15th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 13-15, 2016 • San Diego, CA
3/15/2016 | 3:45 PM - 4:15 PM | Topical Session 8 | Pacific Salon 4/5 | 7 - Family Perspectives and Support
Given that hearing loss is a low-incidence disability, parents frequently find that their child is the first deaf or hard of hearing child that people have encountered. This community could include: specialists, educators, childcare providers, coaches, camp counselors, students, friends, family members, or anyone else who interacts with the child. We developed a simple, concise handout that we shared broadly and that evolved over time as our child developed her ability to advocate for her own needs, and as those needs changed. The first handout, designed when she was first identified, consisted of a one-page sheet with important information about battery replacement and the rule: “don’t get wet.” This handout went everywhere via her diaper bag. For primary school, we included a pictorial audiogram, which visually describes the loudness of the frequencies that she could and could not hear, and a list of optimal settings in the classroom. By middle school we were able to link to videos and share information with the multiple teachers electronically. This presentation covers suggestions and experiences with the inevitable glitches and important successes along the gradual evolution from 100% professional/parent advocacy to 100% self-advocacy.
- Understand the shifting primary advocate role from professional to parent to child.
- Develop or help others develop a succinct information packet to share with educators, child-care providers, camps, coaches, and others.
- Learn how to anticipate informational needs of others involved with the deaf or hard of hearing child.
Advocacy Evolution CART
Marjorie Madsen Keilers
(Primary Presenter), Hands & Voices New Mexico, firstname.lastname@example.org;
Marjorie Madsen Keilers is the Executive Director of Hands & Voices New Mexico Chapter (HVNM). Her daughter was born before newborn testing, resulting in her sloping, high-frequency hearing loss going long undetected. This challenging situation sparked Marjorie's interest in serving with HVNM and becoming a member on both the NM EHDI Advisory Council and the NM Deaf Education Task Force. Her daughter writes HearChloe.blogspot.com, to advise deaf and hard of hearing (D/HH) teens, but applicable to all ages. Marjorie's focus is advocating for and educating others on the specific needs of D/HH children. She has an undergraduate degree from M.I.T., an M.B.A from Wharton, and over twenty years of work experience, including being an Air Force officer, working on Wall Street and in Silicon Valley, and serving on other non-profit boards.
Financial - No relevant financial relationship exist.
Nonfinancial - No relevant nonfinancial relationship exist.