April 26, 2010
The Affair of the Necklace
I almost missed it, Justin’s carefully constructed art project sequestered away in the folds of his backpack, nestled among his library book, communicative device, and shoes he shunned earlier that day in school. When I noticed his creation I gently freed it from its constraints, and disentangled the lovely necklace my oldest child had made, I assume, in art class. On a whim I slung it over my head, and felt the weight of rotini, packing peanuts, and brightly colored squares bound in communion by a bright red lanyard soon resting lightly on my clavicles. I called my son’s name to remind him of our impending trip to the bathroom, and as he rounded the corner he glanced at me, kept moving, then stopped dead in his tracks. He saw the necklace, registered I was wearing it, and came bounding over to me. He gently fingered the purple, orange and yellow rhombuses so discreetly positioned on the yarn, looked into my eyes, and smiled. He didn’t require spoken language to convey his pleasure, his contentedness that his mommy admired his present enough to wear it. I hugged him tightly and thanked him for my gift, but words weren’t required to communicate my appreciation either.
We have many of these brief interchanges, our version of conversing, of connecting with one another. They are more frequent now, carry with them more depth in their meaning, more weight in the coveted glances with which he rewards me. Even six months ago I don’t believe he would have cared about my delight in noticing his necklace, nor would he perhaps have acknowledged I was even wearing it.
When my oldest child was first diagnosed with a major neurological disorder I read everything I could about autism, feeling if I could just understand its origins, perhaps I could banish it with my conviction, my relentlessness, my love. I recall learning that the disorder is thought to have several causes, some involving a disconnect between the slender neurons of the brain, some involving the inadequate pruning of the white matter so integral to brain function itself. I also remember reading many parents’ impassioned writing that autism is like an onion- that if enough undesirable layers are peeled away, we will eventually locate the veritable, healthy core of a child.
For Justin, I feel his autism is more reminiscent of this necklace; that his deficits and strengths are interwoven, irrevocably enmeshed with his true self. He stands in front of me admiring what he has made, and touches the components gently. His fingers first brush against cylindrical pasta pieces representing his synapses, then the porous styrofoam reminiscent of his potentially voluminous white matter, all separated, interrupted, by brightly colored squares. He touches the latter gingerly, and rotates them gently around my neck. I register each disconnect as it passes by; the perseveration, the impulsivity, the lack of spoken word, even the aggression it took so many years to control, that I worry still lurks somewhere in his psyche. I bear witness to them all, those hallmarks of my son’s autism, those uninvited, and permanent guests.
But I also pay homage to the thread, the strand of strings that woven together are much stronger than if they stood alone, the composite that permits my son’s offering to be a comprehensive whole rather than an assortment of paper, foam and food. His affectionate nature and loyalty, even his stubbornness, are bound together in our love for one another, in my relentless pursuit of his happiness. These elements weave together though all of the difficult times, the challenges autism will present to him, and to me, throughout his lifespan.
He ceases to spin my prize, finally content with its placement upon his mother’s shoulders. I am awarded one last glance, then he is off to other pursuits. I smile, and watch him go.