The very first time a doctor intimated that my son might have cerebral palsy, he was a month old and I was standing in the hallway just outside his room in the NICU. It was disorienting to have someone allude to his future self when I was simply trying to get him through this particular day.
I tried to find my bearings by asking the first question that came to mind when I thought of cerebral palsy: “But will he walk?”
The doctor’s response: “You should be more concerned with if he will talk.”
How was I to know that cerebral palsy also involves speech and vision and hearing and the entire gamut of cognitive and bodily functions? How is anybody to know that while standing in the fluorescent glow of the intensive care? But now that my son, Charlie, is six and we are veterans of the special needs universe, I know a good many things about my son who is in a wheelchair and mostly nonverbal.
I know that being unable to speak is not the same as being unable to understand. I know that expression comes in many forms including sign language, speaking devices, facial expressions and his particular favorite, vigorous gesturing. And I know the joy of watching my son learn to read.
To be perfectly clear, I know the joy of discovering that my son already knew how to read.
The mystery unraveled itself after one trip to the parent-teacher store. I am always in search of the things that will draw out Charlie’s innate gifts — the things that will shine a crack of light into his inner world. I had an inkling, by the way he flipped the pages on the children’s books that line the lower half of all our bookshelves, that he might be picking up some of the words.
But how do you know? How do you really know if your child can’t read the words back to you? How could I know it wasn’t just the texture of the pages for his sensory-seeking self or the sight of the pictures that kept him going? I couldn’t. So, I ferreted out some word flashcards from the parent-teachers store. They were black and white and absent of pictures. I wanted to eliminate all clues.
And then we began. I laid out three cards in front of him —“cat,” “blue,” bus.” He looked from the cards to me to the cards again.
And I said: “Charlie, where’s the bus?” His hand shot out and there it was — bus. He waved it like a winning lotto ticket.
Maybe it was beginners luck? We tried again and again and only after we had sifted through all one hundred cards did I let myself believe the truth. He could really and truly read.
I cried then in joy over the discovery of something that he did all on his own. This was not like physical therapy or feeding therapy that we would have to muscle through in painful increments. This, for once, was a path he laid and then followed all by himself — the path to literacy.
Reading is a milestone moment for all parents. We love to see the tiny universes in each book open up for our children just as they did for us. And it was the same for me. It didn’t matter that he couldn’t read it out loud. He was reading to himself and his world and mine were richer for it.
Berenstain Bears, Little Critters, Blueberries for Sal, Clifford, Llama Llama, Goodnight Moon, Where the Wild Things Are, Corduroy — we hit them all. For better or worse, I am the child of a librarian and I will fill his world with books.
His love of reading and his skill in reading has been our meeting place of late. We read in the park. We download book apps on his iPad. We are frequent flyers at the library. We trade books with friends and we lie together on the couch, him with Curious George and me with whatever I picked off my nightstand.
Sometimes I only pretend to read and instead watch him over the top of my book as his eyes scan the page. This plot, the one where my son reads in a way I never knew was possible, is much more interesting than whatever I’ve got in my hands.