2023 Early Hearing Detection & Intervention Conference
March 5-7, 2023 • Cincinnati, OH
3/15/2022 | 3:50 PM - 4:15 PM | Thriving with CHARGE Syndrome: Family Perspectives on Supporting Medically Complex Infants | Room 3
Thriving with CHARGE Syndrome: Family Perspectives on Supporting Medically Complex Infants
“Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.” (https://www.chargesyndrome.org/about-charge/overview/)
Presentation will share strategies and skills developed by one family to overcome the stress and trauma of the first years of life.
Our family reflection will demonstrate:
A better understanding of family life with a deafblind and medically complex infant.
The importance of prioritizing the cultivation of parental self-efficacy.
How to consistently and proactively connect families to the appropriate family-to-family support organizations both at the local and national level.
Why we should encourage families to let their child be a ‘kid-first’ and enjoy as many typical childhood experiences as possible.
- Better understand life with a deafblind and medically complex infant
- Demonstrate importance of developing parental self-efficacy
- Encourage a proactive connection to appropriate family to family support organizations
Presentation:
This presentation has not yet been uploaded.
Handouts:
3353554_15020PenniEchols.pdf
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Penni Echols
(Virtual), Nevada Hands & Voices, CHARGE Syndrome Foundation, penni.echols@gmail.com;
Penni Echols works with Nevada Hands & Voices, as an ASTra Advocate in the Advocacy, Support, and Training program and as a Parent Guide in the Guide By Your Side program. She is a graduate of the 2021 Hands and Voices Leadership to Leadership (L2L) Program. Penni is a Lifetime member of the National Family Association for Deaf-Blind (NFADB) and is a NFADB Ambassador. She volunteers as the Nevada Parent Liaison for the CHARGE Syndrome Foundation and serves on their Board of Directors. Her family lives in sunny Las Vegas, Nevada. She and her husband have six daughters; their youngest was born with CHARGE Syndrome in 2014.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exist.
Nonfinancial -
No relevant nonfinancial relationship exist.