunteer for playground or inside duty. This involvement is one of the reasons Starr-King has remained so ridiculously affordable. It’s also how parents are supposed to learn. It took me a while to get the picture. I figured parental involvement meant that when my son was painting in the art area, I could join in and paint too. I can’t remember exactly what Rachel said. She could not have been more gentle about it, but she let me know in no uncertain terms that I was intruding not just on my son’s experience, but on the other kids’ as well. Message delivered, with no hard feelings . . .

To a blabbermouth like me, Rachel could be unsettling. She didn’t talk a lot. But very often, there was a hint of a smile tugging at her mouth, looking to get born. On the job, Rachel managed to exude a remarkable combination of stillness and warmth. To an uncommon degree, she was who she was and where she was meant to be. I never heard Rachel raise her voice, scold, or seem the least bit frazzled. It was unreal. Except in her case, it wasn’t. Rachel was clearly in charge, and everyone knew it.

As a teacher, Rachel was a shower, not a teller, and her passion was always nature. She was a pioneer in what would later come to be called environmental education, though I’m not so sure she’d approve of the term. Every day she brought a collection of seed pods, grasses, leaves, and wildflowers to class for the kids to do with as they saw fit. She always knew what plants were in bloom and where. Rachel was equally famous for the volume of found objects she brought in, ranging from candy wrappers to dryer lint. Eventually, all these landfill refugees would find their way into some art project.

Part of Rachel’s genius was to tune out the ambient din and simply pay attention to what was in front of her. “Most of us spend so much time distracted,” said Gonzalez. “But Rachel would look at things. I mean really look.” After retiring from Starr King in 1996, Rachel volunteered as a docent at the Natural History Museum. She was quick to get down into Mission Creek and muck about, sharing her enthusiasm for nature — and her extensive knowledge of Chumash paleobiology — with school kids from all over Santa Barbara. Watching Rachel put a plant into the ground was “like going to church,” said her husband, Tony Johansen. Except she was too in love with nature to be pious or preachy about it. Instead, said Kathy Harbaugh, who worked with her at the museum, “With the kids, she was ‘Wow! Isn’t this cool!’”

It was at Starr King that many young souls got their first taste of life outside their family cocoon. Inevitably, heads butted. As referee, Rachel ruled by example, treating everyone with the same respect, regardless of age or emotional maturity. David Alonzo-Maizlish — now 37 years out of Starr King — wrote, “Rachel helped me learn how to listen to others. This simple, profound skill comes to mind when I think of her; how she would listen to me no matter if I was angry, scared, or simply prattling on like any other toddler. Her example has stayed deeply with me since then.”

Born Rachel Oatman in Marshfield, Wisconsin, in February 1931, she grew up in Geneva, Illinois, where her father started a business with a process he devised for extracting moisture from cheese whey so it could be used as animal feed stock. On Rachel’s mother’s side there were newspaper people. Rachel studied political science at Stanford University. It was there that she met Jim Schermerhorn, with whom she moved to Santa Barbara in 1955 and whom she eventually married. Rachel and Schermerhorn, a Santa Barbara News-Press reporter with the gift of gab, had two children together but divorced after seven years.

Rachel started at Starr King as a parent, then in 1965 accepted a job as assistant to director Sarah Foote. When Foote retired, she was replaced by Hanne Sonquist. For 23 years, Rachel and Hanne enjoyed an exceptional run together. Rachel married Tony Johansen, having met him when he was a Starr King dad and divorced father of three, in 1973. The clan moved into digs on Glendessary Lane, and they opened their home to Wednesday-evening jam sessions — now officially known as the Glendessary Jam — for banjo, guitar, and fiddle players of the old-timey persuasion. Though Rachel did not join in the jam, she was an avid singer with the Unitarian choir and the Santa Barbara Choral Society.

Rachel died at home October 26 after a eight-month battle with cancer. “Rachel is fine,” she told her husband of 39 years. “But my body has issues.” Before she died, Rachel was surrounded by her family, serenading her with old favorites such as “Amazing Grace,” “Swing Low,” and “Will the Circle Be Unbroken.” Since her death, Tony Johansen said people have sought to console him, saying “Rachel is in a better place.” His response? “When she was here, you felt she was already in a better place, and anyone who came in contact with her was in that better place also.”

 

Reading this obituary, I realized just how deeply Rachel had influenced me, with her gloriously down-to-earth but wonderfully romantic sensibility, her happy and inspired second marriage (I think of this especially on the eve of mine), her passions for nature and music and devotion to the well-being of children, her commitment to “giving young minds and souls the freedom to wander, choose, to experiment, and to stumble.”  I remember how *game* she always was, how up for an adventure, exploration, or spirited conversation.  I remember her cutting out paper dolls with me and my sister, cooking for us, hugging us with gusto.

Once I was in college, Rachel and I didn’t see each other much as we lived on opposite coasts, but we wrote to each other often, and whenever I received her letters or emails, I was instantly transported to “a better place” by her words and the love that shone through them.  Here is an email Rachel sent me a few months before she died.  I will cherish it always as both one of the most gratifying responses to my book imaginable and one of the purest expressions of love I have ever received:

Oh my dear Priscilla, I had no idea you were such a powerful writer.  I have been completely blown away by your story and feel that every parent should read it.   There is so much to learn.   It’s been quite a journey for you, hasn’t it?  And of course it’s no where near over.  Such courage and stamina and love I have seldom seen in one person.  You are a hero, no doubt about it.
We love you a lot and hope we will see you when you come out to the West Coast for your book engagements.
I’m doing great, by the way, beyond the doctors’ wildest expectations, so let’s hope it stays that way.
Love and hugs to you and the boys,
Rachel

 

Sadly, I never got to see Rachel again.  “Such courage and stamina and love, I have seldom seen in one person” indeed.  Rachel was a hero to me and many, many others.

A few days after Rachel died, her son, my cousin Matthew, posted this on Facebook.  He had found it taped to the mirror in Rachel’s bedroom.

Being Awake adapted from Circles of Stones
– from mom’s mirror

I am finding that it takes a lot of time to be a person. To have a
feeling of space and breath, a chance to sink into myself…as long as
I take time every morning to awaken to my life, it remains my life.
But if I hurry to the day’s activities without that small moment of
quiet, then I’ve already lost my self and the day.

The task, for me, is to care, daily for my self and my life, to love
and nurture, within myself, moment by moment, the quality of quiet
Presence, Quietly being present to my life, which sanctifies it – to
live as if I am awakened.

Rachel, you awakened countless young children and their families with your generosity of spirit, wisdom, and kindness.  Thank you for loving and nurturing me, and for sanctifying my life with your goodness and strength.  Thank you for teaching all of us how to be present to our lives.

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