I have found these 10 time-out “rules” to be the keys to success. They are based on the fundamental principles and incorporate adaptations for children with Fragile X syndrome by accommodating repetition, consistency, and predictability.
Several strategies can help in guiding a successful transition. Though if the student changes schools, neighborhoods, or programs, additional support is required.
I learned pretty quickly that visits to a dentist were going to be a challenge for my son, Ian. I demonstrated the process over and over again. I helped him brush his teeth, encouraged him to brush his own teeth, tried different toothbrushes and toothpaste. I needed Bonnie.
Mantras, like positive affirmations, really do have power. Mantras are short, positive, instructive statements full of action words. We use them to quiet the mind and focus on thinking and action.
The challenges of toilet training can be magnified for families of children with Fragile X syndrome. It's not simply that toilet training is delayed, it often requires specific behavioral techniques that address their physical and behavioral phenotypes.
Let's discuss verbal perseveration (VP), a very typical and pervasive aspect of language in Fragile X syndrome. Does VP interfere with daily living and activities? You bet your boots it can!
Behavior management continues to be of tremendous importance to parents and professionals and understanding the etiology of behavior in people with Fragile X syndrome is critical when creating proactive strategies to successfully manage that behavior.
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.
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.
