Please check out the latest parent blog: CVI Momifesto at
The subtext of the blog is “Building a Community of Parents of Children with CVI”
Historically, it is the work of parents, organizing and advocating that causes changes in the service to children. I think of the work of parents of children with autism as they organized and advocated for better research, better identification, better funding and more paid services for their children. The parents of children affected with RETT syndrome and related disorders are another wonderful model group for parent advocacy. They came together to advocate for awareness of RETT syndrome, RETT research and funding and they created assessment centers all over the country to serve their children.
Parents with children affected by CVI need to do the same. They need to come together with one voice that will bring the topic of CVI to the forefront. I monitor many Facebook pages that parents have created. They share heartbreaking stories of navigating the misinformation from medical professionals and educators as they seek the best services for their child.
The information about CVI is now decades old and building everyday. Why does it fall on the shoulders of parents with the least free time to organize this effort to help medical professionals and educator understand CVI and how CVI affects learning? Professionals who understand CVI are out there but they are not sitting at your child’s IEP. That is where the advocacy must begin.
As parents and professionals who understand CVI, let’s begin to build the documented evidence for the IEP process that fosters the diagnosis of CVI. Let’s make sure the students are assessed using the correct tools that consider the known brain based visual issues of CVI. Let’s make sure there is not “vision time” but consideration of visual needs around the day and across the curriculum.
Check out Rebecca’s blog!
Hey Rebecca, This is Eva Elmer in Savannah, GA. Good timing on this post! I just connected with a local organization, Savannah Center for Blind Low Vision and asked them if they would like to host a parent group I am starting, The Savannah CVI Parent Workshop. We have two meetings on the calendar with topics for parents on how to help their child. I am also working through our local early intervention program to get their people trained up at Perkins. There is soooo much interest and need for support among the professional community and local blind/low vision organizations!!
Thank you for the shoutout, Ellen! And, as always, thank you for your insight into the challenges facing families of children with CVI as they navigate their local school system. As you said, the kids can’t wait. It is going to be up to us to create a community loud enough to demand the necessary changes in how our early intervention programs and school systems assess and teach children with CVI.
Sad but true that the advocacy is all on you as parents with everything else you are doing!
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