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Don't Cover the Sun With Your Hand. Ann M. Swanson New Mexico School for the Deaf. Second Annual National EHDI Conference Atlanta, GA 2/25/03. First Responders. Hands obscure, obstruct, block, stop, push, interfere, hinder, impede, prevent, slap
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Don't Cover the Sun With Your Hand Ann M. Swanson New Mexico School for the Deaf Second Annual National EHDI Conference Atlanta, GA 2/25/03
First Responders Hands obscure, obstruct, block, stop, push, interfere, hinder, impede, prevent, slap • The first contact is critical- Who’s the messenger? What’s the message? • The flowchart might stop here. • Birth is an intimate, personal experience • A baby is born! Welcome! Celebrate! • Hearing loss referral? There’s sunshine! • Yoshinaga-Itano’s research, Tom, Lisa
Current Status • Flowchart/ professionals- clinical jargon • Programmatic delivery of message in apologetic or straightforward manner- precise language- mismatch • Consideration of OUR resources, not those of the families • The foolish man built his house on sand • Systematic rather than personalized approach • “Fringe” families don’t follow through
When in Rome… (Join the Family) • Poverty, Hispanic and Native American- distinctive diverse cultures and languages • A Framework for Understanding Poverty Ruby K. Payne (2001) aha! Process, Inc. • A Look at the Decisions Hispanic Families Make After the Diagnosis of Deafness (Sharing Results) http://clerccenter.gallaudet.edu
Culture of Poverty 1999: 30.9% Hispanic; 39.8% Native American children live in poverty “No significant learning occurs without a significant relationship.” Dr. James Comer • Socially include people they like- relate! • Resources: Emotional, mental, support systems, spiritual, physical, knowledge of hidden rules and… oh, yeah- financial • Build stamina; identify, mediate cognitive strategies; reactive, survival/feelings-driven decisions can change; exchange hope for fate/destiny; respect matriarchal structure; utilize non-verbals,; recognize value of entertainment; start in the present
Hispanic Culture- A Spectrum • Strong family values, supports • Often high level of religious values • Generosity- other-centered • Hearing loss: “Stigma”; “Ignore”; “No respect”; ostracism • Illegal residency status; distrust • Overlay of poverty culture • Polarized views: Good-bad/ right wrong, emotional • Curanderos • Spanish language: The plane left me. Time walks. Circular story line & communication style
Native American Culture • Perception that individual will be cared for, provided for within the community • Navajo: Clockwise untangles problems; Introductions- clockwise shows respect • Integration & Integrity: Knowledge, wisdom, understanding; spiritual, nutritional, behavioral • Face east during healing ceremonies • 4 directions always acknowledged • Hoskie Besenti, born facing fireplace so his head wouldn’t be like a watermelon • Medicine men, crystal gazers, hand tremblers; matriarchal; tribal community
Perceptions Dictate Behaviors Traditions, beliefs, values, emotions • Entertainment: Refrigerator/camping trip • Directions- what you want to hear • Aspirin- “Don’t take his medicine. It’s bad and doesn’t work. Get it from her. She has good medicine.” • Hogan/ stick & stucco stable
Culturally Inherent Solutions • Match language, align non-verbal/ verbal communication • Relate information in associative way: Personalize, individualize • Spend time diagnosing situation and begin on-going relationship • Positive, hopeful initial contact couched in vignettes, research • Integration rather than specialization- Native American • Identify, utilize family’s support systems; identify decision makers • The wise man built his house on a rock
Safety Nets • One individual in relationship with family- hospital through diagnosis & EI process • Review & give “Good Reasons..” handout • Translated Materials • NCR forms • Metabolic Screening, Vaccination Forms • Family Situation Assessment at hospital (supports, beliefs, transportation): Names, addresses & phone numbers of 2 others • Videos, DVDs (Interactively view, send home) • Diagnostic appointment at well-baby visit • CMS, Maternal Health, PRO, Step*Hi, CYFD, Commission for Deaf & H-H, churches • Train, hire parents • Public service ads: TV/radio stations/ billboards
Positive Outcomes Hands accompany, join, talk, celebrate, encourage, embrace, hold, comfort, support… “…they had extended their arm out for me… they didn’t have to go through all the things that I went through, they didn’t have to be there for me and they were.” “I’m not going to cover the sun with my hand, I’m just going to let the sun come out and see him.”