Learning with hydrocephalus


Practical ideas to help teaching staff support pupils with hydrocephalus

For some children with hydrocephalus, difficulties with learning can be less obvious initially and can become quite challenging to cope with as expectations increase. It’s therefore important, if you teach or support a child with hydrocephalus, to be aware of the condition and the impact it can have on the individual.

What is hydrocephalus?

Everyone has cerebrospinal fluid (CSF), which circulates around the brain and spinal cord to protect the brain and keep it healthy by removing unnecessary waste products.
People with hydrocephalus have an excessive amount of CSF which builds up and puts pressure on the brain, squashing the delicate tissues and causing the chambers or ventricles within the brain to swell. Without treatment, damage to brain tissues may occur. Symptoms depend on the cause of the hydrocephalus, the age at which it develops and the extent of damage to the brain.

The usual treatment for hydrocephalus is surgery, usually to insert a shunt (long tube) that drains fluid from the brain, normally into the abdominal cavity, allowing the fluid to drain away. With treatment, it’s possible that children may lead an independent life, depending on the cause of the condition. However, there may be ongoing neurological problems which affect learning and development. No matter how it is treated, hydrocephalus can only be managed but cannot be cured.

What does it mean for children?

There is a danger that the needs of children with hydrocephalus can often be overlooked or misunderstood and as a result they may under-achieve. Children with hydrocephalus will have varying degrees of difficulty and, like all children, will have their individual strengths and weaknesses. An essential aspect to helping children achieve is the commitment of staff to creating a positive and purposeful climate for learning, characterised by mutual respect, trust and an understanding of the condition.

Common issues children with hydrocephalus may experience include difficulties with: learning and concentration, behaviour and emotions, attention span, organisational skills, and taking spoken and written words literally. These children may also experience difficulties with visual processing, coordination, fine motor skills, noise sensitivity and sensory overload.

Things to consider:

• ensure every member of staff working with the child knows what support is needed
• keep instructions clear and to the point
• use visual learning with a range of multi-media, pictures and written prompts
• use play strategies
• help with de-cluttering and organising their immediate learning environment
• use repetition, giving more opportunities to practice new things
• use short-term targets
• be patient.

Learning challenges

Executive functioning
Although the neurological implications of hydrocephalus vary between individuals, there are a number of areas where many children and young people may have difficulty with. Two of the most common that educators report are motivation and task initiation. Some children with hydrocephalus may struggle to initiate their learning, and be much more reliant on teacher-led activities. These skills are part of individual executive functioning, the “control centre” for behaviour. Executive skills can be divided into two areas: cognition (working memory, planning/prioritisation, organisation and time management) and behaviour (response inhibition, task initiation, emotional control, sustained attention, goal-directed persistence and flexibility).
Teaching staff should plan for active learning approaches to be a regular and supportive feature of children’s learning. Children’s experiences, particularly in the area of numeracy, need to be meaningful while still allowing for progression in learning.

Language skills, including comprehension (understanding of language) and expression (production of language) are incredibly important for learning in the classroom and in everyday life. There is a need for young people to be able to communicate effectively both face-to-face and in writing through an increasing range of media. These skills can be more difficult for children with hydrocephalus as they may have difficulty with some aspects of understanding of language and literacy. These difficulties are often masked by adequate expressive language skills; in fact, many young people with hydrocephalus have excellent reading skills which can further mask problems with language, but we need to be aware that reading and comprehending are two different skills.

Therefore, it is important to think of the language and literacy experiences provided for children. The best experiences are those that are embedded into everyday routines, which allow children to learn in meaningful contexts.

Health and wellbeing
If children and young people are healthy and emotionally secure they will be more able to develop the capacity to live a full life. With a sense of wellbeing, and an understanding of what it entails, they will be better able to deal with the unexpected and cope with adversity. They should also be able to recognise and deal with the many different pressures in life, make healthy choices and identify when they need support.

Working together
Supporting children and young people in their learning involves people both within and outside the school setting, including parents and carers, early learning and childcare staff, primary teachers, secondary teachers, support staff and a wide range of other professionals. In most cases, children will require an individual education plan (IEP) or in some cases a coordinated support plan (in Scotland). Plans should take account of the views of the child, their parents, school staff and other relevant agencies. They should contain long- and short-term targets for the child to confidently achieve. 

It is useful to use the agreed short-term targets as a weekly working document with the child. This acts as a reminder of the next steps in learning, the child’s achievements and progress. Staff have a responsibility to ensure that targets are regularly reviewed with the child or young person and parents to ensure the best possible provision.
The need for multi-agency partnerships is essential to ensure that children benefit from the earliest possible intervention. Working alongside and building partnerships with parents is paramount in achieving success for all children. Time invested in finding out wider information about a child who has hydrocephalus and their particular needs and issues is well spent. This may include, finding out which agencies are involved, communicating frequently with parents to create a shared understanding of a child’s needs, being responsive and showing understanding that you value their input and knowledge about their child.

Every child and young person is entitled to the support that will enable them to fulfil their potential. Children with hydrocephalus are no different. If you have a child with hydrocephalus in your class reflect on what you need to know about that child and what you can do better to help them progress. Moving forward this will help you “get it right” for every child.

Further information

Andrew H. D. Wynd MBE is CEO of Spina Bifida Hydrocephalus Scotland:

Photo courtesy of Shine:

Andrew Wynd
Author: Andrew Wynd

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