It's not what you can see, it's what you can be
The Henry Zarrow International School Student Council (Which Madison Ingram is part of and pictured)
A violinist since age 5, young Madison Ingram began having problems seeing her music during violin practice when she was around 8 years old. In most cases, a prescription for glasses would be the solution for children needing vision correction.
“I thought she was wanting to quit violin, but she just couldn’t see it,” said Yoriko Ingram, Madison’s mom. “We took her to the eye doctor and thought with getting her glasses, she would be fine.”
A trip to Dean McGee Eye Institute in Oklahoma City resulted in a diagnosis of Stargardt disease, the most common form of inherited juvenile macular degeneration that causes progressive vision loss in children and young adults.
Stargardt disease, like other forms of macular degeneration, does not yet have a cure. It affects one in 10,000 children. Vision loss generally stops progressing in the late teen years.
Madison was then referred to NewView Oklahoma, the only private in-state provider of comprehensive services for people with significant vision loss that cannot be corrected with glasses, surgery or medication. A 501(c)(3) non-profit organization, NewView seeks to empower blind and vision-impaired individuals to achieve their maximum potential through rehabilitation, employment and community outreach.
NewView offers two comprehensive low vision clinics in Tulsa and Oklahoma City to provide one-of-a-kind vision rehabilitation services for individuals living with blindness and vision loss. Most patients utilize NewView through physician referrals. Medicare and most major insurance plans are accepted, and a sliding scale method is used for individuals without insurance.
Madison is now 10 and has been a patient at NewView for two years. She sees Judy Riley, O.D., at the clinic.
“My daughter loves Dr. Riley,” Yoriko said. “She explained everything so well so that we could easily understand. Dr. Riley is really good with kids and is so patient. She takes time to answer all of our questions.”
Madison uses bioptic telescopes to see more clearly and give her the ability to see much further away, especially her violin music. The telescopes are attached to her glasses and work like miniature binoculars to make images larger and easier to see.
Yoriko highly recommends NewView to other parents. She said NewView staff will even visit your home to check to ensure nothing is dangerous for a person with limited vision or blindness.
“They were so helpful, especially since we didn’t know anything about Madison’s disease,” Yoriko said. “They just make you feel better, feel so good...like a blanket.”
Madison is in fifth grade and part of the gifted and talented program at her school. She maintains a 4.0 grade point average and is in an Individualized Education Program. She and another girl in her class, who also has been diagnosed with Stargardt’s disease, have the assistance of an aide during school hours.
NewView started in Oklahoma City in 1949 and opened a low vision clinic in Tulsa in 2014. Ten clinical staff work at the Tulsa location.
“Our clinic is full all of the time,” said Lauren Branch, President and CEO. “In the 21 years I have been in my role, there hasn’t been a day that I haven’t wanted to go to work. I love what I do.”
NewView also offers community programs for people of all ages living with blindness and visual impairments, including art classes, summer camps and support groups.
NewView offers three types of summer camps that are also known as OWL (Oklahomans Without Limits) camps. One OWL camp is structured for 8- to 14-year-olds to build confidence and friendships and just to have fun. Campers are paired with a sighted buddy during the week.
“It’s amazing the benefit the sighted kids receive. It helps them look at kids with disabilities differently...that’s how we break down barriers,” Branch said. “This camp helps set expectations and raise the bar for children and parents.”
Another camp is a week of water sports for 15- to 18-year-olds. The camp takes place at Lake Tenkiller near Tahlequah and campers learn through adaptive water skiing. “This camp is focused on teaching the kids to water ski and to help teach them confidence and daily living skills,” Branch said.
For older teens and young adults, NewView offers Keys to Work. This camp is a program focused on individual living to help students and young adults gain skills to transition from school to higher education or work. Activities include mock interviews, learning how to grocery shop, learning how to use Uber and public transportation, budgeting and more.
“Keys to Work is an intense learning experience,” Branch said. “This program helps older teens and young adults learn how to self-advocate.”
NewView plans to join other Tulsa non-profits at Legacy Plaza near 31st and the Broken Arrow Expressway next spring. The organization will be co-locating with a non-profit new to Tulsa, Hearts for Hearing, one of the largest providers of cochlear implant services in the region.(https://heartsforhearing.org/) Vision and hearing loss often go together, according to Branch.
The new location will provide more space for NewView and allow them to add a teaching kitchen, neurological services and more group programming.
“Vision loss and blindness can be very isolating,” Branch said. “Our mission is to provide a place that offers a sense of community. This helps alleviate the sense of isolation and depression that can occur.”
NewView is also the state’s leading employer of individuals who are blind and visually impaired, providing nearly 150 jobs through in-house positions in manufacturing, administration, management and rehabilitation.
For more information about NewView Oklahoma and its services, please visit https://nvoklahoma.org/. NewView’s Tulsa office is currently located at 5986 S. Yale in KingsPointe Village.