This is a guest post by Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University.
Thanks for tuning in to the latest episode of Autism Talk in which we interview Elaine Hall, the founder of The Miracle Project in Los Angeles. Elaine worked in the film industry until she adopted an autistic son and decided to start the Miracle Project, a successful program in which autistic children sing and act and dance in order to promote learning and social interaction.
Elaine and The Miracle Project were featured in the HBO documentary “Autism The Musical” and wrote a book about raising her autistic son entitled “now i see the moon.” Elaine generously granted us an interview in which she talks about her experience raising her deeply autistic son. In addition, Elaine explains The Miracle Project and her views about working with autistic children.
This “In Their Own Words” is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.
How do you know if you are doing the right therapy for your child? With so many “remedies,” “cures,” and paths to take, how do you know if you are on the “right” one? How do we know if it’s “working”?
Like most things in my life, my answers didn’t evolve gradually; they hit me over the head. There’s a story about a man so eager to “help” a butterfly into the world that he opens its chrysalis too soon. The result is tragic: the wings never develop properly, the butterfly cannot fly, and it dies. I tell this story to parents and educators who seek to force kids with autism to be something they are not, who pressure them into compliance or try to coerce them to be part of this world before they are ready. My experience with my son Neal – who I adopted from a Russian orphanage at age two and who was diagnosed with autism a year later – has taught me that we must yield to slow yet natural progress: caterpillar to chrysalis to beautiful creatures that can soar on their own. But it took me a while to learn this for myself.
I had a significant “a-ha!” moment when Neal was seven years old. I had been taking Neal out into the community quite a bit, trying desperately hard to have a normal life and fit in. Anything that Neal was interested in, I pursued. Because Neal loved butterflies, I was overjoyed to hear about a butterfly exhibit that was coming to the Los Angeles Natural History Museum. It sounded extraordinary, a “Pavilion of Wings.” The brochure read, “Stroll through a beautifully landscaped exhibit, see Monarch butterflies, giant swallow tail butterflies, and more.” I couldn’t wait.
I prepared Neal with butterfly books and manuals. We acted out the life-cycle of a butterfly. We crawled like caterpillars, munched on leaves, and rolled ourselves into a cocoon and wait, wait, waited, until we developed wings. Then we flew around our house in a rainbow of laughter. I had often used this kind of creative play in my career as an acting coach for children. Being able to use these techniques with my own boy was even more rewarding. We had so much fun together.
Finally, the exhibit opens, and on that day I get Neal into the car effortlessly and we head downtown to the museum. Neal is a little reluctant to walk across the large parking lot, but once he nears the exhibit, his eyes widen with excitement.
We enter the Pavilion. Neal is in awe: hundreds of butterflies in all shapes and colors flick and flutter around us. Neal loves the butterflies. He loves them too much. When he sees these familiar, angel-like creatures, he wants to get close to them, to smell them, to touch them. He starts reaching out ecstatically to touch each butterfly. Like King Kong snatching airplanes from atop the Empire State Building, Neal grabs for butterflies.
“He’s killing the butterflies!” shouts a little boy.
“Butterfly killer,” screams a tiny girl.
Now all the kids and adults are yelling, “Stop him! Get him! He’s killing the butterflies!!!
This terrifies Neal. He grabs a plant and pulls it out of its pot. He knocks over other pots. The butterflies are flapping wildly. A security guard swoops in.
“I am so sorry,” I keep saying. “I am so sorry. He has autism. He loves butterflies. He didn’t mean to harm them.”
“Get that kid out of here!” someone shouts, loudly enough to be heard over the others who are still screaming at Neal.
But Neal doesn’t want to leave. He is actually quite amused by the commotion he’s causing, and I can’t get him out of the exhibit. Finally, I see some plastic, made-to-look-real butterflies on the gift shop counter. I rush to the front of the line. People glare at me for cutting in. I beg to buy one of the pretend Monarchs. I can’t wait for change, so I place a $10.00 bill on the counter, grab a fake butterfly, and race back to Neal. I use this insect amulet to coax Neal out of the Pavilion, through the long parking lot, and back to the car.
Sitting in the car, Neal and I stare blankly out the front window. I look at Neal. I see the puzzled look in his eyes give way to sadness. I start to cry. Neal stares back at me. He gets teary-eyed. He’s ashamed of what happened. We look long at each other. The tears give way to smiles. The smiles become laughter. It’s one of those situations in which everything is so terrible, that it’s ultimately absurd.
But that night I pray. “Dear God, I need help. We need help. It’s just not working.”
I fell apart that day. I surrendered to the fact that our lives are just going to be a bit different from the norm. “Abbynormal,” I like to say. From that day on I became 100% committed to keeping Neal at home and bringing in creative folks – actors, musicians, writers – to join his world, until he was ready to be in ours. Gradually, inch by inch, Neal did, indeed, emerge from his cocoon as a glorious butterfly – but on his own schedule, not mine. Among many other things, now Neal can sit patiently and watch a butterfly float by without any need to “possess it.”
Through writing my memoir, Now I See the Moon, I was able realize that some things in life, as in nature, cannot be rushed. Luckily, the right teachers, the right programs, the right books, and the right methodologies always appeared just when I needed them most. Neal will always be my guide as to what he is ready for and when he’s ready for it. A caterpillar knows best when he is ready to break out of the cocoon and emerge as the graceful butterfly he was always capable of becoming.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.