Courage & Connection: There Should Be More Wayfinders

“The longer we are with Wayfinder, the more independence and freedom that Axton has,” says Arlisha, mother of Axton, a 4-year-old who receives Wayfinder’s Child Development Services. The program assists young children with visual or multiple disabilities in achieving developmental milestones.

Axton is a happy, funny, affectionate boy. He was born with an exceedingly rare genetic disorder. “The doctors couldn’t tell me much,” Arlisha says. “There are only three cases in the literature.” After he was born, baby Axton spent seven months in the neonatal intensive care unit. He came home with a feeding tube because he has difficulty swallowing. He has chronic lung disease and is developmentally delayed. He cannot see in one eye, and the other is misaligned.

Because Axton does not speak, he uses American Sign Language to communicate with his family. Arlisha already knew ASL before Axton was born, as did Axton’s adoring older sisters, Alyssa and Alaia.

At age 2, Axton entered our Child Development Services to address his vision challenges. Because Axton doesn’t talk, Arlisha wondered how much he could see. “I noticed that he never looked in the direction if you pointed,” she says. He bumped into things in his path because he did not see them.

Vilay, a Wayfinder specialist, explained that without vision in one eye, Axton does not have depth perception, so he has difficulty navigating stairs or walking from pavement to grass. He is far-sighted, so objects near him appear blurry.

Vilay taught Arlisha how to use auditory cues like tapping the wall where Axton needs to put his hand to feel his way or tapping the floor where he needs to put his foot. “Tapping has been a big help,” Arlisha says. “With the knowledge that I get from Vilay, I am more equipped to help him.”

Recently, Axton got a belt cane, which is a rectangular frame that attaches to a special belt around his waist. The base of the device slides along the floor in front of Axton so that it encounters obstacles before he does. The belt cane is helping Axton walk independently and safely.

Also, Vilay and Arlisha are teaching Axton to walk down stairs. “That is very helpful since he cannot see his way, or at least not clearly,” Arlisha says. As Axton learns to adapt to his disabilities, he is gaining confidence.

“My hopes for the future are that Axton is safe, happy and accepted. And that he reaches his full potential, whatever that may be,” says Arlisha. “There should be more Wayfinders and more Vilays. Because Wayfinder has made a difference for our family.”


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December 21, 2023