WonderBaby: A Place Where Parents Can Go
Congratulations! You've just had a baby. He's beautiful. He's amazing and wonderful... and he's blind.
Blindness in babies is a low-incidence disability. That fact makes it hard to know where to turn for answers on how to raise your child, or where to go for support. Finding yourself in this situation can seem overwhelming and isolating. This was the case for Amber Bobnar, founder and editor of WonderBaby.org, when her son, Ivan, was born. To help find answers and network support, Amber went online. When she didn't find what she was looking for there, she created WonderBaby.org in 2006 to help other parents facing the same issues she was coping with. Her message to other moms and dads raising a child who is blind:
You are not alone.
Since WonderBaby’s inception, parents of babies who are blind or visually disabled from all over the US and even internationally have flocked to her virtual oasis, in search of answers, support and each other.
“I get one or two emails a day,” Amber said. These are people asking for help. On one mid-August afternoon on Perkins School for the Blind’s Watertown campus, Amber peruses through the emails, comments on articles—she’ll get 20 to 30 of those daily—and Facebook activity about her site. She reads an email aloud from a grandmother in the UK, her very first contact with Amber:
I have a grandson, aged 2.5 years who is partially sighted. I find the whole thing very frustrating and feel things (everything) move too slowly.
I don’t think it helps that he won't touch anything, he still opens his mouth like a baby bird for food, but you try putting food (even chocolate) in his hand to make him feed himself and he puts his hand out straight, pushes your hand away and shouts out.
Has anyone else had this problem?
“If you just listen to her tone, she’s really upset,” Amber says. “She needs someone to give her a hug first.”
Although WonderBaby is a veritable encyclopedia of all things parenting, blindness and visual disability, it’s more than that; there’s an actual person behind the screen. A person who genuinely cares. And while Amber began the site to focus on vision impairment, she has also amassed a wealth of information related to additional disabilities, exploring common underlying conditions and accompanying complications of blindness or visual disability.
Susan LaVenture, Executive Director of the National Association for Parents of the Visually Impaired (NAPVI) describes the site as “welcoming.” As a national spokesperson for parents of children who are visually disabled and as a mother who’s dealt with visual disability in her own son, LaVenture is all too familiar with the hoops many parents have to jump through to get answers, often fraught with confusion.
“The part I like about WonderBaby is that it is a mother of a blind child, Amber,” LaVenture said. “She is doing this. I think it’s really important that she’s directing the site from this firsthand, mother’s perspective.”
Lori St. Arnaud, a Chicago, Ill., mother of two children with Leber's Congenital Amaurosis (LCA)—an inherited retinal degenerative disease—would agree.
“It’s nice to see the actual pictures of her son, working with the different things,” St. Arnaud said. “It’s warmer than say if you go to a foundation’s site. They have a lot more technical information.”
When St. Arnaud’s son was diagnosed with LCA six years ago, there weren’t a lot of resources out there. “If I had a baby tomorrow and s/he was blind, WonderBaby would make life a lot easier,” she said.
The same is true for Emily Russell, who lives in the rural outskirts of Gettysburg, Pennsylvania. Once a week, she drives three hours to her daughter’s doctor. Her daughter was born with bilateral glaucoma and, through complications in her eye surgeries, is losing her vision. Emily is staying proactive with her daughter, via sites like WonderBaby.
“We homeschool. I didn’t know how that would work with my daughter,” Ross said. “Amber had a whole resource for homeschooling parents. I enrolled in Hadley School for the Blind online courses for parents through the site… I love that Amber’s site is sort of a one-stop shop.”
WonderBaby.org offers parents informative articles—many from Amber herself and other contributing parents—online resources (books or websites which contain information relevant to parenting), and products, most of which are toys because blind or not, your kid is still a kid. In short, the site “whittles all the information down into the most important, practical things a parent would need to know,” said Diane Croft, a publisher at the National Braille Press.
Croft made note of a recent grandparents theme which Amber ran on the site. The series of articles were designed to “get grandparents thinking about what they could do,” she said. “Very practical.”
Perhaps so many families find the site authentic because at one point, Amber was exactly where they are now.
“For most parents, and I know this was true in our case, this isn't something you're prepared for,” Amber said. “I had never thought about disability, blindness. One mom that I’ve talked to says the first thing you’re dealing with is the medical: what's wrong, how do we treat it, what's our prognosis? In my son’s case, we didn’t have a diagnosis for a long time.” Read about Amber's son Ivan's diagnosis on Wonderbaby.org.
Facing endless doctor’s visits, tests, surgeries and dealing with the insurance companies to pay for all of these things, Amber said the prospect of resources, services and support got relegated to the back burner.
“You’re looking online for all the things that could possibly cause congenital blindness and it’s terrifying,” she said. “You don’t know what it is; whether it’s degenerative or a neurological disorder that could get worse. So you need to do testing now.”
Yet she did not accept her predicament as is. She had never been in this world before, she said, and began asking questions like “Shouldn’t my kid have something? Shouldn’t I be able to access some help? But I don’t even know where to begin.”
We've come a long way
Fast-forward to today. WonderBaby.org has now become a one-stop, virtual epicenter accessible to anybody with an Internet connection. Thus anyone in the world can visit. What was once a blog listing relevant online resources for parents and a series of essays Amber had written from an online Hadley course has evolved into a world for all things parenting, blindness, visual disability… and fun for kids.
Since partnering with Perkins School for the Blind, WonderBaby.org has installed a Q&A Forum on the site where parents can post questions and answers. Amber answers many of the questions herself, but sees the true magic in her site as taking on a life of its own.
“I always feel good when someone else has answered a question before I have. I don’t have all the answers. I’m just trying to bring everybody together in one place so that they can interact with each other and give each other answers… we’re just providing the forum.”
She’s also expanded her online presence to Facebook. Parents can field questions there, as well, but that’s more for quick bites of information and to stay abreast of the latest developments to her site. Conversations on the forum become searchable through engines like Google, which means the authentic information Amber is cultivating on her site acts like a wiki—a website that allows users to edit content via a web browser—for babies who are blind.
Amber includes a products giveaway tab, which introduces parents to new toys or other products their kids could use. They have the chance to win a product for free, but the real power comes in knowing that these innovative items actually exist.
One of her first giveaways was a kit, which included a tactile version of Goodnight Moon. It availed promotion for the National Braille Press (NBP) and their book; it allowed Amber to encourage subscription to her site; potential commentators (prospective users of WonderBaby) had the chance to win a gift valued at $30. Win-win-win.
“I love her giveaway program,” Croft said. “I think that’s very clever. All we have to do is send the item to Amber and she gets the word out to the parents. They get a chance to get it for free and find out about the products.”
Croft, who initially met with Amber before the launch of her site to collaborate on books for children who are blind says, in retrospect, that a website was probably a better way to get information out to parents, than from, say, a static book. And she says “the site is also fun. Many things will be different about the way parents raise their kids with blindness or visual impairment, but Amber reminds us of how much it’s going to be the same.”