We are all in this together. This giant system of care, these dozens of moving pieces, the multitude of providers, your family, my kid - we are all humans dealing with situations that are extraordinary and challenging. And no matter what - we can choose compassion as a lens and foundation.
Coming Soon - Health Advocacy Building Blocks
- What is advocacy? Advocates, adversaries, and allies - who is what and why it matters.
- Learn why "bad patients" have better health outcomes -and what this means when the mom has to step in to be the "bad patient parent"
- Partnering with providers - understanding the "medical mindset"
Getting Started - What Comes First?
- "Eat the Cake First" - keeping your kid and her unique needs at the center of all of "it'
- Know your rights
- Anatomy of a medical visit - how to get what you need to help your child
- Know your points of contact in the system (who does what)
- Circling the wagons - creating a circle of care using a care map
- Calendars and Coordinating
- Kid patients are different - here's how
ToolKits - Where Do I Get?
- Tools for change- binders, calendars, etc.
- Feel good kits for kids and families - ideas for how to get through endless outpatient visits and hospital stays
- Packing lists - kind of like having the "birth bag" ready by the door
- Hospital plan - again like a birth plan but kind of different
- Patient bill of rights and what that means in pediatrics
- How to get medical records and information from behind the EHR summaries you see
- "No" is just the beginning of the conversation -how to appeal denials by insurance companies and public health care program
- Finding medical allies to build your dream team
- Crash course in case coordination
Resources - Where Do I Find?
- Integrating care - how to discern snake oil from solutions
- How to do a literature review about your kid's illness
- How to research and evidence about your child's prognosis, treatment, and diagnostic procedures
- How to find and get into a clinical trial
- Where to find medical research on "main stream" and complimentary therapies
Helpful Skills - How Do I?
- Creating a framework for wellness
- How to make impossible decisions
- Deep listening- how to hear the hard stuff from your kid and their providers
- Talking (playing and creating) with your child about her illness
- Setting goals for what your kid wants and needs
- Tips and tools for keeping the magic of childhood alive during the 'yuck' of "all of this"
Things I Wish I Had Known Sooner -
Buzzy Bees and Ativan
Tips from Mom-ologists and Child Life Specialists in the know:
- Buzzy bees, shot blocker, aroma therapy and other tried and true tricks from moms-in-the-know