World Down Syndrome Day: A Parent’s Perspective

For many, World Down Syndrome Day is a day of awareness, education, and advocacy. For Jen and Joe, parents of 9-year-old Kennedy, it is a deeply personal celebration of their daughter’s journey, their evolving understanding of Down syndrome, and their commitment to advocacy. 

A Journey from Uncertainty to Advocacy 

When Kennedy was born, Jen and Joe received a post-birth diagnosis of Down syndrome. In those early months, they were overwhelmed with questions about what the future would hold. Would Kennedy have friends? Would she be included? At their first World Down Syndrome Day, when Kennedy was just seven months old, they weren’t ready to talk about it—they were still processing what it meant for their family. 

Nine years later, their perspective has completely changed. They have become deeply involved in the Down syndrome community, using this day as an opportunity to educate, advocate, and celebrate. “Over time, Joe and I got into advocacy work for Down syndrome, and now it is a day of celebration,” Jen shares. 

Celebrating with Community and Awareness 

Each year, their family marks World Down Syndrome Day with special traditions. They create postcards featuring Kennedy’s photo and key facts about Down syndrome, which Kennedy helps write. She also helps organize an activity for her class—often tie-dyeing socks and engaging in discussions about inclusion. Jen and Joe join her in school to talk with her classmates, answer questions, and foster open dialogue about Down syndrome. Their goal is to ensure that Kennedy and other children with disabilities are seen, understood, and included.  

Beyond the classroom, their advocacy extends to the broader community. Joe serves as the secretary of their state’s Down syndrome association, working on legislative lobbying efforts to improve access to services and resources. “We know how fortunate we are, and not everyone is as fortunate,” Jen says. “It’s important to us to fight for those who don’t have access to the services and support they need.” 

Finding Joy in Everyday Moments 

For Jen and Joe, one of the biggest joys has been watching Kennedy thrive in her school and community. Kennedy, a third grader, is full of personality—outgoing, fun, smart, kind, and incredibly empathetic. “She reads a room and knows how people are feeling. She’s such a good friend and always wants to make sure others are okay,” Jen says. Like many kids her age, Kennedy loves Taylor Swift, Barbies, and baking shows. 

At school, Kennedy is included in all aspects of learning and play. “Her peers treat her just like any other friend. They don’t give her exceptions, except in moments where they want her to feel extra special—like getting her the ball to score in soccer or cheering her on in basketball,” Jen explains. The support extends to teachers and administrators, with whom they have built strong, reciprocal relationships over the years. “Our IEP meetings used to leave us exhausted and in tears, but now they’re collaborative and productive. We feel heard, and that makes a huge difference.” 

Advice for Other Parents 

Jen’s biggest advice to other parents of children with Down syndrome is to find a community—not just within the disability world, but beyond it. “It’s important to have people to talk to about inclusion, equity, and everyday parenting. We don’t only want to talk about Down syndrome. We want to share and learn from other parents, too.” 

While their journey wasn’t what they initially expected, Jen and Joe wouldn’t change it for the world. “Being Kennedy’s parents has opened our eyes to so much love, beauty, and acceptance. It has connected us to an incredible community and changed the way we see the world. It may not be what we planned, but it’s been even greater.” 

Resources Shared from Kennedy’s Parents Include: 

Associations With Helpful Information and Networks 

• National Down Syndrome Society (NDSS)
• Down Syndrome Diagnosis Network (DSDN)
• National Down Syndrome Congress (NDSC) 

Great Books for Kids and Families  

• I Am a Masterpiece!: An Empowering Story About Inclusivity and Growing Up with Down Syndrome
• Different--A Great Thing to Be! 
• You Are Enough: A Book About Inclusion
• 47 Strings: Tessa's Special Code 

Looking Ahead 

Kennedy has big dreams for her future—she’s a rockstar, a scientist, and a future marching band member. She is a bright, kind, and determined young girl who continues to inspire those around her. 

On this World Down Syndrome Day, Jen, Joe, and Kennedy are ready to celebrate—not just for their family, but for the entire Down syndrome community. Through their advocacy, awareness efforts, and everyday commitment to inclusion, they hope to create a world where all individuals with Down syndrome are seen, valued, and given the opportunities they deserve.