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Ask the Experts:
How to Talk to Others About Your Child’s Vision

How do families prepare for rude or unwelcome comments from strangers about their child’s vision? What if an out-of-town relative or acquaintance says something insensitive like, “What’s wrong with your child’s vision?”

 “I think this is a conversation we should be having with families more often,” says Paula Landry, an EI-TVI and founder of A Shared Vision. As teachers, “we spend so much time helping our families prepare for appointments and therapies, but many of the hardest moments happen unexpectedly and when parents have limited bandwidth because they’re busy tending to their child.”

Paula experienced this firsthand as a mother of her now 25-year-old daughter Maddie, who is blind. “People used to say all kinds of unbelievable things to me about Maddie. I call them ‘grocery store comments’ because that’s where they happen to me most often, but they also occurred at the park or the zoo, or during other outings. They always seemed to happen when I was least prepared, and the comment would catch me completely off guard,” said Paula. “The first few times it happened, I had no idea how to respond. As Maddie got older and was always listening, I realized I needed to model responses that she could use herself someday when I wasn’t there to speak for her.”

If taking your little one out in public is hard because of what people might say, you’re not alone. It happens more frequently than you would expect. Your EI-TVI can help you brainstorm ways to respond when those situations inevitably occur. There’s no right response. It just depends on how you feel, who made the comment, and where you are at that moment. Like Paula, many families have found it helpful to have a few pre-planned responses, so they feel prepared in those unexpected moments. You may also want to consider modeling appropriate responses that your child might use themselves someday.

We asked some of A Shared Vision’s teachers what they recommend

One strategy is to use the awkward moment as an opportunity to educate the person about your child’s disability. “One family I worked with printed business-card-sized cards that briefly explained their child’s diagnosis and included a website where people could learn more and make a donation to support vision research. Instead of feeling pressured to educate someone in the middle of an emotional moment, they would simply hand them a card and keep going,” remembers Paula.

“I had a mom who attached an ‘All About Me’ book to her child’s stroller,” adds Stephanie Crosen. An “All About Me” book is a snapshot, or “quick guide,” about your child which can include their name and other family members’ names, their likes, and dislikes, and how others should communicate with their child. Learn how to make an “All About Me” book HERE.

If a stranger asks an inappropriate question, use this situation as a teachable moment. “I usually recommend that parents be direct. Tell the person that their comment was hurtful and use it as a teachable moment by explaining in very basic terms that the child has low vision or can’t see,” says Janet Anderson.

On other occasions you might not feel ready for a conversation, or you know it won’t make any difference, so it’s OK to ignore their comments. “In some cases, it’s best not to engage and just walk away,” adds Janet.

If you don’t mind having a conversation, be open and honest. A little forgiveness helps, too. Often, people’s comments come from a place of ignorance. People will stare and act uncomfortable if they don’t understand what is different about your child. “When the parent has explained the vision loss and then gone on to talk about other things that the child likes to do, the other person is more comfortable with asking questions on how they can support you and they are more willing to interact with the child,” explains Sally Burch, who is also a Teacher of Students with Visual Impairments for Boulder County schools.

“Some of my families in our school district are reluctant to support the use of the cane for their child because it leads to stares and unwarranted conversations. When a child needs a long cane and their safety is at risk without it, the use of it must take precedence over the stares. When the child is old enough, they can learn to have their own explanation to people about their vision loss and how to communicate with others if they have needs or do not want help.”  According to Sally, the long cane can bring out the good in people, including helpful people at street crossings and discounts at coffee shops!

How parents react to rude, insensitive comments or unwelcome stares directed at their child ultimately depends on their confidence level. “Confidence helps a parent approach negative comments or answer questions that others in the community may have about their child’s disability or visual impairment,” shares Maggie Tutt. To help build this confidence, Maggie encourages her families to recognize and celebrate milestones, no matter how small. Whether a child is moving their fingers through a new texture, looking at their caregiver when they say their child’s name, or reaching for a new toy, “These milestones may not happen at the same time as other children their age, but every step they make is something to celebrate!” A little encouragement and pre-planning can go a long way to empower parents with the confidence to manage any situation.

Other Helpful Resources

• What to Do when Someone Says Mean Things about Your Special Needs Child: A Professional Counselor’s Advice for Parents
  
• Strategies for Responding to Rude Comments About Your Child’s Behavior
• How to handle reactions to your child with disability, autism or ADHD