Friday, June 18, 2010

(Extra) Ordinary Days

Kristen Spina

I hang back, following but not too closely, watching my son and his two best friends through the viewfinder, my face hidden behind the awkwardness of a zoom lens. As I watch the boys cross the red wood bridge, I snap half a dozen photos. And then again, as they settle in on the dock, taking turns casting, tossing pieces of bread to a giant turtle bobbing on the lake’s surface.

There is little to show here for my son’s differences. He is simply one of the guys, enjoying a bit of freedom and fun on a weekend in the Catskills. I scan the lake and the mountains beyond, the grey clouds sitting low in the sky, and think about how remarkable the scene really is -- how its very ordinariness is something to celebrate.

I take a few more pictures, then leave the boys to their adventures. Later, they will head for the pool, to toss themselves again and again down the twisty waterslide. They will walk to the barn and feed the rabbits and pigs, play baseball, climb the playground equipment and sit side by side in the dining room, buttering their own bread, pouring their own milk, weaving themselves in and out of the tangled knot of parents and grandparents, friends and family surrounding them on this late spring weekend.

When I look at the shots taken that rainy morning by the lake, three boys and a fishing pole, I am struck by their body language, the ease and comfort of a hand on an arm, two heads dipped to the side to share a quiet word, three young boys standing shoulder to shoulder, their bodies overlapping in a way that is at once familiar and relaxed.

There was a time when I could not imagine the beauty of it. Could not picture my son walking away from me to follow his friends across a green meadow, chasing the wind and the rain and a giant turtle by the side of the lake. For the boy who missed nearly all his developmental milestones, didn’t walk until he was 16 months old, and could not tolerate noise or chaos of any kind, his fortitude is nothing short of a wonder to me. When I think about where we started, I am overwhelmed by how far we’ve come.

There was a point when I thought it would never be okay. When the tantrums and tears and the sleepless nights took away our smiles and our joy. At three years old, my son could not walk down a flight of stairs or attend preschool without a one-on-one aide. He wasn’t speaking in a coherent or understandable way and he spent his days frustrated and angry, lashing out at the world around him. The sound of a hair dryer or car alarm crippled him, a light hand on his shoulder led to screams of pain. He was off the charts sensory sensitive, unable to complete the simplest art project or play with other children. He lined up his toys and cried if anyone else moved them. We were lost and scared, and yes, I was completely in denial.

But he’s eight now. And I’ve turned my attention away from the past. I no longer fret about how or why things turned out this way. My son has autism. And it is what it is. I can’t go back and will a different outcome. I can’t conjure him a brain that makes the right connections 100 percent of the time any more than I can fly to the moon. So I’ve learned to more or less take it in stride, to trust my instincts and my judgment, to parent my son the only way I know how.

I’ve come to think of his actual diagnosis as nothing more than a formality. Like shaking hands on a deal that was decided long ago. I didn’t want to see it at first, but I know now it was always there. I wanted to believe well-meaning family and friends; the pediatrician who said my son was “a bit behind the curve, but still making progress”. I pushed my concerns aside, couched my worries. And told myself that all kids have mega-meltdowns.

By the time we had a workable diagnosis, my son was nearly four years old. We started then down the tried and true path of speech therapy, occupational therapy, physical therapy and social skills training. My son balanced Cheerios on his tongue and practiced waiting his turn. He did exercises to build muscle tone and learned how to hold a crayon. It was non-invasive, behaviorally driven and somehow, in ways I don’t even fully understand, exactly what he needed.

There was pressure early on to pursue other therapies. Things both proven and unproven. Family members would pull me aside to ask about his diet; whether or not he seemed "allergic" to wheat or milk. Many swore that adding this or that supplement could curb his behavior. Others talked about discipline, no doubt whispering to each other that my husband and I were too soft on our son. But none of these suggested remedies seemed wholly directed at what ailed him. ABA therapy felt too rigid for our family, the GFCF diet too unnecessary, and the skeptic in me steered clear of anything too risky or too expensive.

I started to do my own research. I read Dr. Stanley Greenspan’s book The Child with Special Needs and The Sensory Sensitive Child by Karen Smith and Karen Gouze. I understood things in a new way. I sought the counsel of my son’s OT, and worked with her to cobble together a little bit of this and a little bit of that, a behavioral approach that could help us remediate in a positive way. I began to see things through his eyes, to change my response to his behaviors and to follow his lead. I learned to trust my son and to listen to what his behavior was telling me. We slowed our family way down. And then when it felt like he could handle more, we ramped things up—looking for ways to raise the bar, to help him grow, stretch and narrow the developmental gaps. We inched our way forward through his toddler and kindergarten years, working in tandem with our school district and trusting in the experience of his therapists and teachers.

But it is never easy. For every two steps of progress, there are three steps of regression. The bulk of my son’s challenges fall under the larger umbrella of processing issues, self-regulation and motor planning. His standardized evaluation scores are just beginning to climb out of the single digits. When you look at who he is on paper, you very nearly can't believe the boy before your eyes.

Today my son is a quirky, exasperating, delightful, funny, interesting, charming, friendly, emotional, sensitive, awkward and sometimes extremely frustrated third grader with a diagnosis of PDD-NOS and sensory processing disorder. He still struggles with his ability to handle the unexpected, to cope with disappointment, and I continue to remind myself that delays are not permanent stops. We apply band-aids and tourniquets as needed -- continuing to tweak our behavioral strategies to meet the challenges of grade school and beyond.

When he wasn't reading, we found him a tutor and consulted a developmental optometrist. Because he couldn't tolerate the pace or competitiveness of our community-based sport programs, we enrolled him in a league for kids with special needs. And as he struggled to overcome emotional growing pains, we added a social worker to the mix.

What all this has taught me is that -- for us -- there is no ONE thing. No one strategy or approach or end-all plan to fix things. It’s a sliding scale. More of this, less of that and back again. It is an evolution in progress. One my son is even beginning to have a say in as he learns to accept and deal with the hand he’s been dealt.

There are days when I wonder -- worry -- about the future. Will he graduate high school? Go to college? Be able to live on his own? But I've set aside previous notions of success and found I'm happiest when I live in the moment, appreciating the forward motion, the hills and valleys, of my son's life.

There is no substitute for the lessons he learns when he is out there, taking part in his world. And I am grateful for the small group of friends who stand by him through thick and thin. 

On our last day in the Catskills, I ask the boys to pose for a final picture. My son's two friends -- brothers -- stand to his sides, their arms draped over his shoulders, his slung low behind their backs. The boys tilt their heads to the middle and the three of them look up and grin -- silly, toothy grins. I see them then, through the years -- young boys and the men they will become -- standing on the threshold of something.

I search my son's eyes as he looks into the camera. He is relaxed, completely at ease. Happy. There was a time when I could not imagine him in this moment.

And yet, there he is.


Photo © 2010 Kristen Spina