FamilyConnect

Every day of parenting has its highs and lows, and that’s no different when your child has a visual impairment. However, if your child has recently been diagnosed as visually impaired, 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 visually impaired. Regardless of the cause, in all probability, 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. In addition to the information you’ll find in this section on teenagers, you may also find some of the information on this site for families with younger children helpful as well. Here are just a few things to consider:

• Your feelings and concerns about your child’s visual impairment are unique to you, but most parents of children who are visually impaired experience many feelings in common. Your child will wrestle with her own feelings about vision loss 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 visual impairment 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 her driver’s license or the night of her prom when she can’t see how pretty she looks. Try, if possible, to take an action that counters these negative feelings: Tell your daughter how beautiful you think she looks—be as specific as possible (let her know that the blue of her dress matches her eyes, for instance); give your son an alternative “rite of passage” event to celebrate in lieu of obtaining a driver’s license (something like a bus, train, or plane trip to see a favorite relative or friend from camp).

• You may find it helpful to talk to parents of other teenagers who are visually impaired. Consider posting a message on the FamilyConnect message boards. Through the National Association for Parents of Children with Visual Impairments (NAPVI) and other parents’ organizations, you can meet other families. 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.

• If your child’s eye condition is inherited and you have other children, you may be concerned about whether your other children will also develop the condition or may be carrying the relevant gene to pass on to their children. 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.

• 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.