How to Talk About Bladder Exstrophy – Free Webinar Recording
While advances have been made in surgical approaches to the management of exstrophy, less is known about the psychosocial development and adjustment particularly as children and their family’s progress to childhood and adolescence. One of key issues that many parents struggle with is how to talk to others about this condition.
- What happens when my child is invited to a birthday party or sleep over?
- What does my child’s coach need to know about exstrophy?
- How do I help my child handle awkward situations liking changing for gym class or dealing with accidents in school?
Emily Haddad and the late Barbara Neilson share ideas and best practices on how to have these conversations with family, friends, and your medical team in this recording of a live webinar with the A-BE-C community recorded on February 26, 2015.
A tip sheet with five key points from the webinar is available for download.
Each segment of the webinar has been broken down into shorter segments for easier access.
Talking About Your New Baby
Talking with Your Medical Team
Talking with Your Elementary School Aged Child
Talking with Teachers & School Staff
Talking with Your Adolescent
Talking with Your Love Interest
Emily Haddad is the Director of Patient and Family Support in the Department of Pediatric Urology at Cook Children’s Medical Center in Fort Worth, Texas. Ms. Haddad is a licensed clinical social worker.
Haddad received her bachelor of arts in Anthropology and Sociology at the University of Vermont and her master of Social Work at the University of Michigan where she was also an instructor in the Department of Sociology. Haddad trained as a social worker in the NICU at Toledo Children’s Hospital, Toledo, Ohio and in the Department of Urology at the Hospital for Sick Children in Toronto, Ontario.
Emily is passionate about providing services to individuals with Aurogenital defects and their families in collaboration with their medical providers.Emily Haddad is a licensed clinical social worker in pediatric urology.
Barbara Neilson was a clinical social worker in pediatric urology, providing clinical social work services at Sick Kids in Toronto, Ontario for over 30 years.
A pioneer in her field, Barbara raised international awareness to the importance of mental health support for children and adults with complex urological conditions. She touched thousands of lives of patients, families, students and colleagues, with advocacy, education, mentorship, compassion and humor. In 1997, Ms. Neilson started the original bladder exstrophy online listserve support group that provided the first psychosocial support for many families globally. She was a strong supporter of A-BE-C since its inception, and an advocate for her patients and their families.