Family Support: The Role of the Pediatric Audiologist Karen M. Ditty, M.S. Texas ENT Specialists, P.A. Antonia Brancia Maxon, Ph.D. Diane Brackett, Ph.D. New England Center for Hearing Rehabilitation 354 Hartford Tpke. Hampton, CT 06247 860-455-1404 nechear@snet.net NECHEAR

Parental Reaction (Luterman) Mourning “the lost normal child” Shock Recognition Denial Acknowledgment Constructive action Parental Expectations NECHEAR

Parental Reaction (Luterman) Audiologist’s role Understand where parents are in process Consider amount of information they can handle at any given time Repeat information Consider culture Culture, community, access NECHEAR

Parental Reaction (Luterman & Maxon) Parents are overwhelmed Long term vs. short term goals “Fixing” the problems Where does child “belong?” “Taking care of” the child How the family changes NECHEAR

Explaining hearing, hearing loss and amplification What is the pediatric audiologist’s role in diagnosis and intervention ? Explaining hearing, hearing loss and amplification NECHEAR

Auditory Development Skill Age Behavior Localization 6 mos Head turn to source Min Aud Angle 6-18 mos Decreases 15-40 Detect duration differences <6 mos <= 20 msec Pitch perception <6 mos large for detection Speech perception 1 month VOT can be made 2 mos Falling vs. rising F0 9-18 mos Prefer highly novel NECHEAR

Speech Signal Discrimination Learning about inflection angry vs. soothing question vs. statement Learning about intensity loud vs. soft near vs. far Perceptual categories consonants vowels NECHEAR

Auditory Connections Objects make specific sounds Important people make specific sounds Food preparation has specific sounds Toys, pets, etc. make specific sounds Auditory feedback loop critical NECHEAR

What is the pediatric audiologist’s role in early intervention? Understanding and explaining typical spoken language development NECHEAR

What is progress? Define the area of communication you are talking about…. - auditory skills - speech - spoken language NECHEAR

How does language develop in normally hearing children? Listening, speech, and language develop simultaneously. Meaning is established by hearing sounds, words, phrases used in a particular situational context. Refinement of skills occur by comparing one’s own production with a model. Spoken language development continues into adolescence. NECHEAR

How does spoken language develop in children with hearing loss? The same way if the child has access to spoken language through appropriate sensory device. Listening, speech, and language simultaneously. Meaning = hearing in context Refinement occurs with comparison to a model. Spoken language development through teens. NECHEAR

BUT…….. It is difficult to provide sufficient audible exposure to language in totally natural situations The parent/therapist needs to purposely increase exposure to spoken language to counteract the many times that it is “masked” by noise or distance. The “conscious” process of ensuring reception and understanding begins at identification and continues through adolescence. NECHEAR

EXPECTATION Children who grow up using appropriate sensory devices have the potential to develop superior spoken language skills. Achievement of that potential is dependent on: quality of the auditory information dependence on auditory information input from parents/therapists/children high expectations NECHEAR

What is the pediatric audiologist’s role in early intervention? Basic principles of early intervention NECHEAR

Service Provision Families should have equal access to a coordinated program of comprehensive services that: foster collaborative partnerships are family centered occur in natural settings recognize best practice in early intervention are built on mutual respect and choice NECHEAR

Audiologic Habilitation Pediatric audiologist expertise in infant hearing aid selection and fitting expertise in using appropriate pediatric testing equipment and methods experience working with infants and their families flexibility in scheduling NECHEAR

Audiologic Habilitation Pediatric aural rehabilitationist expertise in infant development infant auditory development infant speech and language acquisition experience working with infants and their families flexibility in scheduling NECHEAR

What is the pediatric audiologist’s role in early intervention? Supporting family’s understanding of language choices NECHEAR

Communication Modality Spoken language options auditory-verbal use amplified residual hearing to learn to listen, comprehend spoken language uses auditory input only oral/aural use amplified residual hearing to acquire spoken receptive and expressive language uses auditory input with speech reading when necessary NECHEAR

Communication Modality Spoken language options cued speech use hand configurations and positions to assist in identifying and discriminating among visible speech sounds uses auditory input when possible total communication use all means of communication (sign, auditory) to acquire spoken language - e.g., Signing Exact English NECHEAR

Communication Modality American Sign Language A separate language - not based on spoken English Use hand signs and finger spelling to acquire language with its own vocabulary and syntax Does not use auditory input NECHEAR

What is the pediatric audiologist’s role in early intervention? Helping families understand and select sensory devices NECHEAR

Purpose of Amplification Accessing the Speech Signal Speech must be well above detection within an appropriate dynamic range Maximal exposure to speech spectrum Maximizing use of residual hearing Develop/maintain auditory feedback loop NECHEAR

Amplification Candidacy Any child with any degree of hearing loss is a candidate for amplification Without amplification with 15 dB HL thresholds 98% of everyday speech is received with 40 dB HL thresholds 50% of everyday speech is received with 55 dB HL thresholds 5% of everyday speech is received NECHEAR

Pediatric Amplification Fitting Initiate amplification process immediately after diagnosis or change in hearing levels Select, fit and validate amplification with clinical and functional evaluations NECHEAR

Pediatric Hearing Aid Fitting/Validation Ongoing process with flexible instrument Clinical measures More audiological data - setting adjustment Observe behaviors, communication, environment Audiologist Family Service providers NECHEAR

Pediatric amplification fitting Audiologist should use real-ear measures Audiologist should use prescriptive fitting Audiologist should have experience with functional measures of benefit Audiologist should have scheduling flexibility and understand the need for immediacy of fitting NECHEAR

What is the pediatric audiologist’s role in early intervention? Helping families understand problems and daily use of amplification NECHEAR

Practical Problems Problem Solution Maintaining BTE Huggies, Strap holder, clips Removing batteries Battery door lock Changing volume Volume cover, deactivate volume NECHEAR

Issues with Amplification Behavior Problems Solutions Blinking, flinching Output/gain too Decrease output to loud sounds high; tolerance prob. or gain Pulling out earmolds Not used to molds Use “huggies” or strap Poorly fitting molds Remake or refit Sore ears- allergic Remake with hypoallergenic NECHEAR

Issues with Amplification Behavior Problems Solutions Feedback Inappropriate settings Reprogram Cerumen plug Medical treatment Poorly fitting mold Remake OME Medical treatment Pulling on or chewing Cords too obvious String cords cords behind back, through clothing; decrease length Not responding to Poor high frequency Change settings; high pitches amplification modify earmolds; frequency trans. NECHEAR

Issues with Amplification Behavior Problems Solutions Blinking, startling Over amplification in Reduce low gain; to low pitches low frequencies change FRC, h.a. Poor responses to Not a full-time user; Work to better use sounds Cannot use traditional Consider CI amplification NECHEAR

What is the pediatric audiologist’s role in early intervention? Helping families understand candidacy for cochlear implants NECHEAR

UNHS affects the age of cochlear implant candidacy identification Bilateral severe to profound sensorineural hearing loss Infant/toddler cannot benefit from traditional amplification 12 months old is recommended lowest age. Some surgeons are implanting younger infants. NECHEAR

Factors that Facilitate CI Success Parents know about hearing loss and accept long-term problems Parents understand the implant is not a cure Parents are committed to implant use Parents are committed to therapy NECHEAR

Factors that Facilitate CI Success Family has access to therapy and mapping facilities Family is motivated One parent at home - minimal day care The household is organized Child is vocalizing NECHEAR

What is the pediatric audiologist’s role in early intervention? Helping families understand problems and daily living with a cochlear implant NECHEAR

Information Needed by Parents Parents wanted most information prior to surgery, but wanted continued informational support post-implant Parents felt emotional support was most lacking Majority of parents felt there needed to be a professional liaison between CI center and educational program (Most and Zaidman-Zait, 2003) NECHEAR

Information and Follow-up for Parents Cochlear implant orientation and ongoing support for all care providers On-going mapping after initial stimulation When changes in responses to sound are seen When changes in vocal/verbal output are seen On-going service by early intervention provider NECHEAR

Practical Problems Problem Solution Maintaining headpiece Huggies, Strap holder, clips Chewing on cords Stringing wires behind and headpieces Changing volume Locking volume control NECHEAR

Issues with Cochlear Implants Behavior Problems Solutions Blinking, flinching Cs, Ms too Decrease those to loud sounds high; facial nerve levels, turn off stimulation electrodes Red, sore spot Magnet strength Change magnets under headpiece too much Use moleskin Not responding to Inadequate high Change Ts, Cs/Ms; high pitches frequency stimulation change frequency table NECHEAR

Issues with Cochlear Implants Behavior Problems Solutions Not responding to Inadequate low Change Ts, Cs/Ms; high pitches frequency stimulation change frequency table Soft voice Over stimulation Change Ts/Cs Loud Under stimulation Change Ts/Cs Poor voice quality Inadequate stimulation Change settings NECHEAR

What is the pediatric audiologist’s role in early intervention? Helping families understand life transitions NECHEAR

Transitions: Parent Perspective There are always transitions in life There are always options in the transition periods Knowing options and goals helps through the process There is more than one way to get through the transition with a positive outcome NECHEAR

Transitions Early Intervention to School System Elementary to Middle School Middle School to High School Life After High School NECHEAR

Referral to and Enrollment in Early Intervention Know established IDEA Part C (0-36 months) guidelines in state Know child eligibility criteria automatic enrollment - diagnosed condition significant developmental delay know state guidelines for selecting a program NECHEAR

Enrollment in Early Intervention Develop Individualized Family Service Plan (IFSP) All services speech and language development auditory development assistive technology Goals and objectives Timelines NECHEAR

Components of IFSP for I/T with Hearing Loss Amplification provision parent education Audiological monitoring Development of auditory skills Communication development listening skills - speech perception speech production language development Monitoring middle ear status NECHEAR

Language Development: Determining what children need to know at various ages Need to determine Interactors Adults exposed to Children exposed to Situations home school community NECHEAR

Leaving Early Intervention Helping parents understand differences in LEA and EI approaches Working toward a smooth transition Ensuring good services continue NECHEAR

“What’s the difference” Goals of Birth to Three Strengthen families to meet the developmental and health-related needs of their infants and toddlers who may have delays or disabilities Families must be involved with the process to develop the IFSP Goals of Special Education Educate the child with a delay or disability Families must be members of the PPT meetings that make decisions on the education of their child NECHEAR

Timeline Referral to LEA Investigate Observe preschools word of mouth, phone calls to Special Education Director, Teacher of the Hearing Impaired, or other people in the school system with which you are familiar Observe preschools neighborhood preschools, Special Education Preschools, preschools for children with hearing impairment NECHEAR

Things to consider Services Assistive Technology Classroom Environment individual therapy center-based or school based consultations Assistive Technology FM MAP adjustments Classroom Environment acoustics teaching style language of other students willingness of teacher to make modifications (if not already) NECHEAR

Things to consider Part time preschool - is your child able to be home for the rest of the day or is another preschool or daycare involved? Availability of full-time preschool? Extended school year In-service Training technology classroom modifications teaching styles NECHEAR

Elementary to Middle School Transition NECHEAR

Middle School Language Adults Children Environment parents siblings home family ------------ ------------- ----------- teachers classmates (20+) school ------------ ------------- ------------- coach team sports fields social group (3+) community NECHEAR

Differences Moving from a sheltered environment to less protection Multiple teachers Teachers are still working with a restricted number of students More “specials” options Foreign language Shorter length of time during year NECHEAR

Teachers Modifications become extremely important Repeat, rephrase, direct lessons, etc. Willing to use an FM system Microphone technique Pass around microphone Want to have input into the teachers (team) that are selected NECHEAR

Academics More content harder language Higher expectations for getting information without “spoon feeding” Where does the paraprofessional fit? Scripting really critical What classes do you give up for special services Communication demands NECHEAR

Potential Issues The “dread FM” Adolescence It can never be too small or too invisible Adolescence Socialization - old friends change Still a limited number of groups Everyone should be the same Separating “typical” from hearing loss problems NECHEAR

Middle School to High School NECHEAR

Differences Higher expectations More rooms More student independence Less family input Less written information sent to family More rooms Need to ensure good listening conditions Specials: new vocabulary, noise NECHEAR

Teachers More difficulty finding teachers who will readily make modifications Different teacher for every subject Each teacher responsible for many more students Teacher does not know each child as well Willing to use an FM system May not “get” the need for it NECHEAR

Teachers They need more in-service training, but they have less time for it More difficult to get team meetings organized Less likely to notice changes NECHEAR

Academics More content harder language Foreign language Levels of classes How does the paraprofessional work at this level? Note taking - listening and writing at the same time NECHEAR

Academics Having a note taker Literature vs reading College preparation vs vocational Interaction demands of classes Communication demands of the classes Written demands of the classes NECHEAR

Potential Issues Sports can be a form “automatic” social groups More social groups to choose from - likely to find a comfortable fit More choices for different interests School-related social interactions take place in noise, e.g., cafeteria NECHEAR

High School Language Adults Children Environment parents siblings home family ------------ ------------- ----------- teachers classmates (20+) school ------------ ------------- ------------- coach team sports fields social group (3+) community 1:1 social community NECHEAR

Life After High School and the beat goes on NECHEAR