changed by my child - wordpress.com · lois, leah & karly. 5/17/2017 2 karly& pokito karly,...
TRANSCRIPT
![Page 1: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/1.jpg)
5/17/2017
1
Changed By My Child
Lessons on
Caring, Living,
and Dying Well
by Lois Swope
Creative Health
Care Management
Symposium
June 21, 2017
“Just because I’m silent doesn’t
mean I’m ignorant.”
Lois, Leah & Karly
![Page 2: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/2.jpg)
5/17/2017
2
Karly & Pokito
Karly,
5-6 years old
Amy & Karly
![Page 3: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/3.jpg)
5/17/2017
3
“That song changed my life... I was a
composer! I was a musician.
I had a voice that others could
hear.” - Karly
Karly & Karen Bohnert,
music therapist
Everyone is more than their symptoms:See the whole person, not just their diagnosis
Lesson 1
![Page 4: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/4.jpg)
5/17/2017
4
“Don’t let
Rett Syndrome be
the only thing
said of me.” - Karly
Karly &
Elizabeth
“Assume Intellect”:Trust the experience of the patient and their family
Lesson 2
![Page 5: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/5.jpg)
5/17/2017
5
“Just
because I’m silent
doesn’t mean
I’m ignorant.”
– Karly
“My brain is intelligent,my body struggles.” – Karly
![Page 6: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/6.jpg)
5/17/2017
6
“Many of my
memories of going to
doctors and therapy visits
are painful to
remember.”– Karly
![Page 7: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/7.jpg)
5/17/2017
7
“I am more than my body. I am.” - Karly
“My Pony, My Beau”
Every patient has a backstory:Be curious and compassionate
Lesson 3
![Page 8: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/8.jpg)
5/17/2017
8
![Page 9: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/9.jpg)
5/17/2017
9
![Page 10: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/10.jpg)
5/17/2017
10
“The Cruel Stare”
Karly & Gregg
Death is part of life:Accept that mortality is not failure
Lesson 4
![Page 11: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/11.jpg)
5/17/2017
11
“Just because I’m silent doesn’t
mean I’m ignorant.”“I’ve said yes to everything I was
supposed to do here.” - Karly
![Page 12: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/12.jpg)
5/17/2017
12
“My favorite place on Earth
is on the back
of a horse.”
- Karly
Last ride on Chester
![Page 13: Changed by my child - WordPress.com · Lois, Leah & Karly. 5/17/2017 2 Karly& Pokito Karly, 5-6 years old Amy & Karly. 5/17/2017 3 “That song changed my life... I was a composer!](https://reader034.vdocuments.mx/reader034/viewer/2022052021/60363d9452c3d57f9a73c7cb/html5/thumbnails/13.jpg)
5/17/2017
13
Thank you.
Special thanks to Creative Health Care Management,
Barbara McAfee, Chris Bjork for Tech Support, Gregg, Leah, and friends who believe our story needs to be shared.
Contact:
loisswope.com