Supporting Your Child with Fragile X Syndrome During Special Times

Barbara Haas-Givler, BCBA, is the clinic director at the Geisinger Fragile X Center in Pennsylvania. She took the time to share some thoughts, tips, and methods for caregivers on supporting your child with Fragile X syndrome during special times, like the COVID-19 response. Starting with taking care of yourself first (like when the flight attendant tells you to put on your oxygen mask before helping others) to day-to-day strategies like schedules, social stories, activities, and more. Take 17 minutes to listen — it is worth your time.

Here are some additional resources:

After watching the video, please let us know if you have any questions by filling out the form below. Jayne will try to answer as many as she can and/or it may forward them to Barb. 

MORE COVID-19 RESOURCES

COVID-19 Check-In: Month 5

What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.

Getting Comfortable Wearing a Mask

Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.

Female Power to Fight COVID-19 with Marcia Braden

Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.

A COVID-19 Social Story from NFXF

The National Fragile X Foundation has created a social story to reflect the changing requirements that governments are enacting. There’s a lot of information — and misinformation — about COVID-19 out there, but there’s no doubt it’s impacted families in many, many ways.

Load More Posts