Date post: | 11-Jan-2015 |
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Education |
Upload: | kate-ahern |
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ADVENTURES IN RETT SYNDROMEMOMS TALK ABOUT THE ROLE OF AT AND AAC
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
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
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!
MY ROLE
Samantha 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 pages
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
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
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
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