Stacey E. Tarvin, MD
When Catherine Sherwood-Puzello took her 5 ½ month old daughter to the emergency room in 1996 she only knew one thing – she was worried about her child. After lots of tests and interaction with medical personnel, her daughter, Olivia, was given a diagnosis – lissencephaly. Catherine was educated that lissencephaly is a problem with the formation of the brain that causes a seizure disorder as well as significant developmental and cognitive delays. The doctors said “take your child home and love her” but Catherine already knew how to do that, she wondered “I have this child, now what do I do?” Referrals to social services or ideas about what to expect were not forthcoming at Olivia’s first hospital visit, so when the family returned home Catherine searched for other families with children who had the same disorder. It was through one of those families that Catherine learned about About Special Kids (then, the Indiana Parent Information Network).
Catherine credits the staff at ASK for significantly improving her family’s quality of life. Before Catherine called ASK she was grateful for all of the at-home services provided for Olivia. After speaking with the ASK staff, she realized just how much more help and resources Olivia could receive. The family went from 9 hours of skilled nursing care a week to now 60 hours of skilled nursing care per week. As Olivia got older, Catherine was able to find a school and even a teacher that would come to her home. ASK helped Catherine navigate the confusing insurance system and provided contact information as well as support groups for families of children with similar problems. When asked what has been the biggest change since she contacted ASK, Catherine proudly replies that ASK gave her the tools to become an advocate for her child.
Now eleven years since Olivia’s diagnosis, days can still be challenging for the family even with lots of at-home help. Because of her advocacy towards Olivia’s care and support, Catherine can truly enjoy the time she spends with her daughter instead of feeling like Olivia’s sole caretaker all of the time. “Olivia has taught me to slow down and appreciate things. That might not have been possible without the information and skills provided through ASK.” Catherine says. Catherine is a busy mom. She works, cares for Olivia and her younger sister, and has even found the time to expand her advocacy to lots of children with special needs – she has become a board member for ASK. Without ASK, Catherine and Olivia’s story could be much different; however, the spirit of advocacy instilled in those parents who have worked with ASK insures that Indiana’s children with special needs will receive optimal care and support for a long time to come.