Cortical Visual Impairment with The Red Balloon Foundation
(https://www.theredballoonfoundation.org.za)
June 26, 2024
Christine Roman Lantzy, Ph.D.
Director, Pediatric VIEW Program, The Children’s Home of Pittsburgh
Currently mid-week-two of the comprehensive CVI trainings. This week brings a series of workshops designed to concentrate on various topics including: CVI Overview, A Day for Parents, Bringing the CVI Range to Action, Literacy & Numeracy, and Phase III CVI. Participants from the surrounding regions can sign up for one or all the sessions except for the Parent Workshop which was open only to parents and their family caregivers. Anyone who knows me will be aware that the parent day was a favorite. No matter where I have had the privilege of teaching about CVI, I have come to learn that parents share the same goal of having their child have an opportunity to have a full, rich life. That may be defined slightly differently in dissimilar cultures, but the overarching goal is a shared one. Our workshop included parents of children in Phase I, II, and III. Some of their stories were gut-wrenching but I believe it was invaluable for the attendees to be surrounded by shared experiences that only they can understand. Our organizers, Terry and Antoinette are also parents of children with CVI, and they understood the need to have this session be closed to providers. This was a family-only day.
(Families sharing their experiences and describing their hopes and dreams.)
Lindsay and I have now spent 11 overnights here at The Eagle’s Nest Center. It has become a place of routines that are no longer novel. We start each morning with breakfast cooked for us by Batson who greets us with a gracious smile. He has come to memorize our breakfast choices, but he asks for our order like each day is the first. He is a staple here and can be found conducting many tasks beyond the kitchen. Thank you, Batson.
The proprietor of our lodging is Helen. She never has a day off and manages everything from the trimming of the foliage to turning on of the generator. She seems to be everywhere at once and I believe her friendly manner is in partnership with a tough-as-nails sense of order and operation. Helen has not missed a day to comment on the fact that I am not wearing a winter coat.
(Helen and Batson)
Lindsay and I are invited to dinner this evening. I look forward to a social time away from the conference center. I also enjoy seeing the homes and neighborhoods in our part of Johannesburg. I have mostly seen individual homes that are surrounded by high walls, with security cameras, and electronic gates. I have felt safe, that is for sure. But I also comply with the boundaries that have been our directive. Antoinette and Terry know best.
(Heed the warning.)
CVI Workshop 2024 Agenda Week 1
CVI Workshop 2024 Agenda Week 2