Toilet training can be a difficult and challenging experience for children and parents alike, and the challenges can be magnified for families of children with Fragile X syndrome (FXS). It is not simply that toilet training is delayed for these individuals, but it often requires specific behavioral techniques that address the physical and behavioral phenotype of children with FXS.
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! At home, school, after school activities, transition times: VP can have an impact on them all. On the list of questions parents ask, verbal perseveration is at the top.
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?
A client asks: “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 a full mutation, I thought ...
During a recent school consultation, I was reminded of how the behavior of students with Fragile X syndrome is often misunderstood in the classroom. Watching a student with FXS struggle is difficult when his behavior is affected by those characteristics that make up the Fragile X phenotype. (See chart below.) The fact that sensory input is difficult for him to interpret or that his speech production is cluttered and hard to understand or that his learning style is counter to the way teaching is traditionally conveyed may be the very reasons he is acting out or refusing to participate.
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.