FamilyConnect

When Bob and Marcia learned that their infant son, Karl, was blind, they were too stunned to talk about it with family or friends. But as Thanksgiving approached, they realized that they couldn’t keep the news about three-month-old Karl’s blindness to themselves any longer. They were spending the holiday, as they always did, with Bob’s large family and wanted the family to know but couldn’t imagine how to tell them.

On Thanksgiving Day, when dinner was over, Bob decided that this was the time to finally do it. Holding his son, he told everyone about learning that Karl was blind. There was silence in the room, and then his 7-year-old nephew spoke up, “Well, that’s okay. I’ll hold his hand tighter when I take him outside and teach him to climb trees.” In a moment, other family members chimed in with their support.

Not everyone is going to react as supportively as Bob and Marcia’s family did. Each person who learns about your baby’s visual impairment may respond differently. Some people will say just what you need to hear at the time, but others will miss the mark and say something that may upset you. They may tell you that it was meant to be, that you’ve been “chosen,” or that they’re sorry for this “tragedy.”

Whether you’re talking with family, friends, or complete strangers, there will be times when you’ll be uncomfortable, confused, or angry at people’s reactions. You may get advice or questions you don’t want, hear stories about other people with disabilities, and receive empathetic pats on the back. Try to remember that most people have little or no experience with vision loss, and so, they’re not sure how to react to you or your child.

Your Child, Your Message

Most people will follow your example of how to treat your child and the topic of his eye condition, so think about the message you want to give them about your baby.

• Give the facts: Tell people the name of your baby’s eye condition and how it affects how they see. Depending on your relationship and how much information you want to share, you can also tell them what you’ve learned about raising a child who has a visual impairment. You might want to share the FamilyConnect website address with them so that they learn more about the eye condition.
• Let people know what you want from them. Tell them what your baby needs. If you want them to treat your child the same as they treat other children their age, tell them. If you want them to understand how to interact with a child with blindness or low vision, ask them to talk to your your child and explain what they’re doing. For example, they need to let your child know that they’re going to pick them up or try to hug them before they do so.
• Share what you need: If you want a friend to just listen, tell the person you’re not asking for advice, just a sympathetic ear. If you want some time to yourself to work through difficult feelings, let family and friends know that having them watch your kids for an occasional afternoon would be a big help. No one is a mind reader, so it’s important to communicate clearly about what you and your baby need.
• Share what you don’t need: If you don’t need advice or don’t want to hear stories about medical miracles that happened to other families, let others know.

Some people may think that when you tell them about your baby’s blindness or low vision, you’re asking them to help fix the problem. Explain that your baby’s vision loss probably can’t be “fixed” with eyeglasses or surgery. But your baby can learn to use whatever vision they have, plus other senses, and become just about anything they want to be.

Though it may be difficult at times to maintain, a positive attitude can help make life better for you and your baby. Don’t focus on what your child can’t do; instead, concentrate on what you child can do. You can help others do the same by sharing your baby’s successes with them.