Eye gaze and Education in Rett Syndrome

Eye Gaze and Educationfor Girls

with Rett Syndrome

(c) 2012, Kate Ahern, [email protected]

www.teachinglearnerswithmultipleneeds.blogspot.com

What is Rett Syndrome?

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

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)

In her own words:

Where do we start with Rett Syndrome in the Classroom?

Presume Competence!"The Least Dangerous Assumption":

Because educators lack data on outcomes of educational interventions with handicapped students, the criterion of the least dangerous assumption is presented as an interim standard. The criterion holds that without conclusive data educational decisions should be based on assumptions which, if incorrect, for potential will provide the least danger for independent functioning. Donnellan, Anne, (1984) "The Criterion of the Least Dangerous Assumption"

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

I have Rett Syndrome. You can’t imagine the capabilities it hides.

If tomorrow they found a cureAnd I wrote my story.

Which character would you be?The villain who saw only my limitations

Or the hero who saw me?

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 familiar movements when commanded to do so. Persons with apraxia understand such commands, and are willing to carry them out, but are physically unable to perform 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)

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

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 hurtso when a seizure is comingo what they enjoyo "I love you"

Communication Bill of Rights• request desired objects, actions, events

and people• refuse undesired objects, actions, or

events• express personal preferences and

feelings• be offered choices and alternatives• reject offered choices• request and receive another person's

attention and interaction• ask for and receive information about

changes in routine and environment• receive intervention to improve

communication skills

Get a poster ofthe CommunicationBill of Rights:http://www.scopevic.org.au/index.php/cms/frontend/resource/id/68

• receive a response to any communication, whether or not the responder can fulfill the request

• have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times

• have AAC and other AT devices that function properly at all times

• be in environments that promote one's communication as a full partner with other people, including peers

• 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 and linguistically appropriate communications

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

http://www.scopevic.org.au/index.php/cms/frontend/resource/id/68

http://www.scopevic.org.au/index.php/cms/frontend/resource/id/68

Communication Bill of Rights

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

Eye Gaze is an Option:Not THE Answer

More About Access Methods• Direct selection is choosing a letter, word or symbol

by directly pointing to it with a body part of pointing deviceo always the first choice if possibleo 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 chooseo need only one controllable movement to useo may be the best choice for those with more severe

disabilities

modified from: http://depts.washington.edu/augcomm/02_features/02a_accessmethods.htm

What is Eye Pointing?

Eye pointing refers to the way of communicating where the person uses their eyes to look in the direction of a particular item or symbol to indicate choice.

What is Eye Gaze Tracking?

Eye tracking is the process of measuring either the point of gaze ("where we are looking") or the motion of an eye relative to the head.

These terms are often used interchangeably.

Girls with Rett Syndrome are so good at eye pointing it is one of the diagnostic

criteria!

General AAC Research Knowledge• AAC systems need to be

o engagingo 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!”

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

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, don't 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!

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

Let's 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 symbolso consistent symbols, consistent placemento have a "none of these" or "not on this board"

choice • moving to an eye gaze "book"

Multiple Symbol Low Tech Boards• consistent symbol

system• consistent placement

of symbols• the larger the board,

the more symbols you can have

• in the beginning have large spaces between symbols

• if working towards a high tech device work on holding eye gaze on a symbol for no more than 2 seconds to select

• if working towards increased low tech ability only work on looking at the communication partner when the message is finished

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



• 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




• 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!




• 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"

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

Low Tech Learning: Eye Gaze Style

High Tech Eye Gaze AAC• generally costs $8500

for the device, $9000-10000 for the Eye Gaze connection, $700 - 800 for each mounting system

• plus the case, extra keyboards and mice for programmers and other accessories

• IDEA requires that a school district supply a device if it is needed for educational progress

• most health insurances will cover a communication device if it is required for health and safety reasons

• private funding/grants are sometimes available

• please note if a school purchases a device it then belongs to the school - they have no obligation to let it go home and may keep it if the child moves or graduates

How Does It Work?• one or two cameras

are built into the eye gaze unit

• one or more LEDs (which are cleared for safety by the FDA) 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 "cell" or square on the screen and it is highlighted

• the user selects or "clicks" by dwelling eye gaze still in one place for a set time, activating a switch or blinking

• basically you look to choose and dwell, press a switch or blink to select

Communication = Connection

Use your device to:• play games

Communication = ConnectionUse your device to:• play games


Use your device to:• play games• tell stories


Use your device to:• play games• tell stories• share photos


Use your device to:• play games• tell stories• share photos• send txt messages and

email


Use your device to:• play games• tell stories• share photos• send txt messages and

emails• make calls• use Skype

Communication = Choices

• what to say• who to talk to• where to go• when to do things• how to get your

message across

Communication = Control

• play your music (as loud as you want!)

Communication = Control

• play your music (as loud as you want!)

• watch videos

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

It's OK to...

• consider and trial high tech before "mastering" low tech

• add more vocabulary than others might expect

• insist your student have access to her "voice" all day, every day

• to ask others to wait while she formulates and conveys a message

• to acknowledge requests but not honor them

• to ask people to use her device and model communication

Adapting Creatively http://adaptingcreatively.blogspot.com Alea Technologies (2009), "GMU Presentation. What is eye gaze? What do you need to know?" Alea Technologies Website. Downloaded from www.aleatechnologies.com on April 3, 2011.S Cogain http://www.cogain.org/ Donnellan, Anne, (1984) "The Criterion of the Least Dangerous Assumption" Behavioral Disorders, v9 n2 p141-50 Feb 1984 (print copy not available). Gallagher, Rose-Marie (2010)," Eye Gaze Communication Review - A Guest Post", downloaded from www.teachinglearnerswithmultipleneeds.blogspot.com on March 3, 2011 Jorgensen, Carol (2005) "The Least Dangerous Assumption: A Challenge to Create a New Paradigm" Disability Solution Vol 6 issue 3 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 on April 8, 2011 Simplfied Technology http://www.lburkhart.com/ Tots and Tech http://tnt.asu.edu/

Works Cited

http://www.disabilitysolutions.org/newsletters/files/six/6-3.pdf

http://inclusivelife.files.wordpress.com/2007/09/least-dangerous-assumption.pdf

Eye gaze and Education in Rett Syndrome

Education

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