Great expectations

The following article was published in

SEN Magazine the UK's leading magazine for special educational needs

For a FREE trial copy of SEN Magazine, click here

SEN Magazine Ltd. Chapel House, Shawbridge Street, Clitheroe, BB7 1LY Tel: 01200 409800 Fax: 01200 409809 Email: subscribe@senmagazine.co.uk www.senmagazine.co.uk

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.

SENISSUE55

• emotion. www.senmagazine.co.uk

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

www.senmaGAZINE.co.uk

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

SENISSUE55

85