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Education Supports

It is important to have HIGH LEARNING EXPECTATIONS for children who have CHARGE Syndrome. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.

What you need to know

Individuals with CHARGE syndrome often have multi-sensory challenges.  They often have difficulties with vision, hearing, and the senses that perceive balance, touch, temperature, pain, pressure, and smell. Intelligence may be underestimated because of their vision, hearing, learning, motor, and/or speech disabilities.  It is important for teachers and caretakers to take time to develop a relationship with the children and their families.

A team that is knowledgeable in sensory challenges is an important part of the child’s education team.  Members of this team may include:

  • Physical therapy
  • Occupational therapy
  • Speech therapy
  • Sensory integration program specialist
  • Deaf or Deafblind specialist
Communication
  • Individuals with CHARGE may have challenges in developing clear speech and/or the ability to sign well.  
    • 60% acquire symbolic language and communicate with spoken language, signs, and or visual symbols.
    • Speech may be affected by craniofacial and breathing problems.
    • Language delays are caused by multiple sensory and motor challenges, and delays in finding an appropriate communication system.
    • Bilateral facial palsy and central vision loss can lead to lack of facial expression and this can add to individual’s communication problems.
  • Most individuals benefit from a total communication approach.
    • Total communication approach means incorporating anything that works including:
      • Gestures
      • Simple signs
      • Braille/print
      • Facial expressions
      • Symbols (PECS or picture exchange communication system)
      • Speech therapy
      • Sign language
  •  Balance challenges can affect communication
    • Development of memory
    • Effective use of vision
    • Processing of auditory input
    • All of these can have cumulative effect on speech and language development.
  • Challenges to speech include:
    • Hearing impairment
    • Vision impairment
    • Facial palsy
    • Low muscle tone
    • Poor tactile sense
    • Oral facial cleft
    • Enlarged tongue
    • Poor tongue movement
    • Small lower jaw
    • Larynx and pharynx anomalies
    • Breathing difficulties
    • Swallowing difficulties
    • Dental abnormalities
    • Delayed/immature eating skills
  • Challenges to signing:
  • Under-functioning tactile and proprioceptive sense
  • Low muscle tone
  • Severe balance problems
  • Dyspraxia
  • Initiating speech/signs may be due to specific brain anomalies
Hearing
  • An audiological evaluation can be challenging because
    • Very young children don’t speak or sign
    • Visual problems interfere with sound field testing
    • Tactile defensiveness is common
    • Hearing loss may be great and asymmetrical
    • Resistance and risks to sedation may exist
    • Ear anomalies may make it more difficult to fit ear molds and hearing aids
    • Narrow ear canals can block from fluid accumulation. This, combined with congested breathing, leads to noisy breathing. This makes it harder to hear.
    • Conductive hearing loss
    • Middle ear malformations
    • Sensorineural loss because of malformation of cochlea
Vision
  • Children with CHARGE often have vision challenges due to colobomas. 
  • Colobomas can cause
    • Visual field loss
    • Blind spots
    • Acuity problems
    • Light sensitivity
    • Monocular vision
    • Lack of depth perception
  • It is important to understand the extent of their vision loss
  • Hearing impairments and vestibular (balance) abnormalities affect the amount and quality of information received from the environment
  • Equilibrium triad (vision sense, balance sense, tactile/ proprioceptive senses) may be missing or impaired.
Balance
  • Malfunctioning or absent semicircular canals (the receptors of balance sense) in the inner ear canals.
    • This plays a crucial role in organizing sensory inputs in all other sensory channels
    • This may affect walking and standing
  • Postural security and good sense of equilibrium depends on the development of vision sense, balance sense, tactile, and proprioceptive senses
  • Problems with postural control, sitting, and standing may cause fatigue
    • Young children may benefit from adaptive chair with arms and footboards
    • Children may need to get into horizontal position to “relax” after sitting position
  • Balance and vision
    • Problems with balance may affect the ability to maintain a stable visual field, follow moving objects, and differentiate when one thing is moving
    • May compensate for lack of visual sense by using the walls, door and window lines
      •  May be reluctant to go outside because these “markers” don’t exist outside
  • Balance and Hearing
    • There is a link between balance sense and ability to process sound and to develop spoken language
Sensory (see also Behavior and Sensory Supports)

Some children may experience sensory difficulties.

  • Sensory impairment is caused by impaired and poorly modulated sensory systems
  • Sensory breaks can help children cope with sensory overload
  • Sensory integration dysfunction may be evident in many areas for some children
    • Rejection of textures in mouth
    • Inability to chew and bite into foods but may grind teeth
    • Extreme postural insecurity
      • Enjoy swinging and bouncing
  • High pain threshold
  • Delayed bowel and bladder movements
  • Disturbed and inconsistent sleep patterns
  • Self-stimulation behaviors
    • Self-biting
    • Scratching
    • Skin picking
    • Spinning
    • Rocking
    • Hand flapping
Motor delays
  • Could occur due to vestibular dysfunction and/or prolonged hospitalization
  • May also have
    • Low muscle tone in trunk/core
    • Balance problems
    • Reduced sensory input
      • Can lead to reduced perceptual awareness
      • Can have lack of motivation to move
        • May be resistant to exercise
      • Low tone with poor tactile senses may cause a child to use excessive force in movement
        • May be perceived as aggressive, rough, or clumsy
    • Flexible joints
    • Poor vision
    • Severe balance problems
    • Breathing difficulties
    • Reduced perceptual awareness

What you can do

The CHARGE Syndrome Foundation produced a Professional Packet that you may find helpful, in addition to the ideas below. 

Vision
  • Consult Deafblind specialists
  • Make accommodations for safety
    • i.e., visual enhancement, like bright duct tape on a step
  • Field loss or monocular vision
    • May have difficulty to follow a line(s) on paper
    • Makes reading difficult
      • Use large bold print
      • Use bold lines
      • Use underlining or high-lighter
  • Photophobia (intolerance to light)
    • Tinted glasses
    • Sun visor
    • Low classroom lighting
    • Rest breaks in a dark room
General strategies
  • Organizational skills:
    • Help child to work in organized manner
  • Negotiation
    • Allow child to feel in control
  • Sharing:
    • Foster peer to peer interactions
  • Motivation
    • Select skills that are interesting to student
  • Functional use
    • Ask if activity or skill is useful or appropriate to student
  • Set child up for success
    • Model steps in the activity
    • Have clear expectations
    • Break assignments into small tasks
  • Establish routines
  • Sensory techniques
    • Awareness of hands/touch
    • Allowing others to touch for signaling/tapping
    • Signing
  • Signals
    • Gesturing to gain attention
    • Voice or sound cue to gain attention
    • Use adult’s hands as guide
  • Sensory break
    • Allow pause time during and between activities
  • Curriculum:
    • Child centered curriculum
    • Expanding environment
      • Start small and expand as child is comfortable
  • Social skills:
    • Individuals may need help to
      • Learn how to be a part of a group
      • How to negotiate
      • How to take turns and share
      • How to help
  • Cognitive skills: Help them to:
    • Be organized
    • Anticipate activities
    • Cope with behaviors
    • Make choices
Sensory strategies
  • Deep tissue massage
  • Brushing techniques
  • Weighted clothing and blanket
  • Joint compression
  • Bean bag chair
  • Cushion on floor
  • Magazines and books in a comfortable space
  • Quiet room with low lightening
  • Swings designed for sensory issues
  • Need a flexible schedule for breaks
  • Break tasks into smaller steps
  • Give choices as much as possible
  • Clear expectations and firm limits
  • Adapted furniture
  • Consistent routines
Social
  • Foster peer-to-peer interactions
  • Help with effective communications
  • Model how to be part of a group, how to take turns in games and conversation
Center for Parent Information & Resources

You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.

  • You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.