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hydrocephalus
84
Great expectations Think big and act early if you want to help children with hydrocephalus, says Jackie Bland
I
n the 1960s a tiny piece of ingenious
supported to overcome their challenges,
plumbing revolutionised the life
especially in their childhood years.
Children with hydrocephalus can live successful, fulfilling lives
chances, and the lives, of children
The forming brain is such a delicate
with hydrocephalus. This small device,
mechanism that any change in the
a shunt, meant that the abnormal
normal pathway of development can
build up of cerebral fluid in the brain,
have serious consequences. Changes
which is the cause of hydrocephalus,
in pressure caused by excessive
could be managed through a simple
cerebrospinal fluid being present can
misunderstood, labelled as “lazy” or
draining mechanism. Babies born
affect a child’s developing brain, leading
“challenging” and, in some cases, being
with this condition, and children who
to problems with processing, thinking,
bullied in the classroom.
acquired it through illness or trauma,
memory and motor development. All
It is important to understand, with
could now expect long and healthy
of this has huge consequences for
hydrocephalus, that the developing brain
lives, instead of serious illness or
the child with hydrocephalus in an
needs to be helped, through teaching,
premature death.
educational context.
to make connections in specific areas
This was, in many ways, a triumph
Where hydrocephalus is researched
of damage so that the individual can
for science – the tackling of a condition
and understood and appropriate
function effectively. There are many
which is embedded in the human
techniques used in education, children
techniques available for doing this and
population, today affecting one in
with hydrocephalus can thrive, achieving
it can be interesting and rewarding
1000 babies born in the UK. However,
alongside their peers and going on to
work. For the individual children, who
the shunt is not the end of the story;
successfully secure employment.
may find their disabilities bewildering,
it is only the beginning. Children with
However, the low profile of the
having the appropriate support is critical
hydrocephalus can live successful,
disability, and the often complex
to their future independence, health
fulfilling lives, but only if their condition
subtleties of how it presents, lead
and happiness.
is properly recognised and they are
too frequently to children being
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 Casey Bottono, a young woman with hydrocephalus who is about to start university.
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hydrocephalus
Practical measures A multi-sensory environment should be provided. Information should be broken down into bite-sized chunks and teachers/assistants should always
Despite his difficulties, he described his anguish clearly and articulately
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
check that a child has understood an
work. His job was under threat. Despite
instruction before they expect the child
his difficulties, he described his anguish
to carry it out.
Pupils with hydrocephalus frequently
clearly and articulately. He had the
Noise can disproportionately affect a
have difficulty with language and
introspection necessary to understand
child with hydrocephalus; what sounds
comprehension, although they may
his disability but lacked the ability to
like a quiet background hum to us may
appear very articulate and may seem
develop coping mechanisms on his own.
seem like a very noisy intrusion for an
to understand more than they actually
By contrast I listened to a
affected child, who will then be unable to
do. It is important that where a child with
presentation by a young woman who
concentrate. This is because the child’s
hydrocephalus appears very able in, for
developed hydrocephalus as a baby
brain does not have the same ability to
example, speech, assumptions are not
after contracting meningitis. She
screen sensory input in order to focus
automatically made about other skills
described the support she received
on a particular task.
or overall language ability.
throughout school, where staff, friends
Children should be allowed to sit at
A child with hydrocephalus may
and specialist workers helped her
or near the front of the classroom and
interpret everything very literally and
work through her many processing
should have a good view of any board
fail to recognise implied instruction. It
and memory difficulties. She proudly
they may need to see. Hydrocephalus
is best to avoid the use of metaphor or
announced winning a place at university
may also affect a child’s vision, so any
analogy and to represent instructions a
and confidently anticipated, as she put
special needs in this respect should be
different way if they appear to have been
it, a “life without limits”.
checked out.
misunderstood or ignored.
The contrast in the experience
It is helpful to the child with
Some children with hydrocephalus
and expectations of these two young
hydrocephalus to prefix their name
will have difficulty in expressing
people with hydrocephalus had been
before any instruction is given.
their emotions appropriately and will
determined, to a very large extent, by
Instructions such as “Please get your
experience difficulty in reading body
the awareness and expertise of those
Maths books out” are too generic,
language and facial expressions.
around them in educational contexts
whereas “Sophie, you need to get your
Understanding that children with
during their formative years. The
maths book out now” is direct and
hydrocephalus
react
knowledge, skills and expertise exist
clearly applies to that individual.
appropriately can help prevent
to give children with hydrocephalus the
misunderstandings and reactions from
best start in life; it is imperative, as more
staff and classmates.
of these children enter the educational
A child with hydrocephalus will not handle sudden changes well, and cannot
may
not
be relied upon to make assumptions
Forming friendships can be difficult
system, that professionals are alert to
about what is happening. Routines and
for a child with hydrocephalus, who
their needs and have the patience and
consistency are therefore essential.
may come across as selfish and always
will to employ the techniques described in this article.
Pupils may find it difficult to find
wanting his/her own way. For this reason
their way around, especially in large
s/he may also find it difficult to maintain
unfamiliar environments. In these
relationships – many simply do not have
circumstances, the use of visual plans
the ability to understand and empathise
and personalised timetables helps
with others.
the child connect. Photos of the child following routines, or in the classroom
Raising expectations
doing what they are expected to do,
Recently, my work brought me into
can help them learn what other children
contact with two young people who
might do automatically. Colour coding
have hydrocephalus. One, a young man
for equipment and books may prove
in his late 20s, spoke of being bullied at
very helpful.
school and labelled as “stupid, ignorant
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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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