FamilyConnect™

For parents of children with visual impairments

A Parent's Voice

Exploring the Blogging World

As a new blogger, it's nice to see others exploring the blogging world, especially moms like myself! Yesterday, a coworker sent me a link to Jen's Little Space, a new blog from Jen O'Neill. Jen is a mother of two beautiful girls, Camille and Olivia, and her family is featured in the video section of FamilyConnect. I think I speak for all of us at AFB and NAPVI when I say it's great to see other families connecting and supporting each other through social media tools like blogs.

While I have enjoyed reading all of Jen's posts, the "On Crickets" entry really hit home. Jen explains that as a sighted parent of a visually impaired child, sometimes we think all people need to see things in order to make sense of what is happening in the world, and yet that is not the case. Sometimes we need to step outside the box to understand. With guidance, support, and of course some love, I know our blind and visually impaired children will find their way through the world—it just may not be the way we envisioned.

Happy Mother's Day to All the Moms of Blind and Visually Impaired Children Out There!

Here's to you! Best wishes to you on Mother's Day as you spend time enjoying your families today. I hope you take the time to think about how much you do for your family to enrich their lives and relax for a moment to pat yourself on the back and smile, saying "yes, I am a wonderful mom."

I have admired and appreciated all of the mothers I have met through the years who are working so hard to make sure their blind and visually impaired children have the love, education, and resources they need to thrive. I feel there is no other love stronger and more enduring than that of a mother for her children. A mother's love is a phenomenon—you are their constant and your motherly instinct knows best. Mothers of children with disabilities are some of the most powerful advocates that the world has seen.

Bravo to you and know that you've made a difference in not only your own families' lives but your enduring motherhood has made an impact and will pave the way for those new families that will follow you!

Sincerely,

From another mom of three!

Tom Sullivan Addresses Parents at Preschool Conference

This weekend I enjoyed being with 300 parents and their children with visual impairments with their brothers and sisters at the New England Regional Seminar for Families of Children with Visual Impairments that is held each spring on campus of Perkins School for the Blind in Massachusetts. Most of the parents were attending for the first time with their blind infants wondering how will they cope, what is the future for their child, and what do they need to know as a parent?

One of the most meaningful parts of the conference is the interaction amongst parents with each other through the Parent to Parent Support Groups—parents have the opportunity to meet other parents of children that have the same eye condition. Given that all causes of childhood blindness are rare, most often it is difficult for families to find and meet other families that have a similar experience. Parents for the first time realize they are not alone. It's heartwarming to see new parents who have been devastated by their child's diagnosis actually gain hope by attending the conference and discovering it's not the end of the world to have a child diagnosed as blind.

You could see the tears running down the audience members' faces as Tom Sullivan, actor, singer, author, and producer, gave an inspirational keynote about his life. Tom, who is totally blind due to retinopathy of prematurity (ROP) spoke of the doctor's insensitivity relaying the news to his parents and their reaction to the diagnosis. His mother became suicidal and his father went on a drinking binge. He disclosed how his parents were very overprotective of him and they didn't have expectations as he was growing up. Tom spoke of how he overcame his challenges with his rebellious spirit, and how he further developed his talents and skills to become a very successful person in his many careers with a very productive life of adventure and fun with his wife and two children.

As parents we worry about our children and sometimes overprotect them or do too much for them whether they are blind or not—even more so when we have a child who is blind and/or with special medical considerations. How can we find a balance in raising our kids and not overprotecting them? What's been your experience with this?

Welcome to the New FamilyConnect Community

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?

Meeting Legendary Stevie Wonder!

I was attending a professional conference in California last month and had a nice surprise by meeting the legendary Stevie Wonder as he was perusing the exhibit hall, just like our friends and kids who are visually impaired. It reminded me of how important the vision community of professionals, parents, and individuals who are blind is, who all work so diligently and passionately to coordinate conferences gathering in the same place to provide a buffet of resources, knowledge, and networking with others where otherwise there would be none. Even for Stevie Wonder, who is famous and probably has the resources for mostly whatever he needs, but was able to be a regular blind guy enjoying and learning and networking with others at this conference. Where else would he have this opportunity in the Mecca of Hollywood entertainment?

I remember my first experience as a parent when my son was newly diagnosed child with a rare infant eye cancer. I desperately needed to connect with other parents and was hungry to learn how my son's visual impairment would impact his development and what I needed to know as a parent to raise him. Thankfully, I met a parent of a child who was deaf-blind in the waiting room of the hospital where my son was undergoing eye surgery, and she told me about how she gained support and information from other experienced parents and experts in the field by attending NAPVI National Conferences. Soon thereafter she accompanied me to venture off to my first NAPVI conference held back in 1989 in Dearborn, Michigan, and guess what? Stevie Wonder's mom was there too! Meeting with Stevie recently reminded me of meeting his mom, and how she too looked to NAPVI for support.

By the way, the conference I attended was the California Transcribers and Educators of the Visually Handicapped (CTEVH). Each year, CAPVI, NAPVI's California affiliate, and NAPVI parents collaborate in our outreach efforts by participating in the most largely attended CA statewide vision conference, the California Transcribers and Educators of the Visually Handicapped (CTEVH). NAPVI and CAPVI parents actively contribute to the conference by presenting parent educational and supportive workshops, representing parents at related professional meetings and by networking with new parents and sharing resources at our exhibit area.