Now, More Than Ever… Together, We’re Stronger

Now, More Than Ever ... Together We're Stronger logoThese 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

FROM BARBARA HAAS-GIVLER
Clinic director at the Geisinger Fragile X Center, Pennsylvania

FROM DEVELOPMENTAL FX
Denver-based nonprofit working with children with a range of learning and developmental disabilities

FROM DR. MARCIA BRADEN
Licensed psychologist specializing in children and adolescents, NFXF Scientific and Clinical Advisory Board member

FROM DR. REBECCA SHAFFER
Director of psychological services at the Fragile X Clinic at Cincinnati Children’s Hospital

My Child is Home… Now What?? A Webinar Series from Dr. Rebecca Shaffer

NFXF Executive Director Linda Sorensen

A Message to the Fragile X Community

NFXF Executive Director Linda Sorensen: I hope you are well, taking care of yourselves, and finding a way to connect with people you love. With most of us staying at home now, we’re committed to providing you with the most timely and meaningful educational resources we have available. READ

NFXF Executive Director Linda Sorensen

COVID-19

My child is home from school or work or a day program! What do I do?

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? READ

Barbara Haas-Givler

Supporting Your Child with Fragile X Syndrome During Special Times

Barbara Haas-Givler, clinic director at the Geisinger Fragile X Center in Pennsylvania, 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. She discusses the importance of taking care of yourself first (like when the flight attendant tells you to put on your oxygen mask before helping others), day-to-day strategies like schedules, social stories, activities, and more. Take 17 minutes to listen — it is worth your time. WATCH

3 New Videos From Developmental FX

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.

Dr. Marcia Braden: Helping You and Your Child Cope

From the fabulous Dr. Marcia Braden — licensed psychologist specializing in children and adolescents, author, NFXF Scientific and Clinical Advisory Board member, former teacher, and more — we have some of her expert advice plus a new video about how anxiety can fuel behavior, ideas on how to set up your day, and accommodations you can make to help keep anxiety at a minimum.  A must watch.

Dr. Marcia Braden

How Do We Cope with the Current Circumstances

Behavior serves a purpose and function — during this time, the function may be to express protest to changes and uncertainty.

In this video, Dr. Braden speaks directly to the Fragile X community and wants us all to know that if you do not address the cause of the behavior, it will not change. WATCH

When Disappearing Acts Are a Good Thing

You may have experienced a disappearing act, yet behavior can be misunderstood and often punished because we don’t recognize its function for the child. Learn more about recognizing the signs of hyperarousal and the role of self-removal. READ

How to Help Your Child Cope with COVID-19

The answer is: Be honest and keep a schedule. But how? Find out with more tips and resources from Dr. Braden, including downloadable social story and visual schedule templates, to help you and your children during the COVID-19 pandemic. READ

Rebecca Shaffer on a monitor appearing in a YouTube video

From Dr. Rebecca Shaffer

Rebecca Shaffer, PsyD, director of psychological services at the Fragile X Clinic at Cincinnati Children’s Hospital, was right there to help when we needed her.

How to Prepare for a Telehealth Visit

Drs Shaffer and Ernest Pedapati (also from Cincinnati Children’s Hospital) tells us how to prepare for a telehealth visit, including behavioral checkups. WATCH

My Child is Home… Now What?? A Webinar Series from Dr. Rebecca Shaffer

Her new series of videos, My Child is Home… Now What???, says it all. There are more to come over the next few weeks. In the meantime, check out all the extras she’s offering (downloads) with her Play Skills video.

Webinar Playlist

My Child is Home… Now What?? Play Skills

In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.

A boy wearing a face mask and a sick girl standing 6 feet away

A COVID-19 Social Story from NFXF

What is COVID-19 and ​What Does It Mean to Me?

The National Fragile X Foundation has created a social story — What is COVID-19 and ​What Does It Mean to Me? — 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. While we can’t address everything going on in your life, we hope this can help in some small way. READ

Computer monitor image by mmi9 from Pixabay