Behavior & Sensory Support

What you need to know

Individuals with Rett/Rett variant or MECP2 related disorder should have neuropsychological evaluations to assess abilities and offer support for behavior challenges.

Behaviors

  • Seemingly inappropriate laughing or long bouts of laughter
  • Sudden, odd facial expressions 
  • Screaming that occurs for no apparent reason/screaming spells
  • Hand licking
  • Grasping of hair or clothing
  • Increasing agitation and irritability as the child ages

Social

  • Social opportunities allow children to express a broad range of feelings and form close bonds and real friendships with others.
  • They should be part of typical family and class activities, household chores, and perform daily living skills.
  • Learn their interests and preferences.
  • Behavioral supports may be helpful in limiting the less desirable behaviors that are socially disruptive and/or self-injurious.

What you can do

  • Make sure teaching strategies being used are appropriate for children who are already socially engaged.

Be proactive with behavioral supports.

  • Discuss involvement of behavioral or mental health professionals, and/or medications with the parents as needed.
  • Firm directions, rules, and clear expectations are helpful. 

Many children have difficulty regulating emotions and behavior.  This is especially true when handling unplanned changes. 

  • Talk through expected changes.
  • The child usually thrives with consistency and routine. The child can be easily upset with disruption.
  • Prepare for any change in schedule.
  • Provide a safe area to share emotions.
  • Teach and model use of words and/or pictures in sharing emotions.
  • Teach, emphasize, and reinforce behaviors you want to see.
  • Make sure the child has an effective communication system. 

Provide social cues and coaching.

  • Provide information to and discuss differences with the child’s peers.
  • Help develop confidence and focus on strengths.
  • Provide positive reinforcement.
  • Teach how to recognize facial expressions, body language, and moods in others.
  • Teach how to regulate own body – sensory strategies may be helpful.