Dealing with the Diagnosis
Leer este artículo en español
Most parents of children who are visually impaired can recall the day they were given the diagnosis of their child's eye condition, who told them, and how the news was delivered. For many, the memory may be upsetting because they weren't prepared for the news, it wasn't delivered gently, or they weren't given information about where to turn for help. An eye care specialist may say, "There's nothing I can do." And while it may be true that nothing can be done medically for the condition, there is a great deal that you and your family can do for your child.
One of the first things to do is find a good eye care specialist that you have confidence in and your child is comfortable with. Next steps include learning as much as possible about your child's eye condition; keeping detailed records of medical and other reports, plus what you've learned from your research, and any developments you've observed in your child's behavior (with dates and descriptions); and, if possible, joining a support group to learn from and share with.
Regardless of what your child's visual impairment is, or the expected changes over time, having accurate information about what caused the visual impairment is important. Understanding the cause of your child's visual impairment and whether your other children either have the condition or may develop it, is essential information for you to know. Also, finding out if the condition is inherited and can be passed from generation to generation is vital. That fact affects not only you, but your children and other members of your family.
When you receive a diagnosis, consider getting a second opinion. It's always good to have any medical diagnosis confirmed by a second physician. It's also important to know that, for a number of children with visual impairments, there can be more than the one diagnosis. Many conditions involve secondary diseases that are present or may develop as your child gets older. Therefore, it's important to have your child's vision checked regularly, typically every one to two years, to monitor the health of the eye.
In addition to the diagnosis and prognosis, you'll want to learn about how your child's visual impairment is likely to affect her daily functioning. Your child may have an eye condition, such as albinism or aniridia, that is accompanied by intense sensitivity to light (photophobia). If your child is photophobic, having her wear sunglasses and a hat with a brim when outdoors will help to maximize the use of her vision. Also, understanding what your child can and cannot see will help you understand, in turn, her educational and daily living needs.
The use of a hat and sunglasses are helpful to this active six-year-old who has albinism. She is more independent outdoors when she wears her hat along with her prescription sunglasses.
As you start to learn as much as you can about your child's diagnosis, you're likely to collect information from eye care specialists, teachers, talking to others, and your own Internet and library research. It's a good idea to develop a system for organizing the information so you can review it in the future.