Rosalie, Small but Mighty Stephanie Kung 10

Rosalie (1.5) has hydrocephalus, a build-up of fluid in the cavities deep within the brain, which comes with the risk of vision problems. She received a cortical visual impairment (CVI) diagnosis from an ophthalmologist who provided her parents with accurate information, for instance: CVI is a brain-based visual impairment, her brain can learn to better understand what she sees as it makes new connections, she needs more time to look at things, and really bright colors and movement will draw her attention to objects. The doctor referred Rosalie to the state agency for vision services, but that’s where the CVI conversation stopped. “I did not have a good understanding in the moment what CVI really meant and kind of like the magnitude of how it really impacts every aspect of every day and every little thing we've been doing with her,” says her mother, Stephanie Kung. “And the fact that it's a disability that is never going to leave her. I really just didn't understand that or get a sense of that until I went home and immediately started researching and, you know, obsessively learning all that I could.” Not only did Stephanie quickly sift through the research and implement CVI-friendly strategies and routines, she started a blog called Everyday CVI, where she documents life hacks, tips and tricks for families raising a child with CVI. Stephanie talks about Rosalie’s tremendous progress, how to advocate for CVI-appropriate early intervention services and that moment when you realize you are a special needs parent. Resources mentioned in this episode: Everyday CVI Little Bear Sees Start Seeing CVI Cortical Visual Impairment: An Approach to Assessment and Intervention Perkins School for the Blind CVI Hub

You can listen to Rosalie, Small but Mighty Stephanie Kung 10 online on Radio and Podcast. Open the player on this page to stream the available audio.

Rosalie, Small but Mighty Stephanie Kung 10 is an episode from Kaleidoscope: The Cortical Visual Impairment Podcast by Jessica Marquardt.

This episode is 00:59:36 long.

This episode was published on Mar 27, 2019.

Yes. Use the heart button on the episode page to add it to your favorite episodes list.

Yes. This page shows related episodes from Kaleidoscope: The Cortical Visual Impairment Podcast when more episodes are available from the podcast feed.