Speech and Communication in RTS: What to Expect and How to Achieve the Best Outcomes Sandra M. Grether, Ph.D. Cincinnati Children’s Hospital Medical Center Developmental and Behavioral Pediatrics University of Cincinnati RTS 2010 Family Conference RTS Communication Profile (Forsythe, Gonzalez & Grether, 2002) Results reported from 53 individuals with RTS ages 1 to 36 • 34% Primarily used Speech • 33% Primarily used Augmentative Communication (AAC) • 33% Combination of Speech and AAC • Children under the age of 10 - 14% used speech primarily to communicate • Children over 10 - 56.5% used speech as primarily to communicate Speech and Language Milestones Reported for Individuals with RTS • Babbled at 1 year, 3 months – Range: 3 months – 3 years • First Words at 3 years, 3 months – Range: 7 months – 1 year • Mama/Dada with meaning at 3 years, 7 months – Range: 8 months – 12 years • Two Words Together at 4 years, 3 months – Range: 1 year – 12 years • Three Words Together at 5 years, 11 months – Range: 2 years – 12 years Speech and Language Profile For Individuals with RTS • Most had difficulty with articulation (76%) – 65% Blends (e.g. “tr”, “bl”) – 55% Individual consonant sounds – 29% Vowels • Decreased sentence length – 42% Three to five word sentences – 38% Five or more word sentences Speech and Language Profile for Individuals with RTS • Expressive Language (what is said) – 64% Vocabulary difficulties – 64% Word ending difficulties (e.g. verb endings “ing”, “ed”; plurals “s”) – 60% Grammar difficulties • Fluency – 26% reported difficulties • Overall a slower rate of speech was reported Speech and Language Profile for Individuals with RTS Listening and Hearing • Able to follow directions (96%) – 79% Simple directions – 28% Complex directions – 21% Written directions • Difficulty hearing (33%) – 40% used hearing aids – 13% used an amplification device (e.g. auditory trainer) Augmentative & Alternative Communication (AAC) • Method of communication used by individuals with severe speech and language disabilities • AAC is used for those individuals who are unable to use verbal speech or whose speech is extremely difficult to understand • Individuals may use gestures, communication (picture/word) boards, pictures, symbols, drawings or a combination of all of these • AAC helps to clarify and/or improve existing receptive and expressive language skills AAC Strategies Used by Individuals with RTS • • • • 83% 73% 43% 43% Sign Language Gestures Picture Boards Speech Generating Communication Devices • 3 additional studies in 2004 and 2005 looked at how effectively children with RTS used AAC across different settings and with different partners using Social Networks: A Communication Inventory for Individuals with Complex Communication Needs and their Communication Partners AAC Expressive Language Ability Reported by Individuals with RTS • • • • 30% Single words 26% One to two word combinations 35% Three to five word combinations 9% Five words or more • Difficulties reported in understanding vocabulary (18%), grammar (45%) and word endings (55%) Food for Thought • Process of developing communication competence begins at birth. • Developmentally, early years are a time of rapid change and growth • Time of uncertainty and adjustment as you cope with your small child with RTS • Need for early AAC intervention can be critical Families Have Questions • What can we do to help speech development? • Do some AAC techniques discourage speech development? • How much emphasis and time should we devote to working on AAC approaches? • What technology is worth investing in? When? • What are the most effective kinds of AAC treatment approaches for my child with RTS? • Who can help us? Families….. ….. Need to feel comfortable that we are not trying to substitute for the normal development of speech and language. There is NO documentation to support that AAC reduces an individual’s motivation to verbally communicate or develop speech. Millar, Light, Schlosser, 2006 Why Do We Communicate? Behavior Regulation • Requesting Objects • Requesting Actions • Protesting Why Do We Communicate? Social Interaction • Requesting Social Routines • Showing Off • Greeting • Calling • Acknowledgement • Requesting Permission Why Do We Communicate? Joint Attention • Commenting • Asking for Information • Clarifying Information Challenge • To help your child with RTS “communicate” effectively and to express novel ideas • To help develop socially effective communication across settings • To find communication tools that will help children with RTS learn language (including literacy skills) • To communicate efficiently and QUICKLY in all situations. Communicative Competence • Goal to continue to develop speech as much as possible. • Be as competent as possible at using any AAC system set up for them. • Don’t forget! Your child with RTS not only needs to learn how to find the words to say, but also how to operate (e.g. turn on and off) their device. • Need to be motivated to use their device • Have a good attitude about learning when they need to find something. Basic Approaches • Early focus for children with RTS should be on basic interaction skills and receptive language development • Family-centered model of care • Importance of paying attention to the cognitive skills behind basic communication and language development – cause/effect and means/ends relationships; intentional behaviors; ability to use joint attention; ability to understand concepts that symbols/words represent Basic Approaches • Professionals need to start slowly and gradually introduce AAC strategies to young children with RTS • Use low-tech strategies • Whenever physically possible – use speech, signs, and gestures • Use digitized (recorded speech) devices early on – greater intonation (can be dynamic screen, photos) • Will need synthesized speech devices when learning to read and spell Focus of AAC Strategies • Support the development of natural speech • Promote active participation in conversations • Increase communication opportunities • Provide receptive language training • Provide expressive language training • Support the development of beginning reading and writing skills “Language Code” Skills Needed • Children with RTS who use AAC don’t develop sufficient expressive skills using speech to meet their communication needs • Will need to develop skills in the “language code” of the AAC systems – Learn how to use AAC symbols or pictures to represent meaning – Learn how to combine symbols to express more complex ideas Receptive Language Training • Model how to use communication boards/pages • Speech is paired with pointing to pictures and symbols (e.g. introducing a “second picture language”) • Also helps expressively – child can imitate model (but no pressure) • All communication attempts are acknowledged and responded to • Also called: – Aided Language Stimulation – System for Augmenting Language (SAL) Some Children with RTS Have Additional Difficulties • Difficulties with motor planning (affects pointing) • Do not always understand what is spoken to them • Sometimes have great difficulty speaking meaningfully (e.g. may be able to repeat entire commercial but not tell you what they want to watch) • AAC helps clarify or add information to speech and gestures/signs • AAC helps increase language by increasing vocabulary: include verbs, descriptor, exclamatory comments, in addition to nouns/object words Engineering the Environment • Create communication opportunities thoughtfully and deliberately • Identify what is motivating to your child with RTS • Set up the situation so your child with RTS has to communicate (e.g. using AAC) to complete the activity, find an object, or correct a problem (“environmental sabotage”). May Need to Introduce AAC Slowly Whether low tech pictures or speech generating device: • Introduce a single symbol or button with nothing (symbol, not the button, is the important factor) • Introduce symbols/pictures that child with RTS likes AND dislikes to help them learn to discriminate between symbols/pictures Identify Environments • Identify where SGD will first be used • Introduce during familiar routines that provide lots of opportunities for communicating/saying things (e.g. circle time, snack, free choice, recess) • Make sure these are “positive” opportunities • Set up so they are situations where you would have to say something (e.g. “How many do you want?”; “Do you want the big one or little one?”) Identify Vocabulary • Need vocabulary that is appropriate for the learner and the environment • Words and phrases should be “age” and developmentally appropriate • Words and phrases should be meaningful and motivating to your child with RTS • Words and phrases serve a specific communicative function (e.g. requesting, greeting, protesting) Ways to Communicate • • • • • Eye Gaze Facial Expression Vocalization Speech Pointing to: objects, photographs, line drawings, and/or symbols • Gestures/Sign Language • Writing • Speech Generating Device • Cell Phone (texting/calling) Behaviors Are Also Communication • Interpret behaviors as having communicative meaning • Shape into more acceptable forms if needed • Keep a communication diary of all of child’s gestures or ways to indicate what he/she wants so that all their communication partners will know and recognize them • Consider nonsymbolic (objects/gestures) if child isn’t ready for symbolic (pictures/symbols) Determine Methods of Access to AAC Systems • Consider physical abilities • Access methods may vary on the activity • Make sure view of activity is not blocked by the communication system • Make sure access to communication display also helps participation opportunities with peers and/or materials Low Tech Displays • • • • • • Make them FUN to use. Make them EASY to use. Make them MEANINGFUL to your child/student. Don’t get hung up on nouns! Represent and organize vocabulary meaningfully. Vocabulary should give child/student a way to control activities and people. • Provide social vocabulary. • Make displays activity based. • Provide access to a larger vocabulary than you expect your child/student to use. Organizing a Vocabulary System Linguistic organization - Fitzgerald Key • left to right linguistic (reading) order • arranged in classes according to where they typically occur in a sentence • color coded • questions (purple), followed by people (yellow), action words (green), descriptors (blue), and finally objects/nouns (orange), (social/phrases – pink) Child Play Theme Increasing Vocabulary • Increase number of symbols on single page • Increase number of overlays/pages • Increase types of words – pronouns, verbs, adjectives/descriptors, prepositions • Increase word endings – verb tense (“ing”, “ed”), plural (“s”), possessive (“s”) Core versus Fringe Vocabulary Need a Mix of Both! • Core – Highly functional and/or common words and phrases (e.g. me/you, want, stop, more) – Items related to basic needs or short social messages (e.g. help, no, hi/bye) • Fringe – words are specific to the content of a lesson or activity or related to a specific topic (e.g. baseball, book, restaurant) – may be specific to particular individuals If You Give a Mouse a Cookie Training Strategies – Light Cueing • Shadow light cueing - designed to help child select message more independently – Constant/flashing light cue – Pause - momentary light cue – Search light cue - cues when to use SGD • Prompt hierarchy - does child need a cue because he has not yet learned the message to use or doesn’t recognize the corresponding symbol/picture yet? Levels of Cueing • Move from least support to most support – try to provide only the support that is needed • Insert pause time (4-5 seconds) before using prompt (consider child with RTS’s attention span, motor planning abilities, & moods) • Allow child time to scan pictures and choose one that is most appropriate • Physical over verbal (e.g. light vs. physical point; general vs. specific; row vs. symbol) Allow Learner with RTS to Explore • Give opportunities for child to independently explore any communication device or system. • We learn through play and exploration! User Profiles Beginning or Emerging Communicators • No reliable method for using symbols or pictures yet • Using beginning communication strategies (visual schedules, single message devices, choice making/requesting) • May use facial expressions, body language, gestures or vocalizations to tell you what they want • May also use a few rote signs or words or a very simple communication device. User Profiles Context-dependent communicator • Can use pictures or symbols but limited to specific contexts, activities or partners • Some individuals can communicate only with highly familiar partners because speech is severely unintelligible • Some may be limited in different settings or situations because they do not have enough vocabulary or it is not appropriate for that setting • May benefit from visual scenes and/or photos for context Visual Scenes Set Context User Profiles Independent Communicator • Interact with both familiar and unfamiliar partners about any topic in any context. • They can usually read and write and have the ability to communicate any message independently. • May benefit from using a keyboard with core vocabulary and social messages Word Core Vocabulary Set Proloquo2Go Combo Pack ($650.00) http://www.proloquo2go .com/ software only ($189.00) Apple iPod touch 8 GB (2nd Generation) and iPad (1.3) iTunes gift cards for Proloquo2Go Durable case with an integrated speaker for quality sound - Black Carrying strap so the iPod touch is easily accessible Stylus for iPod touch Getting Started Resource Guide Literacy Learning in the Classroom and at Home • Opportunities to interact with other students/adults • Repeated learning opportunities • Early access to keyboard • Work toward independence Phonological Awareness • Use speech generating device when child cannot practice using their speech • Use keyboard or pages with practice words – Sound blending (c-a-t = cat) – Phoneme segmentation (cat = c+a+t) – Rhyming (bat, rat, hat) Vocabulary • Help child with RTS learn new words by connecting to background knowledge (what they already know) • Activities should be fun and interactive Vocabulary Expansion? For older child also try: • Introducing vocabulary in meaningful experiences. • Brainstorming • Questioning • • • • Predicting Discussing Reading Using graphic organizers (pictures/charts) Students who write become better readers…and writers, and thinkers. Writing • Make sure items are easily accessible • Place markers and crayons in holders • Try computer programs: – KidPix software – Writing with Symbols 2000 by Mayer-Johnson (replaced by Communicate Symwriter) – Boardmaker Symbolate • Use keyboard and blank screen for early scribbling Writing with Symbols 2000 by Mayer-Johnson, Inc. Discontinued – replaced by Communicate Symwriter Boardmaker Plus developed new program called Symbolate. Following Through • Build a participation plan - plan for communication/AAC! • When can these recommendations be used during the student’s day? • What materials/technology will be needed? • What strategies and supports will be needed? Web Resources Augmentative Communication News • http://www.augcominc.com • A bimonthly 8 page newsletter published from 1988 through 2009 with up to date information on a wide variety of AAC issues. All issues now available for free and archived on the website. Closing the Gap • http://www.closingthegap.com • Assistive technology site. Contains a library with articles on AAC. Web Resources YaacK (Augmentative and Alternative Communication (AAC) Connecting Young Kids) • http://aac.unl.edu/yaack • Covers issues related to AAC and young children. Provides information and guidance to families, teachers, speech/language pathologists and anyone else who is involved with a child with special communication needs USSAAC (United States Society for Augmentative and Alternative Communication) • http://www.ussaac.org/links.html • Links to many AAC sites that may be helpful on advocacy, organizations, state and federal agencies, publications, & AAC technology/manufacturers References Blackstone, S. (ed.) 1988 – 2009. Augmentative Communication News. Monterey, CA: Augmentative Communication, Inc. Cafiero, J.M. 2005. Meaning exchanges for people with autism: an introduction to augmentative and alternative communication. Bethesda, MD: Woodbine Hourse Downing, J.E. 2005. Teaching communication skills to students with severe disabilities, 2nd Edition. Baltimore, MD: P.H. Brookes Publishing Co. Downing, J.E. 2008. Including students with severe and multiple disabilities in typical classrooms: Practical strategies for teachers, 3rd Edition. Baltimore, MD: Paul H. Brookes Publishing Co. References Reichle, J. & Wacker, D.P. 1993. Communicative alternatives to challenging behavior: integrating functional assessment and intervention strategies. Baltimore, MD: Paul H. Brookes Publishing Co. Reichle, J., York, J., & Sigafoos, J. 1991. Implementing augmentative and alternative communication: Strategies for learners with severe disabilities. Baltimore, MD: Paul H. Brookes Publishing Co. Soto, G. & Zangari, C. (2009). Practically Speaking: Language, Literacy, & Academic Development for Students with AAC Needs. Baltimore: Paul H. Brookes Publishing Co.