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Life with a Cortical Visual Impairment (CVI)

Lola's Story

content courtesy of Matthew VanTryon
Shining Through Darkness first published on Medium

Meredith Howell knew right away that something wasn’t right.

Howell and her husband were living in Costa Rica after having moved from Indianapolis to be closer to Howell’s parents. After what had been a normal pregnancy and birth, Howell was looking down at her firstborn child laying in her arms.

Lola wasn’t looking back.

“From the moment she was placed on my chest I kind of had a feeling something was wrong with her vision,” Howell said.

That was just the beginning of a long and winding journey for Howell as she navigated motherhood with a visually impaired child.

“One of the hardest things for a parent is not having that eye contact with their child.”

“One of the hardest things for a parent is not having that eye contact with their child,” said Annie Hughes, a teacher of blind and low vision for Visually Impaired Preschool Services in Indianapolis. “When you’re up in the middle of the night feeding them or changing a diaper then they look at you and you look and them and between those glances all that love, and you’re not getting it, that’s hard.”

Lola, who is now 12 years old, continued to show developmental delays. At 4 months old, she started having seizures. As a 7-month-old, she was diagnosed with cortical visual impairment, where the eye takes in images but the brain doesn’t process them.

“The internet kind of became my community,” Howell said. “I didn’t have a special needs support group by any means. Not having that interaction was challenging.”

When Lola was 12 months old, Howell and her husband decided to move back to Indianapolis. While Lola was getting the physical and occupational therapy she needed, Howell knew the visual impairments were impeding everything else. Surely, she figured, she would be able to find support and resources in a place like Indianapolis.

What she found — or, more specifically, what she didn’t find — would pose more challenges.

It’s one thing to not have resources and support as a parent of a disabled child. But in Indianapolis? The 15th-largest city in the country?

“I thought there would be more resources than there were,” Howell said.

She searched online, went to libraries, and had a “no quit” attitude while trying to find resources to help Lola. Eventually, she found Hughes and Visually Impaired Preschool Services, just a few miles from her house in Butler-Tarkington.

Hughes taught at the Indiana School for the Blind and Visually Impaired for more than 30 years, retiring in June 2011. By August, she was seeing her first children as VIPS Indiana got off the ground, serving as a branch off of the same organization in Louisville. Today, the organization serves 100 children across the state. Hughes and a team of others visit families inside their homes to assist with the education of their visually impaired child, from birth to 3 years old.

Understanding vision impairments and their challenges

There are a number issues that can cause a vision impairment in children. Why are they so difficult to detect early for children?

Howell called Hughes. Hughes came to visit Lola for a referral. What transpired over the course of that visit, and in the years to come, proved instrumental.

“We felt like someone was there that understood Lola’s vision loss and how we could teach her. It was a life-changing experience.”

“I’ll never forget that first meeting we had,” Howell said. “My husband and I both started tearing up. We felt like someone was there that understood Lola’s vision loss and how we could teach her. It was a life-changing experience.”

For the first time, Howell felt like she had the resources to help Lola with her vision impairments. Lola is one of just 35 children in the world with Bosch-Boonstra-Schaaf optic atrophy syndrome, which causes seizures and autistic delays.

Hughes came in with her books and games, brochures and DVDs, and all of the sudden Howell didn’t feel so alone.

“It’s something I don’t think comes naturally to sighted parents,” Howell said of helping a visually impaired child. “It’s hard enough being a parent, but especially when your child has something as complex as (cortical visual impairments.)”

Soon, Lola and Howell were attending support groups and play dates with other parents of visually impaired children.

“It was the first time I could let my guard down and be a mom,” Howell said. “Lola was just Lola. It empowered us to become better parents.”

Hughes taught Howell and her husband how to help Lola develop. Many of her suggestions had to do with talking through everyday situations and utilizing Lola’s other senses, such as touch and hearing. Even when a parent does something as simple as laundry, a visually impaired child can learn about hot, cold, wet, dry, on and off.

One of Hughes’ favorite stories to tell is the blue bowl story. Two 1 year-olds, one who is sighted and one who is visually impaired, are in the kitchen as mom and dad are cleaning up from dinner. The husband has an idea.

“Honey, where’s the blue bowl?” he asks. “Let’s make some popcorn and watch a movie.”

“On top of the refrigerator,” his wife responds.

The children’s father reaches on top of the refrigerator, pulls down the blue bowl and makes popcorn.

This exchange, which took less than 10 seconds, had multiple lessons for the sighted child. They now know what on top means, what different types of bowls look like, what kind of things can go in bowls, what a refrigerator is and what the color blue is.

The visually impaired child learned none of that. They heard the words, but couldn’t connect it with any sort of meaning.

“That incidental learning goes on every second a sighted child is awake,” Hughes said. “Someone has to make a point of teaching (a blind child) those things.”

But the opportunities are there, if parents are willing to take advantage of them.

“All the learning a blind or low-vision child doesn’t get, families have to learn how to fill in some of those gaps by using touch and verbal cues,” Hughes said. “A child’s house is a wonderful classroom. It’s their first learning environment.”

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