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Behavior & Sensory Support

What you need to know

(See also Education supports for more information on sensory issues)

Children with CHARGE often have challenges in several sensory systems. Sensory impairments are caused not just by vision and hearing loss, but also because the senses that perceive balance, touch, temperature, pain, pressure, smell, breathing and swallowing, eating, drinking, digestion, and temperature control maybe impaired. All of these senses play a role in organizing how one takes in information both from outside and inside one’s own body.

Individuals may also have difficulty regulating their sleep/wake cycle, hunger cycle, their ability to control emotions, and their ability to plan motor activities.

Behavioral problems may also be caused by a child’s frustration of not being able to effectively communicate. Parents and teachers need to work together to determine an effective means of communication for home and school and determine what triggers may be affecting their behavior. It is also important to be aware that changes in behavior are often due to pain, which can be difficult to identify in children with poor communication skills.  

  • Sensory issues can cause stress leading to unexpected outbursts or passivity in students.
  • Sensory problems may be caused by
    • Too much noise
    • Glare or too much light
    • Too much movement or distraction in the environment
    • Problems with glasses or hearing aides
    • Fatigue
    • Seating issues
      • Uncomfortable chair or body position
    • Sensory deprivation
    • Sensory overload
    • Sensory processing
Sensory challenges
  • Semicircular canals play a role in organizing sensory perception through all sensory channels. 
  • Problems with balance will inhibit the development of effective body language.
    • Postural control
    • Equilibrium
    • Muscle tone and motor coordination
    • May have tactile defensiveness
  • Difficulty in expressing self can lead some children to give up trying or to have explosive behaviors
  • Later childhood and adolescence problems:
    • Fatigue
    • Difficulty maintaining postural control
Behavior

Some individuals will have challenging behaviors that will vary from mild to more intense.

  • Individuals may need help to reduce their stress and to be instructed in strategies for adapting
  • Behavior problems could occur. Some examples may include:
    • Attention problems
    • Self-stimulatory or self-abusive behavior is often a way of getting the body reorganized
      • Self-biting
      • Scratching
      • Skin picking
      • Spinning
      • Rocking
      • Bouncing
      • Hand flapping
    • Obsessive-compulsive behavior
    • Tantrums or aggressive outbursts
    • Passivity or refusal to cooperate
Social skills problems
  • Difficulty sharing or understanding other’s point of view
  • Problems with the sleep cycle are common
Behavior seen in some children who have CHARGE
  • Higher level of anxiety or nervousness possible
  • Repetitive questions about same topics
  • Inflexible behavior
  • Upset with change in schedule or routine
  • Impulsive
  • Obsessive
  • Self-stimulation
  • Poor self-regulation
  • Executive function disorder
  • Attention deficit hyperactivity disorder
  • Pervasive developmental disorders
  • Obsessive-compulsive disorder
  • Autistic like behaviors
  • Tic disorders

What you can do

Self-regulation
  • Talking about fatigue, anger, boredom, and restlessness
  • Give them words (signs) for what they are feeling so they can learn to express it.
  • Alternate active with sedentary activities
  • Challenging with easier, fun activities.
  • The child may not be a good judge of fatigue
  • Impose sensory breaks and schedule rest time
May require an alternative space
  • May have difficulty sitting or standing without supports
  • Adaptive chairs may help
  • Some can sit at desk but may need a break in a horizontal position to relax      
  • Bean bag chairs
  • Soft cushion on floor
  • Quiet space
  • Low lighting
  • Weighted blanket or vest