Meet an Inspiring Wayfinder Family
“Tatsiana is a joy,” says Pam Chapin, program director and vision impairment specialist with Wayfinder’s Blind Babies Foundation program in Northern California. “No one can meet her without falling in love with her.”
“I love Pam,” says Tatsiana, mother of Sofia, who was in our Blind Babies Foundation program for two-and-a-half years. “Pam was supportive and gave me advice.”
Strong bonds often develop between the family of a child with disabilities and their vision specialist. “You are on a journey with the family,” says Pam. “It is the most challenging experience of their life. You witness such strength in families, such love for their children, such devotion and dedication.”
The journey began for Tatsiana and her husband when Sofia was just a few months old. “We saw she couldn’t pick up her head,” Tatsiana says. “We knew something was wrong.” At 4 months, Sofia went into the hospital with what is, for most children, a common respiratory virus. But Sofia could not eat properly and was on a ventilator for eight days. “We almost lost her,” Tatsiana remembers.
Initial tests did not provide any answers about the underlying cause. It took a year before the family learned that Sofia’s disabilities were caused by a random gene abnormality so rare that fewer than 50 people in the world have it. In addition to other neurological disabilities, Sofia’s brain cannot properly process information from her eyes.
When Sofia was 6 months old, Pam began making twice-monthly home visits. Even without knowing the underlying medical cause, vision specialists from Wayfinder can begin solving the puzzle of how to communicate with a child with multiple disabilities. “In those early days, we used infant massage to see how Sofia would respond,” Pam explains. “What cues was Sofia giving that she liked or didn’t like something?”
Together, Pam and Tatsiana sought ways to connect with Sofia. Pam tried sensory play and found that Sofia could see shiny, lighted or colorful objects. Tatsiana noticed Sofia reacting to high-contrast black-and-white images. Sofia also liked tactile books that she could feel with her fingers. Pam brought in assistive technology, like a button Sofia could push to turn on Christmas lights or produce a sound. More and more, they learned the meaning of Sofia’s facial expressions and sounds.
Their relationship grew even stronger when Sofia entered the hospital for a procedure. “Pam went to see Sofia in the hospital,” says Tatsiana. “Even in the hospital, Pam was there.”
Now nearing age 4, Sofia attends preschool, where she receives visual, physical, occupational and speech therapy. Tatsiana updates Pam on Sofia’s progress, and the family attends the annual Beeper Egg Hunt and Family Camp to connect with Wayfinder staff and families. The loving, caring bond between Pam, Tatsiana and Sofia—forged on a challenging journey—will last a lifetime. •
September 4, 2019