How can you prepare your child for independence?
Transition to independence is challenging and important for all kids, but helping your child make good choices on his own when he or she also has a chronic illness can be complicated. How much independence is too much? At what age do you start planning for transition and allowing your child to make choices? How can we let our kids make their own decisions – and their own mistakes – when the stakes are so high? How can kids learn to self-advocate? What can parents do to help their chronically ill kids be able to listen to their own bodies, and to learn to plan accordingly?
Join us for a special presentation on “Tools for Transition: Gaining independence” with Ann Weaver, patient advocate at Thrive RX, and Dr. Parag Shah, medical director of the Children’s Chronic Illness Transition Team at Lurie Children’s Hospital.
Parag Shah, MD, MPH – Dr. Shah currently serves as the medical director of the Chronic Illness Transition Program at Lurie Children’s Hospital in Chicago, IL. The Program works to provide education to youth and staff regarding transition, advise departments on their transition programs, and conduct some research surrounding transition. Dr. Shah graduated from Albert Einstein College of Medicine and completed his residency training at Children’s Memorial Hospital in Chicago. He currently also works as a hospitalist at LaRabida Children’s Hospital.
Ann Weaver – Ann is a Consumer Advocate for ThriveRx and the parent of a 19 year old son with chronic health issues. She recognizes the importance of providing teachable moments for children growing up with chronic health needs and guiding them to independence. She has advocated for parenteral and enteral consumers as an OLEY volunteer regional coordinator. As an CA she supports HPEN consumers and has developed transition materials for parents of children requiring nutrition support. Ann has presented on transitioning youth on HPEN at OLEY, AGMD and ASPEN. She has shared the perspective of consumer/caregiver at ASPEN and to other professionals, students and industry leaders in the parenteral and enteral nutrition field.
Ann holds an undergraduate degree in Psychology from Illinois Wesleyan University in Bloomington, Illinois.Date: 12/06/2013
Join MitoAction and Dr. Mark Korson, VMP Genetics, as he discusses sick days, navigating the ER as a patient, and the importance/challenges of protocol letters within the mitochondrial disease community.