Toileting Strategies and Supports Across the Lifespan, Part A

November 18th, 2023

Dr Jennifer Epstein PsyD., licensed psychologist, webinar recording (1 of 2 in the series), 18 November 2023.

Communication, sensory, motor, physiology & cognitive delays are commonly associated with Fragile X syndrome. These delays can pose challenges for building toileting skills in childhood and retaining those skills throughout life.

In this series Dr Epstein aims to help parents and carers understand the type of approach to toileting skill development that may be most successful for their child or adult, based on individualised factors. Dr Epstein also shared data from the US FORWARD Study which illustrates toileting skill development trajectories for female and male children with Fragile X syndrome, from early childhood to teens.

Part A focusses on support strategies for children to the age of 10.   Part B focussed on support strategies for older children and adults (2 December 2023.)

Dr Epstein is co-founder of South Shore Psychological Services in the US (Massachusetts). She is a regular presenter for the National Fragile X Foundation in the US, and has many years of experience in Fragile X clinics and supporting individuals with Fragile X syndrome in her practice.

Watch the video recording of the webinar on our youtube channel: https://youtu.be/_tMEo5bIuRM

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Survey for parents / carers of adults with Fragile X syndrome

FRAGILE X | ADULTS & AGEING. We're undertaking the first Australian study on the support needs, health & wellbeing of ADULTS with Fragile X syndrome. Our goal is to enhance quality of life for adults with Fragile X syndrome as they age. We invite parents or carers to participate in our SURVEY. The survey has questions about: 1. GENERAL HEALTH AND WELLBEING of the adult with Fragile X syndrome. 2. EFFECTIVENESS OF EXISTING SUPPORTS for the adult with Fragile X syndrome as they age. 3. FUTURE PLANNING concerns of families & carers who provide support 4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care. From the information contributed through the Survey we will develop training modules for frontline carers and tools for advocacy. The Survey can be completed ONLINE, in PAPER FORM, or by PHONE. Contact us for more information - support@fragilex.org.au or 1300 394 636

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