The Genetic Connection

Caring for the Caregiver

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A genetic hearing loss diagnosis can bring an added layer of questions, emotions, and decisions for families. You may be wondering what the diagnosis means for your child, what the future may hold, where to find reliable information, or how to connect with other parents who truly understand what you’re experiencing.

Between navigating diagnoses, exploring resources, making important decisions, and supporting your child’s needs, it’s easy to put your own well-being on the back burner. But taking care of yourself is just as important as caring for your child, and your well-being deserves to be a priority, too!

This month’s session will be led by Carly Spiegel. Carly is a parent of two boys with a passion for empowering families of children with hearing loss. Her younger son is profoundly deaf, and their family has navigated the early intervention journey, ASL, genetics, mental health, and immersion into the Deaf culture and community. As a Parent Leader for the Florida School for the Deaf and the Blind and a community ASL interpreter, she brings both personal experience and professional insight to supporting families.

Understanding both the joys and demands of this journey, Carly is changing the conversation around caregiver self-care: it is not a luxury, it is a responsibility. Her goal is to empower caregivers to recognize that their own well-being matters and that caring for themselves is an essential part of creating a healthy, sustainable family life.

HLAA’s new peer support group provides a welcoming virtual space for parents of children with genetic hearing loss to connect, share experiences, ask questions, and learn from one another.

Whether you’re just beginning to navigate a genetic hearing loss diagnosis or further along in your journey, you’ll have an opportunity to learn from an expert, connect with other parents, and find support in a community that understands.

The remaining 2026 meetings will be held at the same time on the following dates: November 19 and December 17.

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Helpful Tips

• Zoom. The meeting will be held on Zoom. After registering, the Zoom meeting link will be emailed to you. Please save your email and make sure to check your spam or junk folder if you have not received the meeting link.
• Use a computer. If possible, attend the webinar on a computer rather than via a smart phone or iPad. This will give you the best layout to view the captions, as well as other meeting features.
• Install or update Zoom. Make sure you have Zoom installed.
  • Basic Zoom overview for Windows and MacOS
• Captions. These meetings are free with live captions available.
• Check your time zone. If you are in a different time zone than Eastern, please adjust your calendar in advance so you don’t miss the meeting.

Questions? Feel free to email us at chapters@hearingloss.org.