“Friends and Feelings”: The Fred Rogers Company’s new DVD to Help Children With Autism

As both a huge Mr Rogers fan and the mother of a child on the autism spectrum, I was thrilled to learn that The Fred Rogers Company had put together a new DVD called Friends and Feelings: Helping Children with Autism in Social and Emotional Learning. The DVD features four classic episodes of the show plus helpful introductions for parents and professionals. The episodes, “It’s Very Hard to Wait,” “Ups and Downs of Friendship,” “Learning About Sharing,” and “Learning Self-Control,” are each gems, and the DVD as a whole is both practically helpful and emotionally moving, a veritable treasure-house of tips and inspiration for children with autism and their families, teachers, and therapists. I was honored when Alan Friedman of the Fred Rogers Company agreed to answer my questions about the DVD and offer further encouragement and hope for autistic children and those who love and work with them.

1) How did the idea to do a Mister Rogers DVD focused on autism come about?

The Fred Rogers Company has long heard from parents and teachers of children with autism about the benefits of watching Mister Rogers’ Neighborhood. Then, friends of the company who work with children with autism began urging us to make the program available directly to children with autism and other special needs. We also were motivated by the growing body of research on the effectiveness of video modeling (i.e., observing appropriate behaviors and then practicing them in real-life situations) as a tool for helping children with autism learn social skills.

2) What challenges were involved in putting it together?

We wondered if we would find that young viewers who are new to the program today, whether or not they have autism, would find it too slow, too calm, or too otherwise old-fashioned to be interesting. But the project is confirming that children, particularly children with autism, continue connecting with it in powerful ways.

3) How did you select the episodes to include and the themes or topics to focus on?

We gathered input from numerous professionals and parents to determine where there is the greatest overlap between important but challenging skills for children with autism and themes that are central to Mister Rogers Neighborhood. Then, we developed a list of episodes in which Fred and his friends and puppets talk, sing, and play games about these skills in engaging and memorable ways. We chose a final four episodes that are longstanding favorites among all children: “It’s Very Hard to Wait,” “Ups and Downs of Friendship,” “Learning About Sharing,” and “Learning Self-Control.”

4) Tell us a little about the experts interviewed on the DVD and how they came to the project.

Pittsburgh is home to a wealth of eminent professionals dedicated to children with autism. Pittsburgh is also something of a small world. Mark Strauss, a developmental psychologist, is a friend of a few staff members at The Fred Rogers Company. With Martin Lubetsky, I recently served on a local disability services task-force. Through Martin, I met his wife, Michelle Lubetsky, a behavioral analyst and special education consultant. And I learned about the work of Stacy Porter Smith, a social skills therapist, and Terry Sheffey, a community outreach coordinator, at an autism conference at Slippery Rock University. I want to thank these commentators and the many other contributors to the project.

5) What has the reaction to the DVD been like?

Support from local foundations was intended to fund the distribution of 5,000 copies throughout Southwestern Pennsylvania. We wound up distributing 12,300 copies through 20 very motivated partners, autism service organizations that are using and distributing the DVDs in their home visits, classrooms, social skills camps, and other programs. We haven’t yet collected a lot of feedback, but viewers seem to be responding very positively.

6) Did Mister Rogers ever speak or write about autism to your knowledge? Did he ever correspond or work with famed autism expert Stanley Greenspan?

Fred did not speak or write about autism. But he spent time with a great many children with autism who came to meet him and visit the TV studio. There is a wonderful article that first appeared in Esquire, in which Tom Junod writes about Fred visiting for 20 minutes with an autistic boy who had come, with his father, all the way to Pittsburgh from Boise, Idaho. The boy had never spoken, until one day he said, “X the Owl.” He had never looked his father in the eye until one day his father had said, “Let’s go to the Neighborhood of Make-Believe.” By the time he met Fred, the boy was speaking and reading.

7) Why are Mister Rogers’ approach and sensibility so valuable and helpful for children with autism and those who care for or teach them?

The program is valuable and helpful by virtue of what Fred has to say and how he says it, both of which correspond to the learning needs and styles of children with autism. Fred and his neighbors talk and sing all day every day about feelings, appropriate social behaviors, and thinking about others. They live in a world defined by very comforting routines. And unlike so many other producers of children’s media, Fred kept the pacing calm and the special effects to a minimum. He always made eye contact. He and his interactions with children are wonderful models for adults.

8) Are there plans to release more episodes presented and introduced in this way, on autism or other subjects?

We hope to continue re-purposing the Neighborhood in this way and learning from viewers about how to make the collection as useful as possible.

9) Can you think of a quotation from Mister Rogers that you think would especially help a child with autism? His or her parents? His or her peers in learning to accept their autistic classmate?

These words from Fred may be meaningful to a child with autism:

“You are a very special person. There is only one like you in the whole world. There’s never been anyone exactly like you before, and there never will be again. And people can like you exactly as you are.”

These words may be helpful to his or her parents:

“What’s been important in my understanding of myself and others is the fact that each one of us is so much more than any one thing. A sick child is much more than his or her sickness. A person with a disability is much, much more than a handicap. A pediatrician is more than a medical doctor. You’re much more than your job description or your age or your income or your output.

“If the day ever came when we were able to accept ourselves and our children exactly as we and they are, then, I believe, we would have come very close to an ultimate understanding of what ‘good’ parenting means. It’s part of being human to fall short of that total acceptance—and often far short. But one of the most important gifts a parent can give a child is the gift of accepting that child’s uniqueness.”

And these thoughts may be helpful to his or her peers in learning to accept their autistic classmate:

“What is essential is invisible to the eye. When we see someone who looks or behaves differently from what’s familiar to us, it’s possible to feel a little shy, scared, curious, or awkward. I know how much I’ve struggled to look with my heart and not with just my eyes. One of life’s joys is discovering that we can be open to new experiences that at first seem strange or even scary. It’s exhilarating to find that the barriers that seem to separate us from other people begin to vanish when we take the time to get to know those people. That’s the way it is with real friends.”

If you are interested in “Friends and Feelings,” you can order a copy directly from the nonprofit Fred Rogers Company. All proceeds support work that advances and extends Fred Rogers’ philosophy and values.

www.fredrogers.org/autism

“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:

 

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.

 

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