Wednesday, May 2, 2012

The Sky's the Limit

J. Lorraine Martin

The setting was surreal: a mountain range, cast in orange hues against a crisp blue sky; cactuses dotting the landscape and the occasional roadrunner darting across a street; row upon row of well-tended tennis courts and throngs of onlookers all dressed in their tennis best. It felt unimaginable that my daughter’s neighborhood tennis team had played a year of matches leading them all the way to a coveted spot at the National Championships in Tucson, Arizona. Amazingly, it came down to the final match with my daughter representing her team in singles. My heart was pounding, a whirlwind of joy and nervousness weaving through all the struggle and collective effort to reach such a thrilling moment in time.

Years later, I found myself witnessing a moment involving my oldest son that carried the same beautiful thread of perseverance; however, before one can understand the depth and color of such a view, one must have a sense of the individual scenes that preceded it. My oldest son was diagnosed as being on the autistic spectrum at the age of two. His disability is most defined by tremendous anxiety, particularly around noises and the unpredictable aspects of life. His 17 years have played out in both subtlety and exaggerated drama.

We’ve left some schools because they didn’t understand and value him in the way I felt every child deserved, as was the case when our public school called once and said, “He’s suspended!” On that day, he had gotten overwhelmed in class by the teacher’s cough. He reacted by swiping his hand across her back; he was eight and maybe all of 70 pounds.

We eventually moved on to a special needs private school, but it didn’t take long for the phone calls and emails suggesting he didn’t quite fit their ideal of the model student. There were many days when he cried in the carpool line, reticent to step out; he experienced fire drills, pencils sharpening, and phones ringing as catastrophic events. The school implemented a system of rewards and punishments that held no meaning for my son. So one day, I left my boy crying in the director’s office. She said she could work through his perceived obstinacy; it was suggested that perhaps as parents we had indulged him too much, not giving him a sense of clear boundaries and rules. As I left her office, I felt that I had abandoned my child. I did not agree with this plan; it felt harsh, judgmental, but I lacked the courage to follow my convictions. I allowed the voices of others to overpower my own and my son’s. I sobbed in my car. Where else would we go? I feared we were hitting a dead-end. A few hours later, I was called to pick him up; he was red-faced, sweating, and passed out on a cot. Apparently, when my son declared that he was going to run all the way home to me, school personnel forcibly held him down, until all his fight drained out of him; he was nine.

My husband and I made a choice that day. While we had no clearly defined plan, we knew a gentler, more individualized approach was needed. Despite my own insecurities over whether I was strong enough to lead my son through such an unknown path, I told him that he would never have to go back to that school. I made him a promise: “I will find a school for you that understands you. I made a mistake when I left you in her office. I will never, ever leave you like that again. I’m so sorry.” A look of relief fell across his face so profound that I would recall that expression time and time again to bolster my resolve through the difficult moments that continued to come our way.

Through several years of home schooling, we grew to toss out rote learning and conventional expectations; in came more flexibility with attuned therapists who viewed all his communication as meaningful. Sometimes when new therapists came to our house, he felt so overwhelmed by the sensory experience, he would insist on meeting them in a darkened room. Other times, he would hide in a closet or empty kitchen cabinet and otherwise attempt to carry on a conversation through the door; my son had a way of weeding out the uninspired.

Experiential learning motivated by his interests became a big part of his life. I parked under bridges while he climbed underneath, and we made echoes with our voices. We waited by train tracks for the thrill of the ‘swoosh’ as it sped by us; sometimes we drove alongside the train and clocked our speed; his elaborate wooden train track designs covered much of our floors at home. We went to hotels and rode elevators because he loved the thrill of the ride. We even discovered that when you drive fast in a convertible with the top open in the rain, you don’t get wet (our adventures)! We rode bikes in the dark and swam oceans in the rain because such experiences brought him joy. In all our endeavors, I aimed to fill him with a sense that taking risks was worth the effort; that the fear that sometimes steered him away from group settings or even venturing out at all could be managed, even overcome.

We had to grow as a family in stepping outside our own natural comfort zones as we were often placed in emotionally painful public situations. A group of neighborhood parents at my daughter’s tennis match may still remember the boy who was screaming and charging at the barking dog leashed up to a fence; a plane of people en route to Chicago may never forget the continual wails emanating from 12C during a grounded flight. Sometimes my tears and my husband’s frustration were on full display; sometimes my daughter and other son locked their doors and cried in despair. Imperfectly we loved. Imperfectly we grew in our capacities to think beyond self and beyond the typical definitions of what a ‘normal’ life entailed. In fact, somewhere in the process, I believe we began to live more fully, with more vibrancy. For to join forces in another’s struggle and witness a soul’s courage to overcome, is to discover the purest essence of all the nuanced, gray areas that define life and love.

Through several years of searching, we eventually found our way to a school that was a game changer. In fact, it felt like a dream for quite a while. Our son would come home and say, “I love school! They understand me! They help me!” School emphasized emotional regulation as the foundation to learning and finding satisfaction in life and in such an environment our son flourished. However, a difficult time rolled in during his second year, as he fell into a continued state of panic so severe that his school day had to be reduced to just a few hours each day for several months. We theorized that the wrong medicine, coupled with the onset of puberty and a history of a life often felt in traumatic proportions, converged into a point of crisis. He often could only manage to make it to school by immediately hiding in a make-believe fort under a table, covered in blankets, all room lights turned off. When he did venture out from the fort, he sometimes had exaggerated reactions with teachers, which had me spending all my time in a nearby coffee shop on-call. One time I entered the school doors after his fist went through a window in a spell of overwhelming angst. One teacher was sweeping up shards of glass, thoughtfully and quietly. She offered me a tender look that carried the elements of a virtual embrace. The director refused to accept any money to replace the window and gently reminded me tomorrow was another day. My son cried in remorse and begged me to home school him again.

Quite understandably, most schools would have shown us the exit door, yet day-by-day, loving teachers sat on the floor next to my son hiding in the fort and offered something of themselves more powerful: compassion and empathy. Between home and school, we all listened to him express his sorrows and fears without judgment, kept him safe in fits of anger, and lovingly tried to help him figure out ways to cope and find greater reservoirs of inner calm. During one of the lowest moments of this time period, I lay on the floor next to my son after watching him do the nearly unbearable as he vigorously beat his head with his fists, exasperatingly asking me to make his emotional pain stop. I stroked his head as we cried together. Clinging to delicate threads of hope, words of resiliency rose up within me. “It won’t always feel this way. It will get better.” Slowly, surely it did get better. Transformation came for a child not by punishment for being unable to conform, but rather by the more impactful tool of being validated as a striving, capable human being in need of a guiding, tender hand to find his way.

Now in his fifth year of attending this school--and years away from that very trying time--I recently found myself motivated to arrive early for a school day that included lacrosse at a nearby park. While our son has made enormous progress and most often now displays a cheerful demeanor, he still struggles with anxiety so I imagined a variety of scenarios. Maybe he’ll be sitting in a teacher’s car as he sometimes does when he needs a break from an activity. Maybe he’ll just be walking and watching from the sideline. I have learned to commend all efforts and remain unattached to any one particular outcome.

However, on this sunny day, I surreally sat on the bleachers watching my son play lacrosse with his schoolmates and teachers. The sentence sounds so casual, so ordinary, and yet the meaning for our family is quite profound for the scene serves as a symbol of the innumerable ways our son is living his life with greater contentment and happiness. His story is just one as every student running on that field carries memories of struggle and triumph equally as moving; teachers running with them, enthusiastically offering encouragement and support in countless ways each day. Sitting alone in the stands, I had the privilege of watching a group of heroes make it all look so effortless; the swell of a rousing cheer rose within.

My son saw me, smiled and waved, “Hey Mom.” Two words could not have held more meaning. As I watched him continue to run the field embodying what it means to be joyful and carefree, my spirit ran alongside him.

When my daughter hit the winning shot that clinched the national title, her tennis team erupted in cheers and rushed onto the court in a wave of hugs and exultation. In contrast, the only sounds heard on this day were the whistle of a breeze and playful ribbing between some students and teachers. For a casual onlooker, the extraordinary story behind the group is sadly missed for it doesn’t follow the more easily recognized societal scripts that bring applause and recognition. Yet, like the day in Arizona, it held an affirming example of life’s goodness and in all of our potential to empower each other past perceived limitations, reaching unimagined heights—not only in those we love and support, but also within ourselves.

At the end of the game, my son walked up to me. “Mom, do you think we could come here again with the family and run around together on this field? I love it!” Swept up in the exhilarating highs of life, just as I once felt while nestled within a mountain range under an Arizona sky, I replied, “Yes!”