life with hydrocephalus. about shine…… who are we? a community of 75,000 individuals, families,...
TRANSCRIPT
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)
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
Family Weekends• Information on-• Cognition• Bladder and bowel• Behaviour• Education• Benefits
–PLUSMutual support and fun!