2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
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:
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Handouts:
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Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Penni Echols
(Primary Presenter), Nevada Hands & Voices, CHARGE Syndrome Foundation, penni.echols@gmail.com;
Penni Echols is the Guide By Your Side Coordinator for Nevada Hands & Voices. She has been employed as an Educational Advocate since 2020 and a Parent Guide since 2021. She passionately believes that every child can communicate when they have the right support and a willing partner. She is a graduate of the Hands & Voices Leadership to Leadership program and volunteers as one of the moderators in the H&V DHH Plus Parent Support Facebook community. In addition, she volunteers as a member of the Board of Directors for the CHARGE Syndrome Foundation and as a Member of the Nevada Department of Education’s Special Education Advisory Committee. Penni and her husband Micah live in Las Vegas, Nevada with their six daughters. Their youngest, Martha was born in 2014 with CHARGE syndrome and is deafblind with additional medical needs.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Nevada Hands & Voices.
Nature: Employee.
Nonfinancial -
No relevant nonfinancial relationship exists.