Let’s change the way we talk about kids with CVI

Let's change the way we talk about kids with CVI
Let’s change the way we talk about kids with CVI

“He’s just so…UNIQUE.”

“I’m not sure we would have the expertise needed to assess her.”

“He almost sounds like… a case study.”

“He sounds too complex to be evaluated.”

Some days our kids with cortical visual impairment (CVI) really put the special in the term “special needs.”¬†Lately, in yet another quest to find a provider to conduct an appropriate assessment, it is back to this all too familiar language when it comes to talking about our children with CVI. Continue reading “Let’s change the way we talk about kids with CVI”

Quote from a CVI parent

On the Start Seeing CVI Facebook page you can find many graphics. But this one is too good and too important not to share via this blog. The quote comes from Rachel Bennett, a CVI mom. You may have seen Rachel’s blog posts on Paths to Literacy. She perfectly captures the reality for parents of children with cortical visual impairment (CVI). Continue reading “Quote from a CVI parent”

Seeing CVI at school

Seeing CVI at school
Seeing CVI at school

Yesterday was a Monday, from start to finish. You know everything is going to be ¬†extra challenging when you drop off your child with cortical visual impairment (CVI) at school and learn that his paraprofessional is out that day. We all have our emergencies, and it was her turn. Children with CVI rely on predictability and routine, especially when it comes to their people. A day of multiple transitions is not an easy prospect. It turned out that the unexpected day provided an unexpected opportunity for his teacher to see my son’s CVI. Continue reading “Seeing CVI at school”

“Cortical Visual Impairment: Advanced Principles”

Cortical Visual Impairment: An Approach to Assessment and Intervention
Cortical Visual Impairment: An Approach to Assessment and Intervention

In 2012, reading Cortical Visual Impairment: An Approach to Assessment and Intervention for the first time, was not about reading about a complex neurological condition. As the parent of a child with cortical visual impairment (CVI), reading that book, was reading about my son. It was somebody describing my child to me. Everything that he did, all of his behaviors, came into focus and made sense. Ever since, I have continued to learn as much as possible about my son’s cortical visual impairment. Continue reading ““Cortical Visual Impairment: Advanced Principles””

This is how we live.

CVI: This is how we live.
CVI: This is how we live.

When you are raising a child with cortical visual impairment (CVI), life looks different. It not only looks different for your child, it looks different for parents. CVI accommodations do not end on Friday afternoon when the school bell rings. For CVI families, accommodations happen all the time, everywhere, all day long, all the way up to and including bedtime. The accommodation follows the child with CVI…everywhere. Even on the weekend. Continue reading “This is how we live.”