This document discusses the role of assistive technology (AT) and augmentative and alternative communication (AAC) for individuals with Rett syndrome from the perspective of several mothers and professionals. It provides background on Rett syndrome, including that it primarily affects girls and involves neurological regression. It then shares stories of three individuals with Rett syndrome - Samantha, Kendra, and Madasyn - who use AAC devices like the Tobii eye gaze system. The professionals describe their roles in providing weekly therapy and consultations to help the individuals gain communication skills and ensure access to education through AT and AAC support.

1. ADVENTURES IN RETT SYNDROME
MOMS TALK ABOUT THE ROLE OF AT AND AAC

2. WHAT IS RETT SYNDROME?
 Neurological condition primarily affecting
girls
 NOT a degenerative condition
 Usually follows a pattern of typical
development as an young infant, a period
of stalled development and then a
regression as a toddler with later
stabilization
 Typically diagnosed in infancy or the
toddler years
 Caused by one or more of over 200
mutations on the MECP2 gene
 Incidence of 1 in 10,000 births – similar to
cystic fibrosis or ALS

3. RETT SYNDROME SYMPTOMS
 Symptoms include:
 Severe apraxia, nearly all girls are non-speaking
 Hand wringing, clasping, mouthing, clapping or
tapping
 Difficulties with ambulation – only about 50% of girls
with Rett walk
 Dystonia (motor problems)
 Breath holding (apnea)
 Tooth grinding (bruxism)
 Swallowing disorders (dysphagia)
 Sleep disorders
 Sensory and autonomic dysregulation
 Occasional behavioral or emotional dysregulation
 Many girls have seizures
 Potential medical complications such problems
with the heart, lungs, bones (including scoliosis) ,
stomach and gallbladder

4. MY PHILOSOPHY
 Presume Competence
 Work to minimize anxiety and apraxia
 The child is not my only client – the
family must be successful at AT and
AAC for the child to be successful
 Motivate, Model, Move Out of the
Way!
 Literacy is a human right and a life skill
 Whatever it takes!

5. MSYa mRaOntLhaE
 Private assistive technology
specialist
 Communicated with Tobii C-Eye
and has moved to Tobii Eye
Mobile Tablet
 Seen outside of school once a
week for 90 minutes of direct
and 90 minutes of consult
 Weekly visits for two and a half
years
 Year one focus was emerging
communication skills on a Tobii
C-Eye series including:
 Direct tutoring of AAC skills with
Samantha
 Family training on AAC and AT
implementation
 Programming Tobii with custom
 Year two focus was
 Direct tutoring of AAC skills
 Head nod and shake for yes/no
 Increased focus on literacy
 Aiding in transition to new school
 Continued family training
 Year three focus is
 Literacy
 Move to SonoFlex from custom pages
on Tobii Eye Mobile Tablet
 Continued family training
 Increasing AAC outside of home and
school

6. MY ROLE
 Kendra
 Agency provided Assistive
Technology Specialist Funded
by School District
 Fully included in third grade
 Communicates with PODD and
Tobii C-Eye
 Seen weekly, bi-weekly or
monthly depending on TEAM
needs
 Sessions are three hours with
time usually spent primarily in
consult with team
 Has been receiving services for
just under a year
 Goals have included
 Training peers in PODD and Tobii
 Assisting TEAM in providing access
to the general education
curriculum using assistive
technology and adaptations
 Creating materials to support
inclusion
 Training paraprofessional, special
education liaison and speech
therapist in assistive technology,
curriculum adaptation and
augmentative communication
 Holding model session with
Kendra so that the TEAM can
observe implementation
techniques for AAC

7. MY ROLE  Madasyn
 Private assistive technology
specialist
 Communicated with
Dynavox Eye Max; now using
Tobii iSeries and Eye Mobile in
addition to low tech
interventions
 Seen once in school to
complete a comprehensive
communication and assistive
technology evaluation
 Seen in the home twice a
month for 90-120 minutes
direct and 90-120 minutes
consult or device
programming
 Has been receiving services
for a year and a half
 Goals have included
 Completing trials and working with
school team to obtain funding for
a new Tobii eye gaze device
 Yes and no
 Assisting in transition from Dynavox
device to Tobii
 “Between devices” focus on
learning new symbol set and
categorization skills
 Work on yes/no and partner
assisted scanning for
communication and other
activities
 Learning to use new Tobii iSeries
and Eye Mobile devices
 Learning functional
communication skills to decrease
emotional distress

8. OUR PURPOSE TODAY
 To share stories of success and hope
 To encourage professionals to presume
competence in girls and women with Rett
Syndrome
 To highlight the power of Augmentative and
Alternative Communication for those with
Rett Syndrome and there families
 To bring hope and connection to other
families of children with complex
communication needs
 To aid professionals in “thinking outside the
box” in terms of Assistive Technology and
Augmentative Communication for the most
unique learners