Shining Through The Darkness
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 6 years old, continued to show developmental delays. At 4 months old, she started having seizures. As a 7-month-old, she was diagnosed with a 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 1 year 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 vision 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.
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.”
In addition to teaching their visually impaired child how to navigate the world, parents often deal with emotional and mental strain. This can start to integrate itself into a parent’s life as soon as the child is born.
“No parent wants to see their child go through challenges,” Howell said. “It’s hard to accept in the beginning. When you’re pregnant, you don’t expect that they’ll go through so many struggles.”
Parents often struggle to find information about their child’s impediments. Howell made numerous trips to the doctor looking for answers for Lola’s vision, but was dismissed with no answers.
“It was probably the most difficult part of my parenting journey: having that instinct that something was wrong, but not really knowing,” she said. “I didn’t know if I was reading too much into things.”
Doctors, though well-intentioned, often cause additional worry for parents.
“Unfortunately sometimes the doctors say ‘You’re just being a nervous first-time mother,’” Hughes said. “A lot of times a mother’s gut is pretty spot-on.”
As Howell continued to navigate Lola’s various diagnoses — Lola wasn’t officially diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome until three years ago — she found herself worrying about Lola’s future.
“It wasn’t about loving Lola, it was that I knew she was going to face a lifetime of challenges.”
“I grieved,” Howell said. “It wasn’t about loving Lola, it was that I knew she was going to face a lifetime of challenges.”
But the child doesn’t know any different.
“Feeling guilty doesn’t help anything. If the guilt would make things better, let’s do it. If not, let’s not waste energy on that,” Hughes said. “Let’s focus on good things. Getting over that guilt and enjoying the baby you got, enjoying the progress you’re child is making, learning to celebrate those milestones. Every child has them. You can always find progress.”
Howell learned, eventually, to let go. As she did, she saw Lola progress.
“When you stop looking, she starts doing things,” Howell said. “At some point you just want her to be a kid and not always be in a therapy or something like that. I just want her to be a kid. We’re not in this to fix her. We’re in this to better her quality of life.
“I wake up now and think, ‘What is Lola going to eat for breakfast?’”
But the challenges only increase as a child gets older. Here are the stories of two other people who are visually impaired.
Meet Chris Avila.
Avila is a senior in high school. He loves Italian food. His favorite restaurant is Maggiano’s. He likes pizza, but doesn’t have much money, so he likes whatever is cheapest. He watches “House of Cards” and “Vampire Diaries.”
He likes rap music. One time, he got caught making out with a girl in a tunnel on the playground. He gets bored in school. He texts his friends. Goes to Steak ‘n Shake with them after class. Sometimes his roommates get on his nerves.
He’s going to Indiana University-Purdue University, Indianapolis in the fall to study business. He eventually hopes to transfer to Indiana University’s Bloomington campus.
For now, he’s just waiting to graduate.
Avila seems like any other high school student.
The only difference? Avila is blind. He has been since the age of 5 after sustaining injuries when a car hit him.
That Italian food? That pizza? He can taste it, but he can’t smell it. Another side-effect of the accident.
Those television shows? He listens, but he can’t see them.
Trips to Steak ‘n Shake? They come with awkward interactions, ones that Avila has come to accept but those that sometimes make his other blind friends uncomfortable.
College? He’ll go. He says he’ll thrive. But it won’t be without challenges.
But for Avila, this is reality. Consider this:
Avila was in third grade and attending a public school. He accidentally walked into the women’s restroom. He accidentally walked into an open stall. Right behind a girl.
“You’ve got to pay attention and learn to live with it.”
“It was mortifying at the time,” he said. “But you’ve got to pay attention and learn to live with it.”
Learn to live with it. That’s what Avila does. That’s what he’s learned at the Indiana School for the Blind and Visually Impaired.
The Indiana School for the Blind and Visually Impaired opened in Indianapolis in 1847. The school was originally located in downtown Indianapolis before moving to its current location on College Avenue in 1930.
According to the 2014 American Community Survey, nearly 32 percent of blind people have a high school diploma or GED. Another 30.4 percent have some sort of college education. While some students attend traditional schools, others attend school dedicated to those with visual impairments.
Avila has been attending the school since fifth grade. Jim Durst, the school’s superintendent, says the differences between the Indiana School for the Blind and Visually Impaired and a traditional school comes not in goals, but in execution.
“Our expectation is that, given the right accommodations, they can pretty much do anything a sighted person can do,” Durst said. “Frequently we provide additional support in absence of their parents. It gives us the opportunity to provide more intensity and greater duration of services.”
While a blind student at a public school might be in a class with 15 to 20 sighted peers, at the blind school they are in a classroom with five or six others who are visually impaired, allowing their individual needs to be catered to.
But this doesn’t mean coddling. Quite the opposite.
“It’s finding that balance and trying to remove the vision stigma that sometimes exists and helping them exist as an individual rather than a blind individual,” Durst said.
The dynamic of the school has changed in recent years. While it used to be that blindness was the prominent disability of students at the school, 70 percent of the students there today have at least one additional disability. This can create pragmatic challenges, such as staffing needs and financial struggles.
“It costs more money to provide the same things we’d expect for our sighted counterparts,” Durst said. “A print book might cost hundreds of dollars. A braille book might cost thousands. The needs are more intense and the outcomes we want are the same as our sighted counterparts.”
For most of his schoolwork Avila uses a BrailleNote Apex, a laptop designed with braille software and other software for those who are visually impaired. This retails for $1,995 — about $400 more than a new MacBook.
And the software Avila has access to through the school is outdated. He can’t put pictures in PowerPoints and can’t make spreadsheets. The machine frequently malfunctions.
The school is state-funded, and Durst says it receives strong support, but he constantly has to ask for more money to accommodate technological needs. Otherwise, he has to find financial support from other sources.
“Being a state agency and a school, we don’t have unlimited resources,” he said. “It’s my job to work with the state to justify why we need more resources and money.”
One of the reasons parents send their children to the blind school is to increase the child’s self-confidence and likelihood of success. While many visually impaired people have low self-confidence, Avila doesn’t fall into this group.
“Maybe arrogance issues at times,” he said. “But self-confidence (issues)? No.”
But he spends time with peers who struggle in social situations. He went with some friends to Steak ‘n Shake several weeks ago. One of his friends, Marie, went into the bathroom and hit her head on a stall door. Another woman in the restroom apologized profusely.
“Why are you apologizing?” Marie asked. “You didn’t do anything.”
The woman continued apologizing, and went so far as to touch Marie’s head in order to show her where she hit her head.
Marie hates physical contact with strangers.
Nearly 15 minutes after Marie left the restroom, the woman came up to Marie again and asked her if she felt OK.
“If people see you’re blind, sometimes they’re too helpful or obnoxious about it,” Avila said. “You know how if you have a dog and you’re walking down the street, some people try to pet it? Or if a woman’s pregnant and people come up to just feel the baby? It’s kind of like that.”
Why isn’t Avila worried about navigating a world that is seemingly against him at every turn?
“Someone else might be more realistic or expect issues getting around, classes, being nervous in a new environment, but I don’t see any problems,” he said. “People say it’ll be hard being away from your parents, and I already am. Advocating for yourself is a big thing teachers try to drill into the kids, but I don’t have a problem with that either.”
He’s learned to live with it.
Michael Dalrymple had vision until the age of 3½, when he lost his vision due to retina blastoma, which both of his parents also have. Retina blastoma is hereditary, so his parents knew it was coming. They had both gone to the blind school, so it only made sense for Dalrymple to go there as well.
Dalrymple attended a private preschool and started attending the blind school in kindergarten. He stayed there until eighth grade. It’s what laid the foundation for his future success.
In his science classes, he didn’t just learn science. He also learned skills like measuring things. His math classes didn’t just teach him math, but skills he still uses today.
“They are sort of baked into the process,” Dalrymple said of the life skills taught at the blind school. “A (blind) student who attends a public school at a very young age needs to have those skills taught to them separately, or in addition to the academics. It’s just a different concept.”
Dalrymple switched to a public school in eighth grade. While his parents figured that he would be fine academically, they worried about the social adjustments he would have to make.
So, he relied on what he had done for fun at the blind school for years — wrestling.
“You make a friend on the wrestling team and it’s like, ‘OK, the blind kid isn’t as weird as we thought.’ They tell their friends and it goes from there.”
“That helped a lot,” he said. “I made friends and was good. You make a friend on the wrestling team and it’s like, ‘OK, the blind kid isn’t as weird as we thought.’ They tell their friends and it goes from there.”
Being a self-advocate is something many visually impaired people struggle with. Dalrymple needed it to survive in a new environment. No longer were his surroundings structured in a way designed for his success.
He had to learn to speak up in class if he didn’t understand something. He learned to talk to a teacher if they assigned a handout during class that he didn’t get in braille.
“I had to learn to be my own advocate and tell my teacher when it wasn’t working,” he said. “That happened throughout high school and even to college in some extent. Sometimes I was good at it. Sometimes I wasn’t.”
Today, Dalrymple is an attorney in Broad Ripple. He has also served on the Indiana School for the Blind and Visually Impaired board for nearly 10 years. He has seen numerous changes in the school. Like Durst, Dalrymple emphasized the importance of technology — and the funding associated with it.
“The school tries very hard to have the latest and greatest available when it can, but budgetary restrictions often makes that very difficult,” he said.
While the school used to serve just its students on campus, it now has teachers who go to local schools across the state to teach.
“The school has professional knowledge and the experience they have is unmatched,” Dalrymple said. “It’s not a fair expectation that the public school would have the same experience.
“The school needs to continue, and has every intention to continue, providing services to students wherever they are in the state. Being able to leverage their resources and getting the resources to the students no matter where they are is something the school needs to work towards.”
At best, taking Lola to the grocery store is an adventure. At worst? It can be a disaster.
While a normal brain is able to sift through multiple things and determine what to focus on and what to ignore, Lola is unable to separate her senses due to her sensory integration disorder. When adding in the fact that she sees everything as if it were being viewed through a kaleidoscope, Howell says “it’s like an assault.”
So Howell, who also has a 3-year-old son, is left with a choice: stay home or risk chaos?
“You don’t want to be a prisoner in your own home. I have to push her to do things sometimes,” she said. “I can’t keep her holed up. The world needs to see Lola and Lola needs to see the world. If that means she’s having a meltdown in the middle of Kroger so I can buy so milk, that’s just what our life is sometimes.”
Lola is slowly getting better. She attends Access Behavior Analysis for eight hours each day during the week, where they work with her on improving different skills. Recently, they have taken her to Target to get her acclimated “to being a patron” in a store. It’s becoming easier for her with time.
So Howell celebrates that. And while she doesn’t know exactly what Lola’s future is going to look like, she’s optimistic.
“The world is more accessible,” she said. “If there was ever a time for your kid to have a disability, we’re getting to that point. The world is becoming more accessible and accepting of those with disabilities.”
By the world’s definition, Lola likely won’t ever experience widespread success. By her mother’s standards, she’s already there.
“What is the definition of success? Being able to drive? Going to college? Being able to get married or have kids? No, it’s being happy. That’s what success is,” she said. “She’s happy, healthy, she’s loved, she loves and she does things in her own way.”