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.

Really? Have the dough but no go

Weekend update with Matt and Billy-May 2010

Saturday afternoon, Matt and Billy walk into subway for lunch. Matt places the usual order pepperoni sub with mayo (I just found out- disgusting).

The lady behind the counter says that they have dough but not the bread if you wait 15 minutes, the bread load will be ready. Have you ever gone to subway and been told that they are out of the major staple? It’s like going to Starbucks and being told that they are out of coffee. But if you wait. . .

WAIT is not Billy’s favorite word particularly when he’s painstakingly reviewed all his choices on his device and communicated seamlessly to Matt his final selections in the interim. Matt has also been told there is a flat bread available. It’s time to play high stakes poker. Never missing a beat in the conversation, Matt tells the lady to start loading the flat bread.

Like Matt’s bodyguard, Billy scrutinizes everything the lady does. It is a tense moment and then relief. Billy will let this slide. The alternative would have been a deal breaker.