Tag: Education

Published: Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X

by NFXF

The NFXF is pleased to see the recent publication of “Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X” in the prestigious “Pediatrics: Official Journal of the American Academy of Pediatrics.” At the urging of the CDC, and with their support, the NFXF’s genetics specialist, Liane Abrams, organized and contributed to a year-long effort,



Reading, Writing, and Behavior?

by NFXF

With the school more than halfway gone, I am reminded about the significance of appropriate educational supports. In my role as a consultant, I have encountered on numerous occasions a lack of understanding about how important the learning environment is to behavioral outcomes. An interesting study by Symons, Clarke and Roberts (2001) concluded that effectively



Navigating the Road to Inclusion

by NFXF

The emphasis to include students with FXS in general education classrooms has been noted throughout the literature. Perhaps the impetus for this movement comes from the fact that children with FXS have a considerable interest in people—one of the hallmarks of this population is a strong desire to interact socially. This often makes inclusion more viable and increases the success rate.



Is Your Child’s Behavior a Manifestation of His Disability?

by NFXF

I have consulted on several cases related to students with FXS being suspended from school because their behavior was believed to be threatening or dangerous to others. The students were suspended until a “manifestation hearing” could be held. Such hearings are required by the Individuals With Disabilities Education Act (IDEA), allowing for further investigation to



8 Tips on Transitioning Your Child to Adult Services

by NFXF

Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Although the concept of transition to adult services for concerns such as housing, employment, medical needs, and other general life services may seem straightforward, the process of planning and obtaining adequate care for adults with special needs can be quite complicated. Transition is a multi-faceted and individualized process that involves securing support services that best support the individual’s move to post-secondary education and/or employment, independent living, and community participation.



Behavior Modification in the Classroom

by NFXF

During a recent school consultation, I was reminded of how the behavior of students with Fragile X syndrome is often misunderstood in the classroom. Watching a student with FXS struggle is difficult when his behavior is affected by those characteristics that make up the Fragile X phenotype. (See chart below.) The fact that sensory input is difficult for him to interpret or that his speech production is cluttered and hard to understand or that his learning style is counter to the way teaching is traditionally conveyed may be the very reasons he is acting out or refusing to participate.



Understanding the Fragile X Learning Style for Better Results

by NFXF

“Siri, what is Fragile X syndrome?” She answers with: “I’m checking….here’s what I found.” She then provides links to the Wikipedia site definition of Fragile X, the NIH genetics home reference page on Fragile X and medicinenet page on Fragile X syndrome (FXS).



How an Adaptive Physical Education Class Should Be “Run”

by NFXF

One of the best programs that I have ever seen was the Adaptive Physical Education (PE) Class that was in place when my son, Ian, was in high school. It was a wonderful program where people with and without disabilities got to know each other. The program improved the confidence in students with developmental disabilities



OT, SLP, AT & the IEP… Making Sense of the Alphabet Soup

by NFXF

Creating an IEP – or Individualized Educational Program – can be an incredibly confusing and daunting experience. The “alphabet soup” of acronyms and legalese often increases the anxiety and uneasiness for families. There are often many professionals in the room, some just popping in and out during the meeting, and families can feel isolated and



Planning for Emergency Events at School

by NFXF

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.



Lesson Planning Guide

Download the 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 the teaching and learning environment from preschool through high school more effective, more efficient, and more rewarding for teachers and the