by Connor Courtien, RDPFS Intern
With Mother’s Day observed this past Sunday and Father’s Day approaching, this is a good opportunity to recognize those parents whose children have a Cortical Visual Impairment (CVI) by sharing some resources that describe how they manage the challenges they face in what can ultimately be a rewarding experience. Having CVI means a child can’t properly interpret the visual information sent to their brain, though their eyes might be without impairment. Since there are no distinguishable features of the eyes, it can be hard to diagnose, and children can have difficulty communicating to parents how their impairment manifests. Children can become frustrated and upset with this experience, and parents, feeling unequipped to help, may blame themselves. Parents also have to act as the primary advocates for their child’s needs, and this can lead to additional self-doubt when working with educational and medical professionals. However, in an article from Perkins School for the Blind, titled “CVI parenting with self-compassion,” Jessica Marquardt, a CVI mother and creator of Kaleidoscope: The CVI Podcast, suggests parents treat themselves with more compassion and empathy, describing her own efforts in doing so. “Ongoing adversity has contributed to my overreactions to stress. It’s taken me a decade to realize I need to do something about it. I’m turning to self-compassion with limited success — due to user error.” She writes how this is important not only for the parent, but also to model positive coping mechanisms for their child. “We need self-compassion, and our children need it too. They will have many challenges to overcome and a model of self-compassion will be essential.” Some tips for self-compassion and self-care are found in another Perkins article, “The essential self-care guide for CVI parents,” including scheduling time for yourself to exercise, talking to a therapist, or having a night out with friends. Another important tip is to remember that children with CVI can get fatigued and overwhelmed easily as they struggle to process their environment. While it’s essential to help them cope, the child’s reactions don’t reflect your ability as a parent. You can read more about the experience of being the parent of a CVI child, and tips for navigating it in the articles above.
