Communication Options: A Discussion with Parents

EHDI 2016 San Diego,CA Christine Kometer, M.Ed, LSLS Cert. AVEd Director, Education Services ckometer@hearwi.org Amy Peters Lalios, MA,CCC-A, LSLS Cert. AVT Director, Therapy Services alalios@hearwi.org Communication Options: A Discussion with Parents

Options are not necessarily common knowledge! Families should be made aware of all communication options and available hearing technologies in an unbiased manner. Information..communicated in culturally sensitive and understandable format. Informed family choice and desired outcome should guide the decision making process. American Academy of Pediatrics Joint Committee on Infant Hearing (2007) Many parents do not get information about options from their audiologist and medical team Matthews, et al., 2009;Berg et. al., 200)

Why Discuss? Family decision Parents in control 92% report they are happy with their decision Professionals in control- 7.7% report they are happy with the decision *61.5% report they Don t know ~Lisa Crawford, Texas H&V (EHDI 2009)

Shared priority: All families deserve unbiased, complete information about communication/ language / education options Alexander Graham Bell American Society for Deaf Children Gallaudet University/ Clerc Center Hand & Voices Joint Commission on Infant Hearing National Association of the Deaf National Cued Speech Association NCHAM/ EHDI

Complex Issue Age of Identification Onset of Hearing loss Degree of Hearing loss Benefit from Hearing Aids Family Dynamics: Siblings & Extended Family Lifestyle Bilingual issues Culture & Values Attitude & Commitment Finances Multiple Issues or Labels Family Support System Urban or Rural Availability of Resources Technology Parents can choose sound Validity of testing Society issues Beliefs about Disability Social Isolation Child s Innate Abilities: learning style, personality, development, inclinations Peers & Social Outlets Educational Options Long term Goals Validity of information Flexibility and fluidity of choicemaking process Let the child lead Copyright 2006 Hands & Voices

Where we begin Images: biographixmedia.com Image: http://georgetown.edu

Brain Architecture video (1 minute, 57 seconds) - Center on the Developing Child Harvard University https://www.youtube.com/watch?v=vnnsn9ijkws Animation depicting synapses in the brain and the basis for neural pathway development. This process is important for all senses

Hearing Loss = Neurodevelopmental 911! Experience Dependent Plasticity! Take advantage of neuro developmental synchrony so that children can become morpho syntactically competent language users.

Early Experiences Matter! Source: Corel, JL. The postnatal development of the human cerebral cortex. Cambridge, MA: Harvard University Press; 1975. http://www.urbanchildinstitute.org/why-0-3/baby-and-brain

Use it or lose it Connections frequently activated are reserved, strengthened & more efficient Connections not consistently activated are naturally repurposed or pruned allowing active connections to strengthen and grow

Windows of opportunity are present at birth The [cerebral] cortex matures in stages/columns and the level of maturity depends on the richness of exposure and experience. 1 Stimulation with sound should occur as early as possible to take advantage of critical periods of neurological and linguistic development 2,3 1. Merzenich, 2010 ; 2. Lennenberg, 1967; Marler, 1970; Clopton and Winfield, 1976; Johnson and Newport, 1989; Newport, 1990: 3. Sharma and Nash, 2009

Early experiences can have a profound effect on brain development!

What it Takes: Communication & Language Development Children learn language most easily when actively engaged in relaxed, meaningful interactions with supportive parents and caregivers Kretschmer & Kretschmer, 1978; Lennenberg, 1967; Leonard, 1991; Ling, 1989; MacDonald & Gilletter, 1989; Menyuk, 1977; Ross, 1990; Estabrooks, 1994

What it Takes: Communication & Language Development Sensory Pathways Visual / Auditory Options for amplification technology Sustained effort towards development

What it Takes: Communication & Language Development Language Input Complete, fluent language Meaningful, relevant Abundant Contextual Repetitive Intentional Developmentally appropriate

What it Takes: Communication & Language Development Consistent Use Meaningful repetition Expectation(s) Access to other users of the language Developmental appropriateness

Underlying Assumptions Anything is possible Every option is open to almost every child and family Parents as decision-makers: Captain of the ship Team is the crew : help you meet your goals for your child and family Preferred Option may change Child s skills and functional abilities can be positively influenced by intentional interaction

Receptive Communication Continuum Fully Visual Communicator Mostly Visual Communicator Mostly Auditory Communicator Fully Auditory Communicator V VA VA Av A Receptive Communication V Depends on visual information from signs / ASL VA Depends on signs / ASL; gets some benefit from auditory information VA Able to understand both signs / ASL and spoken language at high levels of fluency Av Depends on spoken language with some signs or gestures (often for larification) A Depends on auditory information through spoken language Nussbaum, D., Scott, S., Waddy-Smith, B., Koch, M. (2006, abril). Spoken Language and Sign: Optiminzing Learning for children with Cochlear Implants. Paper presented at Laurent Clerc National Deaf Education Center, Washington, D.C.

Expressive Communication Continuum Fully Sign Communicator Mostly Sign Communicator Mostly Oral Communicator Fully Oral Communicator S So SO Os O Expressive Communication S Uses signs / ASL only So Uses signs / ASL with some oral communication SO Able to use both sign and oral communication at high levels of fluency Os Uses spoken language with some signs or gestures (often for clarification) O Uses spoken language only Nussbaum, D., Scott, S., Waddy-Smith, B., Koch, M. (2006, abril). Spoken Language and Sign: Optiminzing Learning for children with Cochlear Implants. Paper presented at Laurent Clerc National Deaf Education Center, Washington, D.C.)

Initial Considerations for Parents How does your child communicate now? How do you envision your child communicating in the future? Movement on the continuum is possible. Functioning can be positively influenced by intentional interaction

Considerations for Parents What are your long-term goals for your child/family? Do you know anything about any of the communication options? What kind of school experience do you want for your child?

Also known as DEFINITION GOALS & OUTCOMES HOW LANGUAGE IS UNDERSTOOD HOW LANGUAGE IS EXPRESSED AMPLIFICATION (HEARING AIDS, COCHLEAR IMPLANTS, FM SYSTEMS, ETC.) WHAT IT TAKES SCHOOL AGE CONSIDERATIONS American Sign Language (ASL) and English as a 2 nd Language Bilingual / Bicultural Bi Bi ASL is the language of the Deaf community and an important part of their culture and identity ASL has its own distinct grammar and does not match spoken English ASL is a fluid, rich language with slang, idioms, etc. The child learns ASL as his/her primary language and learns English as a second language through reading To appreciate the differences between the hearing & Deaf communities Richer understanding of and participation in Deaf culture Child interacts with other ASL users and develops understanding of ASL through rich language exposure English is taught as a second language after child has strong foundation in ASL ASL Written English (or other) Varying proficiency may occur within both language systems Use of amplification is not a requirement for success Parents and family must become proficient in ASL if they are not already Access to Deaf and/or hearing adults fluent in ASL Bilingual-bicultural approaches are most commonly found in residential schools for the Deaf Adapted from NC Beginnings (www.ncbeginorg) Cued Speech Total Communication Auditory Oral Auditory Verbal Listening and Spoken Language A sound-based hand supplement to speech reading 8 handshapes used in 4 locations ( cues ) Cues are used simultaneously while speaking to make help distinguish sounds that look the same on the mouth of spoken language look visually different To access the basic, fundamental properties of spoken languages through the use of vision Has been adapted to 60+ languages and dialects Child learns to understand language using amplification and read speech through cues which represent different sounds Spoken language (with cues) Written English (or other) Maximal use of remaining hearing is strongly encouraged Parents and family are the primary teachers of cued speech to their child Parents must cue at all times while speaking Must learn to cue fluently Child may require a transliterator: a proficient cuer who cues what the teacher(s) and peers say Simultaneous Communciation SimCom or TC A philosophy using a combination of methods including: sign language system, finger spelling, body language, speech, speech reading, listening and amplification. Signs used are not ASL but rather signs borrowed from ASL layered over English to follow English grammar and word order To use any available tool to help the child communicate depending on the situation and conversational partner Child learns to understand language (spoken, signed or both) through rich language exposure to spoken language, a formal signed system and speech reading Spoken language Sign language (not ASL) Fingerspelling & written English (or other) Varying proficiency may occur within both language systems Maximal use of remaining hearing is strongly encouraged Parents and family must learn the sign system Parents must encourage full-time use of amplification Families should consider a language plan to ensure adequate exposure to both signed and auditory systems Placement options vary by district Class would typically be taught by Teacher of the Deaf & HOH Oral A therapy approach emphasizing teaching child to use his/her hearing, speech reading and visual cues to understand and use spoken language To develop listening and spoken language skills to the child s best potential Child learns to understand spoken language through (aided) listening and speech reading Spoken language Written English (or other) Early and consistent and maximal use is critical Parent and family must integrate therapeutic techniques and strategies into daily routines Parents must encourage fulltime use of amplification Placement options vary by district Class would typically be taught by Teacher of the Deaf & HOH AV Therapy A therapy approach which guides and coaches parents to teach their child spoken language through maximal development of listening skills Uses natural developmental patterns of language learning, listening and cognition Requires a certified Auditory Verbal Therapist or Auditory Verbal Educator To integrate listening and spoken language into all aspects of the child s life To promote education in neighborhood schools with typically-hearing peers Child learns to understand spoken language through (aided) hearing Does not rely on speech reading or visual cues for understanding Spoken language Written English (or other) Early, consistent and maximal use is critical Parents and family must integrate therapeutic techniques and strategies into daily routines Parents must encourage fulltime use of amplification Ultimate goal is mainstream classroom setting with typically hearing peers May continue to receive support in and out of class

American Sign Language (ASL) ASL is a full, complete language with its own syntax and grammar system Provides access to the Deaf community Requires parental knowledge of and fluency in ASL No written form ASL users learn written English as a second language Bilingual / Bi-Cultural specialized programs exist, including most state schools for the Deaf

Total Communication / Simultaneous Communication Philosophy involving the use of a signed language system and spoken English simultaneously Requires parental knowledge of and fluency in signed system Child asked to process two sensory stimuli simultaneously May provide the child the opportunity to be bilingual In school: Variability exists in implementation of TC/SimCom programs Classmates generally have hearing loss and use same mode

Cued Speech Handshapes are used as symbols to clarify phonemes that look the same on the mouth when produced Not a language but rather a symbolic system of speech phonemes Requires family members learn to cue Can be a supplement to residual hearing and use of amplification Widely used in some areas of the country and hardly used in others In school: May need staff who can cue to facilitate comprehension in classroom Peers and classmates may or may not cue for themselves

Auditory Oral Approach Promotes listening skills and spoken language A therapy approach emphasizing teaching child to use his/her hearing, speech reading and visual cues to understand and use spoken language Speech reading, natural gestures and facial expressions are also promoted In school AO classrooms promote listening skills and spoken language; classmates often also have hearing loss Teachers of the Deaf and Hard of Hearing

Auditory-Verbal Therapy Promotes development of spoken language and communication skills through listening Uses optimal amplification to guarantee access to sound A developmental, comprehensive therapeutic approach coaching caregivers / parents Parents become the primary facilitators of their child s spoken language development Providers hold LSLS certification designated as LSLS AVT or LSLS AVEd In school: Goal: mainstream classroom with typically hearing peers

Parent / Family Opportunities FamilyLink Activities Monthly outing Pizza Party Orientation Community Partnerships Annual Events for current and past families Program Specialists State GBYS State Deaf Mentor Program Wisconsin Families for Hands & Voices Wisconsin chapter of AG Bell Wisconsin Statewide opportunities via WESPDHH Outreach

Ultimate Goal for ALL Children Well-adjusted, self confident child who uses language to successfully interact with others Child with the necessary foundational skills to be ready to learn at school entry