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

This content is also available in: Español (Spanish)

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.

Understanding Your Emotions

• Acknowledge Your Feelings: Recognize that each parent responds differently to their child’s eye condition. Avoid comparing your reactions to others and understand that feelings of depression, anger, or distress are normal.
• Take Care of Yourself: Prioritize your well-being by maintaining a healthy diet, getting sufficient sleep, relaxing, and engaging in activities you enjoy. Good health is essential for supporting your family and child.

Building a Support Network

• Stay Connected: Seek emotional support from friends, family, or support groups. Sharing your experiences can provide relief and help you cope.
• Find a Good Listener: Talk to someone who listens without judgment. An empathetic ear can be invaluable as you process your feelings.

Adjusting to the Diagnosis

• Give Yourself Time: Adjusting to your child’s blindness or low vision is an ongoing process. Allow yourself and your family time to absorb the situation and plan for your child’s future.
• Connect with Other Families: Engage with families who have similar experiences. They can offer valuable insights, resources, and emotional support.

Educating Yourself and Others

• Work with Professionals: Consult specialists in blindness or low vision to understand your child’s condition and explore available resources.
• Learn About the Condition: Educate yourself through early intervention teachers, medical professionals, libraries, and reputable online resources. Ask your child’s doctor any questions you have.

Organizing and Planning

• Maintain Records: Keep organized files of your child’s medical reports, educational plans, and correspondence with professionals. This organization will be invaluable for future reference.
• Understand Legal Rights: Familiarize yourself with laws like the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA) to ensure your child receives necessary services.

Focusing on Positivity

• Celebrate Your Child: Remember, your child is more than their disability. Enjoy their unique personality, nurture them, and provide love and attention to support their development.

Frequently Asked Questions