International Rett Syndrome Foundation 2008 Conference
Chicago, IL
     
     

 

Access to Communication: 
"Working together makes it better!"
     

Judy Lariviere, M.Ed., OTR/L
Assistive Technology Specialist &
Occupational Therapist
judy@jlariviere.com
(650) 242-8750
     

http://irsfconf2008.jlariviere.com
     
 

Working Together Makes Access to Communication Better: Two-fold
  • Focus on working with team members who believe in your daughter = progress + success + motivation
  • AAC device is not a replacement for other means of communication; girls experience the best success when they use it in conjunction with their existing and established modes of communication (facial expressions, eye gaze, etc.)
 

Sophie
(10 years old; I started consulting with Sophie’s Mom late Oct/07; first visit in Jan/08)
  • Limited success with access to technology for communication and learning
  • She communicates so much through her eye gaze, eye brow raises, vocalizations
  • Now using Tracker Pro to access 6-location boards BoardMaker with Speaking DynamicallyPro
  • Working towards a portable dynamic display AAC device
 

Strategies used with Sophie
  • Immediate response to all forms of communication
  • Multiple modes of communication; not just relying on Sophie’s use of technology
  • Engaging in multiple back and forth exchanges; success and motivation
  • Her music therapist is “tuned in” and observing - separation of hands facilitates hand movement
  • Minimal language – wait for a response with quiet anticipation
 

Where did Sophie start with optical head pointing?
  • Priory Woods School website (free downloads of music with video)
  • Program for success - Minimize cognitive demands with increased motor demands
  • Teaching AccessAbility – Mouse school (excellent for teaching horizontal, vertical, diagonal movements and then making selections)
  • Develop and integrate communication boards into consistent routines
  • Provide open-ended options that can be reinforced or responded to immediately.
  • Remember, it is not a test, it is communication!
 

Lauren
(10 ½ years old; I have worked with Lauren for the past 7 years)
  • Communicates in many different ways; she is quick with her motor & communication responses
  • Exemplifies what is possible when give independent access to dynamic display AAC device early and program for success
  • Using optical head pointer (Tracker) since 4 years of age
  • First Vantage at 4 ½ years
  • Now 10 ½ years old – second Vantage; second Tracker (TrackerPro)
 

Strategies
  • Real communication – SLP or school team does not know what has been programmed into Lauren’s Vantage for her weekly “Hot News” page or vacation pages
  • Laser pointer – discrete form of modeling – better than a finger which blocks view of symbol/button
  • Facilitate spontaneous “back and forth” exchanges so delayed responses are minimized
  • Accept motor approximations; Don’t wait for 100% accuracy before responding
  • Acknowledge when you observe a girl experiencing difficulty in accessing a location or a switch
  • Take pressure off expecting output
 

Srinidhi
(3 1/2 years old; I started working with Srinidhi in August 2007)
  • Communicates volumes through her eyes, vocalizations, gestures
 

Srinidhi’s best means of access:

  • Started out last August with hands to single switch
  • Two switches different functions
  • Just before progressing to two switch step scanning, Srinidhi’s hand use improved
  • “Shifted gears” - IntelliKeys with different overlays; then tango!
  • Access is dynamic
  • Need to re-evaluate access
 

Hands Plus Another Method of Access
  • Even though girls with Rett Syndrome can use their hands for accessing a dynamic display AAC device, in my experience, they achieve better success with using their head
  • If using hands, explore use of a second method of access incorporating head
    • head pointer, optical head pointer, two switches for step scanning with head/cheeks, or eye gaze
 

Importance of Regulation
  • Before a girl can be expected to attend and engage in an activity and communicate, she needs to be regulated and in a functional state of arousal.
  • Relates to sensory systems
    • Visual, auditory, tactile, proprioceptive, vestibular, taste, and olfactory
  • Easily overstimulated by visual and auditory input (i.e., classroom)
  • When sensory system moves out of a regulated state into defensive mode, even minor sensory events result in increased stress and anxiety
  • Unresponsive to environment – sensory system shutdown
 

Sensory responsiveness
  • Sensory input that is calming or alerting is unique to each girl
  • Each girl’s responsiveness to sensory input is also unique
    • Over-reactive
    • Under-reactive
    • Mixed
  • Consult an Occupational Therapist who specializes in sensory integration
 

In closing
  • There is no limit to what your daughters can communicate and learn!
  • Along the same lines as the African Proverb, “It takes a village to raise a child.”
  • “It takes a team working together to make access to communication better.”
 
 
 
     
     
     
 
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