By GEEARS
From the moment a baby is born, their parent or caregiver becomes an advocate. They are their child’s interpreter, their guardrails, their voice.
When that child has a disability or developmental delay, advocacy can escalate into a full-time job, as much a part of parenting as changing diapers, running warm baths, and snuggling up with bedtime stories.
Karen Young Lewis, a Cobb County mother, recently reminisced about her unexpected entree into advocacy in the Metro Atlanta edition of Uniquely You, a virtual magazine that celebrates families with disabilities and connects them with resources—and each other. Lewis’s journey began when her son Cyrus was born at 25 weeks gestation. After an entire year in the NICU, her little boy was diagnosed with cerebral palsy and severe developmental delays.
“Before Cyrus, I had approached life as a planner, someone who believed in mapping out outcomes and working steadily toward them,” Lewis wrote in Uniquely You’s May edition. “But his birth reshaped everything I thought I knew about certainty and control. I entered an unfamiliar world where the stakes were higher than anything I had ever experienced and where learning to navigate systems became essential to protecting my son’s quality of life.”
“While I was deeply grateful for the care and support we received,” Lewis continued, “I also began to notice gaps and places where systems fell short. What began as self-advocacy slowly expanded to systems-level advocacy. Over time, I realized that advocacy is not only about addressing what is missing; it is also about strengthening what already exists. It is about raising awareness, protecting rights, amplifying voices, and working in partnership to create better outcomes. Supported by a community of families with shared experiences, I moved from advocating solely for my son to speaking up for broader change.”
Today, Lewis is a professional advocate, a Parent Resource Coordinator for Cobb and Douglas Counties and a national resource for families looking for community supports. She’s also the Chair of the Georgia State Interagency Coordinating Council, which is the advisory body for Georgia’s Early Intervention program, Babies Can’t Wait, and a member of the Children’s Healthcare of Atlanta NICU Advisory Board. And those aren’t even all of her impactful titles. Lewis is pretty much an advocacy rock star.
But here’s the thing—she’s also simply a loving, determined mom, and if you’re a parent or caregiver of a child with disabilities, you have the same power that she does. Being an expert on your child also makes you an expert in the web of systems they have to navigate. You’ve done the heavy lifting it takes to, say, find a preschool with inclusive classrooms and onsite therapies or apply for a Katie Beckett waiver, which allows children with complex medical needs to receive Medicaid so they can afford the often-impossible costs of care.
When you use this experience to share tips with other families, you’re an advocate.
When you tell your story to a child care provider, school staff, or early interventionist, educating them about your child’s needs, you’re an advocate.
When you celebrate your child, loud and proud, you’re an advocate.
As GEEARS’ Policy Outreach Manager, Caitlyn Sanders, wrote in a companion piece for Lewis’s Uniquely You article, “What may feel like day-to-day problem-solving is, in fact, the beginning of a powerful skill set. Those lived experiences can grow into opportunities to influence policies and systems that shape the lives of all children with disabilities.”
GEEARS can help you put your influence into action with our legislative advocacy alerts. Or you can join us to tell your story at Strolling Thunder, our high-impact, and very fun, day of visibility and advocacy at the Gold Dome during the legislative session. We’ll also continue to connect the GEEARS community with vital resources and community builders like Uniquely You.
And on September 17th, we’ll give you the opportunity to meet Olympic gold medalist Elana Meyers Taylor, who made her little boy a part of her historic bobsledding win in the viral moment linked above. Taylor will deliver the keynote at our Annual Luncheon, seizing another opportunity to educate about the joy and hard work that goes into parenting two young sons who are Deaf. (Her eldest, Nico, also has Down Syndrome.)
Which is to say, Taylor is an advocate, too, just like Karen Young Lewis, and just like you. GEEARS is proud to be a resource for all the Georgia families helping their little ones with disabilities or delays thrive and strive for better systems for all.
This is sponsored content.
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