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.
When discussing FXS and behavior, the focus should be on the whole person. Some behaviors may be a result of the condition, of which many are positive.
“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.
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.
I realized when my son Ian was just 4 years old that he had difficulty with transitions. I had never thought about transitions being difficult. You just did them - you didn’t think about it. Well, with Ian, I started thinking about them. I still do to this day. I quickly learned I had to allow plenty of time for everything, arrive early to events, set up schedules and routines, take time for transitioning back home—and that was just the beginning.
