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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Apr 13, 2022

Today I’m talking with Megan, who is the mother of three wonderful children. Her first was born with a rare genetic condition called Williams Syndrome. They did not discover this syndrome until he was five months old, and you will hear in her story how those first five months felt like five years. Megan is also a social worker, and she has developed a program that we will talk about at the end of the interview.

In this episode, we talk about…

[1:53] Megan’s family

[3:24] Williams Syndrome

[4:30] Megan’s pregnancy and delivery with her son

[6:21] Getting a diagnosis of Williams Syndrome

[13:45] Feeling lonely after getting the diagnosis of Williams Syndrome

[21:24] Family support and coping as parents of a child with special needs

[23:36] Living with Williams Syndrome

[26:52] How Megan takes care of herself day to day

[30:03] An update on Megan’s son and what he has taught her

[32:43] Tulip Families: The program Megan developed for families navigating disability and neurodiversity




Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.