Licensed Marriage and Family Therapist Diane Simon Smith discusses the amount of stress that is often placed upon a marriage when a couple has a child (or children) with fragile X syndrome. Many parents may worry that even the strongest marriages may buckle – or worse – under the intense demand of raising a child with special needs.
On Monday, October 29, 2018, Dr. Craig Erickson conducted his 6th annual webinar on medications for Fragile X syndrome. He discussed some ongoing studies and trials and then took questions for listeners about a variety [...]
Here is a compilation of NFXF articles to help you and your children with Fragile X syndrome with school, from lunches to IEPs to hyperarousal. Every child is different, and you will find something [...]
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 [...]
A grandmother of a newly diagnosed grandson once called me to talk about the diagnosis. “Where is the hope?” she asked. I did not say anything to see if she would go on. “I mean, [...]
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 [...]
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 [...]
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 [...]
Have you ever been in a situation where you needed a quick way to explain Fragile X to a stranger or acquaintance? Maybe there is an incident at the grocery store and some people begin [...]
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.
Finding the most effective interventions for students with Fragile X syndrome (FXS) can be difficult and often results in a “trial and error” approach. Even though a number of strategies have emerged and have been documented in the literature, the evidence-based interventions are limited. Promising outcomes are continuing to develop using the cognitive phenotype to better understand how to best teach students with FXS.
Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. We had the good fortune of being able to meet with Dr. Randi Hagerman and Amy Cronister, a genetic counselor, the week after we received our diagnosis. I also remember meeting Mouse and Tracy. They were all working in Denver at the time. My take-away from that initial appointment was I realized this was a big deal, and it was not going to go away. In hindsight, I had no idea about the magnitude of the people I was meeting. My head was spinning.
Can you believe your child is starting high school? I know, they were just a toddler yesterday. As you begin this important part of your journey, remember the specifics of this information varies by state, school district and even by school. You know your child best so you want to set up services that work for your child. I tried to cover all aspects for all children with all their varying abilities so some of these items may not apply to you. This might look overwhelming, but if you take it one step at a time, you’ll do great!
The proverb “It takes a village to raise a child” is never truer than when it comes to raising our children with Fragile X syndrome. In many cases, we need a community to look [...]
Going to an IEP meeting was always an emotional experience for me. After a couple of years of meetings with a group of people—teachers, psychologists, administrators—who had obviously already made many decisions regarding my son, and meetings where a “draft” IEP was handed to me when I walked in the door, I decided to make some changes in what I did.
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