Great expectations

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Think big and act early if you want to help children with hydrocephalus

In the 1960s a tiny piece of ingenious plumbing revolutionised the life chances, and the lives, of children with hydrocephalus. This small device, a shunt, meant that the abnormal build up of cerebral fluid in the brain, which is the cause of hydrocephalus, could be managed through a simple draining mechanism. Babies born with this condition, and children who acquired it through illness or trauma, could now expect long and healthy lives, instead of serious illness or premature death.

This was, in many ways, a triumph for science – the tackling of a condition which is embedded in the human population, today affecting one in 1000 babies born in the UK. However, the shunt is not the end of the story; it is only the beginning. Children with hydrocephalus can live successful, fulfilling lives, but only if their condition is properly recognised and they are supported to overcome their challenges, especially in their childhood years.

The forming brain is such a delicate mechanism that any change in the normal pathway of development can have serious consequences. Changes in pressure caused by excessive cerebrospinal fluid being present can affect a child’s developing brain, leading to problems with processing, thinking, memory and motor development. All of this has huge consequences for the child with hydrocephalus in an educational context.

Where hydrocephalus is researched and understood and appropriate techniques used in education, children with hydrocephalus can thrive, achieving alongside their peers and going on to successfully secure employment.

However, the low profile of the disability, and the often complex subtleties of how it presents, lead too frequently to children being misunderstood, labelled as “lazy” or “challenging” and, in some cases, being bullied in the classroom.

It is important to understand, with hydrocephalus, that the developing brain needs to be helped, through teaching, to make connections in specific areas of damage so that the individual can function effectively. There are many techniques available for doing this and it can be interesting and rewarding work. For the individual children, who may find their disabilities bewildering, having the appropriate support is critical to their future independence, health and happiness.

Effects of hydrocephalus

Children and young people with hydrocephalus generally have a slower functioning brain. The following areas tend to be affected:

•    memory of events
•    working memory
•    processing speed
•    planning and organisation
•    attention and concentration
•    spatial awareness and visual perception
•    language and comprehension
•    maths
•    social behaviour
•    emotion.

Practical measures

A multi-sensory environment should be provided. Information should be broken down into bite-sized chunks and teachers/assistants should always check that a child has understood an instruction before they expect the child to carry it out.

Noise can disproportionately affect a child with hydrocephalus; what sounds like a quiet background hum to us may seem like a very noisy intrusion for an affected child, who will then be unable to concentrate. This is because the child’s brain does not have the same ability to screen sensory input in order to focus on a particular task.

Children should be allowed to sit at or near the front of the classroom and should have a good view of any board they may need to see. Hydrocephalus may also affect a child’s vision, so any special needs in this respect should be checked out.

It is helpful to the child with hydrocephalus to prefix their name before any instruction is given. Instructions such as “Please get your Maths books out” are too generic, whereas “Sophie, you need to get your maths book out now” is direct and clearly applies to that individual.

A child with hydrocephalus will not handle sudden changes well, and cannot be relied upon to make assumptions about what is happening. Routines and consistency are therefore essential.

Pupils may find it difficult to find their way around, especially in large unfamiliar environments. In these circumstances, the use of visual plans and personalised timetables helps the child connect. Photos of the child following routines, or in the classroom doing what they are expected to do, can help them learn what other children might do automatically. Colour coding for equipment and books may prove very helpful.

Pupils with hydrocephalus frequently have difficulty with language and comprehension, although they may appear very articulate and may seem to understand more than they actually do. It is important that where a child with hydrocephalus appears very able in, for example, speech, assumptions are not automatically made about other skills or overall language ability.

A child with hydrocephalus may interpret everything very literally and fail to recognise implied instruction. It is best to avoid the use of metaphor or analogy and to represent instructions a different way if they appear to have been misunderstood or ignored.

Some children with hydrocephalus will have difficulty in expressing their emotions appropriately and will experience difficulty in reading body language and facial expressions. Understanding that children with hydrocephalus may not react appropriately can help prevent misunderstandings and reactions from staff and classmates.

Forming friendships can be difficult for a child with hydrocephalus, who may come across as selfish and always wanting his/her own way. For this reason s/he may also find it difficult to maintain relationships – many simply do not have the ability to understand and empathise with others.

Raising expectations

Recently, my work brought me into contact with two young people who have hydrocephalus. One, a young man in his late 20s, spoke of being bullied at school and labelled as “stupid, ignorant and lazy”. He spoke of his hopes for the future and the impossibility of achieving them, because no-one at work understood his differences or helped him develop strategies for organising his work. His job was under threat. Despite his difficulties, he described his anguish clearly and articulately. He had the introspection necessary to understand his disability but lacked the ability to develop coping mechanisms on his own.

By contrast I listened to a presentation by a young woman who developed hydrocephalus as a baby after contracting meningitis. She described the support she received throughout school, where staff, friends and specialist workers helped her work through her many processing and memory difficulties. She proudly announced winning a place at university and confidently anticipated, as she put it, a “life without limits”.

The contrast in the experience and expectations of these two young people with hydrocephalus had been determined, to a very large extent, by the awareness and expertise of those around them in educational contexts during their formative years. The knowledge, skills and expertise exist to give children with hydrocephalus the best start in life; it is imperative, as more of these children enter the educational system, that professionals are alert to their needs and have the patience and will to employ the techniques described in this article.

Further information

Jackie Bland is CEO of Shine (formerly the Association for Spina Bifida and Hydrocephalus). More information on resources for working with children and young people with hydrocephalus can be found at:
www.shinecharity.org.uk

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