Rett Syndrome: Helpful Hints
All material Copyright© 2008-2010 International Rett Syndrome Foundation
This article is reprinted with the express permission of International Rett Syndrome Foundation (IRSF) as originally published on their Website.
Remember that she has not lost the will to speak and act, just the way to speak and act.
- Be alert to her subtle cues, particularly visual ones and body language.
- Modify signs that are easier, in her repertoire of movement, and suit her needs.
- Increase her self-confidence by improving her self-awareness; use mirrors, photos, slides, videos.
- Allow ample time for her to respond.
- Make the reinforcement fit the message, and find vocabulary which can be used frequently or during specific daily activities.
- Minimize distractions.
- Be sure that she is seated comfortably and positioned correctly for maximum control and movement.
- Some girls cannot communicate when they hurt. When she is well, ask her what was troubling her before.
- If she is uncomfortable or agitated, make a list of likely problems and ask her those, using “Yes/No.” It is best to include “Something else?” on the list.
- Start small, but do not underestimate her language level or potential.
- If she seems bored and does not respond, things may be too simple, not too difficult.
Use any method that works, and uses the least time and physical effort to communicate, including:
- eye pointing or use of a head pointer or light, or even nose pointing
- use of a pointer attached to any part of her body which works the best
- use of yes/no cards or switches of various sizes and shapes, hand operated, chin operated
- use of a voice output communication device
Featured Organization: International Rett Syndrome Foundation (IRSF)
The core mission of the International Rett Syndrome Foundation is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
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