Carrier Related Issues: Learning How to Self-Regulate to Support Your Child This conference is designed specifically for Fragile X carriers and their partners to learn how Fragile X may impact individuals and their families. The information [...]
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
As part of the NFXF’s ever-increasing focus on services for adults, we are pleased to bring you this 30-minute slide and audio presentation by Dr. Marcia Braden, titled, “Moving from Pediatrics to Adult Care.” [...]
Why should you visit a Fragile X clinic? Because you won’t hear, “Fragile what?” You will have the opportunity to meet with a team of people who will be able to provide guidance in many [...]
Whether you have decided to home school your child for a year or for an extended period, developing a curriculum can be a challenge. Start by setting goals for your child, research and experiment with [...]
NN107 FX-LEARN is currently looking to enroll children with Fragile X Syndrome (FXS) for a research study conducted by the Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT). Dr. Elizabeth Berry-Kravis at Rush University is [...]
A Practical Approach for the Classroom This guide is intended for classroom teachers who may have little or no exposure to Fragile X syndrome (FXS). Our goal is to help make [...]
Vanderbilt University Medical Center Do you have an adolescent child diagnosed with Fragile X syndrome or Angelman syndrome? We Need: Either two females, or one male and one female, ages [...]
Several strategies can help in guiding a successful transition. If the student is going back to the same school with the same teaching staff, the transition process is easier and requires less support. When the student changes schools, neighborhoods, or programs, additional support is required.
Your son or daughter is moving out! Is it a parent’s dream? For many, yes, but… You have given your child your best of everything for his whole life. You have given [...]
This presentation will provide an overview of executive functioning skills and deficits. There will be a discussion of how EF deficits affect schoolwork, social skills and daily living skills. The emphasis will be on describing and selecting practical strategies to teach school-aged girls with fragile X who have executive functioning deficits.
Some families may not want their child to live in a home/facility that is offered by the local disability organization.
Mantras, like positive affirmations, really do have power. In our case, we have found mantras to be useful for both skill development and to support self-regulation. So what are mantras? Mantras are short, positive, instructive statements full of action words. We use them to quiet the mind and focus thinking and action.
Toilet training can be a difficult and challenging experience for children and parents alike, and the challenges can be magnified for families of children with Fragile X syndrome (FXS). It is not simply that toilet training is delayed for these individuals, but it often requires specific behavioral techniques that address the physical and behavioral phenotype of children with FXS.