Photo by Amy Corbett Storch
"You realize he's not like most babies. He's absolutely extraordinary."
I don't remember what specifically prompted my pediatrician to say this to me. Whatever it was, it likely seemed perfectly normal to me as a first-time mother. But our doctor always seemed extra-interested in Noah, veering off the milestone charts and asking other questions about his personality and development, then laughing and shaking his head in amazement at my completely honest answers. Yes, he really does sit and look at books for that long. Yes, he really sleeps that much and through that much noise. No, he rarely cries. Yes, he laughs when music plays and always goes that bonkers over colored patterns on the wall.
Our well-baby visits always lasted well over an hour, as the doctor liked to try experiments like holding a book upside down to see if three-month-old Noah would notice.
At our 12-month-visit, the doctor told me to give Noah a little more time to pick up on gestures like pointing and waving. At our 18-month visit, he told me to come back in three months if Noah didn't start talking more.
Noah was 21 months old when his doctor frowned and furrowed his brow while watching Noah toddle around the exam room, while I rattled off our short list of almost-words and sounds.
"Does he always walk up on his tip-toes like that?" he asked me.
That one visit catapulted us into the world of Early Intervention, speech therapy, occupational therapy and special education. We've done social skills groups and parents' groups and Lunch Bunch and too many evaluations to count. We've been told "he's fine now" by our county's infants and toddlers programs and been threatened with expulsion from preschool less than six months later. We've danced on the edge of a PDD-NOS diagnosis before settling in the strange, squishy land of Sensory Processing Disorder (SPD), specifically developmental dyspraxia, hypotonia, oral hypersensitivity and expressive language delays. We agonize over birthday parties, rigid thinking, peer interaction, and academic skills. We have an Individualized Education Plan (IED) and send Noah to the school district's preschool program. We will spend close to $30,000 this year on therapy, private school and specialized summer camps.
As soon as Noah acquired enough language, he asked for music. "Yellow song," he'd say, pointing at our stereo. I tried to guess songs about the color yellow or things that are yellow. Rubber Duckie? Bananaphone? "No, no, no," he'd say. I tried songs from the kid's TV network, thinking that perhaps he was picturing the yellow background from a music video. It turned out to be a Jack Johnson song from the Curious George soundtrack. I assumed Noah had seen the yellow CD case at some point and made the connection.
But then songs became blue and green and red and purple. Sounds that hurt his ears were gray. Our Christmas tree and the scratchy welcome mat by our front door were spicy. His favorite toys were "like sugar."
So now we've added synesthesia to the long list of things that color and shape the way our boy sees and interacts with the world. The long list of things that make him "special."
And they are some of the very things that make him absolutely extraordinary, just like we've always known he is.