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.

A teacher at a school in South East Northumberland for children and young people with profound and multiple learning disabilities (PMLD) is helping pupils to take miraculous steps towards a better, more independent way of living by getting creative with items typically found around the house.

Gillian Robinson, a primary teacher at Castle School, has introduced the concept of ‘Active Learning’ into her classroom to help give a sense of freedom back to pupils who are typically dependent on those around them to support their needs.

Devised by Danish psychologist, Dr Lilli Nielson, as a solution for teaching children with visual impairments, Active Learning has adapted over the years and is now recognised as beneficial to children and young people with a wide range of severe and multiple disabilities.

Gillian first came across the approach during lockdown while researching ways to better manage the complex range of needs within her classroom to ensure that while individuals’ medical, hygiene and feeding needs were attended to, that the rest of her class remained stimulated.

Using everyday items such as buckets, A-frames, Tupperware boxes, blackout curtains and plumber’s piping, Gillian has created a sensory paradise for her learners to support their mobility and cognitive skill development, alongside their emotional and social wellbeing.

“Many children with profound and complex needs develop ‘learnt helplessness’ – the idea that they have no control over their environment, so they learn to wait patiently and that eventually, someone will provide them with what they need. Over time, this kind of behaviour can lead to passiveness where children stop communicating altogether,” Gillian commented.

“Active Learning is designed to encourage the children to do things for themselves, it teaches children how to interact with their environment and explore their immediate space with confidence and shows them how their actions can affect the things around them.”

While specialist equipment to support Active Learning is available, many of the manufacturers are based in the United States, which makes sourcing equipment tricky and expensive – luckily, Gillian is quite creative.

“Lilli Nielson recognised that children with sensory and physical impairments needed to be taught to explore the space around them using all of their body,” said Gillian.

“A few of the children in my class have very limited movement and rely on specialist positional equipment like wheelchairs or work chairs, which can make accessing sand and water trays, foot spas and play spaces very difficult.

“By combing the internet, I was able to find designs for DIY versions of almost all of the resources I needed to bring Active Learning to life in the classroom in a way which would meet the very specific needs of my pupils.

“I made my own waterfall curtain out of plumbers piping and a window blind cord with small bells added onto the end; our echo bucket is simply a metal bucket with holes cut into it attached to a rope pulley system so I can lower it over children sitting in wheelchairs. Our A-frames and wall-mounted sensory boards are made from materials found at B&Q and the voice activated light box is just a large Tupperware container lined with some reflective foil and fitted with a disco light that reacts to bass sounds – which has made a huge difference to our non-verbal children, showing them that using their voice has a purpose and will be listened to.

“After some searching, I was even able to find a design to make accessible foot exploration trays from decking boards which the children can use while in their work chairs to help them develop awareness and purposeful movement of their feet.”

Sara Wild, Principal at Castle School, commented:

“We’ve been amazed by the improvements shown by some of the children in Gillian’s class since the introduction of Active Learning into their daily lessons.

“One child, who was quite disengaged and spent a lot of his floor time curled up and actively turning away from interactions and resources now reaches out to explore things around him in lots of different environments and his engagement in his exploration is really focused. He also has much better use of his voice to attract attention. Another, who uses a walking frame to aid his mobility, has made remarkable improvements, going from being unmotivated to move around and reluctant to take steps to now showing huge resilience and persistence when moving around large spaces to reach the toys and resources he wants to engage with.

“The success of the Active Learning initiative in Gillian’s class has seen us make time in our curriculum for Active Learning across Castle School, with Gillian taking the lead on training our teachers and support staff. We’re incredibly proud of what Gillian has achieved and can’t wait to see more of our children benefit from the programme.”

Castle School is a specialist provision for children and young people with profound and multiple learning disabilities. Operating as part of Northumberland Church of England Academy Trust, the school offers places for pupils aged 2-19 at its purpose-built campus in Ashington.

For more information about NCEAT, visit www.ncea.org.uk. 

Pupils enjoying Active Learning at Castle School

(Click on any photo to enlarge)

On Wednesday 23rd June, schools and colleges across the UK marked ‘National Thank a Teacher Day’.

While almost any member of staff who works in a school will tell you that they’re doing what they love and that they don’t need any recognition – in the aftermath of what has been a challenging year for everyone in education, our staff were humbled by the lovely notes, cards and drawings that were sent into school.

“We would like to share our thanks and appreciation to our wonderful pupils, who will always be our greatest teacher.”

Thank you very much for all of your kind words – here is a selection of some of the lovely cards, pictures and notes we received, along with quotes from our pupils.

A beautiful poem (Click the image to open as a pdf)

Alnwick Class made some lovely apple themed ‘Thank you’ cards in school, they all decided which member of staff throughout school they would give their card to. We absolutely loved hearing their reasons, why they had chosen that person. Thank you Alnwick Class!

The Castle School enterprise team would like to say a big thanks to our wonderful families and staff, for supporting their jam business. The students have been working incredibly hard making their own homemade jams and chutneys to sell and we are very proud to say that they’ve made a fantastic £203 profit!

 
The team have already got their eye on a new piece of equipment to buy with the proceeds to help them take their business to the next level!

This Friday (2 April), as well as celebrating Good Friday, within Castle School, NCEA Trust’s specialist school for children and young people with learning disabilities, and across the wider Trust, we’re also celebrating World Autism Awareness Day.

Autism, or Autism Spectrum Disorder (ASD) is the collective name given to a range of conditions, characterised by challenges with social skills, repetitive behaviours and communication.

Autistic people may find it hard to communicate with others, struggle to comprehend emotions, become anxious in unfamiliar surroundings and find things like loud noises and bright lights overwhelming.

Being diagnosed as autistic does not stop individuals from living a full and happy life, however the nature of Autism may affect focus, attention, transitions, organisation, memory, time management and emotional control – everything we do in life involves these skills, which can make life for people with Autism a huge challenge, especially school-age children.

Celebrating individuality

The acclaimed photographer, Stephen Shore once said: “If you have met one person with autism, you have met one person with autism.”

Every child or young person diagnosed as autistic will have their own unique abilities, interests and learning styles which is why at Castle School, we strive to ensure we provide the best support possible by creating a personalised curriculum, appropriate to the needs of each pupil.

At Castle School, our pupils are at the heart of everything we do and we always respect the children and what is important to them. People with Autism work best in structured environments which are laid out in such a way that the room, and the things in it, tell them what is going to happen. Schedules or work systems which ‘tell’ students what to do are also really helpful to ensure that they can see how much they have to do, the order in which they have to do it and when they will be finished, so there are no surprises.

Many of our Autistic pupils have special interests and it is important that throughout the day that they have the opportunity to pursue and enjoy activities which promote these interests, however we also support children to try new things in a safe environment to help broaden their horizons.

Ensuring every pupil has a voice

Many autistic children find it hard to communicate their thoughts and feelings and have difficulty developing the language skills needed to understand and respond effectively to what others say to them. They also often have difficulty communicating non-verbally, through things such as hand gestures, eye contact and facial expressions.

Supporting our pupils to develop effective communication strategies is a key part of what we do in school, supported by our fantastic Speech and Language Therapists and Occupational Therapists from the NHS.

We use a wide range of approaches throughout the school, from Makaton to Communication Boards, to ensure that our children and young people are supported and can always make their voices heard.

The language of Autism

Last year, the North East Autism Society (NEAS) led a campaign to change the conversations we have around Autism from ‘awareness’ to ‘acceptance’. Why ‘acceptance’? Surely there’s no-one out there who wouldn’t be accepting of someone simply because they’re autistic?

The idea behind the campaign was to change the narrative from one of passive understanding to active comprehension. Awareness, especially in the digital age, can be damaging. There’s so much misinformation available at the click of a button. Acceptance on the other hand requires a commitment to learn, to make changes, to understand and to not see any adjustments as doing anyone a favour – instead it’s about collectively creating a world where we can all thrive.

Celebrating inclusivity

One of the three original schools which made up Northumberland Church of England Academy prior to its devolution to a Multi-Academy Trust in 2009, Castle School shares its main entrance with Bishop’s Primary School’s Josephine Butler Campus and Duke’s Secondary School.

Although we do have staggered start and finish times to ensure that our pupils who don’t respond well to busy environments have enough space to move through the entrance without delays, it is wonderful to see how pupils from the other schools interact together.

There can be times when some Castle pupils may be very anxious and at these moments, Castle staff will always take time to reassure pupils from Duke’s and Bishop’s, explain what’s going on and answer any questions they may have, but for the most part, they are very accepting and willing to offer help where needed.

Sara Wild, Principal at Castle School, commented:

“At Castle School, we’re passionate about creating a safe and caring environment where our pupils can express their individuality while learning vital social and communication skills to support them to live better, more independent lives.

“Each and every one of our pupils who has a diagnosis of Autism Spectrum Disorder is unique and talented in their own special way. We learn as much from them as they learn from us and we’re proud to join in the celebration of their individuality on World Autism Awareness Day.”

To find out more about Castle School, visit www.castle.ncea.org.uk.