Episode 260: Dr. Theresa Bartolotta: Supporting AAC for People with Rett Syndrome
This week, Rachel interviews Dr. Theresa Bartolotta, an SLP who is a parent to Lisa, a young girl with Rett syndrome. Dr. Bartolotta is co-author of the recently published Rett Syndrome Communication Guidelines and serves as consultant on communication to the International Rett Syndrome Foundation (ISRF). Dr. Bartolotta shares about putting together the Rett Syndrome Communication Guidelines, her journey as a parent of a child with Rett, and the IRSF’s mission to spread the word about Rett to more SLPs, teachers, and families.
Before the interview, Rachel and Chris chat about Chris’s GIPHY.com channel, using GIFs to do a deep dive into a client’s specific interests, putting together your own collection of GIFs to use in therapy, and more!
Key ideas this week:
🔑 Rett Syndrome is a genetic disorder caused by an X-linked genetic mutation that affects multiple systems. Communication is usually affected, and people with Rett are typically nonspeaking.
🔑 People with Rhett syndrome often have difficulty regulating their bodies, and go in and out of being overstimulated and understimulated. The Rett Syndrome Communication Guide includes information on how to recognize when someone with Rett is overstimulated (or understimulated), and how to get them back to a regulated state.
🔑 It was important for Dr. Bartolotta to put together the Rett Communication Guidelines, because Rett is such a low-incidence disorder. An SLP working in the schools, for example, might only come across Rett once or twice in an entire career. By providing more information in one place, it can help bridge the knowledge gap for people new to treating Rett.
Links this week:
Chris’s GIF channel on GIPHY: https://giphy.com/channel/christopherbugaj
Rett Syndrome Communication Guidelines https://www.rettsyndrome.org/communication-guidelines/
International Rett Syndrome Foundation rettsyndrome.org
Free professional development webinar series about Rett by the IRSF: https://www.rettsyndrome.org/for-communication-professionals/
Safe Harbor: A Podcast for Parents of Children with Disabilities: https://www.buzzsprout.com/1909282