5 steps to take after a CVI diagnosis

After your child is diagnosed with CVI, you should follow these five steps involving processing emotions, obtaining assessments and beginning intervention.

A girl being embraced by a heart, her mother and others

You were just told that your child has Cortical Visual Impairment/Cerebral Visual Impairment (CVI). You’re probably riding a rollercoaster of emotions, thinking about what it means for your child’s future. You might be filled with worry, confusion, anger, sadnessand maybe even a bit of relief now that you can put a name to what your child has been experiencing. New questions keep popping up in your mind: “What does this CVI diagnosis mean for my child?” and “What can I do to help my child?”

That’s natural, and you’re not alone. In fact, CVI is the leading cause of visual impairment in children in the United States. The good news is that it’s possible for your child’s vision to improve with intervention strategies. Educators, the medical community and countless parents who have firsthand experience with CVI can support you on this complex journey.

It helps to have a road map to get started. Here are five steps to take after your child has been diagnosed with CVI:

  1. Process the diagnosis. Being told that your child has CVI will definitely be emotional. Give yourself space to process your feelings. After all, this wasn’t what you expected. It’s completely normal to feel sad, frustrated, confused or upset. Remember: This is an ongoing process. You don’t need to have all the answers right away, and you’ll probably experience lots of emotions ranging from anger to sadness to hope. Yes, there’s plenty of reason for hope. Many children with CVI are able to enjoy improved vision with the right support, and we’re here to help you support your child. 
  2. Get CVI collaborative assessments. It’s so important to remember that each child experiences CVI in his or her own way. Your child’s intervention plan should be tailored to his or her unique needs, centered around the question: How can functional vision skills improve? Happily, kids with CVI can build new neural networks through adaptations and instruction, leading to better visual functioning. These key assessments can help:
    • CVI Comprehensive Evaluations: The comprehensive evaluation of the impact of CVI is conducted by a teacher with training in the unique visual behaviors of CVI. Perkins School for the Blind offers independent evaluations for families and school districts.
    • Ocular Functional Visual Assessment: An ocular functional visual assessment (FVA) looks at any possible eye conditions that might also be impacting a child with CVI. It evaluates how and what your child’s eyes see and what supports will create better access to the visual world. It’s conducted by a Teacher of the Visually Impaired (TVI), who specializes in evaluating kids with CVI. It targets the impact of ocular, not neurological, impairments.
    • Orientation & Mobility Evaluation: This evaluation assesses your child’s spatial awareness. It pinpoints how well your child can move safely without and with assistance, inside and outside. Orientation and mobility skills are part of the Expanded Core Curriculum for children with visual impairment. 
    • Therapy Evaluations: Kids with CVI can often benefit from occupational therapy (OT), physical therapy (PT), assistive technology evaluations and speech-language pathology evaluations. Therapists help these children develop, improve and maintain the skills needed for daily living and for school settings.
    • Clinical Ocular Testing: CVI is a brain-based impairment. Professionals will also need to examine your child’s visual health. An ophthalmologist can determine the health of your child’s eye overall. An optometrist looks at eye health and some aspects of visual function to determine the need for glasses.
  3. Start the process of accessible learning. Accessible learning considers the functional vision of the child and makes sure all learning is matched to those visual skills. This is visual accessibility and it also includes the child’s compensatory skills: hearing, touch, taste and smell across all facets of the child’s education. Once your child has been diagnosed with CVI, it’s important to begin educational programming matched to assessment. If he is currently receiving any services, be sure your child has a TVI on the team so that everyone working with your child knows about the CVI diagnosis and its implications. If assessments have been done, request re-assessments/evaluations to be completed through the lens of CVI, which impacts all development and learning for your child. Early intervention and assessment can help provide your child with access to visual learning and set the stage for improvements in visual attention and visual recognition. Get more information about forming an educational team and collaborating with them going forward  here. Learn more about intervention strategies with the Director of the Perkins CVI Project Ellen Mazel.
  4. Learn how to help your child at home. There’s plenty you can do to support your child at home, right away. After understanding your child’s CVI, many environmental adaptations and learning methods can be put in place right away. Many supports are simple and involve helping him or her focus visually: drawing shades, turning off lights, offering shiny objects in bright colors such as red or yellow, and choosing a particular light source to attract attention, like a flashlight. Strategies to capitalize on the child’s other senses are also valuable, such as narrating events or describing visual features of objects for your child. Check out our parenting section on CVI Now to learn more about how to support your child with CVI. An individualized assessment that focuses on your child’s specific needs will help you make just the right adaptations.
  5. Know you’re not alone. Your journey is completely unique but remember: Many parents just like you have experienced similar feelings. CVI is the leading cause of visual impairment in children in the United States. Research is constantly evolving, and there are lots of resources to guide you. The CVI community will help you develop advocacy skills, understand approaches to education and discover ways to guide your family’s journey.

Connect with moms, dads and families who have children with CVI. Visit our CVI Now Parent Facebook group.