What To Do After a CVI Diagnosis

Has your child just been diagnosed with cortical visual impairment (CVI)? You may be experiencing a wide range of emotions. This can be a very confusing and frustrating situation for you. You are not alone, as many parents have received a similar diagnosis. Note that there are many options and resources available to you. Here are 5 important things to do after your child has been diagnosed with CVI.

1. Breathe

Everything is going to be okay.

With a consistent and structured program, CVI can significantly improve over time. In a select group of children with CVI who had highly motivated parents, 97% went from Phase I to Phase III in an average of 3.7 years, according to a study conducted by Dr. Roman-Lantzy.

More personally, know that there is a vibrant and supportive community available to you. You are not the only one going through this – far from it, in fact. CVI is the current leading cause of visual impairment among children. Other parents and family have previously been in your position and are happy to answer any questions you may have. There is a particularly active group within Facebook. CVi Connect previously published an article about the top 8 CVI Facebook pages to follow. Within these pages, you can see questions, comments, stories, and supportive ideas from other families that are going through the journey you have just begun.

2. Learn As Much As You Can About CVI

It is important to take the time needed to understand what this diagnosis means. Learn about the various intervention programs and methodologies available to you. Read about what your child may be experiencing in order to better understand how intervention works. It will take time and patience, but you will be better served in the end.

Although CVI is still under-studied, there are a lot of quality books and professional publications to learn from. A book we recommend is Cortical Visual Impairment: An Approach to Assessment and Intervention by Christine Roman-Lantzy. Dr. Roman-Lantzy provides readers with both a conceptual framework with which to understand working with CVI and concrete strategies to apply directly in their work.

There are numerous resources available online as well. Our article about the top 5 CVI resources you may not know about outlines a handful of great online resources you can turn to for general information, intervention ideas, and community support.

3. Find a Vision Specialist

A vision specialist that practices CVI intervention can be an invaluable resource. Regularly scheduled visits with a professional can help to answer questions, provide important information, continue education, and define intervention ideas. One can be found through your school system, your local government programs, or this page put together by Perkins School for the Blind.

4. Have Your Child Evaluated

Evaluation is the first step in beginning to treat your child. This will help to determine where he or she falls in the CVI spectrum. Different children have varying degrees of CVI and, with that, varying levels of sight. The evaluation will determine the current abilities of your child and how you can proceed. There are several ways to have your child evaluated, most of which are outlined by the American Printing House for the Blind.

The diagnostic test that is most often used is the CVI Range Score. The CVI Range Score allows for the vision of your child to be measured in a consistent and reliable way. It has been carefully studied and found to be a stable instrument to determine the functional level of vision of your child. It is used to determine the degree of effect of CVI on a zero to ten scale. Professionals can then use that number (CVI Range Score) to design an intervention program.

5. Begin an Intervention Program

Intervention in this context means beginning the process and working with a CVI specialist on activities for your child. After meeting with your vision specialist and having your child evaluated, you will be in a great position to lay the groundwork for your intervention program. Depending on the level of vision of your child, you will begin to schedule various visual activities to exercise the neural pathway between your child’s eyes and brain. Here are a couple of tips to keep in mind during these exercises:

  • You should incorporate opportunities to use vision into your child’s everyday life. Color and motion will be important for his or her visual development. For example, you might use a red bowl or plate for each meal.
  • In order to maximize your child’s ability to use vision, it is important to provide spaces that are free of distractions and visual clutter.

CVi Connect is a new and exciting program that incorporates personalized education, training, and support for children with Cortical Visual Impairment. CVi Connect includes an active community that offers hope and confidence. Using cutting-edge technology and a proven curriculum via an iPad app, CVi Connect helps to improve the eyesight of children with cortical visual impairment.

A cortical visual impairment diagnosis can bring about trying and confusing times. But know that you are going to be just fine. As with many other diagnoses, CVI can be improved with patience, time, and effort. With these five tips, you will be well on your way to that improvement for your child.

Tools for CVI Assessment – American Printing House for the Blind

A CVI assessment is generally “step one” in discovering the current sight abilities of your child. The assessment then molds the teaching program and techniques that will help to improve his/her vision.

There are several different methods to go about completing such an assessment. The American Printing House for the Blind provides assessment tools and guidelines for a number of assessment techniques, including those from Dr. Gordon Dutton, Dr. Amanda Lueck, Dr. Mary T. Morse, Dr. Jan van Dijk, and CVi Connect’s lead advisor Dr. Christine Roman-Lantzy. It is on Dr. Roman-Lantzy’s assessment guidelines and instruction that CVi Connect has built our program. Here are some helpful tips and guidelines from American Printing House for the Blind for your information when having your child assessed for a CVI range score.

American Printing House for the Blind does an excellent job of laying out Guidelines for Observation and Guidelines for Interview Questions. These methods will be used by a CVI professional to determine the abilities and limitations of your child. Knowing this information beforehand and reading the interview questions is a great preparatory exercise to ensure you get the most accurate assessment possible.

This will undoubtedly be a confusing and possibly frustrating time for you and your child. There are several things you can do, as laid out by APH, in order to ease and accommodate the child, as well as provide the most accurate assessment.

  • Be understanding when the child’s behavior is a reaction to frustration or fear and misunderstanding of the environment
  • Avoid conversations when child is using their vision to travel safely
  • Family, teachers, friends should verbally identify themselves when meeting the child
  • Faces are very complex. Do not expect a child to be able to look at you and hear what you are saying at the same time. Do not take lack of eye contact personally

With excellent tips, products, and general information, American Printing House for the Blind is a great resource for working with your CVI child. Be sure to review their entire section on cortical visual impairment. If you would like to receive information on CVI, subscribe to our newsletter.

Meet APH: American Printing House for the Blind

When navigating life with a challenge like blindness, it is comforting to know there are organizations that provide valuable resources that can help. American Printing House For The Blind (APH) is one such organization, providing resources and support to sight-impaired individuals.

For over 150 years, APH has proudly served the blind and visually impaired community by creating educational and functionalAmerican Printing House for the Blind living products for those that suffer from visual impairment. It is now the largest non-profit organization in the world that serves this community.

Tracing its roots back to 1858, APH was founded when it first saw a need to assist blind students. After the opening of the first schools for blind children in the 1830’s, it was clear that teachers had precious few books and educational resources. Funds were raised and locations discussed. Finally, in 1858, the General Assembly of Kentucky passed an Act to establish The American Printing House For The Blind. In 1860, a press was purchased, and, after disruption by the Civil War, the first book was produced by APH in 1866.

Since then, APH has worked tirelessly to provide products to the blind and visually impaired community. In 1879, under the Federal Act to Promote the Education of the Blind, APH became the official supplier of educational materials for visually impaired students. The funding for this Act benefitting blind and visually impaired students continues today through the Federal Quota Program. Funds from each state are used to purchase educational materials for blind and visually impaired students.

As both a 501(c)(3) nonprofit and a manufacturing company, American Printing House for the Blind serves a unique and important public role, but is also able to manufacture and offer incredible products to the individual consumer. Browsing their shop shows an array of:

  • Braille textbooks, magazines, custom braille
  • Large print textbooks, custom large print
  • Talking Books on a contract basis
  • Accessible tests
  • Educational kits, tools, and supplies
  • Talking software and hardware
  • Independent living products such as talking color identifiers

APH and CVI

American Printing House for the Blind is a leading resource for the Cortical Visual Impairment community. APH understands the importance of education for CVI.

“Those working with children diagnosed (and many who remain undiagnosed)  with CVI understand that the more we learn about this neurological visual impairment the more complicated the conversation becomes.”

To this end, they have numerous educational resources and posts on their website http://tech.aph.org/cvi/.

Dr. Christine Roman-Lantzy notes that CVI “is the leading cause of visual impairment in children today”.  At CVi Connect, we are happy to see the commitment from APH to the CVI community. Please visit http://www.aph.org/ to see their vast educational resources and products that support the blind and visually impaired community.

The Top 8 CVI Facebook Pages You Should be Following

For families and friends that know someone with Cortical Visual Impairment, CVI Facebook pages can be an invaluable resource. There are many companies and support groups that have created pages on which they share important information. Pages can range from simple DIY ideas for your child with CVI, to educational and instructional resources to treat the condition.

Here are 7 great CVI pages to follow and why we think they are helpful.

– CVI Neuroplasticity Research Group

The CVI Neuroplasticity Research Group is a page focused on neuroplasticity research for CVI. Follow them for great technical explanations of CVI, research, upcoming seminars, and informational webinars as they work to better understand the science of CVI.

– Start Seeing CVI

The Start Seeing CVI Facebook page is designed to educate and shed light on Cortical Visual Impairment. As the leading cause of visual impairment in children in the U.S., they are raising awareness with a great page of new treatment ideas, fun DIY tips, interesting research articles, and conference and e-learning registrations.

– Little Bear Sees

This is the Facebook page for the Little Bear Sees organization, a non-profit organization that was created to share all kinds of information on CVI education and treatment. They have developed several resources that help children afflicted with Cortical Visual Impairment. Their Facebook page is a great place for inspiration, product updates, news, articles, and tips.

– CVi Connect

CVi Connect has a new iPad application that follows Dr. Christine Roman-Lantzy’s approach and interventions by presenting customized activities for all CVI phases, collecting visual data using the iPad camera, and interpreting that data to continue a customized learning plan for children with CVI. The Facebook page for this new application offers quality CVI educational articles, innovative treatment ideas, inspirational discussion, and general updates about CVI.

– American Printing House for the Blind

The American Printing House for the Blind (APH) has been an advocate for the blind and visually impaired since 1858. In fact, APH is the world’s largest nonprofit organization creating educational and independent living products for people who are blind and visually impaired. APH provides specialized materials, products, and services needed for education and life, including valuable CVI related products and information.

– CVI phase III Community

CVI Phase III Community is a page dedicated to learning specifically about Phase III of the CVI Range. They reach out to parents, families, educators, and professionals to further the understanding and commitment to Cortical Visual Impairment. Their page is frequently updated with new aids, tips, and education pieces for children with CVI.

– Cortical Visual Impairment (CVI) Awareness

Cortical Visual Impairment (CVI) Awareness is a closed group that you have to request to join. Once accepted, you will find a terrific resource for families, friends, and educators to learn more about CVI. The page enables sharing information on products, DIY ideas, educational opportunities, as well as inspirational support.

– Thinking Outside the Lightbox

Thinking Outside the Lightbox is a Facebook page created as a place to share ideas and ask questions about CVI. It is a good forum for new parents that have just discovered their child has CVI, as well as parents and families that have already been working with a child with CVI. They are a great resource for ideas about vision therapy, toys and aids for CVI children. Additionally, they offer a place for general discussion.

There are always new and exciting pages and resources for CVI appearing on Facebook. As we work to discover advances and education on the science and treatment behind CVI, we encourage you to stay up to date on our blog by signing up for our newsletter.

Top 5 CVI Resources You May Not Know About

There is a wealth of information on the internet providing education, instruction, and direction on how to help your child with Cortical Visual Impairment. With so many different options, it may be difficult to narrow down a few specific resources to consistently follow for the best information. Here is a list of 5 of the top CVI-related resources that you might not know about:

– West Virginia Department of Education: Cortical Visual Impairment

The West Virginia Department of Education has an excellent Special Education section that outlines their curriculum as well as a wealth of instructional resources. In particular, their Special Topic section on Cortical Visual Impairment provides outstanding direction and instruction on CVI through a series of videos made by Christine Roman-Lantzy, Ph.D.

– CVi Connect

CVi Connect is a combination of technology, data, and community that strives to improve the vision of children with CVI. CVi Connect developed a smart technology, iPad-based app that, using the camera technology in the iPad, tracks visual queues in the child’s eyes as various images and animations are presented. This data is collected and translated into a personal program directed by teachers of the visually impaired at LifeScience Technologies. The entire program is modeled and developed by the work of Dr. Christine Roman-Lantzy, a leader in furthering understanding, assessment, and intervention strategies for Cortical Visual Impairment.

– CVI Teacher

CVI Teacher is a blog created and run by a teacher of students with Cortical Visual Impairment. The teacher works for the Concord Area Special Education Collaborative. CVI Teacher is an excellent combination of educational posts, interesting videos, CVI news, and great DIY ideas.

– Perkins School for the Blind

Perkins School for the Blind is an organization, operated by proven experts, that has dedicated its efforts to the lives of blind and deafblind people all over the world. Their institution offers a quality section on Cortical Visual Impairment that includes webinars and inspirational and educational articles.

– Family Connect

FamilyConnect is a website and community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). It offers a place of support for families with visually impaired children that includes a community to discuss CVI related issues, share stories about their families and treatment ideas, and contribute CVI-related resources.

As the fastest growing visual impairment diagnosed today, Cortical Visual Impairment treatment is constantly making new strides. Make sure to subscribe for updates to the CVi Connect blog for the newest and most important items in educational information, instruction, and new developments on everything CVI related.