Monday, July 8, 2013
v o i c e c o l o r s
Tuesday, January 10, 2012
Ebbs and Flows
Over the last four years, Billy has grappled physically and spiritually with complex medical issues. From the sideline, Billy’s story seems like a sad turn of events. But Billy and I don’t agree.
It is also a very good story and this is why. A rubber spatula, an XO Easy Grip turkey baster and a dish rag – all ordinary kitchen tools, but in Billy’s hands they are his ply and trade as he creates a lively palette of colors and networks of intricate textures. Passionate and with laser focus, Billy turns the ordinary into the extraordinary with an arsenal of tools ranging from artists brushes, ball tip whisks, paint rollers, rubber colanders , bamboo salad utensils and bubble wrap. Whether it’s Seal’s “Amazing”, Madonna’s “Vogue” or Vivaldi’s “Four seasons,” music is a constant and revered companion. Music sets the tone and tempo and painting is Billy’s expressive voice. When one walks into the garage studio, pulsations and beats reverberate as Billy throws, swirls, and presses the paint into an equally pulsating symphony.
The physical and emotional power of his painting is undeniably Billy’s signature trademark.
His personal story however, reveals why he is so committed to his life as an artist. Every day for the past four years, Billy has endured acute episodic pain. His medical realities coincide with his diagnosis of Autism. For some individuals on the autism spectrum the social world is complex as well as physically grueling. Suffering is a part of Billy’s life. But Billy does not see his pain as defining who he is or will become. Though his physical health is precarious and sometimes fragile, Billy desires to paint. As a 22 year old young man, Billy loves life and embraces it with bravado. Anyone who knows Billy and witnesses his passion for colors and his delight in music are moved by his choice to create beauty in the midst of intractable obstacles.
Billy relishes all of life’s sensations. It is his gift to humanity.
Friday, September 30, 2011
WHO ARE YOU?
Billy is at an art studio where he paints most Mondays. It is a spacious, cluttered warehouse filled with visual creations and accompanied by sonorous and dissonant sounds. It is Beatnik and 2011 wrapped up in one. A current time warp.
This Monday Billy arrives and starts to prep for his studio art session. He places his communication device and his art schedule book on the 1960’s fashionable scratchy metal secretary desk. Rummaging through the plastic milk carton, he finds the radio and places it in an exact spot on the desktop. He lifts the hefty CD player (500 CD’s later-a lifetime collection from a now almost defunct Borders) out of a lime green case and sets it neatly by the soon to be obsolete Sony player. Billy is always precise. His painter apron accented by vibrant smears of paint hangs on a hook in an adjacent interior closet-room. Without a cue, Billy puts the ankle length blue denim apron on, wraps the belt around his waist, ties a bow and then double knots it until there is no remaining string to use.
And then Billy picks up his communication device and navigates to the Dictionary, selects the category “people” and then presses the “friends” subcategory. Immediately, he presses “more friends” which reveals a page with many empty cells. I watched with keen interest but frankly I had no idea what he was about to do. Billy walks up to each person who happened to be sharing the space with him that day and pointed to the empty cell on his friends page.
Standing, he bent slightly over so that each person could view what he pointed to. Focused, direct, and earnest, Billy acknowledged everyone in the room. I gasped as I realized what was amiss. I knew what Billy wanted to say.
But, the pivotal question “Who are you?” was not on his device. Billy, however, was not deterred. Each individual he approached, he pointed to the empty cell as if to say your name belongs and put his hand out for a handshake which was returned in kind. Billy’s simple gesture of recognizing others tied them together in this painter’s niche. Despite the fact that his language system was compromised, Billy took the time and effort to affirm each person’s presence in his life at that moment. I felt humbled by his act of kindness.
I went home that day and made sure that Billy would always have the ability to ask ‘WHO ARE YOU?” The question is programmed in multiple places on his communication device. Billy already knew that the question was urgent and applied it in his life. What I learned that day was that I too needed to ask this question. Like Billy, I too yearn to be in the reception line with others.
Monday, April 11, 2011
Autism Awareness Month 2011
Sunday, February 13, 2011
Happy Valentine's Day
Happy Valentine's Day!
I arrived to meet Billy’s mother Eve with a mixture of excitement and reservation. Playing over and over in my mind were the words “severe autism” and “non-verbal” and a host of preconceptions associated with those labels. As a trained special education teacher I have enjoyed working with children on the autism spectrum. But they could all speak and Billy could not.
Many individuals with Autism Spectrum Disorders (ASD) have significant challenges with motor planning and body awareness. Would someone as severely autistic as Billy even be able to do Yoga poses? Those with ASD are often also resistant to touch. If Billy didn’t understand my words and I couldn’t guide him into poses with touch, how would Billy learn to do Yoga?
Billy’s mother led me out to the barn behind the house where we would practice. At first I observed Billy running though a familiar routine of stretches and exercises on a fitness ball with his teacher. I was immediately struck by Billy’s big energy and personality - his smile absolutely lit up the room. Billy was seventeen at the time; a handsome teenager with a muscular build, shaggy blond hair and inquisitive blue eyes. The barn space had been set up to nurture Billy’s physical skills and provide an outlet for his high activity level. A full-sized trampoline in the middle of the barn was surrounded by free weights, exercise machines, and a swing.
Watching Billy in action I realized that he is a natural athlete and he loves to move. Billy’s stretching routine already included a few Yoga poses, and I found out he was an accomplished gymnast. Billy ended his routine with a few minutes of joyful jumping on the trampoline and soaring almost to the rafters. He could confidently maneuver his body through space and nail his landing every time. Yoga was beginning to seem like much less of a stretch.
While Billy does not speak, he does have a language system thanks to the creativity and perseverance of his parents and teachers. He uses a voice-output computer device. Billy was patient with me as I learned to communicate with him. He quickly alleviated any reservations that arose during our early sessions with his irresistible laugh.
Billy uses picture-based schedules to guide him through his daily activities. Following this format, I began creating schedules for our sessions that consisted of pictures of Yoga poses in a sequence.
We began working together several times a week and soon settled into a routine. Some poses were undoubtedly uncomfortable at first but Billy always persevered. My initial concerns about Billy’s ability to do Yoga poses faded as I realized he was often able to master poses more quickly than my “typical” students. My worries about being hands-on also fell away as Billy consistently responded well to physical assists. Billy seeks and takes comfort in touch for social connection and positive feedback, and our sessions came to include lots of high fives and pats on the back.
At the start of our sessions Billy carefully studies the schedule then purposefully steps onto the mat to communicate his readiness to participate. When Billy is on the mat, he is deeply focused. Billy notices everything. I introduced Billy to a pose called balancing mountain: balanced on the toes, the arms reach high, and the body stretches long and lean. Billy immediately imitated the reach of my arms, but his feet were still flat on the floor. In order to draw Billy’s attention to my feet, I reached down and pulled up the legs of my pants, which Billy also imitated. He now practices a beautiful balancing mountain pose that is always preceded by deliberately reaching down to pull up his pant legs -even if he is wearing shorts.
I continued to refine my process of communicating with Billy and creating visual schedules. Billy’s practice progressed quickly and it seemed that Yoga was helping him to feel calmer and more comfortable in his body. Before too long, Billy was flowing through beautiful sun salutations, balancing for long holds in tree pose, and allowing me to assist him into deep twists and hip openers. More importantly, Billy and I were building a trusting relationship. Billy’s initial resistance to trying new poses softened and he began to let go of long held tension during the periods of relaxation at the end of our sessions.
In an early conversation with Billy’s mother I asked what she envisioned for Billy’s future. She conveyed her strong belief that Billy is a life-long learner. She does not place limitations on Billy by imagining what he will or won’t be capable of. The sincerity and wisdom behind this philosophy resonated with me. Gradually, I reinterpreted much of what I thought I knew about autism and I opened up to the uncertainty of where this journey with Billy would take me.
I relaxed my tendency to plan each session as I realized that my plans were often out of sync with what Billy needed or could tolerate at any given time. Through careful observation of his body and breath I learned whether to sustain or release poses. It became clear that the less I talked during our sessions, the better Billy was able to focus. I deepened my breath, and I was amazed to observe that Billy followed by deepening his own breath. Our sessions became quiet and intimate with only the sounds of breathing and soft music selected by Billy filling the room.
Things were about to change dramatically for Billy. We didn’t know it at the time, but our sessions had been laying the foundation that would carry us through difficult territory. Billy was teaching me the flexibility, patience, and presence of mind that he would soon need from me more than ever. I was teaching Billy a healing modality that would be crucial to maintaining his physical and mental wellness in the challenging months to come.
After a year of working together, Billy began to exhibit signs that he was not okay. His typically cheerful demeanor changed to screams, cries, and self-injurious behavior. Billy began to hit himself in the face, hard and often. Gradually Billy lost the ability to tolerate the demands of most of his favorite activities. He stopped going to gymnastics lessons and working with his art therapist. His family stopped spending weekends on Cape Cod. Weekend outings with his Dad to stores and restaurants were no longer manageable. Billy’s world had been designed to nurture his many strengths and to challenge his autistic tendency to withdraw. Structure and routine were the anchors that kept Billy engaged and connected. Now Billy’s world was collapsing in on him. Billy was sick.
The following two years were a terrifying journey into a landscape of hospital visits, endless tests, surgery, and trial and error with a variety of medications. Billy had always been a robustly healthy kid, but now he was in a state of medical crisis. Billy suffered from a host of gastrointestinal issues, an inflamed appendix, and a newly developing seizure disorder. Billy participated as gracefully as he could in increasingly unpleasant and invasive procedures. He continued to use his communication device to understand the ordeal and express his needs. He trusted his parents to have his best interests in mind. Billy surrendered.
Throughout it all Billy and I continued to do our Yoga. I adapted my sessions with Billy to accommodate his constantly fluctuating needs. When the transition outside to the barn became too difficult, we moved our mats into the house. When Billy was too sick for vigorous practice, we did restorative poses with lots of props and long periods of relaxation. When a terrible reaction to an anti-seizure medication caused Billy to completely shut down there was a period of a few weeks when just standing up would throw Billy into an onslaught of self-injurious behavior.
During this period my sessions with Billy consisted of brief visits to his darkened bedroom. I wanted Billy to know I was there for him and Yoga was still a part of his life. I quietly told Billy I was sorry he was sick and I wanted him to feel better and get back to doing Yoga soon. I’m not sure how many of those words Billy understood, but we made eye contact and Billy held my hand.
Weeks of illness turned into months, and the effect on all of Billy’s caretakers was undeniable. The excitement I previously felt about our sessions was fading and often I was just hoping to make it through. Like many individuals with ASD, Billy engages in ritualistic behaviors - repetitive routines that help him cope with the demands of his day. As his pain persisted, Billy’s rituals became aggressive and increasingly intense. His rituals with me included pinching, hitting, and occasionally grabbing at my eyes or mouth. I realized that I had begun to physically distance myself from Billy to minimize these assaults. This saddened me. I knew in my heart that Billy needed me to stay connected now more than ever. Billy was lashing out because he was scared and lost in all this chaos. I sorely missed the joyful and affectionate Billy I had come to know. Billy and I were both experiencing loss, and we were both doing the best we could.
When the ritualistic outbursts passed, Billy always expressed remorse and a desire to affirm that everything was okay. He would place his finger by my mouth in a gesture to ask me to smile. These moments of resolution were important to Billy - he wouldn’t move on until I moved on. Our relationship was ultimately strengthened by my willingness to forgive Billy again and again, and Billy’s ability to continue to trust and engage with me.
Yoga was an outlet for Billy to process and heal his pain. While Billy’s parents continued to provide him with love, patience, and the best the medical system had to offer, Yoga was one thing Billy could do for himself. Despite the discomfort he must have been experiencing, Billy continued to actively participate in our sessions - something he was no longer doing in most other areas of his life.
Time and the right mix of medications eventually worked their magic. Billy’s smile made more frequent appearances and his aggressive rituals faded away. Our sessions became more vigorous as Billy regained his strength and flexibility. Transitions are hard for Billy, and the transition back to wellness after almost three years of being acutely ill was a big one. Billy’s routines and sense of self had all come to revolve around being sick and in pain. New language was added to his communication device to convey “Billy is healthy! Billy is strong! You can do it, Billy!” and gradually Billy accepted these messages to express his new reality.
Billy is twenty years old now. He is a young man now with a transformational ordeal behind him. Billy is mostly back to his old self but with a new maturity and strength about him. His emotional resilience and endless trust are inspiring. Billy is enjoying many of his favorite activities again, and we continue to do our Yoga.
For people with ASD life must often feel chaotic and stressful, but challenges with communication limit their access to many therapies. My experiences with Billy showed me that Yoga is not only accessible to people with autism, but in many ways is perfectly suited to them. Yoga asana lends itself easily to visual teaching systems. The repetition and holding of poses is ideal for learners who need practice and time to integrate new information. Yoga offers a venue for expression of the joy and pain of life that is beyond language. And perhaps most importantly, yoga provides a meaningful activity that can be shared between individuals with autism and their families, friends, teachers, and caregivers.
Thursday, November 4, 2010
Six Degrees of Separation- Dunkin Donuts in Orleans, MA
- These two young athletic men in their respective twenties are Dunkin Donut muffin aficionados.
- Both young men have habits, rituals and preferred structures that enable them to manage and sometimes cope with social environments that seem remote.
- Both young men have goals and aspirations for their respective lives ahead.
- Both young men struggle and work hard to make the transitions in their lives.
- Both young men have experienced inordinate strife, pain, hardship and heartbreak in their young lives.
- Neither individual will ever fully comprehend their human alliance.
Thursday, October 21, 2010
Billy’s White Paper
So when Billy realizes that his device does not contain the word “rug”, what does he do? In the heat of the moment, Billy’s frustration mounts. This is a normal human response. What is extraordinary is Billy’s uncanny persistence. Billy believes he is a communicator and so even the byzantine mazes he must sometimes navigate to make his point are worth the dead ends.
So a member of Billy’s team follows his incomprehensible lead. With his device, Billy asks for the key to unlock the door that leads to a basement office. Billy explains to Natalie that he wants “paper”. They descend the steps and Billy walks to a stack of white typing paper and holds up the white paper to his friend, Natalie. Most adults would raise their hands up in the air in complete exasperation. If that too eerily familiar scenario happened, Billy would be silenced. The Billy I know would cease to exist.
Like good detectives, however, Natalie and Billy revisit the scene of the communication altercation. The bathroom is the nexus. Billy stands in front of the vanity clutching the white paper. Natalie scans the room and realizes that the bathroom has only one white organic cotton rug where there should be two floor covers. She looks at Billy. Billy looks at her. Placing the square white paper in front of the vanity, she says “Billy do you mean rug?” Billy nods and clicks his tongue between his lips. The white paper is removed and the white rug is put in its rightful home. Relief- yes Jubilation –yes Communication – you bet!
In the end, it was a white piece of paper that became an ad lib symbol for a missing white bathroom rug. Billy knew that ultimately if he persisted and his communication partner waited, listened and encouraged him, Billy would break through the glass wall and his voice would be heard.