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Lets Talk Married with (Fragile X) Children

By |2019-09-27T10:27:13-04:00Nov 16, 2018|Education, Webinar|

Many parents may worry that even the strongest marriages may buckle—or worse—under the intense demand of raising a child with special needs. Licensed marriage and family therapist Diane Simon Smith tackles this topic for couples raising children with Fragile X syndrome.

Back-to-School Articles

By |2018-08-02T07:54:38-04:00Aug 1, 2018|Education|

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 »

Planning for Emergency Events at School

By |2017-09-15T15:47:42-04:00Apr 12, 2017|Education, Treatment and Intervention|

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.

Best Practice in Educational Strategies and Curricula

By |2017-02-01T10:00:21-05:00Feb 1, 2017|Education|

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.

You Are Never Too Old to Wear a Pink Tutu…and Other Lessons Our Son Has Taught Our Family

By |2019-12-30T17:26:01-05:00Oct 26, 2016|Education|

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.

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