University of Edinburgh
 

Supporting Deaf Pupils with Additional Learning Needs

Presented on Tuesday, 18 January 2011

CHARGE syndrome

Wendy McCracken

C H A R G E

Multiple physical, sensory and behavioural anomalies

Every part of the auditory system may be affected

  • External ear anomalies
  • Middle ear anomalies, ossicular, chronic otitis media and chronic Eustachian tube dysfunction
  • Under-development of the cochlea, and vestibular structures (Mondini's dysplasia)
  • Reduced auditory nerve diameter
  • Prolonged latencies
  • Losses typically mixed with a very considerable conductive element
  • Prevalence of severe-profound is approximately 50%

CHARGE syndrome

60% of children will acquire symbolic language

Mechanics of speech may be affected by cranio-facial abnormalities, breathing problems, and clefts

Success in acquiring symbolic communication has been found to be relate to the ability to walk independently by the age of 3 years

Behavioural issues are common and may be linked to:

  • Multi-sensory impairments
  • Communication frustrations
  • Physical pain or discomfort

May be linked to cognitive impairment

Regulatory disorder, leading to problems with:

  • Sleep-wake cycle [respite care]
  • Hunger-satiety cycle
  • Ability to console themselves
  • Ability to plan their motor activity

Recent research suggests the presence of executive dysfunction, problems with:

  • Shifting attention
  • Initiating activity
  • Inhibiting activity
  • Sustaining activity

Functional communication is of central importance. Whatever system is put in place must be used at home as well as school.

Choosing a communication system

  • Must include family
  • Look at motor control-oro-motor and extremity
  • User preferences
  • Previous exposure
  • CONSIDER a communication passport
  • Practically usable
  • Ergonomically acceptable
  • Transportable
  • Flexible
  • Rate of use
  • Possibility of extending
  • User community
  • Socially acceptable