CVI Parents have three problems

CVI Parents have three problems
CVI Parents have three problems, photo by Patricia Harrington Simanek

My son was diagnosed with cortical visual impairment (CVI) as a newborn in 2011, before he came home from the children’s hospital neonatal intensive care unit. Like many kids who have CVI, he had a stroke. Or more specifically, hypoxic ischemic encephalopathy, HIE. His birth experience meant absorbing the diagnoses of infant stroke and CVI, as well as the unknown that goes along with that, because CVI is not a stand alone diagnosis. The doctors, neurologists, called it cortical blindness. This was a day or two after hearing the heart breaking words infant stroke for the first time, a phrase that is not comprehensible in the moment. Cortical blindness, the neurologist said. Because his impairment involves the brain, and not the eye itself, there is nothing you can do. Instead the doctor should have said, Because his visual impairment involves the brain – there is so much you can do. This should be the message to all parents whose child receives a diagnosis of CVI. Continue reading “CVI Parents have three problems”

CVI at home, bedtime

CVI at home, bedtime
CVI at home, bedtime

Every evening around seven thirty, our bedtime routine begins. As part of that routine, I put my son’s pajamas out on his bed. Getting ready for bed also still involves wearing a pull up. And every night I put the pull up out on the bed too – in a different spot each time. The pajamas are bigger, bolder in color, and stand out visually, they are easy for him to see. But the pastel colored pull up requires more effort. By putting the pull up in a different spot each night, my son needs to use his vision to locate the pull up against the pattern of the comforter. This approach can be used at home with so many familiar objects from our natural routines, in our natural environment.

My son is in Phase III CVI which means by now he is using his vision to perform most tasks (Roman). Some nights take longer than others, but he always finds the pull up. Each time I tell him, “Your pull up is on your bed…” And every night, my son will go over and look and say, “Mommy, you hid it!”

Star Wars and incidental learning

Star Wars and incidental learning
Star Wars and incidental learning

The last day of school before holiday break was pajama day. Pajamas can be hard for my son who has cortical visual impairment (CVI). When we talked about it, I made sure to suggest his Batman pajamas, to help motivate him to participate in the social experience of wearing pajamas with his friends at school. “Do you want to wear stripey pajamas – or Batman?!” “Batmaaan!!” he replied, excited. Continue reading “Star Wars and incidental learning”

Learning to smile

Learning to smile
Learning to smile

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”

Children with CVI and seizures

Too many of our children with cortical visual impairment (CVI) are also dealing with seizures. When CVI is associated with such conditions* as perinatal hypoxic-ischemic encephalopathy (HIE), perinatal stroke, infections of the central nervous system, or traumatic brain injury, so too there is often a history or risk of seizure. Like CVI, seizures look different from one child to the next. Some children experience seizures at birth, or have infrequent seizures, while others suffer from seizures that are nearly continuous and impossible to control. As the parent of a child who experienced stroke, I have done enough research and asked enough questions to know that the risk does not go away. Again, like CVI, it does not resolve (Roman). Continue reading “Children with CVI and seizures”