Connecting Disability to … Parenting and compassion

For many parents, their first significant experience with disability comes when they find out their child has one. Shannon Reaume’s story is different: both she and her son have the same medical condition, central congenital hypoventilation syndrome (CCHS). In this conversation, Shannon and Meagan talk about how Shannon’s disability impacted her journey to motherhood, what it’s like to share a diagnosis with your child and what the experience is teaching her about having compassion for her own parents. If you’re considering how to be a disabled parent, wondering what your life will look like with your child’s disability, or reflecting on what your parents taught you about living with a disability–there’s something for you in this conversation. Shannon Reaume is a registered social worker and a family advisor on multiple committees and working groups for McMaster Children's Hospital in Hamilton, Ontario, Critical Care Services Ontario, and the Provincial Council of Maternal and Child Health. She’s also a Ph.D candidate at the School of Public Health Sciences in the University of Waterloo where she is a researcher at the ARCH Lab, which stands for Advancing Research in Children’s Health. She was a recipient of the 2021 Holly Bartlett Memorial Award from the National Educational Association of Students with Disabilities. Shannon is passionate about helping children and families live healthy lives with disabilities. She lives with her husband and two children in Elora, Ontario. If you want to learn more about CCHS or donate to CCHS research, go to www.cchsnetwork.org. International CCHS Day is November 13. If you want to hear how Meagan first met Shannon, you can check out this article from July 2020 about homecare for medically fragile children in Ontario during the first few months of COVID-19 lockdowns: https://www.tvo.org/article/were-forgotten-families-call-on-the-government-to-enforce-home-care-rules. And if you feel the urge to look at cute teddy bears–and lots of accessories!–this is the company that Shannon’s son got his teddy bear through: www.buildabear.com.