Online resources for raising a blind child: Then & now

Amber Bobnar in 2005 with husband, Esoos, and son, Ivan. 

Amber Bobnar in 2005 with husband, Esoos, and son, Ivan. 

 

In 2005, there was no public Facebook®; it was only available to college students at the time. Yes, really.

In 2005, Yahoo® Groups was about as sophisticated as you could get in terms of reaching out to people online.

“I wanted to know more about how to interact with a blind baby; how to help him develop and grow; how to keep him safe; how to help him socialize and become as independent as possible.”

In 2005, YouTube® was still just an idea.

In 2005, Google® was just beginning to be everyone's default search engine, but there still wasn't much available when you searched for information about raising a blind baby.

In 2005 my son, Ivan, was born blind with Leber congenital amaurosis (LCA). Since we lived in a very rural part of a very rural state, the Internet was my lifeline to information about blindness; but at the time, there was very little out there to help us.

I remember searching in the dark—literally. I would sit in our office after the family had gone to bed, my only light the bluish glow from the computer screen, desperately looking for information about LCA, blindness, research, and resources. I was in the dark in more ways than one.

In 2005, I watched Yahoo® Videos (remember, no YouTube®) to see what nystagmus looked like, to determine if my son's rolling eye movement could be considered nystagmus.  Many of the sites I visited gave me very technical and hard-to-decipher information.

After the initial shock of the diagnosis, and after reading all the scientific information I could find, I realized that I was still missing a very important piece of the puzzle. I wanted to know more about how to interact with a blind baby; how to help him develop and grow; how to keep him safe; how to help him socialize and become as independent as possible. When do you introduce a white cane? When do you start thinking about braille? Oh my goodness, how do you even start thinking about braille???

Eventually, I stumbled upon the LCA Yahoo® Group and finally started to feel that I had found what I desperately needed: a community. Connecting with other families made a huge difference in helping me understand what it meant to raise a blind child. My husband and I were not alone in this. These other families had already blazed a trail, and it was incredibly helpful to have a support group—someone to turn to when we had questions.

In 2006, I began WonderBaby.org because I wanted to create a space where families could find and share information about raising a baby who is blind. I focused on the fun stuff (sensory activities, accessible toys, making holidays accessible) as well as the educational (braille, O&M, teaching daily living skills).

WonderBaby.org is not the only organization doing this work. Some of my other favorite online resources (just to name a few) are:

Sensory Sun
Powered by a creative mom who is great at finding ways to teach her blind daughter all about the world.

FamilyConnect
A family support resource from the American Foundation for the Blind and the National Association of Parents of Children with Visual Impairments.

Through Scarlett's Eyes
A mother in the UK created this platform where parents share their stories and ideas about raising visually impaired kids.

Thomas Marshall Does it All
Another mom-driven site full of ideas and resources for raising a blind child.

Blind Motherhood
Holly is an adult who is blind and raising two young children. She’s witty and inspiring!

Paths to Literacy
Excellent resource for anyone interested in learning more about braille.

Little Four Eyes
Support site for families with kids in glasses.

Most of all, I find myself drawn to Facebook® Groups, where there seems to be a group for everything. Not only are there some great LCA groups, you can even find groups that focus on specific genes (like the CEP290 group). 

Do I still find myself up late sometimes, after the family has gone to bed? Yes; but now, instead of sitting frustrated in front of a computer, I’m happily Facebook® chatting on my phone with other moms all over the world. In 2005, that would have seemed unimaginable! My, how times have changed. 

The breadth of resources on the Internet in 2016 means that now, when a parent hears the unbelievable diagnosis that sends them to their computer in the middle of the night, they can find an entire online community to help them take those first steps, in a journey that no one should ever have to take alone—and that is something for which we can all be thankful.


 

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Disclaimer: The opinions and references found in this patient story belong to the author alone, and do not necessarily reflect the opinions of aSharedVision.com or Spark Therapeutics. Spark Therapeutics is not responsible for the accuracy of any of the information supplied by third-party sites referenced in this story.