What is Today, Isn’t Necessarily Tomorrow

Amy Gleason is Morgan Gleason's mom. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Welcome to this sixth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click the title

Subscribe to Health Hats, the Podcast, on your favorite podcast player

Please support my blog and podcast.
CONTRIBUTE HERE

Episode Notes

Prefer to read, hard-of-hearing or deaf?
Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here
Contents with Time-Stamped Headings
to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on transcript)

Introducing Amy Gleason. 1

Health is fragile 02:34. 2

Parenting, independence, making mistakes 03:29. 2

Cues for calibrating autonomy 07:08. 3

Lifeline - Cure JM parent support group 10:42. 4

Transition issues – hot topic 15:11. 6

Depression, unhappiness, mourning 16:47. 6

Where have you been? Transition experiences 21:22. 7

Self-care 23:19. 8

Children’s hospital experience for teens 24:54. 8

Advocacy and clinical research for and about your kid 26:04. 9

What is today isn’t necessarily tomorrow 29:02. 9

Citizen expertise 31:13. 10

Closing 36:41. 11
Previously in series (newest on top)
#016 Finding a Style that Works - Morgan Gleason

#014 Looking Out for Each Other - Alexis and Sara Snyder

#013 Not One Transition. Many - Alexis Snyder

#012 16, Sophomore, All-in - Sara Snyder

#011 Three young adults. 22 years - Jill Woodworth

Young adults crossing the threshold from pediatric to adult healthcare
Links
Cure Juvenile Myositis Foundation
Got Transition
Kids Get Arthritis, Too
Society for Participatory Medicine
https://www.health-hats.com/building-capacity-building-power-citizen-power/

https://www.health-hats.com/lessons-from-the-clowns-when-going-to-the-doctors/
Notes
Interoperability is the ability of different information systems, devices or applications to connect, in a coordinated manner, within and across organizational boundaries to access, exchange and cooperatively use data amongst stakeholders, with the goal of optimizing the health of individuals and populations.

Credits
Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer

Photo by Cristian Lopez on Unsplash
About the Show
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  We will listen and learn about what it takes to adjust to life's realities in healthcare’s Tower of Babel.  Let's make some sense of all this.

To subscribe go to the blog https://www.health-hats.com/
Creative Commons Licensing
The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. [email protected]. The material on this site created by others is theirs and use follows their guidelines.
Introducing Amy Gleason
Amy: You go through this mourning process of what you thought your life was going to be like and how your kid was going to have all these opportunities and then you have to watch them every day suffer. And you have to be the one giving them shots and forcing them to take pills.