|Carrying the Hope - Page 2|
At Brian's 24-month visit, I expressed clear concern. He hated being around other children, he was self-injurious when frustrated (biting himself and sticking his fingers down his throat), his hearing was painfully sensitive, and he was crazy-good at math (at that point he could identify any three-digit number, and he was beginning to add). I didn't consciously know what to call this, but the combination frightened me. The doctor simply told me that he was a math genius and that I needed to become a better disciplinarian. "Everyone has quirks," she said breezily.
There's a Name for It
After another week of comparing my son to similarly situated children and feeling with every comparison that something just wasn't right, I called my pediatrician again. She told me that she'd actually been thinking about Brian, too, and that we ought to seek an occupational therapy evaluation to rule out a sensory integration disorder. I'd never heard of this disorder, and it didn't appear anywhere in my DSM-IV, but we went ahead with the evaluation at a local clinic.
The occupational therapist decided that Brian suffered from "auditory hypersensitivity, low muscle tone, motor planning delays, and vestibular and proprioceptive hyposensitivity [low responsiveness]." The vestibular system, located in the inner ear, controls head and body movement, balance, and posture, and influences other sensory systems. The proprioceptive system refers information from the joints, muscles, tendons, and ligaments, telling you where your body is located in space. According to the occupational therapist, Brian attempted to make up for his underresponsive vestibular system by seeking out swinging, jumping, and sliding, but would become overwhelmed by the stimulation and then get upset. He attempted to compensate for his underresponsive proprioceptive system by seeking intense experiences of physical contact—squeezing or being squeezed, jumping, crashing, and pushing (usually other kids!). In short, there were multiple ways in which his sensory system was skewed, resulting in anxiety and behavior problems. The recommendation was for occupational therapy for two hours a week at the clinic. We were sad and a bit confused, but we started the therapy as instructed.
Still seeking more information, I reached out to a colleague, a psychologist who specializes in working with children, and she recommended that we seek a full neuropsychological evaluation to check on "all of Brian's lines of development." So we headed to a neuropsychologist at a well-known clinic, specializing in neurobehavioral problems. On the way home from the first session, which included some assessment of Brian and some interviewing of me, I began to panic as I replayed her questions in my mind: Does Brian have language anomalies, like reversing his pronouns? Does Brian use gestures like nodding and shaking his head? Does Brian spontaneously direct your attention in order to show interest? I knew that I was answering nearly all of her questions "the wrong way," indicating a less-on-track rather than more-on-track child. I got home and opened my DSM to the chapter I feared the most, the chapter on Pervasive Disorders of Childhood. I called my husband sobbing, "This neuropsychologist thinks it's autism. Holy shit, she thinks it's autism!"
Indeed, six days after the birth of our second child, Courtney, we were told that Brian met the criteria for a "provisional diagnosis of PDD-NOS." Reality sunk in only slowly over days and weeks. I hear this frequently from parents of children like Brian. The mind and the soul can't take in all of the meanings, feelings, and unknowns at once—it's too disorienting.
Those early postdiagnosis months are an existential mess for all parents, and they tormented me. As we started to tell family and friends, no reaction was the right reaction. I remember my mom's cheerful voice telling me, "He's fine! He's more than fine. The only problem Brian has is that he's too smart for his own good!" But we'd just been told that he wasn't fine, and her reaction hurt me—it felt like an invalidation of the struggles we were up against. By contrast, I remember my stepmother's heavy voice telling me, "My heart is breaking for you. I'm just so sorry for you." Her reaction hurt me, too. Her heart shouldn't be broken, I thought—this wasn't a death sentence. We'll get him what he needs to catch up, I told myself stoutly, and he'll be "indistinguishable from his peers" by kindergarten (the oft-repeated goal of early intervention).
True, Brian was still the same boy he'd been before the diagnosis, and I resisted looking at him differently. Yet, he also wasn't the same boy. He was now a boy who couldn't and shouldn't be expected to do what other children do. I could feel the ways in which the diagnosis, the label, was becoming a lens through which I experienced him. Autism was beginning to infiltrate everything.
We'd always laughed about how Brian's transitional objects were never stuffed animals or baby blankets. Related to his deep and abiding love of numbers, his favorite form of comfort always came in the form of an "8"—an 8 of clubs from a deck of cards was the best, but sometimes a magnetic refrigerator 8 or even a hair elastic twisted in half could do the trick. Indulging the love of 8s was now tantamount to reinforcing the autism, but not allowing him to seek comfort with an 8 felt cruel. I was stuck. The 8 of clubs now seemed symptomatic of the autism because one of the DSM criteria relates to "restricted interests," for example being "highly attached to some inanimate object."