Learn about CVI

IMG_6085Below are resources on cortical visual impairment (CVI), as well as neuroplasticity, the visual brain, and auditory processing disorder (APD), common in children who have CVI.

A Primer on Cortical Visual Impairment by Sharon Lehman, MD. We owe the parents of children with CVI a better explanation of their child’s condition. In the past, cortical visual impairment was called cortical “blindness,” with a perceived poor prognosis. Although some patients may not have any improvement, studies have shown that the majority of patients have at least some improvement in vision.9 It is important to communicate this fact to families when the diagnosis of cortical visual impairment is made.

American Foundation for the Blind – AFB’s information page on Cortical Visual Impairment, Traumatic Brain Injury, and Neurological Vision Loss.

American Printing House (APH) page on CVI – APH’s page on cortical visual impairment includes topics such as assessment, federal quota, Expanded Core Curriculum (ECC), Orientation & Mobility (O&M) and more.

As I See It – blog by Christine Roman-Lantzy. “This blog will provide me with the opportunity to write about topics that stir something in me. The subjects I select and the points of view will be my own. I will not be declaring truths but rather, writing about my thoughts and observations on a number of issues associated with CVI. I imagine I will be raising more questions than solving problems.”

Blind On Blind – Radio Perkins’ Possibility Radio, features CVI Teacher Ellen Mazel discussing cortical visual impairment (CVI), on their Blind On Blind podcast.

The Bridge School – excellent resource on CVI by The Bridge School. The website   “demonstrates how, and the extent to which our students with CVI and SSPI (severe speech and physical impairments) have improved in their use of functional vision, their communication skills, their independence, their engagement and learning, and academic performance within an educational program. This shift in The Bridge School’s approach to children with CVI and SSPI is making a meaningful difference in the children’s lives, their family’s lives and in the daily satisfaction our staff feels as a result of the dramatically improved outcomes of these children.” Check out the Interventions page for great information and planning docs for families and teams.

Cortical Visual Impairment: An Approach to Assessment and Intervention, 2nd Edition by Christine Roman-LantzyNewly revised, essential reading for everyone who works with a child who has CVI. This book provides educators, parents, physicians, and therapists with an understanding of the condition and a complete framework for assessment and intervention. This newly revised second edition brings the book up-to-date with new research and insights into CVI, its development and progression, and the best approaches to assessment and intervention with children affected by this condition. As in the previous edition, assessment forms, including the CVI Range and CVI Progress Chart, provide a comprehensive method for evaluating the functional vision status of, and program planning for, children with CVI.

Cortical Visual Impairment: Advanced Principles by Christine Roman-Lantzy – the long awaited companion book to CVI: An Approach to Assessment and Intervention. Advanced Principles builds on further study, knowledge and research since the publication of Dr Roman’s first book in 2007. The book is a collaboration among experts across disciplines, and dives deeper into topics such as Phase III CVI, social skills, orientation and mobility, literacy, students with CVI and multiple disabilities, augmentative and alternative communication (AAC), sensory complexity (“What’s the Complexity”) and dual sensory loss.

CVi Connect CVi Connect is an iPad application for use by families, educators, medical professionals and others in support of children with Cortical Visual Impairment. The CVi Connect app is based on the lifelong work of Dr. Christine Roman-Lantzy.

CVI for the TVI –  monthly online presentation on cortical visual impairment, hosted by Perkins School for the Blind, for providers who work with children who have CVI. In CVI, A Community of Ideas, TVI Matt Tietjen shares an integrated understanding of  ideas and perspectives from leaders and mentors within the field of CVI.

CVI Hub at Perkins School for the Blind – Perkins is at the forefront when it comes to providing education on cortical visual impairment. CVI Hub offers resources for parents, educators and school districts. Find information on continuing education, both online and on site courses, and webinars.

CVI Neuroplasticity Research Group – Cortical visual impairment (CVI) is the leading cause of permanent visual impairment in children in developed countries. Despite this significant public health concern, it remains poorly understood and more research is needed to fully understand how the developing brain reorganizes itself in response to early damage. The goal of this investigation is to establish a conceptual framework relating sensory function with structural brain reorganization to better understand the underlying developmental neurophysiology of individuals with CVI. They can also be found on Facebook.

CVI Resources – A professional in the field of visual impairment since 1973; specializing in cortical visual impairment (CVI). Christine Roman-Lantzy’s website is for families and professionals who have asked for a reliable method to contact her for information or support regarding children with visual impairment/CVI.

CVI Scotland – CVI Scotland is devoted to sharing and developing our understanding of CVI. Posts on behaviors such as CVI meltdowns, auditory processing disorders, and parent accounts, are especially helpful. It includes a blog by Dr Gordon Dutton. And a  blog by Nicola McDowell, an adult with CVI who shares what the sensory experience is like for a person who has CVI.

CVI Teacher blog – Ellen Mazel is a TVI who works with students with visual impairments, deafblindness and cortical visual impairment. Her CVI Teacher blog is one of the best resources around for anyone in the field of cortical visual impairment. She teaches Cortical Visual Impairment: Assessment and Education in the Vision Studies graduate program at the University of Massachusetts Boston. Ellen has studied CVI with Christine Roman-Lantzy for over 10 years.

Kaleidoscope: The Cortical Visual Impairment Podcast – CVI is the leading cause of pediatric visual impairment in the developed world. But there’s hope. Due to the brain’s neuroplasticity, a child’s vision can improve. So why isn’t anyone talking about this public health crisis? We will. Tune in for a monthly discussion.

Little Bear Sees – Little Bear Sees is a great starting point for families and others who are new to CVI.

Looking Inside the Adaptive Brain of the Blind – Dr Lotfi Merabet is the only researcher studying CVI. Here he discusses the neurophysiology and neuroplastic differences in people who have cortical visual impairment.

Massachusetts Eye and EarBlindness of the Brain: Explaining CVI article. The leading cause of vision loss at birth, cortical (cerebral) visual impairment (CVI) is blindness related to the brain – not the eyes.

My Journey with CVI – Blog by a young woman, Dagbjört, on her experience with cortical visual impairment (CVI). She was diagnosed with CVI when she was 24 years old.

Pediatric Cortical Visual Impairment Society – The mission of the PCVI Society is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury.

Perkins-Roman CVI Range© Endorsement – Members of your child’s educational team should be CVI Endorsed. CVI has become the leading cause of visual impairment in children in the U.S. and developed countries. Teachers of the Visually Impaired (TVI) and other vision specialists, receive very little, if any, formal training in CVI at the pre-service level. Perkins School for the Blind and Dr. Christine Roman believe every child with a visual impairment, including every child with CVI, should have a TVI on his/her IEP Team. We also believe that every child with CVI should have an IEP Team member with recognized and endorsed expertise specific to The CVI Range©.

Roman on CVI (YouTube) New! – Christine Roman-Lantzy delves deeper into the learning approach for children with CVI, the CVI Range. Dr Roman developed the CVI Range specifically for children with CVI as a means of assessing and addressing the impact of the 10 characteristics of CVI on the use of functional vision.

Salient Features Dictionary – created by Matt Tietjen with the help of the CVI Collaborative. Learning to identify the salient features of objects, places and people is critical for children who have CVI. A salient features dictionary helps ensure that everybody who works with that child uses the same, consistent language.

Statement on Cortical Visual Impairment – In August 2008, the American Printing House for the Blind (APH) brought together an advisory group to provide guidance and clarity on a range of issues related to cortical visual impairment (CVI), includes a working definition of CVI.

Team Approach to CVI (download from National Center on Deaf-Blindness) – created by Donna Shaman, an OT in Washington State, A Team Approach serves as a manual for school IEP teams working with students who have CVI.

This Type of Blindness Technically Isn’t an Eye Problem by Amy Whipple – a parent author describes cortical visual impairment. A must read for parents and providers of children with CVI. “The child sees what we see, but they can’t interpret it.”

Treasure Stop –  Special section of Western Pennsylvania School for Blind Children website, created by WPSBC educators and therapists to share ideas that put the “fun” in educational fundamentals for students with visual impairment. Includes idea on how to adapt and modify books and toys for children with cortical visual impairment (CVI).

West Virginia Department of Education – Christine Roman-Lantzy addresses a variety of topics around CVI including Early Intervention, Multi Disciplinary Teams, Strategies and Program Planning, and CVI and Social Development.

Western Pennsylvania School for Blind Childen – WPSBC’s informational page on CVI includes a CVI Assessments and Strategies brochure.

Neuroplasticity and the Visual Brain

Brain Plasticity: What Is It? – “Plasticity, or neuroplasticity, describes how experiences reorganize neural pathways in the brain. Long lasting functional changes in the brain occur when we learn new things or memorize new information. These changes in neural connections are what we call neuroplasticity.”

The Brain That Remade Itself – Doctors removed one-sixth of this child’s brain – and what was left did something incredible. “The fact that the brain has a malleable capacity to change itself isn’t new. What’s less understood is how exactly the brain does it. That’s where Behrmann’s study of Collins comes in. Her research question is twofold: To what extent can the remaining structures of Collins’ brain take over the functions of the part of his brain that was removed? And can science describe how the brain carries out these changes, all the way down to the cellular level?”

Cerebral versus Ocular Visual Impairment: The Impact on Developmental Neuroplasticity – “There has been a more recent and dramatic rise in the incidence of children born with profound visual impairment not fitting with the typical profile of ocular blindness or visual impairment related to acquired brain injury. In this situation, the term cortical/cerebral visual impairment (CVI) was coined to describe damage to visual pathways and structures occurring during early perinatal development.”

Vision research leads to new theories on brain plasticity (Project Prakash) – “What Sinha and his colleagues have discovered has turned earlier scientific notions on their head. For many years, researchers believed there was a developmental window for vision that closed at around six years of age. They thought anyone blind from birth would not be able to acquire much visual proficiency if they gained sight later in life. Sinha’s patients have forced a reconsideration of those theories.” Project Prakash research has revealed the brain has significant capacity to “catch up” in interpreting color and light signals to recognize objects, regardless of whether the window was dark during the early stages of development.

CVI and Auditory Processing

Children with cortical visual impairment (CVI) may also be at risk for auditory processing issues, below are resources on APD. You could say that APD is the CVI of hearing loss. CVI is not a problem with the eye, it is a problem with visual processing in the brain. APD is not a problem with the structures of the ear, it is a problem with auditory processing in the brain.

Beyond Controversies: The Science Behind Central Auditory Processing Disorder by Gail D. Chermak, PhD, Frank E. Musiek, PhD, and Jeffrey Weihing, PhD. “The most common behavioral characteristics of CAPD are difficulty understanding spoken language in competing message or noise backgrounds, in reverberant acoustic environments, or when rapidly presented; difficulty with similar sounding words; and difficulty following complex auditory directions/commands, among others.”

Cerebral Auditory Impairment information from CVI Scotland on auditory processing difficulties in children who have CVI. “My son’s reaction to sound and noise are completely inconsistent, and noise is a huge problem for us and a great cause of stress for my son. I tried to explain it to audiologists, but they didn’t understand that it wasn’t a sensitivity, or anything to do with volume or decibels, or certain types of sounds. It is completely inconsistent, he would go from not hearing something, like he was completely deaf, to having hearing so sensitive that he would go into a full CVI meltdown. He would seem to switch from deaf to hypersensitive within seconds, and the noises that were challenging were inconsistent too.”

Understanding Auditory Processing Disorders in Children by Teri James Bellis, PhD, CCC-A. A description of auditory processing disorders from the American Speech Language Hearing Association. “Children with APD may exhibit a variety of listening and related complaints. For example, they may have difficulty understanding speech in noisy environments, following directions, and discriminating (or telling the difference between) similar-sounding speech sounds. Sometimes they may behave as if a hearing loss is present, often asking for repetition or clarification. In school, children with APD may have difficulty with spelling, reading, and understanding information presented verbally in the classroom.”

41719-GkpmL._SX325_BO1,204,203,200_When the Brain Can’t Hear: Unraveling the Mystery of Auditory Processing Disorder by Teri James Bellis PhD. “The book was written for a multiplicity of professionals, and importantly, it’s for the parents of kids with APD or people with APD themselves. I talk about how APD looks in infants, children, and adults, how it’s diagnosed, and how we can treat it, using lots of case studies and including the latest clinical advances.” The book can be purchased on Amazon.