The very first diagnosis Maxwell received was Cortical Visual Impairment. I watched Max lay on a blanket for the first 7 months of his life only looking to his left side, crossing his eyes when he tried to focus, staring at the light, and shaking his head back and forth when he became overstimulated. I took notice that all of his toys were exactly as I had placed them on his blanket. Not one had moved. Not one had been picked up. Not one had been played with.
Maxwell’s MRI showed hypoplasia of his corpus callosum and delayed myelination, which was a clue as to why cortical visual impairment (cvi) was present. Realizing Maxwell was an exceptional kiddo, I began to think that our family would have to move away from West Virginia to give Maxwell the best of care. West Virginia is a beautiful state that comes with the negative stereotype that one must leave the state to seek out resources, jobs, a cleaner environment, etc. I gave into the stereotype. Not proud of that. It wasn’t until I joined a CVI group on Facebook that I received a message from another mom who recommended West Virginia State Department’s website to view tons of research and videos about CVI. She had learned about WV’s website from the Pediatric Cortical Visual Impairment Society Conference. In the CVI world, WV’s State Department website is known for being a great resource for parents and professionals.
I was shocked, and dumbfounded when I discovered West Virginia was actually an excellent place for Maxwell to receive therapy services. The expert in the field, Dr. Christine Roman-Lantzy was the director of the very first certification program for teachers of the visually impaired at Marshall University in South Charleston, WV. Our vision therapist, Patty Myers, was Dr. Roman-Lantzy’s graduate assistant during her time at Marshall University, and after Dr. Roman-Lantzy went to Pittsburgh, Patty became the Director of the program.
CVI is the leading cause of blindness in the western world, and is a neurological disorder. I encourage you to check out this brochure from WV’s State Dept. website for more information on causes, symptoms, etc.: http://wvde.state.wv.us/osp/vi/cvi/cvifact_sheet_brochure.pdf
In Maxwell’s case, his eyes and optic nerve are perfectly formed, but there is miscommunication between Maxwell’s occipital lobe in the brain, and the information coming from his optic nerve. Some of the information gets lost along the way. But here is the best and most crucial part…children with CVI can be taught to see if they have early intervention services.
When Patty Myers came to our home for the first time, she came equipped with the strangest bag of toys I had ever seen. Her bag was filled with gold, red, and silver mylar decorations someone would use for a New Years Eve party. She also brought, a yellow bath mitt, a flashlight, mylar wrapping paper, a plush yellow duck, shiny ribbons, and black material. Patty had me turn off all the lights, close all the blinds, and make the living room quiet. I honestly wasn't sure what was going to happen, so I watched and waited.
Patty held a big, red mylar pom-pom in Max’s field of vision and swirled the flashlight slowly around watching for Max’s reaction to the color red. There was no reaction. She then held a big, gold mylar pom-pom to Max’s left side and swirled the flashlight slowly. We waited, and waited, and then…for the VERY FIRST TIME, MAXWELL LOOKED AT THE POM POM!!! Patty exclaimed he was a “Gold Baby.” I cried, of course. He could see! Kids with CVI generally respond to red or yellow. Our homework was to get Maxwell to look and fixate on gold and yellow objects in his field of vision. Eventually, we were able to work with his left and right side, and different colors until he had no side preference could tolerate viewing multiple colors at once.
When Patty left us that first day, she told us to black out Max’s environment to remove visual clutter because children who have CVI can become overstimulated in a “normal” environment. Lights, colors, noises...everything becomes complex and too much to process. So, my husband Ed developed a visual environment for Maxwell that we still use today to exercise his vision and physical abilities.
Patty came to visit us today, and she excitedly remarked how in a year, Maxwell has started to make strides toward entering the third phase of CVI resolution. Maxwell gives us indication that he can make choices, and can visually recognize targets. We are so thankful for all of our therapists in the Birth to Three Program because each one of them has made a difference in Maxwell’s development. Patty has been critical in helping us understand how to adapt Maxwell’s visual environment, incorporate vision activities daily, complete applications for federal and state programs, as well as accompanying us to an ophthalmology appointment to ensure our doctor understood Maxwell’s condition pertaining to CVI.
West Virginia made funding and education for Cortical Visual Impairment a priority and provided resources so that other professionals may learn, and parents can help their children. Seeing the impact our state and trained professionals like Maxwell's therapy team have made on our son’s development is nothing short of incredible. I am proud to call our Birth to Three therapists family, and I have a new appreciation for my home state. I am even prouder than before to be a West Virginian.