How to talk to family and friends about CVI

Here’s how to navigate tricky conversations, well-meaning comments and unwanted advice.

Lola, a little girl with CVI, wearing a tshirt that says "Change the World"

Chances are, family and friends have questions about your child’s Cortical Visual Impairment/Cerebral Visual Impairment (CVI) diagnosis—just as you did at the beginning. They want to be helpful and supportive, but some people might not know how to include your child or how to show interest. At the same time, you might get tired of answering questions, or you might feel defensive when outsiders offer well-meaning advice. You could be in for a few awkward conversations, frustrating explanations or unwanted comments. We’ve been there, too, and it does get better.

 

How to start a conversation about CVI

  1. First and foremost, stress the concept that your child has a visual impairment. CVI is a unique diagnosis. It’s a complex brain-based visual impairment. Children with CVI are neurodiverse—which means that their brains work differently—without access to the visual world. 
  2. Describe CVI and your child’s unique vision. Throughout your life, you will be the one to teach others about your child and CVI. As a CVI parent, you naturally become part of the awareness effort. Here are a few examples ways to explain CVI:
    • To adults: “CVI is a brain-based visual impairment, and it’s the leading cause of visual impairment in kids. Most of us think that we only see with our eyes, but we really process the visual world with our brain. CVI is caused by an injury or an interruption to the visual system in the brain. Our visual system is the largest sensory system in our brain. My child has immense difficulty recognizing objects, places and people, and overall has a hard time making the visual world meaningful.” From here talk about what your child is able to see, their strengths and compensatory skills. 
    • To kids: Engaging a child in the complexities of your child’s unique vision is a challenge, but an important one. Try this: “Faye has a hard time seeing. She needs her cane because she’s not able to see anything from her eyes down to the ground. But she uses a lot of other clues to help get around, like touching and listening. We see with both our eyes and our brains. Faye’s brain has a hard time figuring out what’s around her. Her brain has a hard time making sense of new places, people, toys and other things.” 
  3. Arm yourself with facts. Family and friends might be genuinely curious about how, say, CVI differs from ocular impairments. Have a few straightforward explanations about CVI ready to offer up and websites to visit (like this one!) for more learning. 
  4. Offer concrete ways for others to help. People want to support you! If friends or family are wondering how they can participate in your child’s care, share specific needs: Ask grandma to buy a set of spoons in a favorite color, ask a friend to buy a particular book on your wish list or request help with errands or childcare for a sibling.
  5. Share your child’s motivations and interests. Novelty is tough for many kids with CVI. You know all of your child’s favorites: toys, activities, places, and topics of conversation. And you know how much easier it is to connect with your child when she’s doing what she loves. Share this with family and friends, especially those who may not know how to interact with your child. Have a playdate on a favorite playground or describe to grandma and grandpa how to engage with a particular toy.
  6. Remind your loved ones to include your child. Sometimes, people might genuinely want to make special accommodations for your child, such as not inviting her to a birthday party because she might get overwhelmed or speaking loudly, close-up so that she can focus. As appropriate, ask loved ones to treat your child as they would anyone else. Explain that if your child needs specific provisions, you’ll let them know in advance. It helps to model the interactions with your child that you would like others to adopt, such as narration: “Jimmy, that sound is the garbage truck, picking up the trash. Let’s go get a closer look!”
  7. Stress what your child is good at. For example, “Jimmy has such good hearing; he always knows who’s in the room!” or “Jimmy does such a good job memorizing where things are in the house.” Children are more than their difficulties; they’re masters of developing skills to handle how they operate in the world.
  8. Share important life moments. Include friends and family in birthday parties, educational triumphs or new developmental milestones and inchstones, just as you would for a child without CVI.

Most of all, connect to other families with CVI. Get involved in advocacy groups, if time permits. Empower yourself however possible. The CVI community is a wonderful resource, and you’re not alone.

 

 

“Your CVI journey will be unique to you and your child. Find others who are on a similar journey who can embrace the journey, encourage you, and lift you up. The support from the special needs community will give you light and support to know you are not alone.” —Lacey Smith, CVI parent

 

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