Wednesday, February 20, 2013

Labels, Light, and Love

J. Lorraine Martin

“Your son has pervasive developmental disorder, not otherwise specified.” That’s a mouthful to say, let alone hear.

It was explained as a type of autism. That was 16 years ago. I did not have the Internet at home.  There was no Google for further research. Dustin Hoffman had provided my only experience of autism in the movie, Rainman.

Looking back, the declaration--the actual diagnosing words from a stranger, a neurologist, is fuzzy. What did those letters, PDD-NOS, mean? Could a socially constructed diagnosis tell me who my son would become?

When I got home from that appointment, teary-eyed and uncertain, I looked at my son with his large brown eyes, head of blondish-brown ringlets, and cherub face. We had already begun to find our rhythm together. 

In our first year together, I intuitively discovered that if I laid him on the floor, and placed my head several inches over his, he would run his delicate, tiny hands through my long hair, looking up at me, calm and connected, as if in a cocooning tent of safety. I found that if we rocked in the rocking chair in his room in complete darkness, while I sang songs, or softly talked about everything we did that day, he was calm, and rested contentedly against my chest. Sometimes, my heart ached as I yearned to hear him coo or respond back in some more demonstrative way, but he didn’t at that time.  

When my husband and I returned from that neurologist visit, my son handed me a skillet. His limited vocabulary couldn’t form the words to express his desires, but his gesture told me all I needed to know. He happily ran around the house as I whipped up an egg for him.  Looking at my sweet, innocent son doing his best to communicate with me, I knew, despite my fears of the unknown, we would continue to find our way.

Due to his unique sensory system, he explored the world in ways foreign to me. To merely throw rocks in a creek wasn’t enough for him; we often found him wading waist-high, and on a few occasions--and to my great alarm--wading neck-high. He needed to feel it, water wrapping around him, holding him secure.  The neighborhood pool? Being fully dressed was not an obstacle to jumping right in. An ocean swim, in 30-degree weather? We’d watch from the shoreline in winter coats as he happily swam. Puddles?  They were his personal pools, as he laid fully clothed in them. On rainy days he begged to play outside.  Muddy exploration in the rain?  Even better! Bushes? I found him lying on our hedge once, as if to merely see it was not enough to fully comprehend it. A swing set? As much as he loved to swing, climbing across the top beam was far more compelling. Other mothers often called to me or flinched in fear as he climbed. “He’s fine,” I’d say. “He’s a great climber!” And when sunlight came streaming in through the windows? He squinted his eyes and directly stared, lingering in the light. 

My autistic son’s unique passions and sensory system have enhanced my own life experiences: I’ve swum oceans in the rain with my family; I’ve driven in a convertible with the top down during a storm, as my son and I laughed together in the thrill; We’ve sung at the top of our lungs stopped in traffic in that same open-topped convertible oblivious to anything but the joy of connection through song; I’ve chased him through a park as we giggled on a carefree day ignoring the idea that moms don’t usually chase 17 year-olds around in such a way; We’ve taken bike rides together on freezing nights because he loved it; We've ridden elevators and chased each other on spiral staircases in large buildings simply for the joy of it; We’ve parked under highway tunnels and played around with our echoing voices; We’ve chased geese by tranquil lake trails, and found the hidden path by the library to hear the song of birds, then put up a backyard birdhouse to further his passion; We’ve stood by fast moving trains to feel the exhilarating embrace of power as it swept by us.  

Our experiences led us to build relationships with others that transformed not only him but also me. Kind and truly open-minded people that affirmed the goodness of life in countless ways; I consider a small group of professionals as transformational in my son's progress. Whether cultivating his unique passions, or providing safe harbor during more challenging times, they provided something many could not: understanding, loving acceptance, and a belief in the goodness of my son’s personhood.  

The hard truths, though, were also in abundance along the way. Societal rejections occurred, from the looks of despair on the mothers’ faces of his first playgroup when I shared his diagnosis (as if their kids could catch it), to family member responses that we had been cursed, or that it was best to keep his diagnosis a secret.  Social invites from his classmates were few, and there was a church that never reached out again after he had a crying spell while others silently gawked. A public school used suspension as punishment for the challenges inherent to his disability, and there was a poorly trained school aide who would later scratch my son. Private school administrators held my nine year-old son down until his fight left him and he fell into slumber; he was apprehensive to go to his class due to fears around sudden surprises and noises.

During a particularly hard time, I hired a home play therapist for a couple of hours to simply be with him--to bond, to form a friendship. After such hard school experiences, he became increasingly scared of new people and situations, and would hide in a closet or under a blanket when he had to meet them, though he was cheerful and talkative as he avoided all visual contact. One therapist--who showed great promise bonding so nicely with my son, eventually drawing him out from hiding--abruptly quit, providing superficial excuses. I later learned she had a long history of quitting families because she had a type of child she liked to work with, and apparently my child didn’t make the cut. I was forlorn over yet another rejection. I sat on a couch as tears burst forth, shoulders hunched over, my fight and resolve leaving me.  How could I keep finding the strength to continue through so many marginalized moments? How could I stay strong for my vulnerable son?

My son walked over. “What’s wrong?” he asked. I spoke honestly. “I’m just sad that she decided not to continue to come over and play with you.” My son’s face showed a tender expression as he walked over to the couch and sat next to me. He softly said, “I’m sorry,” as he sweetly placed his head on my shoulder.  We just lingered that way together for a few minutes.

At that time, my son rarely sat still, and certainly not right next to someone. He was so traumatized by many of his life experiences, that I hadn’t seen displays from him that he considered the mindset of another. In that moment, my tears was suddenly reconfigured from sadness to joy. Moments of such empathy and pure presence are rare gifts in life, and there was my resilient son fully-present, sharing such a soulful gift with me. In that moment, he reminded me that we are not defined or limited by another’s interpretation. Our loving bond held the power to trump bias and setback.

A few years later, when much had been overcome, and his coping and reflective skills had grown exponentially, he looked at me one evening, gently and sweetly saying, “Mom, you saved me.” Around the same time that he began to initiate tender hugs and spontaneously say,  “I love you.”  He was 14.  

I realize, though, how much my son saved me. By his courage, he taught me how to live more fully, experiencing all my highs and lows, neither boastfully nor blamefully, but rather with acceptance. By his presence, he taught me that no matter the emotional pain of any one moment, loving connection ultimately defined and empowered us. For whether we were joyfully running together through a park without a care in the world, or crying together through a more difficult time of struggle and rejection, we have lived our moments, however they came to us.  We have lived them together, in light, in love, in truth.

Abandonment.  Isolation.  Marginalization. Judgment. Fear. Autism didn’t deliver those things; society did.

Strength. Resilience. Overcoming obstacles. Triumphant joy. Meaning.  Society didn’t give me those things; my beautiful son did.

He just turned 18.  He beamed by his birthday cake, with that same tasseled curly hair and eyes that shine, “I feel like part adult, part kid. I’m a little of both.” He also describes himself as “part autistic, part typical.” His siblings stood around him making silly faces together as the camera snapped.  He composed a song on Garage Band in honor of his birthday and watched a favorite elementary aged show. He also put out bird food and hoped to see the family of doves again that have been recent visitors to our backyard.

He talks a blue streak and has a quirky sense of humor, often cracking us up or himself.  While he still has struggles uniquely his own, he has learned to cope better, no longer displaying the big emotional outbursts that characterized his earlier years. His spirit is calm.  I now have the pleasure of frequently hearing him spontaneously call out, “I’m so happy!”

Just like those early years, his path going forward is unknown and feels unplanned, as traditional milestones do not come to him on the world’s prescribed timetable; yet, as I learned early on, the unknown holds possibility, joy, and hope. It is a different and unexpected path, but it is a path that holds those moments of purity and beauty just the same.

He states that he plans on always attending his school, which he loves.  Thankfully, they do not arbitrarily graduate and push their students out at any certain age, but rather continue supporting their social and emotional growth into young adulthood. He also plans to live with us, his parents, forever.  He wouldn’t mind getting an apartment one day in a high rise (for those fun elevator rides) and also near a train track (for those exciting swoops of power of a passing train). Whatever his future holds, our family will be there, happily by his side, sharing in his passions, swept up by the power of love.

A version of this essay was originally published on