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, and 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

Webinars

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

  • Soda bottle

COVID-19 Check-In: Month 5

Aug 1, 2020|

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.

  • Dr. Braden and 4 females all wearing lanyards

Female Power to Fight COVID-19 with Marcia Braden

May 8, 2020|

Dr. Marcia Braden asked females living with Fragile X syndrome to give advice to other females living with FXS on how to cope with this — and 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 boy in a mask, a girl without who's coughing.

A COVID-19 Social Story from NFXF

Apr 27, 2020|

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.

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.

  • Children on a laptop computer

How to Prepare for a Telehealth Visit

Apr 24, 2020|

Drs Rebecca Shaffer and Ernie Pedapati tell you how to prepare for your telehealth visit, including behavioral checkups. They are with Fragile X Clinic at Cincinnati Children's Hospital. Their advice is applicable to all visits.

  • Marcia Braden, PhD

How Do We Cope with the Current Circumstances

Apr 14, 2020|

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.

  • Boy using crayons

How To’s of Sensory Diets in Fragile X Syndrome

Apr 13, 2020|

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. 

  • Child stacking Legos

My Child is Home… Now What?? Play Skills

Apr 7, 2020|

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.

  • Boy hiding under cushions on a sofa

When Disappearing Acts Are a Good Thing

Apr 2, 2020|

Behavior can often be misunderstood and punished because the parent or caregiver doesn’t recognize its function for the child. Caregivers must look behind the behavior to learn what they’re trying to communicate.

  • Boy with Yeti Files book, grinning

My Child Is Home… Now What? Managing Behavior

Apr 1, 2020|

In this webinar, Rebecca Shaffer walks us through what your child is telling you, strategies to prevent the behavior, reinforcing good behaviors, and building new skills.

  • Little Superman in triplicate

How to Help Your Child Cope with COVID-19 

Mar 31, 2020|

Dr. Marcia Braden provides tips and resources, including social story and visual schedule templates, to help you and your children during the COVID-19 pandemic.

  • Rebecca Shaffer

My Child is Home… Now What? Keeping a Routine

Mar 25, 2020|

In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.