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Education Supports

It is important to have HIGH LEARNING EXPECTATIONS for children who have Rett/Rett variant or MECP2 related disorders. 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

Possible issues

Girls who have Rett/Rett variant or MECP2 related disorders may have:

  • Abnormal muscle tone
    • Motor milestones that may be delayed include:
      • Sitting and crawling
      • Walking
      • Some have ataxia (difficulty coordinating small motor movement) gait
    • Low muscle tone can lead to abnormal increase in muscle tone, muscle stiffness (75%)
      • Often more pronounced in legs and may lead to mild contractures over time
  • Disturbances in blood flow, especially in lower limbs
  • Intense eye communication or use eye pointing as part of their communication
  • Music therapy, therapeutic horseback riding, swimming have been reported to be of benefit
  • Cognitive challenges of varying degrees, with or without seizures
  • Very delayed speech development; majority of children do not develop speech 
Environment

Consider what affects the environment may have on the child and what offers most comfort.

  • Lighting
  • Noise level
  • Position
  • What stresses her
    • Address issues such as when the child is flooded with sensory overload, is fatigued, or has anxiety
Eye gaze devices
  • My Tobii might offer technology to assist

What you can do

Motor issues
  • Ataxia (difficulty coordinating smooth motor movement)
    • Unstable or non-walking children may benefit from physical supports in the classroom.
    • They may need extra supports/people to help them in their academic program and to be fully included.
    • Children who have Rett/Rett variant or MECP2 related disorders with more motor issues may need extra space and/or minimal obstructions to be safe.
  • Physical therapy
    • Adaptive chairs or positioning support may be helpful
    • Stretching exercises can help maintain joint range of motion, prevent secondary contractures, and prolong ability to walk
  • Occupational therapy
    • May help with fine motor and oral motor control
    • Planning and coordinating physical movement may be hard due to fine motor challenges.
    • Evaluate a person's potential as an oral speakers
  • Movement
    • Physical, speech, and occupational therapy to enable walking, proper positioning, hand use, communication needs, etc.
    • Be aware that bracking and surgery may be needed to align legs
    • Ensure all areas are safe, free of obstacles
    • Music therapy, therapeutic horseback riding, and swimming have been reported to be of benefit.
Appropriate educational strategies

Individualized, flexible, and appropriate educational strategies/supports are keys to success.

  • Intellectual ability may be underestimated due to lower functional abilities.
    • Developmental testing may be difficult because of attention, activity, speech and motor issues.
    • Formalized testing has limitations.  Make sure testing consists of observations in natural settings
  • Attention
    • Child may pay more attention when they are naturally curious.
    • High interest in communication is a sign that child is ready to learn sign language and other ways to communicate.
Speech and language
  • Language challenges are significant in Classical Rett syndrome.
     
    • A small number of children with Rett will learn to use 1 or 2 words consistently
    • May communicate by pointing, using gestures, and using communication boards and Alternative Augmentative Communication (AAC) devices
    • When children have difficulty communicating, they may resort to behaviors such as pulling hair, hitting, biting.
       
      • Suggestions for therapy:
      • Assess if augmentative communication device is necessary and/or appropriate for therapy.
      • Frustration with communication is often the reason for negative behavior. Identifying and intervening to reduce communicative frustrations through environmental modifications is suggested.
      • May not need a behavior plan but rather an effective communication system.
    • Maintain high expectations as abilities vary widely, particularly in Rett variant/MECP2-related disorders. Always assume competence when beginning speech and language therapy.
  • Teach learning strategies for non-verbal expression.
     
    • Consider new technology, computers, and possibly sign language depending on fine motor skills. Focus on non-verbal methods of communication. 
    • Use augmentative communication aids such as picture cards or communication boards early.
    • Communication should work with the child’s desire to socially interact with others in natural settings.
    • Make sure children have opportunities for choice and control in their lives.
    • Incorporate typically developing peers into the child's therapy to promote social interaction as well as provide typical models of language.
    • Find AAC system that allows for maximal social reciprocal communication
    • Encourage finger pointing early so as to develop and maintain the child's ability to use devices.
    • Anyone interacting with the child should have education and training on how to encourage reciprocal communication with the device
      • Modeling is important for learning to use the AAC device and to encourage its use.
    • Continue with strategies that improve oral control to maximize the child's communication.
  • 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.