FamilyConnect

When Sarah met Lizzie for the first time, she says it was love at first sight. The fact that Lizzie would never be able to see her face didn’t matter to Sarah, who had been a foster parent to 11 other children before she got the call from an agency about Lizzie.

“I just knew there was something different about this kid the moment I saw her,” Sarah said. “I felt very connected and drawn to her.”

Sarah fostered Lizzie for about 18 months before she adopted her. Lizzie, who is almost three years old, was born with only light perception and now is completely blind due to a type of cancer called retinoblastoma. Though Sarah had known older kids who were blind, she had never interacted with a baby who was totally blind.

Finding Resources

“I’ve realized how hard it is for families to find resources,” Sarah said. “And even knowing resources exist doesn’t mean you can get access to them.”

Finding braille books and toys that are appropriate for Lizzie has been a challenge from the beginning. After all, a toy that’s appropriate for a three-year-old who can see may have no value to a toddler who is blind.

Connecting with Organizations

Early on, Sarah began connecting with organizations and communities such as the American Foundation for the Blind to find the resources Lizzie needs. Sarah said AFB has welcomed her input as they develop more resources for children who are blind.

“It’s been neat to be part of that conversation with AFB, as they work on expanding programming for kids who are blind,” Sarah said. “AFB has been a huge resource.”

For example, she and Lizzie visited Esther’s Place, a fully furnished model home at the AFB Center on Vision Loss in Dallas that’s set up to demonstrate how simple adaptations and products can make daily life easier for people with vision loss. Esther’s Place has prepared an entire room for children.

“That space is not only for showing what’s possible with children, but also for parents who are visually impaired who have children, whether they’re sighted or visually impaired themselves,” Sarah said.

Adapting Toys for Children with Visual Impairments

She has addressed the challenge of finding appropriate toys in a couple of ways. In addition to a resource list available through FamilyConnect’s website, Sarah quickly figured out what kinds of play activities appealed to Lizzie the most.

A lot of Lizzie’s toys are simple household items, such as spoons and measuring cups, which she has fun stacking inside each other. Not only does Lizzie enjoy learning what she can do with them, it’s a way for her to explore and gain context about the world around her.

Teaching Blind Children About the World

“One of the things I learned early on is that Lizzie isn’t observing what I do, so I have to tell her, ‘I’m opening the refrigerator to get you an orange’—it helps her to understand that an orange comes from somewhere, and she can grab it out of the fruit drawer,” Sarah said. “She loves playing in the pantry, exploring and feeling the bags of rice and beans, so I’ve made it a safe place for her to play, and it also helps her learn what a pantry is and where food is stored.”

Sarah uses similar strategies when she’s with Lizzie at a store, for example, letting her reach for and hold items. “If she’s holding a piece of clothing, she knows we’re shopping for clothes,” Sarah said.

Whenever possible, Sarah lets Lizzie explore the world around her and experience all the things other kids do, like gymnastics and swimming, or going to the park and playing on the slide. Lizzie used a doll stroller as a guide when she was learning to walk and sometimes uses a white cane, but at other times, Sarah lets her feel her way around.

“When she was learning to crawl, I sometimes let her run into walls because I can’t protect her and walk in front of her forever,” Sarah said. “I don’t want her to get hurt, but she has to figure out there’s a table in front of her.”

Sarah would verbally tell Lizzie, “There’s a table in front of you,” but she wouldn’t run over to stop her. That way, Lizzie can figure out boundaries like where the edge of the curb is before she steps off.

“It’s not how many times you fall down, but how many times you get up again,” Sarah said. “It’s about making the world accessible without putting limits on her.”

Overcoming the Challenges of Visual Impairment

Sarah realizes there are some things Lizzie will never be able to do, but she’s confident there are a lot of ways her daughter can be successful in her life. “I’ve seen that at the AFB office and talking with blind adults who are successful, and it gives me hope that that can be my kid someday.”

In addition to the strength and support she’s drawn from the community at FamilyConnect and other organizations, Sarah is using her own voice to advocate for better resources for people who are visually impaired. She recently traveled to Washington, D.C., to lobby for funding to buy more braille readers that people could check out from the public library.

“When we went to Capitol Hill, there was a 16-year-old with us, and it was empowering to envision my own kid doing that someday,” Sarah said. “It shows her she can stand and have a voice with the people who make decisions in our government.”

Although that kind of advocacy is a few years away for Lizzie, Sarah cherishes the moments that remind them both of how much her daughter is capable of. She says she gets a lot of inspiration from Lizzie, who she describes as “a tough and determined kid,” particularly when she sees her discovering her own potential. She recalls a recent experience on what she considers an especially successful parenting day.

“I was sitting on the curb reading, and Lizzie was pushing her baby stroller up and down our neighborhood street. She was wandering all around, going up the curb and onto the grass and exploring, and I was sitting on my rear end reading a book. And I thought, ‘This is awesome because she’s confident enough to explore freely like any other kid would, and I’m confident enough to be able to relax enough just to sit here and watch her.’ It was really encouraging.”