Life With Hydrocephalus
About SHINE……
• Who are we?
• A community of 75,000 individuals, families,
friends and professionals sharing
achievements, challenges, and information on
living with hydrocephalus and/or spina bifida
• Working in England, Wales and Northern
Ireland since 1966 (formerly ASBAH)
• Around 10,000 disabled members, half with
hydrocephalus alone, half with spina bifida
with/without hydrocephalus
Learning and behaviour
• Everyone is a little different
• Hydrocephalus describes a condition with
many different causes
• Pressure can cause some issues, brain
development may be behind others
• Effects of open spina bifida on learning and
behaviour can occur with or without
hydrocephalus ( Chiari)
Chiari
Learning
• Attention- may not be able to easily direct
attention
• (TIPS- reduce other stimuli, use person’s name
before addressing them)
• Visual issues-perception, squint, nystagmus
• (TIP-take advice from OT, visual impairment
team)
• Processing speed may be slower
• (TIP- present information in manageable
‘chunks’ with time to sink in between each)
Learning
• Consider word processing/voice recognition
software to help record work
• Use key words to prompt remembering
• Present new material in a quiet, uncluttered
space, paced to allow for processing, and
repeated.
• Use concrete examples for maths
• Go from concrete to abstract in small steps
In Primary School
• Strengths• copying,
• learning by rote, ‘rule based’ learning,
word/number recognition
• handwriting as an activity in itself
• Chatty and sociable
• Key stage 1 often goes well
In Primary school
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Less strongLanguage
creating from imagination,
generalising information, abstract concepts,
inferences,
taking meaning from text
Using handwriting to record information
Self-monitoring ( asking for help)
Memory
• Key Stage 2 may start to present difficulties
In secondary school
• Less strong• Flexibility, switching attention from one task
to another
• Organising and planning ( timetables,
equipment, large projects)
• Self monitoring ( Meeting expectations, asking
for help, decisions on future career)
• Expectation of independence in care needs
Behaviour
• May not be able to suppress impulses like peers
• May become anxious about change-need to know
what’s going to happen
• May find flexibility difficult-affects relationships
• Language-may find banter, jokes difficult,
affecting relationships.
• May be similar to autistic spectrum
• May not ‘pick-up’ what is appropriate behaviour,
may need to be told
• Self monitoring-may not adapt behaviour
according to situation
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Behaviour
Give ‘buffer zone’ between activities
If avoidance, what/why?
Visual timetables
Managing change is an important life skill
Routine and consistency, but not rigid and
unchanging
Give ‘positive’ instructions
Don’t overload with questions/explanations
Language therapy can help peer relationships
Use strategies for similar-presenting issues
What can we do?
• Health team• Specialist advice on spina bifida and
hydrocephalus
• Telephone support to talk through issues with
behaviour, education
• Study days
• Education team
Specialist SDW, Experienced educators
Support and
Development Workers
• Mostly professionally
qualified
• Support
• Local activities
• Bringing people
together
Bringing
people
together
Local groups
Social media
Events
Family weekends
Picnics
Information/study
days
Family Weekends
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Information onCognition
Bladder and bowel
Behaviour
Education
Benefits
–PLUS
Mutual support
and fun!
Thank you