When Mac Carr was five weeks old, his parents began noticing his eyes were making different movements that weren’t typical for a child his age. 

His mom, Nicole, called an ophthalmologist to get him checked out. He was diagnosed with optic nerve hypoplasia, which Nicole said means someone could be sighted, otherwise seemingly typical, or totally blind and anywhere in between. They also did functional vision assessments, but that didn’t indicate blindness. So, it was a game of wait and see. 

Nicole has a doctorate in nursing and has worked in healthcare, including some time in pediatric healthcare, for more than 20 years. She and her husband, Chris, also have two other children, Aubrey and Nora. Even with the experience Nicole has, she felt lost. 

“I had no clue what I was doing,” she said. “To say that is the most defeating feeling doesn’t do it justice. It feels like you’re setting your child up for failure without giving them the tools they need to be successful.” 

When Mac was about 18 months old, it was apparent he was totally blind as he was walking into counters and not making eye contact. Around the age of two, he started walking with a cane. 

“I learned that 85% of everything that a child learns through age 5 is through vision,” Nicole said. “So, my son was already at a huge deficit and I didn’t know what to do.” 

She began calling her local school district to help the district and her family feel prepared for when Mac was ready to attend school.  

“We intentionally moved to an area that has a very well-known special needs program that does a phenomenal job of taking care of people with disabilities,” she said. “But they weren’t equipped to deal with people who are totally blind.” 

The district brought in specialists and contracted with an outside agency, but not everybody was on the same page. Although everyone had Mac’s best interests at heart, it made things more confusing for him. 

Molly Reardon with the Kansas State School for the Blind (KSSB) was Mac’s orientation mobility specialist when he was younger. At the end of his year in kindergarten , Reardon joined one of Mac’s individualized education program (IEP) meetings. 

The following year, the school made the decision to cancel its contract with the outside service provider? and only bring in KSSB, which Nicole said was a “night and day difference.” 

In 2021, Nicole and Chris founded Blind Spot, a nonprofit that aims to remove the “blind spot” of those who are sighted or have the ability to see. They want to change the narrative of a blind person’s abilities and how a sighted person can support them. 

“I want my child to not be counted out before he’s given an opportunity,” she said. “My sighted children are given that opportunity. Not everything is for them, but at least they get to try.”  

Blind Spot partners with KSSB and provides scholarships to students who aren’t given funding from their district. In turn, Blind Spot provides services such as professional development (PD) for educators. 

The nonprofit and KSSB recently partnered to put on a PD day at Mize Elementary, where they put blindfolds on staff and had them navigate by using canes. Nicole’s daughters acted as distractions. 

Mac’s teacher was one of the educators with a blindfold. During the exercise, a volunteer came up to her and asked for a high five. 

“Her demeanor dropped, and she said it was distracting, then realized she did the same thing to Mac every day as an act of kindness,” Nicole said. 

KSSB not only comes to Mac’s school, but he goes to summer school there. While Mac doesn’t often get to interact with other kids who are blind, he gets the chance to do so at summer school. 

“We would be lost without KSSB,” Nicole said. “The things that they do for kids like Mac and families like mine…I don’t know how to best care for Mac or educate him and they pick up the pieces where I fall short. My huge ask is that if everyone would allow themselves to be move vulnerable and learn something that would make them uncomfortable, their lives would be more enriched when they allow themselves that opportunity.” 

KSSB serves about 50 students at its Kansas City campus and 800 students across the state. To learn more about the school, click here. To learn more about Blind Spot, click here.