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”
Originally published November 12, 2013
In the weeks leading up to our October appointment with Christine Roman-Lantzy, I debated going. Jasper’s developmental Renaissance, which began in early summer, was still going. Global improvements in communication, speech, feeding, auditory processing, and vision. Another new mom once said to me, “My baby changes so much every day, he’s constantly learning something new!” At the time, Jasper was about a year old, and doing Ok, but the words struck me. Changes so much… every day?? I had no idea what that meant. My experience was different from that of other new moms. Continue reading “Return to Wonderland”
For parents of children with special needs, including and especially CVI parents, summer affords a much needed respite from contending with schools and IEP teams. While we do not need to focus on those essential classroom adaptations and accommodations that are necessary at school, we can focus on ways to use vision during the day, every day, around the house in a natural environment. Continue reading “Cortical visual impairment at home”
Jasper is learning from the animals. He names and sorts fake plastic animals, each one carefully described the same way, every time. Giraffe – or G-raff – is tall with a loooong neck and brown spots. Cat has pointy ears, a long tail, and whiskers. Cow has spots, udders and a wide nose. At the zoo, lion, tiger, snow leopard, jaguar are all Cats. Wolf and arctic fox are related to Dog. (salient features, comparative language, categorize, Roman-Lantzy). What makes a dog a Dog. What makes a cat a Cat. Harder than you think it is. Continue reading “Jasper and the Animals”