I am a skeptic. I do my own research. I do not accept no. I question authority. Obstacles intrigue, problems without obvious solutions excite me. I figure things out, after others shrug. I get to yes. I trust my gut.

    
During toddlerhood, my son Sean began to act odd, his developmental mile markers slipping by unmet. He smiled at sad times, laughed while crying. He jerked his curly head instead of pointing, parroted back each word I said-- in singsong. Sean lined up his toys in neat rows, observed the tiny spring on the underside of his toy fire truck for hours, and gave syntactically perfect oral reports on the truck’s pumping capacity. The pediatrician dismissed my inquiries: I was a nervous mother, he said. Oh, really?

I spent that afternoon’s nap on the computer, scrolling possibilities. Autism. Pervasive Developmental Delay. Sensory Integration Dysfunction. Asperger’s Syndrome, Central Auditory Processing Delay, Echolalia, Neurological Impairment. I made a plan: 1. Find and interview experts. 2. Seek out other parents with relevant experience. 3. Attend conferences. 4. Research the latest studies.

Then I put my head down and screamed.

Still deep into a tentative recovery from a severe bout of postpartum depression, and     pregnant again, I was in a wildly altered landscape. I no longer trusted my instincts, did not have the emotional strength to question anyone. I had spent most of the time since my son’s birth in an emotional fugue, and now that the haze was clearing, I wanted only clear signs, straightforward directives. I was handling motherhood much better now, but my hold was tenuous. I put the list away after the first appointment with the pediatric neurologist and simply did as I was told, seeing experts on referral, signing Sean up for all the recommended therapy.

Meanwhile, I found my own therapist (the other kind), and slowly, slowly, returned to myself. A year went by, two. Maybe, I began to hope, instead of inhabiting a place where I questioned my fitness for motherhood -- where every mothering decision was fraught with fear, anxiety and outsized helplessness -- maybe I could do this motherhood thing after all.

Along the way, I tried on my old skin. The books on developmental issues piled up on my bedside table. My printer belched out articles, medical and behavioral studies, reports on alternative approaches, lists of practitioners, successful but controversial new methods. I found a parent support group and grilled everyone, hungry for input. How were we doing? Would he be OK, eventually? What did you do?

Soon, I was spouting philosophies, obsessively checking message boards, reading until my eyes hurt. I filled my calendar with conferences, support groups, programs and phone calls to other parents. I was re-awakened, caught in a flurry of activity; all meant to pinpoint the exact titrate of experts, therapy methods and approaches that would transform my child. Now that I was better, I would fix my son. The answer was out there, I just had to find it. I was back in form. Brandishing my new knowledge and emboldened with a rediscovered sense of urgency, I reconfigured the slate of therapists, added at-home programs, extra sessions, a touted nutritional plan.

Sean and I, and my second son Paul, defined our days by therapy -- physical therapy, occupational, speech, vision, oral, listening. Sean was the model of compliance: smiley with his therapists, tried to perform every movement or exercise exactly, never asked why or complained.

“What’s today Mommy?” Sean asked each morning. Were we headed to Allison for rides on the giant swing (proprioceptive skills and vestibular stimulation), to Megan for games with straws and birthday candles (oral motor skills), to Laura for the pennies-in-clay game (fine motor)? Or was it Thursday, when we saw Dr. C. to play with the red-and-green eyeglasses (focal convergence)? Could we do our home exercises after watching Little Bear? Is today Social Skills Play Group or was that yesterday?

While Sean was on the other side of a closed door, I entertained Paul in waiting rooms. My husband Frank did at-home reinforcement exercises, sometimes lasting from dinner until Sean’s bedtime. My son was improving, but I began to worry that he was walking backward on balance beams and reading eye charts when he should have been playing T-ball in the driveway.

Then one morning, while I was packing up the diaper bag with enough snacks and toys to keep Paul occupied in yet another waiting room, and stuffing the checkbook into my purse to pay the monthly therapy bill that would leave us with $32, Sean shrieked. He was standing next to the kitchen counter, wildly slapping his slim hands back and forth against the beige Formica and kicking the dishwasher.

“I hate my hands. Why don’t my hands work Mommy? What’s wrong with them?” The tears rolled, his nose was running.

 

“I hate them. They never do what I want them to. Mommy, fix them!”

A simple puzzle was scattered across the wood floor. His hands keep thudding against the hard edge of the countertop and Sean was crying loud now, heaving and clutching at his breath, his thin shoulders quaking.

“There’s nothing wrong. You just need more practice, that’s all,” I said, evenly.

“No! There’s something wrong with them. They’re broken!” he insisted.

“They’re not broken; you just need more therapy to get stronger.”

“They’re broken. FIX THEM!” Sean was screaming now.

I looked at my little boy, demanding answers, wanting mom to make everything okay. I almost said, you just have to keep going to therapy, we have all the best therapists around, we’re plugged into the finest, most progressive programs going, I found all the right people, I’m reading all the right books, it will all work out.

Then it hit me: It might not all work out. Even with everything I had done, all the probing and re-jiggering of his therapy programs, I still could not fix anything. His developmental difficulties were his, not mine, and might not ever recede completely.

I slid down to the kitchen floor, lifted my sobbing son into my lap, took his skinny hands, now reddened, into mine, and began a conversation we are still having today. “You have something called…”

All the books, experts, doctors, and therapists would continue to occupy an outsized place in our lives; my son would thrive, exceed their expectations, and mine. But on the sticky kitchen floor the day Sean smacked his hands against the counter hard enough to knock aside my efficient and falsely confident self, I realized, with a clarity still vivid a decade later, who is the real expert in my child’s life.