Tag: Daily Living Strategies

"Reality" Check

by NFXF

  Reality shows have taken over our television programming. Rather than watching fictional characters perform comedic,suspenseful or dramatic scripts, we now observe “real” people compete, struggle, argue and live their lives. These programs entertain us and sometimes attempt to educate us. Various “pop psychology” programs, including Dr. Phil and The Super Nanny, have crossed over



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.



Is Your Child’s Behavior a Manifestation of His Disability?

by NFXF

I have consulted on several cases related to students with FXS being suspended from school because their behavior was believed to be threatening or dangerous to others. The students were suspended until a “manifestation hearing” could be held. Such hearings are required by the Individuals With Disabilities Education Act (IDEA), allowing for further investigation to



Life: A Series of Transitions

by NFXF

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.



“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



Managing Anxiety…What Works And Why?

by NFXF

Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles. The familiar patterns are that their children often have meltdowns during transitions, aggressive behaviors during tantrums or panic-like symptoms in new or unexpected situations.

Over time, parents begin to worry about how they will manage these behaviors or what others will say or think. I often see a pattern develop where parents can anticipate when difficult behaviors will emerge for their children, and they try many different strategies to support their children, but sometimes they feel that what they are doing is not helpful.



Verbal Perseveration! Verbal Perseveration!

by NFXF

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.



Doggone It…Mantras Are Great for Learning!

by NFXF

Mantras, like positive affirmations, really do have power. In our case, we have found mantras to be useful for both skill development and to support self-regulation. So what are mantras? Mantras are short, positive, instructive statements full of action words. We use them to quiet the mind and focus thinking and action.



Anxiety in Self-Advocates: What are the Triggers and What are the Remedies?

by NFXF

Prior to 2014 International Fragile X Conference, several of our top doctors were fortunate to have the opportunity to work with a large group of individuals affected by Fragile X syndrome (FXS). The aim of the workshop was to offer older adolescents and young adults the opportunity to participate in the conference for the first time at these meetings in a stream especially designed for them. Most struggled with educational settings in the past so it was truly an amazing experience to see this group participate with such high levels of concentration and for extended periods of time. They gave thoughtful presentations, asked appropriate questions and responded with great empathy and humor.



Feeding and Fragile X

by NFXF

Many children with Fragile X syndrome struggle with feeding issues, ranging from over-stuffing to picky eating. Mealtime can become stressful for families if these feeding problems exist. This article highlights some common feeding difficulties that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family.