Parents

Welcome!

If you are viewing this site, you are searching for information on CVI. Maybe your child has just been diagnosed, or maybe you are independently searching for answers to concerns you have about your child’s visual behaviors. Either way, we hope you find some answers here.

Parents are the most important members on a child’s educational team. You know your child best and as you move forward you will provide teachers, doctors, therapists, etc. with valuable information just by describing your child. A parent interview is one of the first steps an educational team should take.

Diagnosis of CVI is typically done by an ophthalmologist or neurologist. You can start by describing your concerns to your pediatrician who can refer you to one of these specialists.

If your child is under the age of three you will need to find a birth to three intervention program in your state. Each state calls these services something different, but your pediatrician, eye specialist, internet research or networking should provide you with the contacts you need to initiate evaluations from the early intervention team. In most areas, you will be assigned a service coordinator who can help you navigate this system. There are support systems out there developed by families raising children with CVI designed for the exact purpose of support and information sharing. See the resources/website/facebook tab on this site for some suggestions. A great resource to start with is “Little Bear Sees,” a book and a website created by a family raising a child with CVI. Your child will not be exactly like their child, not all children are alike in their CVI challenges. Your child may have fewer visual behaviors or maybe more visual behaviors that alerted you to the possibility of CVI. This website’s Resource page has numerous resources for all levels of CVI.   As your team of specialists develops, be sure to seek out a teacher of students with visual impairments who has experience working with CVI or is willing to learn with you.

If your child is almost 3 or older, you will need to contact your school district. School districts typically have more rigid guidelines for providing services to children, so they may require a diagnosis before the teacher of students with visual impairments can evaluate your child for services. Don’t be afraid to ask if the teacher has experience working with children with CVI. Some do and some don’t. Familiarize yourself with this diagnosis and listen for key terms that would show you that this teacher understands CVI. Be aware that CVI is a relatively new concept to teachers in the field of visual impairment, eye care specialists and other team members, but also know there is information available to explain and help the team work together to develop an educational plan for your child.  Be skeptical of a team member who is not willing to try different approaches. EVERY child is different and the educational program must be developed individually based on your child’s strengths and needs. Educate yourself and be cautious when a team member uses words such as ALWAYS and NEVER. There is still much to be learned about the brain, its plasticity and its effects on vision.

Please take some time and explore this site. If you have questions, comments or suggestions for needed content you may send them to ssullivan@aph.org.