YOU GUYS! Y’ALL!
{insert whatever people yell to get everyone’s attention where you are from}!!!
I am SO EXCITED to share that BBC Scotland recently aired a 30-minute documentary on CVI called “Not In Plain Sight.” It is now available on Vimeo to viewers in any country!
We recently celebrated a big milestone in our daughter’s life: she has been surgery-free for an entire year!!! Because Rosalie has a brain condition called hydrocephalus, she had surgery to place a piece of hardware called a shunt (which manages the condition) at two days old. Unfortunately, shunts are notorious for having complications; 40% of shunts fail within a year, 50% fail within two years, and 80% fail within ten years. Rosalie’s first shunt developed an infection and her second malfunctioned. They say the “third time’s the charm,” and we are so happy that this 3rd shunt has lasted an entire YEAR without complications!
This 1-year “Shuntiversary” called for a celebration – but those of you that have children with Cortical Visual Impairment (CVI) know that parties come with some challenges.
I love (good) books. As a child, I was a huge bookworm. As a mother, I could seriously read to my children nearly all day long if they would let me! I think one of the most personally devastating parts of discovering our daughter’s Cortical Visual Impairment (CVI) diagnosis for me was the realization that reading books with her (and teaching her to read) will likely require a great deal of adaptation – and it simply will not be the same experience as I’ve had with her big brothers. Still, I am filled with hope because some children with CVI can become skilled readers – and even fall in love with literature.
In her (new!) book, Cortical Visual Impairment: Advanced Principles, Dr. Christine Roman-Lantzy writes:
“I now know that some children with CVI will achieve the prerequisites for reading and ultimately become competent readers, while others will follow a different path. But I cannot foresee ahead of time which individuals with CVI will read, so I believe that all children must be provided a path to literacy. Some will use symbol systems that are not word based. Others will learn a discrete set of words that can be used for short passages or functional reading. Still others will become skilled readers who will ultimately read fluently, with comprehension and pleasure…. So I encourage my colleagues to take the risk of believing that your students with CVI are capable of literacy no matter what form it ultimately takes….” (p. 37)
Personally, at this point in time I must choose to believe that Rosalie (my daughter with CVI) can and WILL achieve literacy. Right now she is only 16 months old, so we have a long way to go on a path to literacy – but she takes an interest in 2D images (a skill that typically emerges in Phase II CVI) and is at a great age in regards to neuroplasticity. This is a prime time to read picture books with her and focus on building her repertoire of “known” objects!
Everyday CVI 