Category: Treatment and Intervention

FXS By Age Group Resource

We have just launched a new web tool – Fragile X syndrome resources, categorized by age group. The goal of the tool is to give parents, caregivers, educators, family members, etc. a one-stop-shop to find curated resources appropriate what they need, from pre-conception through adulthood. The resources are a combination of practical guides, documents to



Ten Rules of Time-Out

When consulting with parents regarding behavior issues, the topic of time-out comes up during the majority of my conversations. Parents and professionals alike have used time-out as an effective tool for many years—even before it was called time-out. Research has supported its usefulness with typically developing children as well as those with delays such as

Toilet Training Child With Fragile X Syndrome: An Overview and Guide

Toilet training the child with Fragile X syndrome (FXS) often, but not always, takes the same form as it does with other children. It starts with the basics: Parents may need to teach their child about “wet” and “dry” (applied to both urination and bowel movements). When checking your child’s diaper, let him know what

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 to 3 years of age. Part B of IDEA mandates a free public education for children who qualify from the

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, speech, occupational, physical and behavioral therapy, and genetic counseling. Additional specialist services may include referrals to psychiatrists, psychologists, neurologists, cardiologists,

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 areas of raising your child or children. Just as importantly, once you establish a relationship with the Fragile X doctor,



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 with ways your child learns, review various curriculums, and put together a program for your child. Here are websites to get



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 Child Find. Part C is a federal grant program that encourages states to set up programs for young children with disabilities



Consensus of the Fragile X Clinical & Research Consortium on Clinical Practices

The Guidelines represent expert consensus and not evidence-based studies. The clinical committee of the Fragile X Clinical & Research Consortium (FXCRC) could be thought of as a “consensus panel” since virtually every clinician in the USA seeing and managing a large number of patients with Fragile X syndrome and other Fragile X-associated Disorders is represented.



Lesson Planning Guide

Download the 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 make the teaching and learning environment from preschool through high school more effective, more efficient, and more rewarding for teachers and the