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.

Autism Awareness Month 2011

Let’s honor and celebrate the lives of individuals on the autism spectrum. Their accomplishments, courage, humor and zest for life in the midst of endless challenges are breathtaking.

Through his painting, Billy expresses his joy, energy and aesthetic sensibility. It is a thrill to watch.

Billy’s reality is autism and independent self-expression.

"Firework" by Katy Perry is the perfect accompaniment!

Happy Valentine's Day

I’m not terribly sentimental about Valentines Day. Even if I was, it is impossible to get into a good restaurant and the likelihood of a pending snowstorm is high this winter season. Since Hannah’s article ‘Yoga and Autism: A rewarding and challenging assignment’ was published in the December issue of Yoga Therapy Today, however, I’ve been thinking about the word “love” and what it means to me. After reading Hannah’s account, and in retrospect reflecting on our frank and heartfelt discussions about why she and Billy endured and thrive, I believe that the essence of Billy and Hannah’s story is that love is an open invitation. An invitation to be present in each others lives. The dates, times, and places are unknown. The invitation is what matters.

Happy Valentine's Day!

Yoga and Autism: A Rewarding and Challenging Assignment

By Hannah Gould, M.Ed, RYT

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.

Hannah Gould, M.Ed, RYT is a Yoga therapist in the Boston area providing services to children and adolescents with a variety of learning and developmental challenges. Hannah also consults with area schools to help integrate Yoga and mind-body practices into educational settings.

Gould, M.Ed, RYT, Hannah. "Yoga and Autism: A Rewarding and Challenging Assignment." Yoga Therapy Today Dec.2010: 9-11. Print. http://iayt.metapress.com/content/m3815h325qu67x71/

Photos: © Millicent Harvey 2010

Six Degrees of Separation- Dunkin Donuts in Orleans, MA

Six Degrees of Separation explores the existential premise that everyone in the world is connected to everyone else in the world by a chain of no more than six acquaintances, thus six degrees of separation. Wikipedia

It is a crisp electric sky blue glorious autumn day at Cape Cod. It is Saturday and Matt and Billy are on the road. Their preferred lunch stop today is a New England classic, Dunkin Donuts. At the front of the line is a physically fit young man in his mid to late twenties. Although polite and well mannered, (he addresses the employee as ma’am, and precisely includes please and thank-you for all social interactions) he appears uneasy or unadjusted in this cheerful, familiar muffin and coffee aroma filled establishment. Billy and Matt stand right in line behind this young man and Matt notices how his physical demeanor appears “coiled”. Perhaps Matt’s radar is more acute because it has to be. Historically Billy’s sounds, jumps, gestures and general movement patterns are either a magnet for human generosity, curiosity, and good will or a fulcrum for human derision, rigidity, and intolerance. In those split seconds, when Matt reads the situation, Billy jumps and clears his throat due to an allergy condition that inflames the lining of his esophagus. That medical reality doesn’t matter. Billy’s guttural sounds are jarring and his deliberate jump in line is not social protocol. Startled, the young man in line reacts instantly and with a muscular intensity. Sensing his heightened level of disturbance, Matt acknowledges both of these young men’s separate but connected realities. “My son has autism and I apologize if he caught you off guard”. The young man immediately disarms and states that what Billy did was fine. He was the one who was a bit “jumpy” since he returned home from Iraq.

So what are the six degrees of connection?

1. These two young athletic men in their respective twenties are Dunkin Donut muffin aficionados.
2. Both young men have habits, rituals and preferred structures that enable them to manage and sometimes cope with social environments that seem remote.
3. Both young men have goals and aspirations for their respective lives ahead.
4. Both young men struggle and work hard to make the transitions in their lives.
5. Both young men have experienced inordinate strife, pain, hardship and heartbreak in their young lives.
6. Neither individual will ever fully comprehend their human alliance.

Billy’s White Paper

A white paper (or “whitepaper”) is an authoritative report or

guide that often addresses issues and how to solve them. Wikipedia

If you can’t speak and your communication device does not contain the word, picture, or symbol for a white bathroom rug you need, what would you do? The answer doesn’t come quickly because it requires creative problem solving. It also demands faith that the person you work with believes you have a message. In other words, the success of the social engagement is predicated on the often overlooked, devalued, and even maligned concept that an individual on the autism spectrum is a communicator.

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.

Companion–“a peaceful spirit with a big heart”

Bernie died today – Thursday July 22, 2010

He was Billy and Ben’s dog for fourteen years.

But Bernie was also a friend, a companion, a social compatriot in our tightly knit family.



We received Bernie from the NEADS (New England Assistance Dog Services) program in Princeton, MA. This worthy non-profit organization’s mission is to train dogs found in shelters to guide, support, protect and comfort individuals with an array of developmental and physical challenges.

Bernie was what NEADS referred to as a “social dog” whose tail always wagged. Bernie was a mix with no particular pedigree, he nevertheless stood out with distinction. Passersby’s would pause and marvel at his muscular 95 pound regal bearing with a luminous auburn coat. As a young boy, Ben proudly took Bernie on walks and as a young man they would take runs through the neighborhood and wooded trails. After their runs together, Bernie would bound up the backyard and carry back to Ben, no not sticks, but major tree branches as a way to entice Ben to play , tussle, and just hang out together. In those daily hours when Ben and Billy’s needs diverged, Ben sought out Bernie and together they curled up for hours on the floor, nustling and content. Ben and Bernie’s energy was boundless and so was their love.



The first time I brought Bernie home, a little Billy spied us thorough the glass kitchen door, turned around, ran to his bedroom and jumped in his bed and pulled the sheets over his head. This was an ominous beginning but Bernie never shied away from Billy’s less than enthusiastic welcome. Respectfully, Bernie stayed by Billy’s side no matter what happened. Bernie waited, stayed close and never distanced himself from our family’s unfolding story. Bernie’s unabated attention was a primal wellspring of support. Billy’s gleeful Irish jigs, jumps and squeals of delight were greeted by Bernie with equal vigor and carefree abandon and when a 17 year old Billy became sick, Bernie never retreated. Billy’s anguished screams and body contortions as he tried so hard to control his pain-ridden body were witnessed by a quiet and solemn Bernie.



Through New England snows, ice, hail, drenching rain, slick mud and thick heat, Bernie always accompanied Billy to the barn every afternoon and every night. Whether Billy listened to music, jumped on the trampoline, sat on the rocking chair or laid down on the trampoline folded in blankets, Bernie sat in front of the barn and waited. After each barn session without fail, Bernie escorted Billy back to the house.

Billy was never alone.

My visualization of Billy and Bernie running up the hilly yard to the barn is and will remain a deep fountain of gratitude, reassurance, and renewal.

Billy is not alone.



photos: ©2010 Millicent Harvey Photography

Barium Test

Just because you have the social story doesn’t mean you won’t encounter glitches.

Billy clears his throat after every meal. I don’t really mean, “clears” his throat. There is no proper word to depict the full body propelling tilt combined with the sound of a violent yet unsuccessful guttural purge overtime. This monumental throat vibration will at the very least inflame his entire esophagus tract. Although I am sorely tempted to ignore this daily reality show, a proper investigation can no longer be “put on hold”. The medical puzzle is why does Billy persist day after day in conducting such ungratifyting exercises? What purpose does it serve? Does this communication behavior infer an undetected source of pain? No one can answer that question without performing some tests. One of the tests we tried was a barium swallow. So armed with some facts and googled research, we piece together as best we can what will actually take place.
Prior to our visit, Billy reviewed the social story. The narrative written by me informed Billy that the test was like an x-ray except with liquid drinks. He knew that he would sit, drink this barium cocktail and then lie down on the table and wait for the x-ray. It was an “easy” test. What Billy didn’t know was that the radiology team expected and directed him to lie down on the machine and sip from a straw in a supine position. Billy growled. The medical team assumed immediately that Billy didn’t care for the taste or the texture of the drink. For some individuals on the autism spectrum, this conclusion might be accurate. But not in Billy’s case. No one likes an unexpected switch in the game plan and neither does Billy! What got him irked was the unrehearsed deviation from the social story. Or better known as the “deal”. So Billy vocalized adamantly his disapproval. No problem. But then they informed me that Billy needed to move from his back to his side. The visual and the text denoting the “side” of the body was in the carefully crafted social story, but it didn’t matter. Billy couldn’t in that instant decode the message. Pointing to the specifics in the social story or telling him to turn on his side did not translate! For Billy, I spoke a foreign language. Billy was going nowhere. So I did what I’ve done so many times – I “ad-libbed”. Determined to complete successfully this barium swallow exam, I looked at Billy and said, “do this”. With my radiation proof vest wrapped and tied around my torso, I laid down on my side on the cold tile floor and looked up at Billy on the x-ray table. Billy understood my interpretation and without further adieu, turned on his side. Yes, we completed the test. More importantly, Billy was spared the frustration and social humiliation that signifies a breakdown in communication.

The dilemma is that the doctor who authorizes the test is not the doctor who will conduct it. Doctors are dedicated and engaged in their patients care specific to their expertise. The current system, however, is not designed to value the time required for doctors to communicate to referred doctors about the patients communication issues and needs. Neither is there time slated to assess and communicate to the family all the steps involved. Billy and all his compatriots need to know the facts. Knowing what will take place, in what order and when it will be finished cinches the deal.

The Beautiful Logic and Symmetry of Autism

Monday was a perfect may day. Low humidity, a gentle breeze, a prime day during rush hour to drive up 128 to Milton for Billy’s haircut. Billy missed his March appointment due to a yet to be explained saucer black dilated eyes that can warp his personality and spirit disrupting all normal routines. For twenty years, Billy has had his hair cut by Robin. It wasn’t always a smooth ride. As a baby I held Billy on my lap and he screamed as Robin did her best to give him the current style. Billy, the little boy, could sit independently in the stylist’s chair as long as the sweet treats lasted the duration. As a middle schooler, the treats were healthier and Billy tolerated the experience on his needed terms. A few choice pinches for me, arm dismissals at Robin’s pointed scissors, timely abrupt departures to circle back to the chair, and an insistence on spraying his hair with water until his chair and Robin’s dog Petie were thoroughly saturated.

At the ripe old age of 20, Billy had mastered all the finer points of a haircut. Despite the initial review of every room, closet and yes the refrigerator in Robin’s lovely home, Billy was by all accounts fine. On this early Monday evening, Billy held a whole foods lime green bag loaded with relatively healthier treats, his device, the outlet cord, and three mini Poland Spring waters. In his other hand, Billy saddled over his shoulder his backup device in its black case. For “ray ban” Billy, carrying heavy objects is no big deal. Blonde hair long enough to flip and wave in every direction around his face and neck, Billy and I once again walked together down the driveway and up the steps to the backdoor.

And then in an instance, the whole picture changed. As was his custom, Billy opened the unlocked backdoor. The basement salon, however, was dark. There was no movement, no music, no broadcast of Oprah on the little white TV, no Robin sweeping the hair up from the last appointment greeting Billy with a big smile. There was hollow silence. Billy peered down the stairs and then proceeded to enter the once lit, upbeat hair salon. He scanned the premise and then walked back up the stairs and shut the backdoor behind him. He placed his bags on the patio table and reclined on the lounge chair. This was my cue that we would wait for Robin

Frankly, I was distressed. Billy’s reaction to leaving without a haircut could be ugly. But my tension mounted even more thinking about what could have happened to Robin. In twenty years, she had never stood us up. There was no reassuring precedent. Standing on the edge of the deck, I knew I had to remain cool, calm and collected so Billy would go with the flow. On the other hand I wanted to race into the house to see if Robin was okay. Thinking she might be sick, I dialed her number three times only to get a very loud voice message echoing out to the patio. So I decided to take Billy’s approach, assume she took the dog for a walk and would be back shortly. Thirty minutes passed and Billy seemed peacefully immersed in the gentle breeze moving through the canopy of trees. As I observed Billy’s almost languid demeanor, I realized how coiled my brain was. Feet up, Billy rested on the lounge chair while I stood teetering on the edge of the deck with my cell phone glued to my sweaty palm

As thirty minutes became an hour, I knew I had to inform Billy that the haircut was cancelled. What I said to Billy was that Robin was not here and that we would come back next week. And I looked Billy straight in the eyes and made a vow “i promise Billy”. Billy returned my searing gaze and then held his hand over his hair as if to say “you promise?” I repeated, “I promise Billy that next week Billy will get a haircut!” The promise was sealed.

Billy sat down at the wrought iron table and methodically opened his lime green whole food bag. First he ate his three brioche rolls. The next ziplock bag contained three apple fruit bars which he ate and then neatly placed all the wrappers and other paper articles in the bag. In a saloon guzzle, Billy downed the three Poland Spring waters and then crushed them as if he were at a raucous frat party. All items were stuffed into the same zipper lock bag. Billy stood up and opened up Robins backdoor and left the bagged refuse on the ledge leading to “Robin’s nest”.

Without a hitch, Billy and I returned to the car and drove home. Later that evening, Robin called to apologize for leaving Billy and me stranded. Her father had died. No apology needed. As we concluded this sad phone call, I told Robin that her dad must have known about her oversight and somehow made sure that peace prevailed.

Later that night, I thought about all the lessons taught and learned that were highlighted to me on that warm may evening at Robins’ house.

What came to mind?

Billy learned the meaning of a promise.

He learned what a message was.

He learned that it was meaningful to listen to a message.

He learned to trust the messenger.

He learned the concept of next week.

He learned that “shit happens” and that’s okay.

He learned that no schedule is fool proof.

He learned to be comfortable trying new approaches.

And I learned from Billy how to relish those wisps of serenity.

You Don’t Need to go to Avatar to “See”--Just go to Walmart

Billy scouts every aisle at Walmart before he makes his final selection. Swiftly and in multiple rounds, Matt and Billy survey all the merchandise which in Billy’s case can take a good hour. Billy’s approach to shopping is like the woman who overwhelmed by all the possibilities, just puts it on hold under her name and swears she’ll be back (that would be me). Billy, however, rapidly paces every nook and cranny and then circles back to a particular aisle and shelf. It doesn’t mean it will be the purchased product but Billy sometimes just has to stand and admire the merchandise.

So was the case this day in Walmart. Black down parka and black ray bans donned, Billy stood looking straight ahead at a kaleidoscope of bright mostly neon colors. Yes Billy was in the girls department standing in front of the pajama section. And standing right next to him was a little red headed girl who was no more than four or five years old. She too was admiring the palette of pajamas. A mutual admiration club, they both reveled at the endless color compositions.

And then it happened. The little red headed girl’s mother saw them standing right next to each other. A tad nervous, the mother suggested gently that she come closer to her. As this brief exchange happened, Billy looked straight ahead at the clothing color wheel. Free of any cultural norms, Billy sees no barriers and neither does the little red headed girl. She looked at her mother and then she looked up at Billy. Turning her child face toward her mother, she said “it’s okay, mom.”

Billy may be unaware of gender norms but I think he knew that the little red headed girl who stood by his side truly shared his love of colors.

A moment of grace.

To see more of Billy's paintings visit www.voicecolors.org/artgallery.html.

It’s Not Okay You Won

I’m embarrassed to admit that until recently this was the generic game script that was on the device. It was an inexcusable oversight.

Why?

Because Billy at the age of 20 should not be told or expected to be happy that he lost. That’s ridiculous. Have you ever heard any sane adult say “give me a high five- I won!” I don’t think so and neither did Billy. So when this exact scenario played out and Billy was asked to give the winner a high five, he refused. He shook his head no. Right on Billy! First the script is not developmentally appropriate. And second your family ancestors are competitive, scrappy winners. Autism does not rob you of your boisterous, hearty, competitive spirit. It’s in your blood. It’s in your genes. Billy’s great grandfather known as Bull Edwards was a competitive star football player and was inducted into the Football College Hall of Fame.

In many ways, Billy reminds me of Grandpa Edwards. They enjoy physical jockeying. They share a maverick spirit and they both have a winning smile and chuckle.

The moral of this story is don’t lock your loved one in time.

Update the scripts. Keep it current. Keep it real.

Never to diminish the importance of good sportsmanship here’s the new script

Billy Meets Rondo

On most Saturdays, Billy and Matt scope out suburban stores. The final store selection is not an easy determination. Oh not at all! Billy cavorts, haggles, and negotiates with Matt every Thursday night prior to the weekend. With great deliberation and many retractions like the infamous voice output button–“I changed my mind”, Billy makes his final choice. Trust me, you don’t want to be in my kitchen on Thursday nights when Matt and Billy are deal making on the device. Billy sits on a chair next to the device situated on the kitchen counter and Matt stands on the mirror side. The tension that exudes from the two of them is reminiscent of traders in the bullpen at the end of a day. From my vantage point, the ambiance does not lend itself to a calm or relaxing evening at home. The upside is that on Saturday Billy and Matt are in the car cruising to some retail establishment. Oh yeah!

Billy would make a great retail manager. When he walks into any given establishment, he knows immediately if a display is missing, moved or no longer on the floor. Apparently he also visually scans select clientele. One recent trip Billy and Matt went to Blockbuster. Always with black ray bans on in public, Billy started his scouting mission down the aisle. In full stride, Billy suddenly stopped, turned around and looked up. In order to capture his full height, Billy moved his glasses to the tip of his nose and well stared. Yes it was Rondo, the starting star guard for the Boston Celtics. But Billy didn’t know that. What he did know was this guy was in another league and Billy has always intuitively been impressed by athletes. So Rondo and Billy met. After Rondo and Billy had selected their respective merchandise, Billy and Matt stood in line behind Rondo. As they waited in line, Billy performed one of his notorious jumps which is a lifelong habit. Rondo recognized the kid’s talent and remarked “he can jump”. Yes Rondo, Billy sure can!

Another Way to Take a Break

For two years between the ages of 18 and 20, Billy no longer took what is referred to as a “break”. The totality and severity of his pain made the reality of taking any break moot. Gymnastics, swimming, skiing, ice skating, working out, taking walks on conservation trails, jumping on the trampoline nightly ceased to exist.

Billy’s life as he knew it was now an amorphous haze of former shadows. Bedridden and thrashing spiritually and physically from pain, the structure and routines of his day incinerated. It was replaced by a bevy of local and out of state meetings with doctors of diverse specialties, x-rays, MRI tests, hospital procedures and emergency room visits.

Yoga had been introduced to Billy two years prior to the onset of his medical morass. During that period, he learned that yoga was a space he could enter that was calm, and quiet. Methodic and mysterious yoga chants selected by Billy infused each practice with a meditative quality. In time, yoga became an experience in learning about the parameters of his body as well as how he could extend the physical possibilities through breath, trust in his teacher and his youthful body. As his body failed him, the yoga of sun salutations, warrior poses and downward dogs were no longer accessible. Restorative yoga became Billy’s serenity prayer. For two years. Restorative yoga was. Billy’s “schedule”. Supported by layers of blankets and covered with the secure weight of wraps and eye pads shielding his eyes from the world, Billy surrendered his mind and body. Instead of trembling lamentations, there was the glorious sounds of rhythmic breathing.

“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Who is the MWRA?

MWRA made a personal call to everyone in the Metro Boston area on Saturday afternoon.

There is a catastrophic break in the water system. And then the message adds that you should boil all drinking water.

I save the message, hang up the phone, and then I freak. How in hells name will I explain a water break to Billy as the reason why he can’t brush his teeth, whirl the water all over his eyes and conduct all his water related routines? Maybe we should go on a road trip take a grooming hiatus or turn off all water sources. Fire emergencies and power outages are scripted but this blip is certainly not programmed on his device. Maybe I should develop a page entitled potential catastrophes.

Communication stories are not developed in a vacuum. So anyone who tells you that the communication pages are complete at any age should have their head examined.

Case in point.

Who takes a break like this?

Most breaks look more like this:

Let’s face it. We live in this high octane, megawatt connected culture. Besides if you did put your feet up on the desk, you’d surely be reprimanded.

So how do you make sense of this arcane concept when there are no adult role models and the Mayer-Johnson photo is less than helpful?

Gymnastics made the difference. When Billy was 10 and started taking gymnastic lessons with Patrick, his first inclination was to run to the trampoline, scream, run to the sugar packed refrigerator in the coach’s lounge or head for the great outdoors. Through visual schedules, visual systems and props outlining each basic step of a gymnastic move and most importantly Patrick’s sense of humor, patience and ability to model each move, Billy slowly took a shine to gymnastics and Patrick. Billy’s relationship with his coach and his ever increasing understanding and working knowledge of all the stations, equipment, routines, and level of expectation required enabled Billy to progress from a bewildered kid in the gym to a composed and determined athlete. What we didn’t anticipate was that Billy would become a skilled gymnast whose level of execution demanded more focus, energy, composure and risk. The twice a week workouts were getting increasingly difficult. In order for Billy to complete successfully the circuit, he needed to take breaks.

Initially we showed him the Mayer-Johnson symbol for taking a break. But Billy knew the schedule and wanted to proceed without missing a beat. As Billy bullied his way to the next station, he became more frustrated. He could not execute the tasks with the same precision. Nor could he endure the level of repetitions required.

So one day Patrick took another course of action to help Billy pause periodically in practice. Patrick signaled a break by simultaneously counting out loud and using his fingers to visually mark the number before going to the next station. With every sinew tilted toward Patrick and the hand count, Billy barely tolerated the gymnastic breaks. For Billy, self-pacing was not an intuitive concept. With time and practice, however, Billy became aware viscerally of how much easier it was to execute a move if one took a break. Connecting with his body’s concrete physical changes became the reason for taking a break. Billy now understood the intrinsic value of taking a break because he experienced first hand the physical limitations of his body when fatigue, sweat and rapid breathing became his reality.

Rock and Roll Billy

March, 2010

Monday morning, Billy and I review the social story about a new doctor visit. Holly takes a picture of a fairly innocuous suburban brick building as a way to visually emphasize the fact that this trip is primarily a conference and not a bona fide medical visit. At the end of our meeting, the social story concludes that the new doctor will examine Billy’s eyes, ears and throat. This description of doctor protocol is our standard definition for a noninvasive visit. Billy learns that the doctor’s interaction with him is specific and time sensitive. The social story summarizes the medical event as an “easy visit”. Historically, this “easy visit” pitch does not always assuage Billy’s fears. Billy’s ongoing pain and discomfort generates a lower tolerance for schedule disruptions and, new information or activities. Acute pain often dissolves any element of trust in the social story display. Billy’s survival instincts to fight or flight are formidable. I brace myself for a rip-roaring showdown in the kitchen, in the car and yes maybe at the doctor’s office.

But I am wrong. I am wrong about Billy. Not once did it occur to me, that Billy’s response to a difficult request might change. That Monday morning, armed with the social story, I prepared for the same response not for greater insight or transformation on Billy’s part. On the level of intent the social story is a teaching unit for declaration not education. But Billy is a communicator and communication is fluid and evolving; never static, adults learn, change and grow. Why should Billy’s life be different? Years of physical duress, and emotional trauma compounded by an array of medical procedures has a profound impact on Billy’s sense of self. Pain and all it’s accompanying emotions is a deeply personal and visual experience that he knows, identifies and expresses through his language device system Billy understands why he needs medical help. Billy trusts the message and the person who delivers it. Emotional and social confusion happens daily and in sync, emotional and social maturation unfold. My observations and my data collection are not all encompassing. I am not a mind reader. Perhaps I too suffer from “mind blindness”.

So that Monday afternoon, Matt, Holly, Billy and I go to the suburban medical office building. We file into the doctors office. Four chairs are positioned in front of the doctor’s imposing desk, we take our seats. The laptop stationed in front of him, the doctor begins his inquiry. Our social discourse is awkward. His eyes dart up to pose the question. But as soon as Matt or I answer, he focuses entirely on the screen. This question and answer disconnect period drones on for almost an hour. In an almost Zen like practice, Billy sits erect with his palms resting lightly on his thighs. He dons the black Ray Bans and there appears to be a slight smile on his lips. Billy is serene and we are at new medical facility with a doctor he has never met. And then the doctor stops inserting the information. He swivels his chair toward Billy, glances at him and directs his question to us. “Is he light sensitive or a rock and roll star?” I answer proudly, “I think the latter.”

Rock on Billy.