The opinions or assertions contained herein are the private views of the author(s) and are not to be construed as official or as reflecting the views of the Department of Defense.
The JBLM Down Syndrome Support Group: An Uplifting Endeavor
LCDR Michelle Jardon-Aites, MD, FAAP
Developmental-Behavioral Pediatrics, Madigan Army Medical Center, Tacoma, WA; UW LEND
Introduction• The most common and perhaps well-known
chromosomal disorder encountered in Pediatrics
is Trisomy 21, more commonly known as Down
Syndrome
• In the United States, Down Syndrome affects
approximately 1 in 700 children born each year,
with more than 250,700 children, teens, and
adults with Down Syndrome live in the US
• There is a large community of support
internationally, however the challenges of the
military lifestyle make it more difficult for
military families to feel connected and supported
Moving Forward• Continued facilitation of social events and
meetings
• Plan for informational topic discussions
pertinent to the Down Syndrome and Special
Healthcare Needs communities
• Establishment of “Welcome Basket” for
families given a new diagnosis of Down
Syndrome in the neonatal period
Methods
• Created goal to establish a local support group
for military families touched by Down Syndrome
• Worked with a multi-disciplinary team of
colleagues to plan and organize an inaugural
support group meeting on World Down
Syndrome Day (March 21)
• Planning committee members included
disciplines of Developmental-Behavioral
Pediatrics, Medical Genetics, and Pediatric
Social Work
• Additional support provided by department
Medical Support Assistant, Pediatric
Occupational Therapy, and local Exceptional
Family Member Program
• Provided location, food, and activity for children
and siblings
• Utilized a brief Needs Assessment survey to
ascertain what families want from a local support
group
• Basic family demographics
• Desired frequency of meetings
• Specific interests and needs
Figure 3: Children and Siblings
from the JBLM Down Syndrome
Support Group
Results
• Inaugural meeting held on World Down
Syndrome Day 2017
• Subsequent social events (outdoor BBQ, second
annual meeting on World Down Syndrome Day
2018)
• Support for families undergoing stressful
situations (illness, hospitalization)
• Establishment of parent-initiated online media
group
Special thanks to the families of JBLM Down Syndrome
Support Group for providing pictures and support for each
other.
Figure 1: Ages of Children with Down Syndrome in JBLM
Down Syndrome Support Group (18 families)
Discussion• Highlighted many of the challenges in starting a
support organization
• Additional challenges of serving a military-
connected population
• Moves of family members and providers
• Limitations regarding advertisement and
involvement
• Truly uplifting and inspirational experience as
able to watch families connect and support each
other
0
1
2
3
4
5
6
7
8
Ages of Children
Infants/Toddlers/Preschool (<5 years)
School Age (5-11 years)
Teenagers (12-18 years)
Adults (>18 years)0
2
4
6
8
10
12
14
16
Interests/Needs
Figure 2: Reported Interests and Needs