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Kaleidoscope: The Cortical Visual Impairment Podcast


Jul 24, 2019

Mia Carella of thismomwithablog.com shares wisdom from the head and the heart, which comes from navigating life as a CVI mom / heart mom. (Her daughter Evalyn, 8, has cortical visual impairment and a congenital heart defect.) Mia describes the ups and downs of being a special needs parent and why we should let go of the Super Mom ideal.

Mia and her daughter, Evalyn, who is dressed for a dance recitalIn this episode:

2:05 – Dance programs for kids with special needs

4:45 – Moving from feeling helpless to feeling more empowered as a mom

9:20 – Explaining rare genetic disorders and little-known conditions, like CVI, to doctors #CVIsplaining

11:30 – What CVI means for Evalyn (late Phase II CVI) in her day-to-day life

13:20 – Advocating for CVI needs in an IEP meeting

18:30 – Participating in The Miracle League and making baseball adaptations

23:50 – What our kids teach us about resilience, positive outlooks and perspective

26:19 – How her blog has changed her life

Resources:

thismomwithablog.com

pcvis.vision

The Miracle League