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 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- Health team- Specialist advice on spina bifida and hydrocephalus Telephone support to talk through issues with behaviour, education Study days Education team Education team Specialist SDW, Experienced educators

Support and Development Workers Mostly professionally qualified Support Local activities Bringing people together

Local groups Social media Events Family weekends Picnics Information/study days

Family Weekends Information on- Cognition Bladder and bowel Behaviour Education Benefits – PLUS fun! Mutual support and fun!

Thank you Thank you