166: Nonspeaking Child | Longing to Access Their Inner World + Give Them Medical Autonomy w/ Suzi Boubion

How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is? These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, and this struggle to communicate is one of the biggest challenges for Suzi’s family as they help Oliver navigate his disabilities. In this episode of The Rare Life, we’re digging into how we long to know our nonspeaking kid’s inner thoughts, how their challenges to communicate affect their medical autonomy, and why, at the end of the day, so many of us would give anything for them to be able to tell us exactly what they do –and don’t– want. Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!   Links: Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child! Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Listen to Ep 124: Suzi’s Story. Follow Suzi on Instagram @oliversodyssey1! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app!