“Literacy begins when they look.” These were the words with which Christine Roman-Lantzy began her pre-conference session last fall at Northeast AER in Vermont. These words are important because parents of children who have cortical visual impairment (CVI) need to know that when we talk about literacy, we are not only talking about kids who are in Phase III CVI (Roman). When we talk about CVI literacy, we are talking about all kids who have cortical visual impairment. Continue reading ““Literacy begins when they look””
In spring 2012 I was trying to predict when Jasper might walk. He was an expert crawler and speed crawler – also called victory crawl, we learned at therapy. He could pull to stand and cruise somewhat but walking was unpredictable. Jasper would turn eighteen months old in August, and that was about my best estimate. With summer on the horizon, I dreamt of walking on the beach with Jasper, holding his small hand in mine, our footsteps making trails together in the wet sand.
As parents of children who have CVI, every day we experience their difficulty with the visual complexity of the human face (complexity, distance, latency, movement; Roman). Our kids struggle to look at our faces, to make eye contact with us, to read our facial expressions. They struggle to visually recognize us as their parents. Cortical visual impairment means they miss facial expressions such as boredom, confusion, frustration, sadness, worry. CVI means they also miss seeing the happiness, joy, love and pride that it is written on a parent’s face.
What follows is the story of Emma, who learned to smile with her mom, Lynn. Continue reading “Learning to smile”
Preparing for our trip to Pittsburgh was more emotional than anticipated. Not the routine gathering and packing of things, but sifting through medical reports to provide background on my son’s experience coming into this world. Early on I assembled a binder divided into sections – hospitals, early intervention clinics, along with a dozen others – for collecting the medical and therapy reports that would accumulate in time. Jasper is nearly two years old. His baby book remains incomplete, lines left blank for milestones he did not reach on time, empty squares where photos should be. Instead the priority is managing this medical book, rearranging, expanding, updating. Consulting the book is emotional. Gathering those early reports is particularly difficult. Remembering, reliving. Reading about my newborn son in cold medical jargon is a harsh reminder of how difficult our beginning was.
Amblyopia. Exotropia. Hemianopsia. Nystagmus. Strabismus. Homonymous bilateral field defects. Cortical visual impairment. All are words that describe Jasper’s vision disability. Add to that cognitive, communication, developmental, feeding, fine motor delays, and seizures. Twelve words to describe Jasper’s vision. Simple, right? Continue reading “What Jasper Sees”