Please Donʼt Poo Poo This Article
This is one more story about children who do not want to go poo … in the toilet. It is probably not for the faint of heart, though it does make you realize that you will do anything for your children.
Education and Fragile X Syndrome
Children whose development is affected by Fragile X syndrome are eligible for special education services. Part C of the Individuals with Disabilities Education Act (IDEA), a federal law, provides for services to children from birth [...]
Reasons to Visit a Clinic
While every Fragile X clinic is set up a little differently, they all offer similar services. They are staffed by people who understand Fragile X. Examples of evaluations offered at clinics through an initial intake include: medical, [...]
Planning Your Visit to a Fragile X Clinic
Why should you visit a Fragile X clinic? Because you won’t hear, “Fragile what?” You will have the opportunity to meet with a team of people who will be able to provide guidance in many [...]
Home Schooling and Fragile X
Whether you have decided to home school your child for a year or for an extended period, developing a curriculum can be a challenge. Start by setting goals for your child, research and experiment [...]
Early Intervention for Infants and Toddlers with Fragile X Syndrome
The Early Intervention Process The Early Intervention Program for Infants and Toddlers with Disabilities is the program known as Part C of the Individuals with Disabilities Education Act (IDEA). It is also known as [...]
Lesson Planning Guide
Download the Lesson Planning Guide A Practical Approach for the Classroom This guide is intended for classroom teachers who may have little or no exposure to Fragile X syndrome (FXS). Our goal is to help [...]
Planning for Emergency Events at School
With the anxiety and hyperarousal seen in children with Fragile X syndrome, it is important to plan for emergency events at your child’s school – a fire in the building and severe weather events, such as a tornado, a hurricane, a local fire, a chemical spill, etc. Lockdowns are discussed separately. If at all possible, develop a plan ahead of time, ideally at your child's IEP. If that is not possible, ask for a meeting to discuss this first thing of the school year.
A Holistic Approach to Toilet Training
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.
Video Modeling
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 our practice and making them work for individuals with FXS.
Common Feeding Difficulties and How to Make Mealtime More Successful for Your Fragile X Family
Kristin Burgess Watson highlights some common feeding difficulties ranging from over-stuffing to picky eating that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family.
Toilet Training the Older Child
Toilet training continues to be an important issue for families who have children with Fragile X syndrome. There is hope for older children, but they require a different approach to toilet training.
Public or Private?
How do we prepare our children to access their communities, without the risk of their being exploited, 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?
Getting and Keeping a Job
It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.
Adapting Autism Interventions for Fragile X Syndrome
Fragile X experts Sarah K. Scharfenaker and Tracy Stackhouse discuss how to adapt autism interventions for those with Fragile X syndrome.