By Lana R. Grasser
Nowadays it appears as though most people, engrossed in a fast-paced society, miss out on the little things in life—the daily sunrise and sunset, light shining through the trees. Alex Bartkowiak, however, always notices when someone enters the room. He cheers up when rays of sunshine beam through his bedroom window. Alex strives to absorb the world around him, and he is legally blind. Upon entering the Bartkowiak household, I was greeted by Alex’s sister, Rachel, and his mother, Maureen. Even with extremely limited vision, Alex was able to tell that I had arrived and greeted me with a friendly wave and big smile. You may be thinking that Alex was aware of my arrival as he heard our greetings, but Alex is also completely deaf. This combination of deaf-blind is due to CHARGE Syndrome, a genetic condition that 21-year-old Alex was born with. Often tricky to diagnose, persons with CHARGE Syndrome are typically recognized by variance in the usual ear shape.
A typical day for Alex involves waking up early between 5:00 and 5:30 a.m. Alex doesn’t always get a good night’s sleep because of variable sleep schedules due to CHARGE. Alex can’t swallow, so he has breakfast through a feeding tube while he is sleeping. A couple of hours later, Alex heads outside to catch the bus. The perfect day for Alex is between 65 and 70 degrees with no wind because his cranial nerves are not formed properly, Alex can’t close his eyes and thus is not a big fan of wind! By 7:15, Alex is off to school. Without vision and sound to help Alex understand the world around him, he can be tactile defensive—abrasive to certain textures and shapes in his environment; because of this, Braille books are not a good fit for him. Instead, Alex loves perusing books that have few words in large font and clear pictures without backgrounds. Although Alex is legally blind, his mother explained that he does in fact have an extremely limited field of vision. He does an incredible job of using his vision to its fullest potential, using his eyes to soak up light and be very aware of shadows, which was how he was able to tell when I had entered his room. His family proudly touts these skills, saying, “Alex does a great job making use of his vision. Sometimes you almost forget that he is legally blind!” He loves things that light up, and his family laughingly told me how much Alex enjoys Lite-Brite boards, taking all of the little pegs out and basking in the beaming white light. In fact, his teachers at school have used light boards to help Alex see what they teach him. Alex attends school at Lamphere Center and is part of a transitional program for high school graduates. His favorite activity is physical well-being, which includes riding stationary bikes. Alex also has a “Skills of Daily Living” class in which students practice making beds, doing laundry, setting a table, and cooking. His academic classes focus on practical topics like managing finances and telling time. His mom jokes that, “Alex’s concept of time is his time!” A hard worker, Alex has several jobs—some at the Lamphere Center and others off-site. One of his favorites is working at the library, rewinding VHS tapes and shredding paper. Alex is currently employed by the Board Office at the Center, where he cleans tables and disinfects doorknobs. Sitting in Alex’s room on a sunny afternoon, I felt very welcomed in his space by his big smile. Together with his caring mother and sister, we enjoyed the sun beaming through the shades and smiled with joy as he cheerfully played with a metallic gold balloon, manipulating its movement to create fun fractals of light bouncing about the room. Alex’s spirit is infectious, and his life is an inspiration to all around him. Growing up with Alex, his sister Rachel has really grown to appreciate learning. “All the kids in [his] environment are really eager to learn, and it makes you realize and appreciate education and how it works and its importance,” she says. Rachel has given her time and talent to working at a theater camp for children with special needs and is currently studying education at Hope College. Alex makes the most out of all that he has in life. His family admits that while it has been tough, they have learned so much from Alex and really grown. Alex sees the world in an extraordinary way, and because of him, I believe that every person who meets him also gets to see the world in a much more unique and special perspective. Since visiting Alex and his family, I’ve found myself lost in the beauty of the afternoon sun shining through the trees along the River Trail on the MSU campus.
Thank you to Alex and the Bartkowiak family for allowing me to visit them at their home to learn more about Alex as well as CHARGE Syndrome. To find out more about this condition, click here.