Stay ConnectedCortical visual impairment (CVI) is the leading cause of pediatric visual impairment in the developed world. The eyes can see, but the brain can’t interpret the visual world. Due to neuroplasticity, the functional vision of a child with CVI can improve. The number of children with CVI is growing, so why isn’t anyone talking about this public health crisis? We are.
Music by Storm Crews. Art by Ian Kleinfeld.
I’m reflecting on 2018. For me, this has been the Year of the CVI Advocate. My life has been transformed by my interactions with fellow CVI parent advocates – online, at conferences and through this podcast.
From Start Seeing CVI Advocacy on Facebook to Boston for the CVI Symposium to Omaha for the American Conference on Pediatric Visual Impairment back to Boston for CVI Family Vacation – and even from my closet here in Raleigh – I’ve interacted with some pretty amazing humans who have made this journey start to feel meaningful.
I also had a unique opportunity to take a leave of absence from work this summer to concentrate on my daughter Grace, which may be something I’ll share more about later…
To sum it up, it’s been a stellar – and at times upsetting – year.
We parent advocates have found some strength and cohesion. This is good.
So, what next?
Well, let me share what I’ve learned this year.
Bottom line: this is a sprawling issue.
We all know there is a lack of general awareness and that CVI is complex – our kids have a wide spectrum of issues (related to and not related their visual abilities).
This makes parent advocacy more important than ever. And I’ve heard from vision professionals that they are pleased to see us strengthen our ranks, but….
We are too much.
Too angry.
Too combative.
Too passionate.
They say our advocacy is misguided and there’s potential that we’ll drive away experienced professionals.
Sigh.
Yet, if you ask, most people think we should be treated as equal partners on our child’s team. Sounds contradictory to me, but I think I can rationalize it. Professionals often feel at a loss when it comes to helping our children. They want to help, but no one was taught how to identify CVI and intervene. I would feel defensive – and do sometimes as a parent – if I was supposed to have the answers and didn’t.
Doctors and educators need continuing education and mentorship from those in the know. CVI courses are not a dedicated part of their preparation programs, one of the primary problems in my humble opinion.
Our medical system is letting down families. Medical experts recognize this. It can be hard to get a diagnosis. And if you do, it can take up to a year to get a follow-up appointment with a specialist. On top that, there is not a standardized set of tools for diagnosis and evaluation. The ICD-10 codes are misrepresentative – you know this if your child was diagnosed with the outdated term “cortical blindness.” Just another hurdle to getting a proper diagnosis.
Truly problematic: We aren’t screening infants who are likely to have CVI. You know, preemies, kids with a history of a neurological event, etc. Scary but true, kids are being misdiagnosed with Autism Spectrum Disorder. We are missing kids.
Then we look at the world of education. University programs are failing to adequately prepare vision educators to meet the specialized needs of students with CVI. Only one program, U Mass Boston, requires students to take a course on CVI. But how much of these programs is dedicated to preparing educators to teach braille? What vision educators are learning does not match the population of children they do or will serve. On top of that, we have a TVI shortage and, in some states, loosy goosy standards for what makes a TVI in the first place.
What’s largely in the way of solving these problems? Well, we are quite preoccupied with questioning assessment tools like the CVI Range, leaving us little time to make progress on other topics. While some are questioning it, many parents know the value of the CVI Range – how it helps us characterize our children’s needs and intervene appropriately. By the way, there is a replication study on the reliability and validity of the CVI Range in the works.
If we use the CVI Range with our kids, does that mean that other assessment
Sisters Anna Ault and Lori Kinney are raising daughters with visual impairments. One has cortical visual impairment, the other an ocular visual impairment. We discuss their parallel but unique experiences advocating for CVI and Leber’s congenital amaurosis.
They are raising their kids in the same community – their childhood community, in fact. Their girls are close in age and attend the same public-school system. But as Anna and Lori compare their experiences, it becomes evident that there are fundamental differences between a brain-based visual impairment and an eye-based one.
In this episode:
Resources we mentioned:
Pediatric Cortical Visual Impairment Society (PCVI Society)
The American Conference on Pediatric Cortical Visual Impairment
2018 CVI Symposium hosted by Perkins School for the Blind
Opera performance student Dagbjört Andrésdóttir gives us a glimpse into her life with cortical visual impairment, describing music and strong parental support as her saving grace.
“I kind of knew always there was something, but I wasn’t sure if it was my vision or something else,” says Dagbjört.
Three years ago, with the help of her mother, she concluded that CVI was the culprit.
To parents she says, “You know your children better than anybody – any physician, any teacher, any person in the world…if you have a hunch there’s some problems, follow it. Don’t give up on it.”
In this episode:
Krish (6) received an early CVI diagnosis and guidance from a teacher of the visually impaired who knew how to intervene appropriately, based on his CVI Range score. With neuroplasticity and dedicated parents on his side, he’s heading to kindergarten with improved functional vision and a CVI-rich IEP.
In this episode:
Partners on the Journey: A TVI and Family’s CVI Experience from Birth to Age 3
When Alisha Waugh and her husband learned that their son Griffen (10) has a cortical visual impairment (CVI), they committed to improving his functional vision above all else – and with stellar results.
Alisha puts her Perkins-Roman CVI Range Endorsement to work each and every day for Griffen. She is also serving other kids with CVI and their families through her consultancy Fundamentals First.
In this episode:
Henry (5) has a new cortical visual impairment (CVI) diagnosis. His mom, Rachel, now understands why he is so frustrated. He can't interpret what he sees. Relying on the 10 characteristics of CVI, they infuse vision into everything they do. His vision has improved, and his whole being has too.
Not only has Rachel fully embraced the educational approach based on the research of Dr. Christine Roman, she and a group of other CVI moms are building a collective national movement to advocate for kids with CVI so that every child has the chance to progress.
In this episode:
Grace (6) reads sight words, enjoys hearing chapter books and shows an affinity for math. Yet she can’t interpret illustrations in a children’s book or recognize the faces of her mother and father. Her parents on the struggles and joys of raising a child with cortical visual impairment.
In this episode:
Pediatric Cortical Visual Impairment Society
Cortical Visual Impairment: An Approach to Assessment and Intervention
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