Therapy is a fun, creative process – one of the reasons that we have been at this for so long! One of the challenges of being a therapist is staying on-top of the ever-emerging intervention techniques that come into practice. Not only is it important to know the best strategies available, but it is important to carefully analyze each technique for its utility and efficacy. As most strategies are typically devised or targeted at a population other than those with Fragile X syndrome (FXS), we have taken it upon ourselves to always analyze the strategies in light the FXS learning style. Most often we find it necessary to modify even the most researched interventions to work for individuals with FXS.
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.
Toilet training continues to be an important issue for families who have children with Fragile X syndrome. Several articles on the topic have appeared in previous publications. They mostly focused on introducing toilet training activities to younger children. It has been assumed that children of all ages would benefit from the same strategies, and if they were not initially successful with them, they may never make progress in toilet training. Experience has shown these assumptions to be inaccurate. There is hope for older children (from about age eight and up), but they require a different approach to toilet training. This article addresses strategies found to be most successful in this population.
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?
Creating an IEP – or Individualized Educational Program – can be an incredibly confusing and daunting experience. The “alphabet soup” of acronyms and legalese often increases the anxiety and uneasiness for families. There are often »
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 »
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.
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 »
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.