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• Less strong-• Language• 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

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 togetherLocal groupsSocial mediaEventsFamily weekendsPicnicsInformation/study days

Family Weekends• Information on-• Cognition• Bladder and bowel• Behaviour• Education• Benefits

–PLUSMutual support and fun!

Thank you