Rett Syndrome, Testing and Abby

Dear Abby's TEAM, My name is Kate Ahern. I have a master's of science in intensive special education and am both a practicing special educator and assistive technology specialist. My focus is on Augmentative and Alternative Communication and of particular interest to me is Rett Syndrome and augmentative communication. I have reviewed multiple tapes of Abby using various methods of augmentative communication and demonstrating knowledge of basic concepts. It is clear to me that Abby retains a higher level of motor ability than many girls and women with Rett Syndrome. Although she does not have the ability to use her hands to point or select she does, clearly, have the ability to use her eyes and her nose for communication. She is able to use eyegaze controlled speech generating devices with either her eyes through eye gaze tracking or her nose, by touching her nose to the screen. Apraxia is perhaps the most disabling part of Rett Syndrome. Essentially apraxia is a problem with intentional motor movements. The cruelty of apraxia is the more intent the person has the harder it is for her to move with deliberation. This means we must take particular care in how we ask girls with Rett Syndrome to communicate. We must be careful to let them use the skills that work best for them, in Abby's case her eyes and her nose. We also must be sure not to fall into the trap of testing and asking questions. Like any child the girl with Rett Syndrome wants to please. Abby wants to please. But when we test her and ask her questions, especially without much "wait time" we put them in an impossible situation - they want to please but their apraxia makes that next to impossible. In the past the assumed route to success in apraxia like this was so much drill and practice that the motor movement became automatic and the apraxia had less of an effect. We know, through research, that this does not work in Rett Sydrome. Instead we must use motivation to overcome apraxia, create such excitement that the apraxia is overcome with the sheer energy of the girl. We can do this with animated interaction, music, highly preferred topics of conversation or items and by using our abilities as educators to "read" what will excite the girl. We can also do this by asking "cloze-style"/open ended questions instead of multiple choice style questions. We also can do this by giving the girls a variety of communicative intents in a speech generating device. Instead of only requests and choices (which cause anxiety in that the girl might make the wrong choice) we can add jokes, comments, questions and other less anxiety provoking things. As educators and therapists I know you want what is best for Abby, for her to reach her highest potential. Please contact me so I can help in any way with Abby. I am happy to converse by email, review video tape and in other ways assist. Thank you, Kate Ahern, M.S.Ed. Ahern TEC; Haverhill, MA