PUTTING THE MAGIC INTO MEDICINE
Nowhere is magic needed more than the medical setting! Somewhere along the way in our illness journey we decided to lean into magic and our super powers.
Whimsy and Fun- Here are just a few things we do on the regular during our medical visits
- Wear party clothes - full on sequins and shiny shoes
- Eat birthday cake for breakfast
- Rolller skating instead of walking the hallways
- Scavenger hunts - photos
- Penny hikes
- Wear super hero costumes
- Dance parties
- Crazy hats and crowns for all
- Super hero accessories
- Love rocks
- Gratitude flash cards
- Secret messages
- Movie making
Getting Started - What Comes First?
- "Eat the Cake First" - keeping your kid and her unique needs at the center of all of "it'
- Never let anyone forget that your child is a kid first and the diagnosis is one small part of who that kid is and what they care about
- Know your rights - you can wear your own clothes and keep your kid at the center of visits
- Anatomy of a medical visit - how to get what you need to help your child - you can hack the visit so it keeps your kids needs at the center
- 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