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.
like our dreams of what I might be;
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: