It is important to have HIGH LEARNING EXPECTATIONS for children who have MECP2. 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
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 includes observing the child's performance.
- Speech development is very delayed and the majority of children do not develop speech
- Some boys who speak with a few words in childhood may progressively lose speech during adolescence.
- A small number of children will learn to use 1 or 2 words consistently
- May communicate by pointing, using gestures, and by using communication boards and AAC devices.
- When children have difficulty communicating, they may resort to behaviors such as pulling hair, hitting, biting.
- Make sure they have a communication system that is effective for their needs.
- Frustration with communication is often the reason for negative behavior.
- May not need a behavior plan but rather an effective communication system.
- Most boys will have significant intellectual disability (moderate to severe)
- Girls with MECP2 duplication may have cognitive challenges of varying degrees, with or without seizures.
- They 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.
What you can do
- 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 child’s desire to socially interact with others in natural settings.
- Make sure they have opportunities for choice and control in their lives (choose books, colors, clothing, play, work partner, etc.)
- Need multiple means of communication paired with the knowledge of when to use one method vs. another.
- Find AAC system that allows for maximal social reciprocal communication.
- Encourage finger pointing early to help with device use as they age.
- Anyone interacting with the child should have education and training on how to encourage reciprocal communication with the device.
- Model, model, model the use of the AAC device to encourage its use.
- Continue with strategies that improve oral control to maximize their potential as oral speakers.
- 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 with more motor issues may need extra space and/or minimal obstructions to be safe.
- Physical, speech, and occupational therapy to enable walking, proper positioning, hand use, communication needs, etc.
- Bracing and surgery may be needed to align legs.
- Ensure all areas are safe, free of obstacles.