An at-a-glance resource, combining our professional expertise plus insights and perspectives of families from the NFXF community based on their personal, first-hand experiences with the IEP process.
“Why does my child cry when people sing ‘Happy Birthday’ to her?” Many years ago when I first heard this from a parent of a girl with FXS, I thought it was rather strange and perhaps something unique to this child’s behavioral repertoire.
We often remind fellow interventionists and educators time and time again about the many unique aspects of Fragile X syndrome as well as the resources available online and in print.
Direct questions are typically the way we try to engage people in conversation. For children with FXS, we need to learn other strategies. It is critical to understand why it is so difficult for children with FXS to understand and respond to these questions, before we get to the how of getting answers.
One of the common sites we encounter when visiting a child's home is a play area chock-full of every toy known to man, yet they won’t play with any of them. This exasperation is likely familiar to many of you.
Before school authorities consider suspension and possible expulsion, they need to determine whether threatening someone may have been the only way that the person with Fragile X syndrome could express the gravity of their personal discomfort.
Best practice for those affected with FXS means providing a learning environment that allows them to access the curriculum in ways that minimize their disruptive behaviors.
The NFXF is pleased to see the recent publication of Newborn, Carrier, and Early Childhood Screening Recommendations for Fragile X in Pediatrics, the official Journal of the American Academy of Pediatrics.
Acamprosate, a drug used to treat alcohol abuse, improves communication and social behaviors associated with a common form of autism. IU autism researcher Craig Erickson, MD, will discuss his ongoing study of acamprosate and Fragile [...]