If Your Teenager Has Recently Experienced Blindness or Low Vision

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Every day of parenting has its highs and lows. That’s no different when your child has a blindness or low vision. However, if your child has recently been diagnosed as blind or low vision, you, your child, and your other family members may find yourselves struggling with a multitude of new, conflicting feelings—among them anger, sadness, grief, frustration, embarrassment, confusion, and fear.

There are several eye conditions that young people may be diagnosed with during their teenage years. These include retinitis pigmentosa (RP), Stargardt’s, and Best’s disease, to name a few. Or, your child may have been involved in an accident and, as a result, is now blind or low vision. Regardless of the cause, this has been an emotional time for your child, you, and the rest of your family. The information on this website is intended to try to help you and your family during this transitional time. You may also find some of the information on this site for families with younger children helpful as well.

Emotions and Encouragement

Here are just a few things to consider:

• Your feelings and concerns about your child’s eye condition are unique to you. Most parents of children who are blind or low vision experience many feelings in common. Yourchild will wrestle with their own feelings about their vision and others in your family will be having feelings and concerns as well. Work to keep communicating with each other; you may find some relief and comfort in talking about your child’s blindness or low vision and the uncertainty you may be feeling about the future.
• Recognize that grieving for your child’s lost vision is normal. Feelings of anger, depression, and denial are part of the grieving process. Daily events may sometimes unexpectedly spiral you back into grief. For example, you may grieve on the day your child would have earned their driver’s license along with other teen milestones. Try, if possible, to take an action that counters these negative feelings. Tell your child how you think they look—be as specific as possible
• Encourage your child to begin learning skills that enable her independence. These skills include learning orientation and mobility or travel training as well as instruction in the entire blindness-specific Expanded Core Curriculum, which will enable your child to access the school curriculum and live independently throughout life.

• You may find it helpful to talk to parents of other teenagers who are blind or low vision. Your child’s teacher of students with visual impairments (TVI) or orientation and mobility (O&M) instructor can also help you find other families to talk with about your feelings.
• Suppose your child’s eye condition is inherited and you have other children. In that case, you may be concerned about whether your other children will also develop the condition or may be carrying the relevant gene. Talk with your child’s eye care specialist about genetic counseling for your family.
• If you or your child experience feelings of depression or anger for an extended period, consider consulting a professional counselor. This may enable you to work through your feelings and develop strategies to move toward acceptance of your child’s vision loss.