Tag: Fragile X Syndrome

A Holistic Approach to Toilet Training

by NFXF

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.



A Primer on Sensory Integration

by NFXF

  Sensory integration is the ability to organize light, sound, movement, and texture unconsciously and automatically, with no obvious effort. This organization is accompanied by age-appropriate behavior and emotional responses, social engagement, and cognitive reasoning skills, all of which should lead to purposeful work and play. Without sensory integration, children may experience: A need for



Reading, Writing, and Behavior?

by NFXF

With the school more than halfway gone, I am reminded about the significance of appropriate educational supports. In my role as a consultant, I have encountered on numerous occasions a lack of understanding about how important the learning environment is to behavioral outcomes. An interesting study by Symons, Clarke and Roberts (2001) concluded that effectively



Navigating the Road to Inclusion

by NFXF

The emphasis to include students with FXS in general education classrooms has been noted throughout the literature. Perhaps the impetus for this movement comes from the fact that children with FXS have a considerable interest in people—one of the hallmarks of this population is a strong desire to interact socially. This often makes inclusion more viable and increases the success rate.



8 Tips on Transitioning Your Child to Adult Services

by NFXF

Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Although the concept of transition to adult services for concerns such as housing, employment, medical needs, and other general life services may seem straightforward, the process of planning and obtaining adequate care for adults with special needs can be quite complicated. Transition is a multi-faceted and individualized process that involves securing support services that best support the individual’s move to post-secondary education and/or employment, independent living, and community participation.



How to Encourage Play—and Why It Is So Critical for Your Child

by NFXF

We have had the opportunity to visit the homes of many families raising children with Fragile X syndrome (FXS). One of the common sites we encounter is a playroom or play area chock-full of every toy known to man. The parents always remark, “I bought all these toys, but he won’t play with any of them!” This exasperation is likely familiar to many readers.



Behavior Modification in the Classroom

by NFXF

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.



Insight on Evidence-based Medical and Therapeutic Intervention

by NFXF

A discussion for parents of children with special developmental needs about evidence, consensus and anecdotal-based interventions. After more than four decades of working with parents of children with special developmental needs, I’ve learned that they often find it difficult to know what the best approaches or interventions are to help their children. Conflicting statements, recommendations



“Happy Birthday” Meltdowns and Other Behavioral Conundrums

by NFXF

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 it was rather strange and perhaps something unique to this child’s behavioral repertoire. Later, after meeting other families of children



How an Adaptive Physical Education Class Should Be “Run”

by NFXF

One of the best programs that I have ever seen was the Adaptive Physical Education (PE) Class that was in place when my son, Ian, was in high school. It was a wonderful program where people with and without disabilities got to know each other. The program improved the confidence in students with developmental disabilities