Welcome everyone to the new FamilyConnect community and to my new blog, “A Parent’s Voice”! My voice is as a mother of three children and the executive director of the National Association for Parents of Children with Visual Impairments (NAPVI). I am so excited about this awesome way of communicating with parents from all over the world! I would like this blog to be a place where we can have some conversation on what’s new, what are some issues you may be facing and successes you want to share about raising your child with a visual impairment. Something like talk radio—a place where we can discuss topics of interest in everyday life or the big picture with local, regional, national, and international issues as it relates to the education and medical well being of children with visual impairments.
Life has changed dramatically with advances in technology. It’s amazing that we now have the ability to have a virtual community with parents of children with rare eye diseases and medical conditions having access to customized information about your child’s development, education, and social life. Nearly 20 years ago when my youngest son was born with a rare eye condition, retinoblastoma, we did not have this opportunity and it was very difficult to find other families with similar experiences. Information about rare childhood eye conditions was equally as difficult to find; we needed to search the old fashioned way, trying to get special permission to study in a medical research library.
Ultimately, our family did find ways to meet other families through NAPVI, gaining emotional support and connection to resources. My son Alex is now doing very well—finishing up his junior year at Cornell University with plans for an internship in Hong Kong this summer!
I invite you to become an active member of the FamilyConnect community. Please feel free to access all of the interactive features and share your family’s story—we want to hear from you! Please let me know via this new blog: what’s important and of interest to you? What are some topics or issues for a fruitful discussion?