Hi and welcome to the parent's resource page from the Foundation for Retinal Research. We will provide you with the information you need to learn more about Leber’s Congenital Amaurosis (LCA), visual impairment, and raising a happy, healthy child who just happens to live with a vision handicap.
As an introduction, we would like to quote Sarah Blake from http://www.growingstrong.org/, who writes...
You are not alone. More than 600,000 children in the United States live with some degree of visual impairment. Parents of many of these children are finding the support and resources they need using the Internet. A number of email groups provide opportunities to interact with other parents and blind adults. Web sites provide free information and links to books that can be purchased online.
If you are just beginning your search for information in response to a recent diagnosis, the first thing you should know is that your child can lead a very fulfilling life with or without eyesight. Your support will provide all the encouragement your child needs; and when you understand blindness and how people do things without eyesight, you can pass this knowledge on and help make that fulfilling life a reality.
Here's what you'll find on this page:
Let's Get Started: Learn More About LCA & FRR
The Foundation for Retinal Research is here to help parents of children born with LCA. Besides funding research for this disorder and searching for a cure, we also provide a support network of hundreds of other parents across the U.S. (and even overseas!) who can talk with you and guide you through the most important time in the life of your child.
You'll want to learn as much as you can about this rare disorder. These links will help you get started:
- Clinical workup for new LCA patients: Here FRR will tell you which tests you should ask your doctor to perform in order to diagnose LCA and then which tests might be beneficial after your child's LCA diagnosis has been confirmed.
- LCA FAQ: This page compiles the most common questions parents often ask about LCA.
- More LCA resources on the internet: Check out this page for a comprehensive list of internet resources on LCA and visual impairment.
Understanding the Eye and Visual Impairment
If your child has recently been diagnosed with a visual impairment, you may have many questions about whether treatment can help, how to help your child use his remaining vision, and what to do next. The Eye Care Page provides basic information about the eye, eye conditions, treatments, and low vision aids that can help your child use his vision most effectively.
The Blind Babies Foundation, located in Oakland California, offers a great set of Fact Sheets that you can either download directly from their website or request for free through the mail. These sheets contain information on the eye, how the eye communicates with the brain, different diagnoses that cause visual impairment, vision specialists, and vision assessments.
The best way to begin to understand how blindness and visual impairment will affect your child's growth and development is to read, read, read. Here are lists of the best books and internet resources that will help you get started:
Blindness and Early Childhood Development
Blindness can affect child development in a number of ways. The most important thing to remember is to get your baby interacting with the environment! Sighted babies move around because they become curious about what they see. Blind children may need a bit of help getting their curiosity piqued. Talk to your baby using normal language. Play with toys that feature different textures, sounds, and smells. Here are two articles that will help you stimulate your blind baby:
Getting your baby to move around in the environment helps him develop an accurate understanding of spatial concepts and learn to move around safely. In the article, Orientation and Mobility: What does it mean for my baby?, Andrea Story introduces parents to the field of orientation and mobility, its history, and what O&M instructors do with babies and toddlers.
Several books also provide valuable information for parents of blind children. Be sure to check out our list of the best books on visual impairment.
Meeting Your Child's Educational Needs
Educational services are available for children with visual impairments from infancy through age 22. For an overview of services available, read the article, Who's Who in the Education of Blind Children.
If you are a homeschooler or want to supplement your child's formal education at home, the electronic resource book, Nothing But the Best, provides information about teaching blindness-related skills and academic subjects as well as links to sources of supplies and other useful books.
Although your state is required to provide your child with services, you will sometimes find yourself fighting for the services you know your child needs. If you are in this situation, read our article on Finding Services for Your Blind Child.
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