Stopping the Stuffing
Mouth stuffing, by Mouse or anyone else, is an overfilling of the mouth with the selected food. For kids with FXS, it is usually an adaptive means of trying to succeed with eating.
How is Fragile X syndrome inherited?
This infographic and two-minute tip video answer the question, How is Fragile X syndrome inherited. It is one of the most common questions about Fragile X.
Back to School Resources for Parents (and Teachers) of Fragile X Students
For the 2019 school year, we compiled our most popular school and education resources for parents and teachers.
Lets Talk Married with (Fragile X) Children
Many parents may worry that even the strongest marriages may buckle—or worse—under the intense demand of raising a child with special needs. Licensed marriage and family therapist Diane Simon Smith tackles this topic for couples raising children with Fragile X syndrome.
Medications for Fragile X Syndrome: Webinar with Dr. Craig Erickson
On Monday, October 29, 2018, Dr. Craig Erickson conducted his 6th annual webinar on medications for Fragile X syndrome. He discussed some ongoing studies and trials and then took questions for listeners about a variety »
Back-to-School Articles
Here is a compilation of NFXF articles to help you and your children with Fragile X syndrome with school, from lunches to IEPs to hyperarousal. Every child is different, and you will find something »
FXS By Age Group Resource
We have just launched a new web tool - Fragile X syndrome resources, categorized by age group. The goal of the tool is to give parents, caregivers, educators, family members, etc. a one-stop-shop to find »
Where is the Hope?
A grandmother of a newly diagnosed grandson once called me to talk about the diagnosis. “Where is the hope?” she asked. I did not say anything to see if she would go on. “I mean, »
Education and Fragile X Syndrome
Children whose development is affected by Fragile X syndrome are eligible for special education services. Part C of the Individuals with Disabilities Education Act (IDEA), a federal law, provides for services to children from birth »
Home Schooling and Fragile X
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 »
Lesson Planning Guide
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 »
Raise Fragile X Awareness with Our Printable Cards
Have you ever been in a situation where you needed a quick way to explain Fragile X to a stranger or acquaintance? Maybe there is an incident at the grocery store and some people begin »
Planning for Emergency Events at School
With the anxiety and hyperarousal seen in children with Fragile X syndrome, it is important to plan for emergency events at your child’s school – a fire in the building and severe weather events, such as a tornado, a hurricane, a local fire, a chemical spill, etc. Lockdowns are discussed separately. If at all possible, develop a plan ahead of time, ideally at your child's IEP. If that is not possible, ask for a meeting to discuss this first thing of the school year.
Best Practice in Educational Strategies and Curricula
Finding the most effective interventions for students with Fragile X syndrome (FXS) can be difficult and often results in a “trial and error” approach. Even though a number of strategies have emerged and have been documented in the literature, the evidence-based interventions are limited. Promising outcomes are continuing to develop using the cognitive phenotype to better understand how to best teach students with FXS.
You Are Never Too Old to Wear a Pink Tutu…and Other Lessons Our Son Has Taught Our Family
Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. We had the good fortune of being able to meet with Dr. Randi Hagerman and Amy Cronister, a genetic counselor, the week after we received our diagnosis. I also remember meeting Mouse and Tracy. They were all working in Denver at the time. My take-away from that initial appointment was I realized this was a big deal, and it was not going to go away. In hindsight, I had no idea about the magnitude of the people I was meeting. My head was spinning.
