Talking to Family and Friends About Your Child’s Blindness or Low Vision

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When Bob and Marcia discovered their infant son, Karl, was blind, they initially found themselves at a loss for words with their family and friends. However, as Thanksgiving neared, they recognized the need to share the news about three-month-old Karl’s blindness with Bob’s extended family, with whom they traditionally spent the holiday.

On Thanksgiving Day, after dinner, Bob, cradling Karl, bravely broke the silence. He shared the news of Karl’s blindness. The room fell quiet until Bob’s 7-year-old nephew offered a heartwarming response, “Well, that’s okay. I’ll hold his hand tighter when I take him outside and teach him to climb trees.” This moment of understanding and support from the family was a significant first step.

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, so, they’re not sure how to react to you or your child.

Guiding the Conversation

Your approach and attitude can significantly influence how others perceive and interact with your child. Here are some strategies to guide these conversations:

Provide Clear Information: Explain your child’s condition, including its name and how it affects their vision. Depending on your comfort level and the depth of your relationship, you might also share insights into raising a child with a visual impairment. Resources like the FamilyConnect website can be a helpful reference for them to learn more.
Set Expectations: Let people know how you wish your child to be treated. If you desire them to interact with your child as they would with any other child, make this clear. For instance, instruct them to verbally announce their actions, like picking up or hugging your child, beforehand.
Express Your Needs: If you’re seeking a listening ear rather than advice, or if you need practical help like babysitting, communicate this directly. People can’t read minds, so being explicit about your needs is crucial.
Clarify What You Don’t Need: If unsolicited advice or miracle stories are not what you’re looking for, don’t hesitate to make this known.
Manage Expectations About ‘Fixing’ the Problem: Some might assume that your child’s vision can be corrected with glasses or surgery. It’s important to explain that while their vision loss may not be ‘fixable’ in the traditional sense, your child can still learn to use their remaining vision and other senses effectively.

Maintaining a Positive Outlook

While it can be challenging, maintaining a positive attitude is beneficial for both you and your child. Focus on your child’s abilities and achievements, and encourage others to do the same. Sharing your child’s successes can help shift the focus from limitations to possibilities.