As parents of children who have cortical visual impairment (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, pride, and love that it is written on a parent’s face.
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”→
Thinking about visual access in terms of the arts can feel overwhelming. How can a child who has cortical visual impairment (CVI) possibly have access to and enjoyment of, an arts experience? On a recent outing to our local children’s theatre, it hit home how visual access makes a world difference for a child who has CVI. Continue reading “Access makes a world of difference”→
Recently I had yet another conversation with a distraught parent from another state, who was upset that her child who has cortical visual impairment (CVI) was not being included in the story/circle time at preschool. “He doesn’t need to see the pictures,” the parent was told.Continue reading ““Fire is so loud””→
The original t-shirt design, pictured at right, and on our Facebook page, can be ordered in kids sizes here. This design and the terms used to describe the ten characteristics reflected the then current language used around CVI, and comes from Cortical Visual Impairment: An Approach to Assessment and Intervention by Christine Roman-Lantzy. The t-shirt idea, along with the name, Start Seeing CVI, was born out of a parent’s frustration from dealing with providers who had never heard of CVI, and the constant explanation of both my son, and his vision disability. This happened by the time he transitioned from birth to three services to the public school system. The t-shirt was made as he began preschool, with a new team that either did not know CVI at all, or did not know nearly enough. His new IEP team strongly recommended instruction in Braille, and this CVI mom declined. And I sent my son to school wearing his Start Seeing CVI t-shirt.
Start Seeing CVI. So that early childhood educators, occupational therapists, ophthalmologists, optometrists, orientation & mobility specialists, pediatricians, physical therapists, special educators, speech language pathologists, and teachers of the visually impaired can Start Seeing Cortical Visual Impairment.
Start Seeing CVI 