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.

April Is Autism Month

Term 2 started on Monday, April 01, 2019.

We already have a board prepared to promote Autism Awareness on World Autism day on April 02.

The teachers, staff and learners are all going to wear blue during the month of April.

Whilst my grandchild has Fragile X Syndrome (will talk about that in a later blog and maybe introduce you to some other syndromes that the FiXers have) , the leading cause of genetic autism and intellectual disability, we are often faced with meltdowns with our Autistic Learners.

One thing that has been life-changing for some of the learners and to avoid meltdowns is using:

  1. MINUTE WARNINGS/TIMERS: Learners may need a 5 minute, 2 minute, or 1 minute warning before there is a change of activity. These warnings help the learner prepare for the transition. They will begin to learn that the warning comes and then the change comes. Eventually, the minute warnings become routine, even if the next task is not.
  2. FIRST/THEN: Many of our other tantrums/meltdowns are over wanting something they can’t have at that moment. A toy, a snack, leaving their desk or work station NOW. Or there is something they DON’T want to do. For many of these situations we use first/then.  “First___, then____” statements are used to help a child finish a task before getting something motivating.

“First we finish our lunch, then we can go outside.”
“First we will clean up, then we can go play on the trampoline.”

Many learners with autism think in pictures, so that is often the initial go to method. At FiX Africa the FiXers utilize PECS (Picture Exchange Communication System) or Gridplayer. They then progress to Letterboards to spell words and hopefully then progress to sentences.

It’s a simple phrase that provides structure in a child’s mind and helps them follow the directions at hand. It can help decrease a child’s frustration because they can understand exactly what is expected of them.

Finally always reward and compliment good behaviour and whether you are a parent, grandparent or educator REMAIN CALM.