#AACES2025 Conference Session

What to Expect When You Weren't Expecting This: Demystifying Pediatric Palliative Care for Children with Complex Needs

Join Courageous Parents Network’s Lindsey Topping-Schuetz as she demystifies pediatric palliative care and shares how it has profoundly impacted her family’s journey raising a medically complex child learning to communicate with AAC. Parenting without a roadmap can feel overwhelming, but anticipatory guidance offers families invaluable insight into what to expect—both medically and emotionally—along the way. Lindsey will also introduce "NeuroJourney", a free digital tool designed to support caregivers and clinicians in navigating the complexities of care for children with neurodevelopmental disabilities. Learn how these resources have empowered her to collaborate more effectively with her son’s medical team and how they can help you or the families you support.
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What You'll Learn

Upon completion of this session, you will be able to:
As a Parent...

  • Describe the core principles of pediatric palliative care and reflect on its potential impact on the well-being of families raising medically complex children.
  • Recognize the value of anticipatory guidance in fostering emotional preparedness and informed decision-making throughout the caregiving journey.
  • Demonstrate the ability to navigate and utilize NeuroJourney, a free virtual tool, to support care planning and communication with the medical team.

As a Professional...
  • Explain the role of pediatric palliative care in supporting families of medically complex children, addressing common misconceptions.
  • Assess the role of anticipatory guidance in promoting collaborative, family-centered care and improving caregiver resilience.
  • Identify ways to integrate NeuroJourney into clinical practice to enhance caregiver education and anticipatory guidance strategies.

WHO SHOULD ATTEND?

everyone

LEARNING LEVEL

all

PRESENTED BY

Lindsey Topping-Schuetz, Caregiver

Lindsey entered the advocacy arena when her son was prenatally diagnosed with two rare genetic abnormalities, one of which is 5p- Syndrome. After Owen’s birth, Lindsey had to leave her career to become his full-time caregiver, therapist, nurse, and advocate. During this time, Lindsey has become well acquainted with the shortcomings that exist in our culture, communities, and medical system for patients and families of medically fragile children.

Lindsey holds a part-time position with the Courageous Parents Network and serves on the Board of Directors for the NW Rare Disease Coalition. She resides in Puyallup, WA, with her husband Ben, their son Owen, and their puppy Dolly.

THE SCOOP

WATCH LIVE FOR FREE
GET CMH CERTIFICATE
WATCH THE RECORDING

Saturday, February 15, 2025, 3:30 -4:30 PM Pacific Time

Access this session free (as scheduled) during the live AACES conference.
Enroll in this session for access to the quiz and CMH certificate.

All Access Members get FREE access to certificates and session recordings for the entire conference (+ our staple course library of over 60 online courses) with their paid membership.


Enroll in this session for access to the recording.

All Access Members get FREE access to certificates and session recordings for the entire conference (+ our staple course library of over 60 online courses) with their paid membership.

CONTINUING EDUCATION CREDIT

This session offers a total of
 1 certification maintenance hour (CMH)

Learn more about CMH/PDH (versus CEU's or continuing education units) on your course syllabus and on our CEU Page. All learners are encouraged to confirm that this course meets the requirements of their licensing board before purchasing.  
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