236: The Mix of Joy & Grief through Medical Parenting (autism, lissencephaly and lennox gastaut syndrome) – Joanne’s Story

“Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it.” – Joanne De Simone

In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with disabilities. From navigating her eldest son Benjamin’s rare brain malformation, lissencephaly  and complex medical needs to supporting her younger son Sebastian, who is on the autism spectrum. Joanne discusses the challenges, victories, and personal growth she’s experienced. As a mother and special education teacher, and now an advocate for families of children with special needs, Joanne reflects on the importance of building community, embracing support, and living fully in the moment. Her story offers hope and practical wisdom for parents and professionals alike.

Key Insights:

• The Power of Community: Joanne emphasizes the importance of connecting with other families who share similar experiences, as they provide invaluable emotional and practical support.

• Advocating for Your Child: Joanne shares her approach to advocating for her sons, including the importance of interviewing healthcare providers to ensure they see her children as whole individuals.

• Living in the Moment: Joanne describes how her background in modern dance taught her to “live in the movement,” helping her find balance and perspective amid constant challenges.

• Adapting Over Time: Joanne reflects on how the challenges of parenting evolve as children grow, from educational decisions to navigating adult systems of care.

• Strength in Vulnerability: Through writing and advocacy, Joanne has found a way to process her experiences and turn them into a source of strength for others.

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Resources and Tips Shared:

• Joanne’s Blog and Book: Visit Joanne’s blog at special-educationmom.com to learn more about her book, Fallen Recovery, and read more through her blog posts.

• Support Groups for Rare Conditions: Joanne highlights the value of connecting with email support groups and online communities for rare conditions. Search for condition-specific groups on platforms like Facebook or Yahoo Groups.

• Begin Health Prebiotics: The gut health of children is important. Visit BeginHealth.com and use code ChildLifeOnCall for 25% off products.

• SupportSpot: Download the SupportSpot app at childlifeoncall.com/supportspot for resources tailored to families navigating pediatric care.

Tune in for an episode filled with vulnerability, wisdom, and a reminder of the strength found in community and resilience.