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Lets Talk Married with (Fragile X) Children

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.

By | 2019-09-27T10:27:13+00:00 Nov 16, 2018|Education, Webinar|Comments Off on Lets Talk Married with (Fragile X) Children

Back-to-School Articles

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 [...]

By | 2018-08-02T07:54:38+00:00 Aug 1, 2018|Education|Comments Off on Back-to-School Articles

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 [...]

By | 2017-09-19T10:55:29+00:00 Sep 14, 2017|Education, Treatment and Intervention|Comments Off on Education and Fragile X Syndrome

Raise Fragile X Awareness with Our Printable Cards

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 [...]

By | 2018-10-03T14:55:09+00:00 Aug 23, 2017|Education|Comments Off on Raise Fragile X Awareness with Our Printable Cards

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.

By | 2017-09-15T15:47:42+00:00 Apr 12, 2017|Education, Treatment and Intervention|Comments Off on Planning for Emergency Events at School

Best Practice in Educational Strategies and Curricula

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.

By | 2017-02-01T10:00:21+00:00 Feb 1, 2017|Education|Comments Off on Best Practice in Educational Strategies and Curricula

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

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.

By | 2016-10-26T11:35:41+00:00 Oct 26, 2016|Education|Comments Off on You Are Never Too Old to Wear a Pink Tutu…and Other Lessons Our Son Has Taught Our Family

Ten Things to Do When Your Child Starts High School

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!

By | 2016-10-12T10:00:08+00:00 Oct 12, 2016|Education|Comments Off on Ten Things to Do When Your Child Starts High School

Get to Know Your Local Firefighters

Getting to know your local firefighters can help you and your child(ren) with Fragile X syndrome in so many more ways than you think. Read about how to engage them and how it will help your family.

By | 2019-11-14T16:25:46+00:00 Jun 11, 2015|Education, FXS|Comments Off on Get to Know Your Local Firefighters
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