Adventures in rett syndrome

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

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Introduction to Closing the Gap Session Adventures in Rett Syndrome

Transcript of Adventures in rett syndrome

Page 1: Adventures in rett syndrome

ADVENTURES IN RETT SYNDROMEMOMS TALK ABOUT THE ROLE OF AT AND AAC

Page 2: Adventures in rett syndrome

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

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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

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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!

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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

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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

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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

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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