Now, More Than Ever… Together, We’re Stronger
These resources and strategies are for parents and caregivers of children with Fragile X syndrome.
The most common behavioral challenges seen in FXS include behaviors associated with generalized anxiety, social interaction difficulties (including social anxiety/withdrawal and social aloofness), ADHD (attention deficit hyperactivity disorder), self-injury, and aggression. Addressing these challenges needs to be done with consideration to the person’s level of intellectual functioning, speech/language abilities, and autism (autism spectrum disorder, or ASD) symptoms, if applicable.
Scroll through the various resources below or use the table of contents here to check out the resources to help us all get through this challenging time. We’d also love to hear from you, and you can reach us here (or call us M–F, 9–5 at (800) 688-8765).
FROM OUR STAFF
- Telehealth Visits: Suggestions for Parents on How to Prepare Jayne Dixon Weber, Community Services Director, NFXF
- COVID-19 Check-In: Month 5 Jayne Dixon Weber, Community Services Director, NFXF
- Getting Comfortable Wearing a Mask Jayne Dixon Weber, Community Services Director, NFXF
- Fragile X News with Dan Whiting A special report with Gregg Harper
- Get Moving with Special Olympics’ Fit 5
- COVID-19: My child is home from school or work or a day program! What do I do? Jayne Dixon Weber, Community Services Director, NFXF
- A COVID-19 Social Story from NFXF
- A Message to the Fragile X Community Linda Sorensen, Executive Director, NFXF
FROM BARBARA HAAS-GIVLER
Clinic director at the Geisinger Fragile X Center, Pennsylvania
- Supporting Your Child with Fragile X Syndrome During Special Times
- Masking Kids Booklet (PDF)
- Mask Guide for Families (PDF)
- Emergency Toolkit Guide (PDF)
- Emergency Prep Kids Booklet (PDF)
FROM DEVELOPMENTAL FX
Denver-based nonprofit working with children with a range of learning and developmental disabilities
- The Unregulated Life of COVID-19 is No Laughing Matter With Tracy Stackhouse
- Mindfulness and Me With Tracy Stackhouse & Ruth Meissner
- How To’s of Sensory Diets in Fragile X Syndrome With Tracy Stackhouse
FROM DR. MARCIA BRADEN
Licensed psychologist specializing in children and adolescents, and NFXF Scientific and Clinical Advisory Board member
- Female Power to Fight COVID-19
- How Do We Cope with the Current Circumstances
- When Disappearing Acts Are a Good Thing
- How to Help Your Child Cope with COVID-19
FROM DR. REBECCA SHAFFER
Director of psychological services at the Fragile X Clinic at Cincinnati Children’s Hospital
- Helping Individuals With Fragile X Syndrome Wear a Mask With Dr. Rebecca Shaffer
- How to Prepare for a Telehealth Visit With Dr. Rebecca Shaffer and Dr. Ernest Pedapati
My Child is Home… Now What?? A Webinar Series from Dr. Rebecca Shaffer
Looks like the wearing of face masks is here to stay for a while, so you may as well try to have some fun with it. I know, I know – they are not that fun. But, I did have a parent send me a link to a mask that has a chew cord as part of the mask. I just love how creative people are.
A virtual run/walk is pretty simple. You sign up, then you walk (or run, scooter, skip, bike, whatever you choose!) on September 27, 2020 (or any time before September 27!).
Fragile X News
A Special Report from Gregg Harper
Facebook: Join Dan Whiting — direct from his kids’ tree fort — for Fragile X News as we hear from Gregg Harper, his wife Sidney, and his son Livingston on how they’re getting along during the shelter-in-place orders. Gregg is a former Mississippi U.S. Representative who has diligently advocated for our community throughout the years. His son Livingston has Fragile X syndrome. Running Time: 00:02:07.
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.
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.
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome during challenging times.
Tracy Stackhouse teaches us the importance of self-regulation in individuals with Fragile X syndrome.
In this new recording, Marcia Braden discusses strategies for daily living with COVID-19. She discusses how anxiety can fuel behavior, and she gives ideas on how to set up your day and accommodations you can make to help keep anxiety at a minimum.
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
Timely advice from Jayne Dixon Weber for parents and families asking: What am I going to do with the children all day? How do I get supplies in the house? What if someone gets sick? What if I get sick? What about my work? What if things fall apart at home?