Through my eyes: Warrington boy, 9, connects with classmates to share world of visually impaired

Ashley R. Williams
Bucks County Courier Times

Titus Elementary School student Krish Rastogi-Wilson views the world a lot differently than his peers. Coming into the world with little to no vision changed his perspective. 

But now, at just 9, he's helping others see, and understand, his view of things as he navigates school, camp and more, advocating for himself and others with visual impairment. 

Krish has come a long way in his years of living with cortical visual impairment, also known as cerebral visual impairment or CVI. The brain-based condition, which impacts the eye’s connection to the brain, is the leading cause of visual impairment in children in the United States.

His mom says Krish seemingly could see nothing at all at birth. 

“The way we know that is because we would wave a hand in his face and he didn't even blink, he didn't move,” said Gunjan Rastogi-Wilson, of Warrington, who gave birth to Krish and his twin, Rohan, prematurely at 26 weeks and four days.

Krish weighed just one pound and six ounces, and of the twins, only Krish’s vision appeared to be diminished.

“He was missing his blink reflex, so you could (have stuck) something in his eye and he wouldn't have a reflex to it,” his mother said. 

These days, you’ll find the soon-to-be third-grader happily playing along with his siblings at Lions Pride Park in Warrington.

Nine-year-old Krish Rastogi-Wilson has made progress with his cortical visual impairment with the help of his strong support system: his mother, Gunjan; his father, Jim; his sister, Naina; and his twin brother, Rohan.
Krish Rastogi-Wilson, who was diagnosed as an infant with cortical visual impairment, is the twin brother of Rohan Rastogi-Wilson. Rohan was not born with CVI.

The early detection has helped Krish’s vision steadily improve over time, and they’ve been able to measure his progress using Dr. Christine Roman-Lantzy’s CVI range assessment tool.

Roman-Lantzy is the director of Western Pennsylvania Hospital’s Pediatric View program in Pittsburgh.

The zero-to-10 CVI range scores and measures a person’s functional vision, with zero indicating no visual response and 10 being nearly normal vision, according to the Perkins School for the Blind.

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Krish visits Roman-Lantzy about once a year in Pittsburgh to receive a full assessment.

“He's an eight and a half out of 10, which is amazing,” said Rastogi-Wilson, who’s a pediatric nurse practitioner and self-described CVI advocate. “He started off at, like, a two and a half out of 10.”

As Krish gets older, she's passing the advocacy torch onto her son, who has now taken on the role of educating his peers about his condition and how it affects him. 

'How my world works'

With assistance from his current teachers, Krish put together a three-minute PowerPoint presentation called “How My World Works,” which walked his classmates through the ways CVI impacts his daily life.

Nine-year-old Krish Rastogi-Wilson was born with cortical visual impairment. He created a presentation to show his classmates how his world works.
Nine-year-old Krish Rastogi-Wilson, a student at Titus Elementary School in Warrington, uses a cane to assist him with getting around. He was diagnosed with cortical visual impairment as an infant.

The Perkins School for the Blind highlighted the child's awareness and advocacy efforts on their CVI Now website and YouTube page.

"This is a case of what happens when the medical and educational communities get CVI right, when there's early intervention right from the get-go, when CVI is on the radar at the very beginning, when interventions and adaptations are incorporated, and when a school system is all in to support all the needs of Krish and other kids with CVI," said Rachel Bennett, Perkins' CVI content and community manager.

Wearing his glasses and reading from his iPad, Krish told his peers all about why he has CVI, the teachers who assist him each day and his courtesies.

Those include giving him space to use his cane, not being afraid to ask him about his condition and understanding that his vision can get overwhelmed by lots of action around him.

"Something new that's moving really fast in front of his face, he can't follow," Rastogi-Wilson said.

His white cane isn’t a toy, Krish explained to the class. Since he's missing his lower visual field, it helps him detect objects around him while letting others know that he’s visually impaired.

“I think some of the kids understood then why he walks with a cane or why he uses the iPad, because when he was younger, all the kids wanted the iPad,” Rastogi-Wilson said.

A backlit device, she explained, is less fatiguing on the eyes of a child with CVI.

“Our goal with education and anything we do throughout the day is that he doesn't get as tired,” she said. “People with brain damage in general get greater fatigue because their brain is overworked.”

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Bucks County Intermediate Unit’s Monica Picinich, who works as Krish’s teacher for the visually impaired, says the student recently shared that he wanted to start advocating for himself.

“We thought this was a good way to do it because he's super tech savvy,” Picinich said of Krish, who dreams of owning a Tesla one day.

“He was like, ‘I want to teach my classmates about this,’ and he's a brave kid, he's very willing to share about himself,” she said. “His mom and his dad are huge advocates, so I think he's just following what he knows, you know, they’re great examples for him.”

Krish's curious classmates seemed to have a better understanding of his environment, she shared.

"When he was doing this presentation, you would hear some of the kids sitting there saying, 'Oh, that's why you do that,' or 'That makes sense,'" Picinich said. "Even though they're 8 or 9 years old, they want to know what's going on around them."

Gunjan Rastogi-Wilson, Krish's mom, says her son's vision impairment began showing signs of improvement around ages 3 and 4.

‘They don’t always recognize it’

Krish, who also has a mild case of cerebral palsy, was one of the first babies with CVI that MaryAnne Roberto had ever come across.

Roberto, a teacher of the visually impaired for the past 38 years, became interested in the condition after participating in a state-sponsored program led by Roman-Lantzy. 

“That was Pennsylvania, a mentorship in cortical visual impairment, and was the very first and only one in (the state),” said Roberto. 

The expert and mother of eight has two sons with complete vision loss.

Roberto couldn’t diagnose the condition herself as she’s not a physician, but her work with CVI helped her recognize what was happening in baby Krish’s case.

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“Diagnosis is difficult, because believe it or not, many physicians, pediatricians, ophthalmologists and neuro-ophthalmologists don't really understand it, and part of the reason is because they don't do a lot of work with it,” Roberto said. “They are the front line, so they see all the kids, but they don't always recognize it as an issue.”

Krish’s mom, who’s worked with children for 15 years, admits she’d never heard of CVI before Roberto came along.

Rastogi-Wilson says Roberto was the first to realize that her son might have CVI, and helped them go from doctor to doctor in search of the right person to diagnose him.

While awaiting a diagnosis, the family worked with Roberto on weekly tasks to help improve Krish’s vision impairment.

“Their follow-through was remarkable,” Roberto said.

Even as he lives with cortical visual impairment, Krish Rastogi-Wilson is able to enjoy activities like riding his bike and playing at the park with his peers.

“Step-by-step, very intentionally, we worked using the CVI range to develop Krish’s vision, and it worked,” she added. “One of the CVI principles is expectation of change, so we don't just think or hope that maybe it might change, we actually expect the vision to change.”

‘Something we should celebrate’

Krish is preparing to head off to computer camp with his brother for the first time, giving him yet another opportunity to educate others about his condition.

“He's going to have to advocate for himself and say, ‘I can't see this,’ or ‘I don't understand,’” Rastogi-Wilson said.

Krish wants to keep spreading the word about CVI. In fact, he’s already planning on a new PowerPoint presentation to share with his third-grade class.

“The more people know about CVI, the more people are aware of it, and when they eventually grow up and have kids, they’ll be aware that maybe this might happen,” Krish shared.

While Krish Rastogi-Wilson was born with cortical visual impairment, his twin, Rohan, does not have the neurological condition.

Perkins School for the Blind’s Bennett, whose 8-year-old son has CVI and ocular issues, considers Krish to be a “rock star” for having the confidence to advocate for himself from a young age.

“Many people in this society have accessibility needs, so many people are neurodiverse, and it's not something that we should stay away from,” Bennett said.

“It’s something we should celebrate, and it's really important that we have people like Krish (because) their perception and the way they see the world is so unique,” she said. “That's a gift for all of us to learn from.”