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The Unique Challenges for Females with Fragile X Syndrome

By |2020-08-24T18:32:11-04:00Jan 11, 2017|FXS|

Virtually all of my previous columns have addressed in one way or another the behavioral issues of males with Fragile X syndrome (FXS). That is largely because males experience both greater frequency and severity of symptoms. However females with FXS do present a variety of challenges as well so this special, expanded column will be dedicated to addressing some of them.

Visual Wizardry: Using Visual Supports to Change your Child’s Life

By |2016-08-31T11:00:42-04:00Aug 31, 2016|FXS, Support and Resources|

Visual supports help translate the environment and expectations to an individual with FXS without requiring direct processing of language. This type of information can be processed quickly. Visual supports remain present, so they can be referred to more than one time, whereas verbal directions might be heard and then forgotten. Learning to use visual supports can help alleviate anxiety for the person with FXS and frustration for the person providing support.

Public or Private?

By |2017-08-18T13:54:16-04:00Jun 27, 2016|Behavior, Braden on Behavior, FXS, Treatment and Intervention|

How do we prepare children and adolescents to access their communities,without running the risk of their being exploited, or 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?

Guardianship for Your Child

By |2016-05-25T11:00:00-04:00May 25, 2016|Adolescents and Adults, FXS|

At the age of 18, children become legal adults, which means that you – as a parent – are no longer your child’s legal guardian, even if they have Fragile X. In order to continue helping your child take care of his or her self, make decisions in your child’s own best interests and handle their assets, you have to initiate a process of assuming legal guardianship of your child.

The Many Functions of Perseveration

By |2019-07-09T17:24:36-04:00Apr 28, 2016|FXS|

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.

The Magic Continues: Helpful Tool for Children with Fragile X to be Turned into App

By |2016-04-19T16:33:05-04:00Apr 19, 2016|FXS, Technology|

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.

Talking with Your Children about Fragile X: Why, How, and When?

By |2016-03-30T12:35:03-04:00Mar 30, 2016|FXS|

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.

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