Common effects of hydrocephalus and strategies for minimising their impact at school
Hydrocephalus describes a set of conditions in which fluid at the centre of the brain becomes trapped, causing damaging, sometimes even fatal, pressures inside the head. Although the pressure can be controlled with surgical implantation of a shunt, or by an operation to divert the fluid around the blockage, many people with hydrocephalus live with cognitive impairments, which are often subtle but have a profound impact on their lives.
Congenital hydrocephalus is found in around one in 1,000 babies, but hydrocephalus can also be acquired through meningitis, head injury or tumours. It is also a complication in some very premature babies, who are prone to brain haemorrhages in the early days.
Many of the cognitive problems seen in children with hydrocephalus stem from foetal brain development differences, with further problems caused by high pressures, such as in late diagnosis or shunt malfunction. Executive function problems – with difficulties sustaining attention, monitoring behaviour and picking relevant information from amongst other stimuli – together with subtle language impairment, can pose real difficulties as the children begin school, but can be dismissed as eccentricity, immaturity or “naughtiness”.
Support at school
Children with hydrocephalus often have delayed processing of information, especially verbal. It may take longer for information or instructions to be assimilated; by the time information has been processed, the lesson or story may have moved on to the extent that the child can no longer follow what is going on. This leads to reduced concentration, as there is now little to hold the child’s attention. Pacing instructions to allow time for one piece of information to sink in before going on to the next will usually help. Check that the child is clear about what she needs to do before starting the task, and fill in any gaps.
In order to pay attention, the brain needs to suppress unwanted stimuli, leaving only the stimulus that requires attention. If this blocking is affected, all sounds and visual stimuli from the environment will be treated equally by the brain; children chatting or moving about, or brightly-coloured art on the classroom walls will make concentrating hard. For new subjects, or areas the child finds difficult, choose a quiet place with plain walls if possible, to allow attention on the material. Children with hydrocephalus may also find it difficult to pick out relevant information, for example, they may not realise a teacher is addressing them too, when talking to the whole class. Using the child’s name beforehand can focus attention. Busily presented worksheets, or word search type activities may be harder to manage than simpler presentations.
Memory and recall
Short-term memory and episodic memory can both be affected by hydrocephalus. Children with affected episodic memory can rapidly forget events, or forget the order they happened in. Together with an affected sense of passing time, children often think they have completed tasks which they actually haven’t. For example, they may be adamant they have done their homework, but may actually be remembering homework completed some time ago, rather than that most recently set. Gaps in the recollection of events may be filled with inaccurate details; the bigger the gaps, the more potential for error. Understanding this is helpful as children with hydrocephalus are sometimes labelled as “fibbers”, implying that they have made a decision to tell untruths when imperfect memory constructs are to blame.
Understanding episodic memory is also useful in supporting students to identify their strengths and weaknesses, which is essential for making wise subject and career choices. Episodic or autobiographical memory helps build a sense of self, piecing together memories of our successes or struggles. Students with hydrocephalus may opt for subjects for which they show little aptitude or liking in order to “crack it”, or prove a teacher wrong, and need guiding towards subjects that they can excel at.
Short-term memory deficits may mean that children require repetition of information. They may find that having material presented visually or kinaesthetically, as well as verbally, reinforces the memory. In addition, active engagement, such as repeating instructions aloud, enables more of the brain’s functions to be used to remember. Working memory problems may result in children not being able to manipulate information mentally whilst performing a task, for example, remembering a story whilst trying to write it down. Reducing the physical component (the handwriting) can result in improvements to the creative content, and word processing or voice-recognition programmes can help, especially in external exams.
Using prompts and key words can help recall; “Can you remember yesterday’s lesson on climate Change?” will be more helpful than, “What did we do in geography yesterday?” Helping students record key words needed for homework completion will save a lot of anxiety when they come to recall the lesson later that day.
Making sense of the situation
Children with hydrocephalus may find it difficult to monitor their performance against their goals, for example, assessing whether the homework they’ve produced follows the instructions. This also applies to asking for help; the student may not recognise that she needs help, so extra vigilance in class may allow intervention which helps her succeed. Students may also need help to plan and organise their day, their belongings and longer assignments. Visual timetables and colour coding of equipment and classrooms can help reduce anxiety and help them to cope with unexpected changes.
They may find it difficult to monitor their behaviour or adapt it to changing situations, for example, not understanding that some teachers may permit certain behaviour, but others won’t. They may argue with teachers as they would with peers, not picking up that the situations are different. Anxiety is common, and advance notice for changing activities, preparation for new activities, and support over unexpected changes can all be of benefit.
The ability to learn to recognise letters and words, and write them by hand, may be quite good. However, problems may appear in Key Stage 2 when the child begins to read to learn or understand content, or write to record, rather than to practice forming words. The child’s comprehension may not be as good as it appears from their vocabulary; subtle effects of hydrocephalus on language development can be checked by a speech and language therapist, and many of those with the condition have benefited from speech and language therapy.
Children with hydrocephalus often struggle with abstract concepts; maths is full of these, and if language is affected too, this may have an impact on learning. Opportunities to pour, measure, weigh and feel, can support the understanding of these abstract representations.
Gill Yaz is Health and Development Manager at Shine, which supports those affected by spina bifida and hydrocephalus. The charity’s Tips for Teachers DVD provides advice on minimising the impact of hydrocephalus at school: