Talking About Fragile X Syndrome

Most people first hear about Fragile X disorders when someone in their family is unexpectedly diagnosed. It is possible you have been concerned about your child’s development for some time and just received a diagnosis of Fragile X syndrome. Or maybe you have been unsuccessful in getting pregnant and found out you are a Fragile X “carrier.” Maybe you have an older male relative who has tremors, memory loss, or balance problems and you are starting to wonder about the cause.

Fragile X syndrome (FXS) is a genetic disorder. Symptoms often include mild to moderate intellectual disability. The average IQ in males is under 55. Physical features may include a long and narrow face, large ears, flexible fingers, and large testicles. About a third of those affected have features of autism such as problems with social interactions and delayed speech. Hyperactivity is common and seizures occur in about 10%. Males are usually more affected than females.

My grandson was diagnosed with Fragile X at the age of 4.
There is no cure. Early intervention is recommended as it provides the most opportunity for developing a full range of skills. These interventions may include special education, speech therapy, physical therapy, or behavioral therapy.

Medications may be used to treat associated seizures, mood problems, aggressive behavior, or ADHD. Major medical advances have taken place in the past few years and good results have been obtained by CBD oils, Metformin (the Diabetic drug) and the normal ADHD drug interventions.

FiX Africa Home School was founded in 2016 because my FXS grandbaby had reached ‘school going age’ and required special education and more 1 on 1 sessions. From obtaining a diagnosis that he would never walk/talk, we have achieved great results with Jayden. He is now starting to recognize words and ‘read’ and will verbally let you know his choice of lesson plan.

Lesson plans are adapted from the Rapid Prompt Method and Glenn Doman’s method of dealing with children with brain impairment. The South African CAPS Education and PID Programmes are all utilized to form a tailor-made Individualised Education Programme (IEP) for the learners.

Whilst FiX stands for Forming Individual eXcellence and uses the FX letters for Fragile X, the school also uses the F.I.X to also stand for Finding 1’s eXpression.

The same methods and programmes, together with using letterboards, Letterland recognition and related stories has made it possible for the FiX learners to progress academically whilst still learning motor/behaviour modification in one on one sessions.

We are proud to also have a Speech Therapist and Swimming lessons on board as well. Whilst Jayden is the only recognized FXS learner we have also taken in other autistics and are achieving success in behaviour modification and Academics.