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Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
Eye gaze and Education in Rett Syndrome
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Eye gaze and Education in Rett Syndrome

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Eye gaze and Education in Rett Syndrome

Eye gaze and Education in Rett Syndrome

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  • 1. Eye Gaze and Education for Girls with Rett Syndrome (c) 2012, Kate Ahern, M.S.Ed. teechkidz@gmail.comwww.teachinglearnerswithmultipleneeds.blogspot.com
  • 2. What is Rett Syndrome? • occurs primarily in girls • one in 10,000 to 15,000 girls • loss of purposeful hand movements and development of stereotypic hand movements (wringing, clasping, hand mouthing) • loss of speech • balance and coordination issues, decrease or loss of ability to walk (40% or more loss all ambulatory ability) • breathing problems such as apnea and hyperventilation • anxiety disorder
  • 3. What is Rett Syndrome?• scoliosis (80% of girls)• seizures (60-90% of girls)• swallowing problems• gastrointestinal issues• arrhythmia and other cardiac issues• sleep disorders• tooth grinding• hypotonia and dystonia• growth failure• small hands and feet• autonomic dysfunction (blue tinted, cold hands and feet)
  • 4. In her own words:
  • 5. Where do we start with Rett Syndrome in the Classroom? Presume Competence!"The Least Dangerous Assumption":Because educators lack data on outcomes of educationalinterventions with handicapped students, the criterion of theleast dangerous assumption is presented as an interimstandard. The criterion holds that without conclusive dataeducational decisions should be based on assumptions which,if incorrect, for potential will provide the least danger forindependent functioning.Donnellan, Anne, (1984) "The Criterion of the Least Dangerous Assumption"
  • 6. Myths about Rett Syndrome: • Rett Syndrome can initially be a regressive disorder, but it is NOT progressive • Rett Syndrome is often assumed to cause profound cognitive impairment, although developmental delays are often evident it is unclear if they are a result of the disorder, lack of sensory and educational experiences or a combination of both
  • 7. I have Rett Syndrome.You can’t imagine the capabilities it hides. If tomorrow they found a cure And I wrote my story. Which character would you be? The villain who saw only my limitations Or the hero who saw me?
  • 8. Apraxia"The more she means it, the harder it is to do..."Apraxia is defined as:A neurological disorder exemplified by the inability to carry out familiarmovements when commanded to do so. Persons with apraxia understand suchcommands, and are willing to carry them out, but are physically unable toperform the task.-Cleveland Clinic • in general apraxia affects all movements, although in some cases of Rett Syndrome deliberate eye gaze is spared, at least to some degree • requires increased motor planning time from 5-50 seconds, with an average of 11 seconds • eye gaze may be very effective because girls with Rett Syndrome often have good eye pointing skills and using eye gaze to communicate needs only one motor movement, looking, while other methods of communication access require 2 or more movements (look and point, look and press the switch)
  • 9. Communication• Without communication • we cannot establish and maintain important relationships • we cannot demonstrate our learning and abilities • we cannot speak up when something is wrong • we cannot truly be part of our own worlds• Augmentative and Alternative Communication (AAC) • Augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write. • People with severe speech or language problems rely on AAC to supplement existing speech or replace speech that is not functional. Special augmentative aids, such as picture and symbol communication boards and electronic devices, are available to help people express themselves. This may increase social interaction, school performance, and feelings of self-worth. • AAC users should not stop using speech if they are able to do so. The AAC aids and devices are used to enhance their communication. -ASHA
  • 10. What are our goals?• interactive communication• the ability to not only make choices and indicate needs, but to connect with others• to build neural connections• access to the general curriculum• literacy, numeracy, general knowledge• to improve quality of life• to ensure human rights• individual specific goals o where it hurts o when a seizure is coming o what they enjoy o "I love you"
  • 11. Communication Bill of Rights • receive a response to any • request desired objects, actions, events and communication, whether or not the people responder can fulfill the request • refuse undesired objects, actions, or events • have access to AAC (augmentative and • express personal preferences and feelings alternative communication) and other AT • be offered choices and alternatives (assistive technology) services and devices at • reject offered choices all times • request and receive another persons • have AAC and other AT devices that function attention and interaction properly at all times • ask for and receive information about • be in environments that promote ones changes in routine and environment communication as a full partner with other • receive intervention to improve people, including peers communication skills • be spoken to with respect and courtesy • be spoken to directly and not be spoken for or talked about in the third person while present • have clear, meaningful and culturally andGet a poster of linguistically appropriate communicationsthe CommunicationBill of Rights:http://www.scopevic.org.au/index.php/cms/frontend/resource/id/68 From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3
  • 12. Communication Bill of Rights
  • 13. Eye Gaze is an Option: Not THE Answer• Access methods to communication need to be determined by the TEAM, including the family• Alternative and Augmentative Communication requires an access method choices include: • Direct touch • A mouse alternative • Onscreen or partner assisted scanning and a way to select
  • 14. More About Access Methods• Direct selection is choosing a letter, word or symbol by directly pointing to it with a body part of pointing device o always the first choice if possible o tends to be faster and more efficient than indirect o tends to have a lower cognitive load• Indirect selection is using scanning or encoding to show which letter, word or symbol is being choose o need only one controllable movement to use o may be the best choice for those with more severe disabilities modified from: http://depts.washington.edu/augcomm/02_features/02a_accessmethods.htm
  • 15. What is Eye Pointing?Eye pointing refers to the way of communicating where theperson uses their eyes to look in the direction of a particularitem or symbol to indicate choice. What is Eye Gaze Tracking?Eye tracking is the process of measuring either the point ofgaze ("where we are looking") or the motion of an eye relativeto the head. These terms are often used interchangeably.
  • 16. Girls with Rett Syndrome are so good at eye pointing it is one of the diagnostic criteria!
  • 17. General AAC Research Knowledge• AAC systems need to be o engaging o used for multiple purposes o personally relevant• AAC users learn best if receptive language and expressive language are both addressed• AAC users need modeling (aided language stimulation)• Our goal should be “motivate, model, move out of the way!”
  • 18. When do we choose eye gaze as an access method?Low Tech Eye Pointing • as an entry way to intentional communication • as a back up method when a user is too ill, tired or otherwise unable to use their usual means of communication • as a back up to high tech eye gaze tracking (please remember that everyone needs a back up to high tech!)High Tech Eye Gaze Tracking• when other direct selection methods (pointing, head stick, head tracking, joy stick, etc) do not work• when scanning or encoding is too cumbersome for the user, too fatiguing or too slow• severe apraxia requires an access method with limited movement
  • 19. General Alternative and Augmentative Communication Tips• language in = language out• instruct, model, practice, praise• "close enough is good enough"• all communication is contextual• nouns are not enough• assume intent to teach intent• teach, dont test• life needs to be more than a multiple choice quiz• yes and no are important, but only the beginning• exploring to learn, learning to explore• we are all life long learners• expect communication to get communication• start with limited distractions and gradually add more• build in times to just "talk"• wait!
  • 20. Eye Pointing Strategies• consistent design between boards/pages• consistent placement of symbols that reoccur• consistent set up across all settings (school, home)• increase the space between symbols• gradually build up to more symbols• introduce and explain new objects, symbols or boards• allow time for the user to just explore (aka "talk to herself")• give increased wait time between you asking or saying something and expecting a response, up to a minute or two if needed• Learn together how to make eye gaze AAC work for you
  • 21. Lets Look at Low Tech!• looking at an object to make a choice• looking at things in the environment to communication• looking back and forth from a person to an object/location• using picture communication symbols• teaching "no!" o once you have "no" you can work on "Do you want juice or no?" and "Do you think this is pretty or no?" o this can be followed up with "yes" by modeling, "No. You do not want juice, so yes you want something else."• looking at a display of symbols o consistent symbols, consistent placement o have a "none of these" or "not on this board" choice• moving to an eye gaze "book"
  • 22. Multiple Symbol Low Tech Boards• consistent symbol system • if working towards a high• consistent placement of tech device work on symbols holding eye gaze on a• the larger the board, the symbol for no more than 2 more symbols you can seconds to select have • if working towards• in the beginning have large increased low tech ability spaces between symbols only work on looking at the communication partner when the message is finished
  • 23. Tips for Teaching Low Tech Eye Gaze Communication• Make multiple copies of eye gaze communication boards with core vocabulary like, "more", "stop", "like", "want", "look" to wheelchairs, gait trainers and place in backpacks and purses so they are always available
  • 24. Tips for Teaching Low Tech Eye Gaze Communication• Make multiple copies of eye gaze communication boards with core vocabulary like, "more", "stop", "like", "want", "look" to wheelchairs, gait trainers and place in backpacks and purses so they are always available• Make contextual eye gaze boards that use core vocabulary for various places in the house and store in an accessible manner, for example a laminated bath time board with "wet", "dry", "cold", "hot, "splash", "in", "out" stored in the bathroom or story time boards by the book case
  • 25. Tips for Teaching Low Tech Eye Gaze Communication• Make multiple copies of eye gaze communication boards with core vocabulary like, "more", "stop", "like", "want", "look" to wheelchairs, gait trainers and place in backpacks and purses so they are always available• Make contextual eye gaze boards for various places in the house and store in an accessible manner, for example a laminated bath time board with "wet", "dry", "cold", "hot, "splash", "in", "out" stored in the bathroom or story time boards by the book case• label everything in your house (and ask your school to do the same) with words and symbols, use velcro to attach if possible and then you can hold up the symbols for, say, TV and DVD to allow choice making
  • 26. Tips for Teaching Low Tech Eye Gaze Communication• Make multiple copies of eye gaze communication boards with core vocabulary like, "more", "stop", "like", "want", "look" to wheelchairs, gait trainers and place in backpacks and purses so they are always available• Make contextual eye gaze boards for various places in the house and store in an accessible manner, for example a laminated bath time board with "wet", "dry", "cold", "hot, "splash", "in", "out" stored in the bathroom or story time boards by the book case• label everything in your house with words and symbols, use velcro to attach if possible and then you can hold up the symbols for, say, TV and DVD to allow choice making• model eye gaze communication, use the boards yourself!
  • 27. Tips for Teaching Low Tech Eye Gaze Communication• Make multiple copies of eye gaze communication boards with core vocabulary like, "more", "stop", "like", "want", "look" to wheelchairs, gait trainers and place in backpacks and purses so they are always available• Make contextual eye gaze boards for various places in the house and store in an accessible manner, for example a laminated bath time board with "wet", "dry", "cold", "hot, "splash", "in", "out" stored in the bathroom or story time boards by the book case• label everything in your house with words and symbols, use velcro to attach if possible and then you can hold up the symbols for, say, TV and DVD to allow choice making• model eye gaze communication, use the boards yourself!• allow time for exploration and "talking to yourself"
  • 28. Low Tech Learning: Eye Gaze Style• use highly engaging tasks with a clear beginning and end• use the same vocabulary and set up each time you do the task• allow not only for task completion but comments, questions and continuation/cessation in communication materials• any activity can be adapted for communication - with some effort and creativity
  • 29. High Tech Eye Gaze AAC• generally costs $8500 for the • most health insurances will device, $9000-10000 for the cover a communication device Eye Gaze connection, $700 - if it is required for health and 800 for each mounting system safety reasons• plus the case, extra keyboards • private funding/grants are and mice for programmers sometimes available and other accessories • please note if a school• IDEA requires that a school purchases a device it then district supply a device if it is belongs to the school - they needed for educational have no obligation to let it go progress home and may keep it if the child moves or graduates
  • 30. How Does It Work?• one or two cameras are • the user looks at a point on built into the eye gaze unit the screen and that is• one or more LEDs (which where the cursor goes or are cleared for safety by • the user looks at a "cell" or the FDA) shine a nearly square on the screen and it imperceptible light on the is highlighted eyes • the user selects or "clicks"• the camera "sees" the by dwelling eye gaze still in reflection of the light off one place for a set the pupils time, activating a switch or• an algorithm turns the blinking information from the • basically you look to camera into "mouse" choose and dwell, press a movement switch or blink to select
  • 31. Communication = ConnectionUse your device to:• play games
  • 32. Communication = ConnectionUse your device to:• play games• tell stories
  • 33. Communication = ConnectionUse your device to:• play games• tell stories• share photos
  • 34. Communication = ConnectionUse your device to:• play games• tell stories• share photos• send txt messages and email
  • 35. Communication = ConnectionUse your device to:• play games• tell stories• share photos• send txt messages and emails• make calls• use Skype
  • 36. Communication = Choices• what to say• who to talk to• where to go• when to do things• how to get your message across
  • 37. Communication = Control• play your music (as loud as you want!)
  • 38. Communication = Control• play your music (as loud as you want!)• watch videos
  • 39. Communication = Control• play your music (as loud as you want!)• watch videos• control the TV and DVD player and anything that uses an IR remote control
  • 40. Its OK to...• consider and trial high • to acknowledge requests tech before "mastering" but not honor them low tech • to ask people to use her• add more vocabulary than device and model others might expect communication• insist your student have access to her "voice" all day, every day• to ask others to wait while she formulates and conveys a message
  • 41. Works CitedAdapting Creatively http://adaptingcreatively.blogspot.comAlea Technologies (2009), "GMU Presentation. What is eye gaze? What do you need to know?" Alea TechnologiesWebsite. Downloaded from www.aleatechnologies.com on April 3, 2011.SCogain http://www.cogain.org/Donnellan, Anne, (1984) "The Criterion of the Least Dangerous Assumption" Behavioral Disorders, v9 n2 p141-50 Feb 1984 (printcopy not available).Gallagher, Rose-Marie (2010)," Eye Gaze Communication Review - A Guest Post", downloaded fromwww.teachinglearnerswithmultipleneeds.blogspot.com on March 3, 2011Jorgensen, Carol (2005) "The Least Dangerous Assumption: A Challenge to Create a New Paradigm" Disability Solution Vol 6 issue3 Fall 2005 downloaded from www.disabilitysolutions.org/newsletters/files/six/6-3.pdf on on June 30 2010.Rossetti, Zach and Tashie, Carol (2002) "Outing the prejudice: Making the least dangerous assumption." The Communicator:Newsletter of the Autism National Committee, 2002. downloaded from inclusivelife.files.wordpress.com/2007/09/least-dangerous-assumption.pdf on June 30 2010.SET BC (April, 2003) AAC A Way of Thinking http://www.setbc.org/Download/LearningCentre/Communication/aac_gd.pdf onApril 8, 2011Simplfied Technology http://www.lburkhart.com/Tots and Tech http://tnt.asu.edu/

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