The end of school year field trip is coming up. That means the topic of the school bus comes up too. For children with special needs, the school bus can be complicated. At least in our school district, there are a host of problems. Late or missing school buses. Ill equipped buses. Not to mention the potential for problems when it comes to sending your child who is at risk for seizures, off on the bus. My son who has cortical visual impairment (CVI) no longer rides the bus to school. So when field trips come up, we talk about the bus. Nowadays, the only thing he likes about the school bus is preferred color yellow (CVI ten characteristics, Roman). Continue reading “CVI vs. the school bus”
“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””
Going to birthday parties is a childhood rite of passage. When you have a kid with cortical visual impairment (CVI), invitations bring a mix of anticipation and dread. Anticipation because you want your child to be included in the first place – just like all the other kids. And dread because celebrations, events, gatherings, parties are a delicate balance for kids with CVI. Birthday parties can involve some of the most challenging characteristics of cortical visual impairment – a party in a new environment (novelty), lots of kids (complexity, difficulty with faces, complexity of array), and energetic little bodies (latency, movement). Add the sounds of a bunch of excited kids and you have one Complex sensory environment. (Roman-Lantzy) Birthdays are a perfect storm for a CVI meltdown. Continue reading “Birthday party”
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 great 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”
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!”