This Sunday (10th October), all across the UK, people will be taking part in activities to mark Fragile X Syndrome Awareness Day.
What is Fragile X syndrome?
Taking its name from the unusual way it impacts the X chromosome, Fragile X is a genetic syndrome which can cause a range of developmental problems, including learning disabilities and cognitive impairment. Commonly diagnosed in early childhood as babies start to hit their key milestones such as walking and talking, Fragile X is the most common inherited cause of learning disabilities.
Affecting around 1 in every 3,600 boys and 1 in every 4,000-6,000 girls, the effects of Fragile X syndrome can vary dramatically from person to person, but most will experience lifelong difficulties. This is something that one of our wonderful teachers at Castle School, Louise Washer, understands better than most.
Louise’s son Josh was diagnosed with Fragile X syndrome when he was 20 months old. Now a young man embarking on his further educational journey towards working in hospitality, Louise bravely shared her personal story of living with Fragile X syndrome with colleagues at Castle School to raise awareness of the condition and the upcoming awareness day.
Louise’s story
It was first noted by healthcare professionals that there might be something amiss with Josh’s physical development at his 8 month check-up – he couldn’t sit up unaided or support any weight on his legs. It was also discovered that he had severe glue ear in both ears – a condition which causes the build-up of fluid within the middle part of the ear canal. This can be a physical feature associated with Fragile X. It wasn’t until Josh was 20 months old however that he was formally diagnosed via a blood test.
Symptoms of Fragile X syndrome
Fragile X can manifest itself in a number of different ways and at varying levels of severity. Many of the behavioural traits of individuals with Fragile X are very similar to those on the autistic spectrum – avoidance of eye contact, social withdrawal, communication difficulties and repetitive behaviours. There are however a number of physical traits and behaviours unique to those with a Fragile X syndrome diagnosis.
Physical similarities in children and young people diagnosed with Fragile X syndrome include a long and narrow face, large ears, a prominent jaw and forehead, unusually flexible fingers and very flat feet. These characteristic physical features usually become more apparent with age and affect most males and around half of females with Fragile X.
Unique behaviours and personality traits on the other hand might include periods of anxiety, fidgeting or impulsive actions as well as periods of hyperactivity which can affect speech patterns and the child’s ability to concentrate, which in turn impacts their ability to learn despite Fragile X individuals usually having incredible memories.
Managing Fragile X in school
Taking these unique characteristics into account, at Castle School, we have developed ways of working with children with Fragile X as well as other severe learning difficulties to help them feel secure and relaxed in the classroom.
By minimising the number of distractions in the classroom – limited displays and colours as well as items on desks, and adopting a teaching style which sees staff sitting side-by-side with pupils to limit the need for direct eye-contact, we can maximise pupils’ attention span and help them to feel at ease.
Want to know more?
If you would like to know more about Castle School, how we work and our facilities, please get in touch to arrange a visit, or check out our website at www.castle.ncea.org.uk.
For more information about Fragile X syndrome, the Fragile X Society is the charity behind Sunday’s awareness day. Visit www.fragilex.org.uk.
