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. CViConnect 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.

CViConnect is a new and exciting program that incorporates personalized education, training, and support for children with Cortical Visual Impairment. CViConnect includes an active community that offers hope and confidence. Using cutting-edge technology and a proven curriculum via an iPad app, CViConnect 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.