People with Rett syndrome can learn, are able to communicate very well, and they deserve to be given the opportunity to show this. The resources in this section will support the implementation of communication strategies and give practical, easy to follow advice for those with Rett syndrome, their families and their support teams at any stage of their journey. It is relevant for anyone looking to implement or enhance communication strategies, for educators wanting to communicate effectively with a student with Rett syndrome and for health professionals needing to include the person with Rett syndrome in all aspects of their care. Don’t forget to keep a eye on our communication events too to see what is happening near you.
People often ask “Is someone with Rett syndrome competent?” The answer is “Yes”. The increased use of eye gaze technology and other teaching methods is demonstrating that some people with Rett syndrome have above average cognition when compared to the neurotypical population while others have some learning difficulties. However regardless of this people with Rett syndrome have a great desire and ability to learn. The phrase “Presume Competence” is gaining momentum within the Rett syndrome community. People with Rett syndrome should be spoken to in an age appropriate manner, they should be encouraged to communicate about a variety of subjects, explore complex thoughts and can be educated on a level with the National Curriculum. Some older people with Rett syndrome have been able to demonstrate that they have taught themselves to read, write and spell, have learnt to work with numbers and are able to learn at degree level.
Many physical symptoms hamper health, energy and concentration levels of both the person with the condition and those who support them. Apraxia disrupts neural pathways, interfering with learning and communication. This, along with the absence of verbal language and purposeful hand use, has historically led to the assumption that people with Rett syndrome were severely cognitively impaired.
You may be asking what should I expect? There will be highs and lows. There are no timescales or rules as to when these processes should start or how far/quickly you get. Nobody is suggesting that progress will be made overnight. What is being suggested however, is that previous assumptions as to the cognitive ability of a person with Rett syndrome are outdated and incorrect.
Related Resources:
An Introduction to AAC for People with Rett Syndrome and other Complex Communication Needs
Establishing Yes/No
Choices
Partner Assisted Scanning
Modelling
Getting Started with Reading
Getting Started with Writing
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