Introductory CVI Reading (For Parents or Professionals)

So, someone you know has received a diagnosis of Cortical Visual Impairment (CVI). Or perhaps you suspect a CVI diagnosis, despite medical and/or educational professionals refusing to put a name to the condition…. But what is CVI? And how can you learn about it?

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I wish I could say that the pediatric ophthalmologist sent me home with some medical literature to read through on the day she diagnosed my daughter with CVI. She didn’t.

I wish I could say I was given a pamphlet or card with a list of resources that would teach the basics of what I needed to know. But I wasn’t.

Unlike every other time my daughter has been given a new medical diagnosis, I was sent home empty-handed. No written medical information, no leaflets, no book or website recommendations. Nothing but a diagnosis – and instructions to wait for the state agency to call about setting up vision services once they received the doctor’s referral.

Parents new to the diagnosis often spend hours (and days, weeks, months…) researching CVI on their own. Despite the fact that CVI is the most common cause of visual impairment in children in developed countries and has been for nearly 20 years (or more), the struggle to get connected with information and resources is real.

I’m THRILLED that new(!) CVI resources are constantly popping up since my daughter’s diagnosis in 2018, but so much information to be found in varying places creates the challenge of figuring out where to begin.

Here is my personal list of where to start learning about CVI, written in the order I recommend reading! And please, keep in mind my official disclaimer: namely that I am a mother of a child with CVI – not a doctor, therapist, or CVI professional.

1. “What is Cortical Visual Impairment (CVI)?” (Little Bear Sees)

This page on the Little Bear Sees website provides a clear and concise introduction to CVI, explaining the 10 typical CVI characteristics, the 3 phases of CVI, and important information about reasonable expectations for IMPROVEMENT (yes, someone with CVI can and will improve their functional vision with appropriate interventions)! This is a great starting point for anyone new to CVI. Make sure to check out the rest of the website for some tips and ideas, additional CVI resources, and information about the Little Bear Sees book and iPad app.

2. “What is CVI?” (Start Seeing CVI)

This page on the Start Seeing CVI website provides another helpful introduction to this unique vision impairment. Make sure to check out the rest of the website for additional resources, CVI merchandise, a link to the Start Seeing CVI Advocacy Group, and a blog written by Brenda, Jasper’s mom (the creator of Start Seeing CVI).

3. A Primer on Cortical Visual Impairment by Sharon S. Lehman, MD

This article published on the Review of Ophthalmology website succinctly provides detailed information about CVI including: definition and characteristics, medical causes, pathophysiology, classification and prognosis, and the ophthalmologist’s role. A great read for parents, educators, and especially physicians.

4. Little Bear Sees: How Children with Cortical Visual Impairment Can Learn to See by Aubri Tallent, Andrei Tallent, & Fredy Bush

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After doing some research on the internet and reading a few websites and articles, I highly recommend going deeper with Little Bear Sees: How Children with Cortical Visual Impairment Can Learn to See. This book about CVI is written by parents for parents, but is a good read for anyone wanting to learn about CVI – doctors, therapists, educators, family, or friends.

Here’s a look at the Table of Contents:

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This book packs a good amount of scientific information, beginning educational strategies, and HOPE (including real stories from other parents) into 130 pages. Plus, an extra 10 pages provide resource lists of parent support groups, websites, newsletters and journals, special education rights, and more.

A paperback copy retails for $18 or you can get it as an eBook for about $8-10, making it the most affordable CVI book to start with.

5. Cortical Visual Impairment: An Approach to Assessment and Intervention, 2nd Edition by Christine Roman-Lantzy, PhD

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Dr. Christine Roman-Lantzy’s book offers an in-depth understanding of CVI and a complete framework for assessment and intervention. It is a must-read for educators, therapists, physicians, and parents of children with CVI. Because it is a textbook, I recommend reading small sections at a time and taking breaks.

Here’s a look at the Table of Contents:

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I’ll be honest and say that I tend to skim the tables and charts designed for professionals learning to perform the CVI Range Assessment. As a parent I feel the need to have a solid understanding of the CVI Range, but I do not need to know how to administer and score it at this time.

This is a book that can be read in increments and re-visited whenever a refresher is needed. Personally, I re-read sections (especially Chapters 3 and 5) whenever it’s time for my daughter to be reassessed on the CVI Range. This helps me mentally prepare for the parent interview portion, so I can watch my daughter extra closely in the weeks leading up to it and provide the most accurate responses possible.

6. Strategy to See, 4th Edition by Diane Sheline, M.A.Ed., TVI, CLVT

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This book by Diane Sheline is written for parents, caretakers, teachers of the visually impaired, orientation and mobility instructors, therapists, and other educators. Stories are shared about students with CVI from birth to age 22. Other topics of discussion include neuroplasticity, the importance of early intervention, specific strategies, and the development of IEP goals and objectives.

Here’s a look at the Table of Contents:

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This is a book that does not need to be read all at once. Because it provides varying levels of strategies for students in different phases of CVI, I recommend reading only what is relevant to a child’s current situation in order to not become overwhelmed.

7. Cortical Visual Impairment: Advanced Principles by Christine Roman-Lantzy, PhD

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Dr. Christine Roman-Lantzy’s newest book (published in January 2019!) is an extension of her previous CVI book (listed above). It builds on the foundation of CVI assessments and interventions and takes a more in-depth look at the broader needs of individuals with CVI beyond improving functional vision – such as complex communication needs, literacy, social development, orientation and mobility, and more.

Here’s a look at the Table of Contents:

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Ultimately, the information found in this book is invaluable for anyone caring for or teaching a child with CVI. But, I think it’s worth saying that if you are BRAND-NEW to CVI and have a very young child in Phase I this textbook can be read later. There is so much information to process and it’s okay to seek out further knowledge when it becomes relevant.

I recommend CVI parents and professionals read this book when: you are actively working on orientation and mobility, social skills, or literacy, you are dealing with auditory problems in conjunction with CVI, and/or the individual with CVI is approaching (or already in) Phase III.

A child with CVI can and will improve given the appropriate interventions, so even if you’re not ready to read ALL the CVI literature I recommend taking immediate action in 2 ways:
  1. Begin implementing appropriate CVI strategies throughout the individual’s day. I began by thinking about every place my daughter spent any time (i.e. the crib, diaper changing table, playing on the floor, sitting in the high chair/car seat/stroller, in the bath, etc.). I made one adaptation to each place and gradually added more, which you can read more about here. You can also create a “CVI Schedule,” breaking your day into segments of time and focusing on doing at least one vision-related task during each part of the day. Do not wait to start until you have had a CVI Range performed! You can read the explanations of the 3 Phases of CVI and make your best educated guess until a professional can confirm it. 
  2. Seek out a Perkins-Roman Endorsee that can perform the CVI Range Assessment. These endorsed professionals (you can search by geographic location!) have proven they are qualified to assess individuals with CVI with accuracy; an individual’s Range Score determines what strategies and interventions are appropriate. Interventions that are too easy or too challenging will hinder progress. The CVI Range can be administered on individuals 9 months old and up.

What have you read that makes a great introduction to CVI? Leave it in the comments for others to find below!

Note: This list is not comprehensive. It is as a starting point, providing a foundation to begin implementing appropriate CVI strategies as soon as possible. Want more reading? Check out my “CVI Resources” tab here at Everyday CVI.

 

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