Children with and without Fragile X syndrome learn to maneuver their environments in order to survive and thrive. In order to discern whether a behavior is oppositional, or merely a reaction to anxiety, pay attention to your reaction.
Raising a child with special needs is challenging enough for an individual. When you factor in a relationship, the challenges increase, and the consequences for not caring for yourself and your relationship are more significant.
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?
Anyone who lives with a person with Fragile X is very familiar with this continuation of a repeated word or phrase. This repetition can be maddening when you are the recipient. At face value, perseveration has no redeeming features and simply serves as an irritant, but in the life of one with Fragile X syndrome (FXS), it can be a valuable asset. Perseverative verbiage often accompanies arousal and acts as a buffer to reduce the anxiety. The repetition can be comforting like a mantra or song.
In 2014, Sarah Moelis and her brother, Ben, exhibited "The Magic Arrows," a game that Sarah, Ben, Hailey Silver and J.D. Gebbia invented. The game helps children with Fragile X syndrome organize their daily activities, easing the anxiety often triggered by transitioning from one activity to another. Sarah is on-course to unveil the commercial release of "The Magic Arrows" app before the start of conference. Sarah is looking for volunteer families who are part of the Fragile X community to be part of a limited test group this June. Volunteers will use the 1.0 version of the app and provide feedback.
When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.
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.
The last two years have been tough for Fragile X (FX) research. Many of us in the greater Fragile X community believed that drugs capable of reversing the core symptoms of FX were sitting on [...]
I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase [...]
When children with FXS enter the relationship, married couples must adapt to their new roles while trying to stay connected as lovers and partners. Diane Smith gives us some pointers.
Learning to ride a public bus independently is a skill that many children with Fragile X syndrome (FXS) will be able to learn. Take it slow, focus on safety and routine, and guide them to independence.
Developmental FX joins us to provide insight and advice on Fragile X and its connection to autism and behavior.
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 [...]
