How do we prepare our children to access their communities, without the risk of their being exploited, showing affection in inappropriate ways, using sexual language that may be misconstrued, or touching body parts that could bring legal action or, at the very least, a disgruntled public?
It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.
Fragile X experts Sarah K. Scharfenaker and Tracy Stackhouse discuss how to adapt autism interventions for those with Fragile X syndrome.
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.
One of the most challenging things for my son, Ian, to do is ask another person (not mom or dad) for something — like a favor or request — in an appropriate way. This [...]
An adaptive physical education class like this one set up in your school would be a wonderful program that every student could benefit from.
“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.
A discussion for parents of children with special developmental needs about evidence, consensus and anecdotal-based interventions.
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.
Watching a student with FXS struggle is difficult when their behavior is affected by those characteristics that make up the Fragile X phenotype.
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.
