Advocating for our children is one of the most important parenting tasks there is; but it is one that becomes many times more challenging when it comes to children with special needs or going through difficult medical journeys. And when your child is diagnosed with a disease so rare that only a few other children in the entire world have been diagnosed with it, the process becomes much more challenging.
I’m so happy to have Cari Desiderio on the show to share her best tips on advocating for children with special needs, as she is no stranger to the rare disease world. Her little angel Hannah is a miracle baby who at 1.5 years old was diagnosed with CDK13: a very rare genetic condition characterized by congenital heart defects, intellectual disability and characteristic facial features.
With very little research available on this condition, Cari and her family were faced with the reality of navigating through the unknown. Traditionally, doctors and their teams take charge in caring for our children. But in their case, Cari had to take many matters into her own hands.
Today, she’s sharing with us how she helped shape Hannah’s care, education, and overall well being. You’ll hear how she found the strength and courage to speak up, how she connected with families with common stories for support, how she found time for self-care, and much more.
I just loved how Cari describes parenting a child with special needs as an almost entrepreneurial role: you have to be fierce, network, connect, ask for help, and be resourceful. She reminds us to care for ourselves during the process to avoid burnout and celebrate every little milestone to add some joy to a challenging journey.
Key Takeaways with Cari Desiderio
- The best ways to advocate for your child’s (medical) needs.
- How to find support in families with common stories and how to reach out.
- Finding the courage and strength to navigate the unknown.
- Having an entrepreneurial spirit with your child’s care.
- The importance of self care: maintaining your own health and avoiding burnout.
- Adapting to your new reality, and dealing with the grief of “what could have been”.
- Creating moments of joy by celebrating the little milestones and accomplishments.
Cari Desiderio Tweetables
- “As a special needs parent you’ve got to first find internal courage to be brave, and then be willing to do whatever it takes.” – Cari Desiderio
- “There’s nothing better than trying, over and over. If you fail 9 times but then the 10th time a door opens, that’s great. It’s unbelievingly terrifying to break out of your norm.” – Cari Desiderio
- “You have to have an entrepreneurial spirit with your child and not take no for an answer.” – Cari Desiderio
- “It’s super easy to feel like you’re that child’s mother, and you’re meant to do it all. And I think that’s a fast track to burning out and not being able to care for your child in meaningful ways. We’re not meant to do it alone.” – Jamie Freedlund
Resources
- VMware Family Support
- Raising children with rare diseases and conditions
- 5 Lessons I’ve Learned From Parenting a Child With a Rare Disease
- Finding Support and Information When Your Child Receives A Rare Disease Diagnosis
- 10 helpful organizations and resources for children with special needs
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