Ready or not? Our Rett-Girls find their Voice in Eye-Gaze Technology. Rett-Syndrome was discovered by Dr. Prof. Andreas Rett
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- Sharyl Molly Shepherd
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1 Ready or not? Our Rett-Girls find their Voice in Eye-Gaze Technology 1960er Rett-Syndrome was discovered by Dr. Prof. Andreas Rett 1998 localization of the gene mutation 2014 but on question remains: How much do they unterstand? 1
2 The silent girls are talking with their eyes. Evidence of knowledge? 2
3 Studie Rett-Syndrom Center in Montefiore, NY 2012 (Djukic, A. et al) Question: Studie Rett-Syndrom Center in Montefiore, NY 2012 (Djukic, A. et al) 3
4 She is not ready to use eye gaze? Why? She is able to walk? She doesn t need EyeGaze she uses switches?! she shows no interest in using switches she shows no interest on communication ev. miss-interpretation? even NO chance to try! 4
5 EyeGaze Technology two cameras built in Infrared-light shine a nearly imperceptible light on the eyes the camera "sees" the reflection of the light off the pupils an algorithm turns the information from the camera into "mouse" movement the user looks at a point on the screen and that is where the cursor goes or the user looks at a square on screen for apprx. 0,5 sec a click will be activated a synthetic voice speaks Tobii-Geräte mit Augensteuerung I-series C-series PCEyeGo for laptop 5
6 Communication = cause&effect 6
7 Communication = cause&effect Communication = cause&effect 7
8 Communication = Connection Use the device to PLAY games & make music! Communication = Connection Use the device to PLAY (p.e. voice-activated toy (dog) activated by device 8
9 Communication = Connection Use the device to show pictures and tell stories about me, and any theme Use the device to make choices Communication = Choices 9
10 Use the device to control IR-devices (TV, Radio, DVD, ) Communication = Control Communication = knowledge Use the device to use Eye acessable Learning Software 10
11 Parents voices: The Tobii C12 has life with our daughter not made any easier. Now, we have to put up with comments like `stupid, `yucky and `boring. But we are learning more and more about our daughter's personality and we are better able to deal with her wishes. She is more satisfied, more agreeable and she can play on her own, listen to music or watch a short video overall she lives a more independent and richer life. (Stephi Bo, DE) Parents voices: We never heard from AAC till Alexa got 28 years it is never too late to start with UK! And 5 y later we heard of the EyeGazeTechnology, but we thought, it would be too difficult for her, but it isn t! She got the tobii when she was 36 y Alexa loves to communicate! Fam. Pickenhan, DE 11
12 Parents voices: For Vanessa (15) it is a new kind of life-quality she can tell her experiences and choose her own music or ask questions never dreamed, that she could do this one day in this way Family Peckary, AT I don t say anything without my Computer! quick - quick cool thanks i want to talk to you yes thanks i want to talk to you thanks thanks yes thanks my talker thanks cool! 12
13 They feel all the love given to them. They have a great sensitivity for love. I am sure of this. There are many mysteries, and one of them is the girls eyes. I tell all the parents to look at their eyes. The eyes are talking to them. I am sure the girls understand everything! Prof. A. Rett 13
14 No-tech Methods symbols/pics/objects without voice output facial and body language Eye gaze Communication Boards 14
15 Switches for Cause- Effect Low tech Methods Step-by-Step ipad for Rett-Kids? Cause & Effect Apps (touch or switch) Playing Apps TouchMe-Apps Communication Apps GoTalkNow 15
16 SwitchAccess for ipad List of switch-assessable Apps: usefull hardware: Applicator (Pretorian) NewBlue2 Usefull covers Griffin survivor BigGrips BestCool for ipad EyeGaze is an Option not THE answer! Songs on the BigMack Switch-adopted toys Switch-Games on PC Reading with BigMack/SbS Choose of foto-cards Choosing of symbols Integrate symbols in everyday life Daily routine with fotos and symbols 16
17 made books with pics and symbols My summer, Claim acitivity with Step-by-Step Daily calender with symbol-messages for school<->home We adopted anything really anything!! Social scripts on the Step-by-step Touch-device with 3x3 keyguards (2007) HeadTracker (2010) with Laptop and tobii communicator Tobii C12 with Cdot (2011) Hit the button with whatever works The girls find individual and creative ways to use the switches without using their hands! 17
18 Rett and AAC - Problems daily changing forms peripheral vision and react additionally stereotypes inhibited when high expectations apperent unexpected flash alternatives Problem, to repeat an action directly Rett and AAC and Apraxia Ask others to wait while she builts a message Wait, count and pray! (Carolin Musselwithe) Everything is possible, but don t expect it! (Chris Hirsch) Please believe in the Girls! They notice, if they are taken seriously, or not! 18
19 Helpfull Things 19
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