CVI vs. the school bus

CVI vs. the school bus
CVI vs. the school bus

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”

Birthday party

Birthday party
Birthday party

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”

CVI for first graders

CVI for first graders
CVI for first graders

When it comes to talking about cortical visual impairment (CVI) in the school setting, the topic of social skills is always a focus. Because as parents, the thing we want most for our kids with CVI is for them to make friends. We want our child to be accepted and understood. Whether talking to teachers or therapists or others who are hearing “CVI” for the first time, social skills are at the top of the list. Continue reading “CVI for first graders”

“Thank you for making me cry at an IEP meeting”

Stay goldThese were the words of my son’s kindergarten teacher on our last field trip of the year. Earlier that week we had yet another IEP meeting, to hash out his vision goals, at my insistence. Partway through the meeting, it seemed appropriate to stop and acknowledge the final stretch of the school year, and my son’s progress at the end of kindergarten. Continue reading ““Thank you for making me cry at an IEP meeting””

Friend

Robin
Friend

On our way home from afternoon preschool, we stop at the playground. This has become our habit on these warm spring days. We were not there long before Jasper made a friend, Robin, or rather, she befriended him. “Let’s go slide together, Jasper!” she said, taking his hand,  pulling him along, not aware that she was leading him. Robin called to Jasper “Come swing with me!” and Jasper followed the pink blur of her shape, running behind her, both of them laughing. Continue reading “Friend”