The IDD Parenting Journey: The Early Days of Support, Resources and Advocacy

According to the Centers for Disease Control and Prevention, approximately one in 31 children in the United States has been identified with autism spectrum disorder, and intellectual and developmental disabilities (IDD) impact an estimated one to three percent of the American population. Behind those numbers stands a family navigating the sometimes lonely and often stressful path that is rarely straightforward. A path each family faces with courage and commitment.  

During last year’s third annual IDD and Autism Leadership Summit, I had the privilege of being joined by two parents who each shared what that path looks like for them on a personal level. Their stories, though different in setting and detail, are unified in one powerful truth: early support, connection and advocacy can change the entire trajectory of a family's experience. 

Trudi and Micah: "The Joy of My Life" 

 

In the fall of 2024, my fellow Netsmart associate (and friend) Mary and I were paired with Micah to walk the runway for the annual FashionAbility Gala.
Photo above is of our dream team at the 2025 Gala, with a 90’s hip-hop theme Micah picked himself! 

Trudi N.'s son Micah is 30 years old today. Ask her about him, and what she'll tell you is, quite simply, "He is the joy of my life." 

But Micah's earliest days were anything but easy. When he was born with Down Syndrome, the news came as a complete surprise. Trudi had no prior knowledge of the condition and no preparation for what lay ahead. The guidance she received at discharge was minimal — a single sheet of paper, a copy of a fax so faded it was barely legible, with a phone number for support services. When she got home and called it, the line was disconnected. 

"Totally at a loss," is how Trudi described that helpless moment. 

What followed in Micah's first weeks of life compounded the challenge considerably. He was diagnosed with two holes in his heart and two cleft valves, requiring open-heart surgery at six months old. The cardiac concerns were so urgent they eclipsed almost everything else. "That way overshadowed the Down syndrome part," Trudi said. "So that was pretty devastating, but we got there. We made it through." 

The turning point came through an unexpected source: a home health nurse who told Trudi about the Leanne Britton Infant Development Center. "Once I connected with them, everything got much smoother, and they supported us and kind of showed us the way," Trudi said. 

That experience of stumbling onto the right resource by sheer chance rather stayed with her. After Micah recovered from surgery, Trudi joined the board of the Down Syndrome Guild and channeled her graphic design background into something tangible. She helped create a resource booklet: the first half filled with uplifting stories from Down syndrome families, the second packed with practical information for new parents. The Guild placed copies in every hospital in the Kansas City metro area and began sending welcome baskets directly to families upon diagnosis. "They didn't have to do any research," Trudi said. "They could have it immediately." A member of the Guild would follow up with a personal visit. 

She also helped organize monthly breakfasts for new parents — a space where shared experience could do what clinical guidance could not. "The new parents really need a lot of support because they are just in shock," she explained. "You can just explain how you feel. You automatically have a connection with them." 

Angel and Her Boys: A Family of Five 

Angel F. will be the first to tell you she has never had a quiet moment. She is the mother of five boys — Alex, John David, Robbie, Joey and Grayson. She describes each of them with the sort of swelling pride that doesn't pause for punctuation. 

Alex, the oldest, is a grown man making his way in the world. Robbie just graduated from high school. Joey is in tenth grade. And Grayson, the youngest — 13 years old with Down Syndrome — gets an extra note of affection in his introduction: "Little cutie pie," as Angel put it during the summit. 

Then there is John David, now almost 21, who was diagnosed with autism at age four. His early story is one of a parent who knew something was wrong long before anyone with a medical license agreed with her. 

As a toddler, John David would melt down during grocery store trips. The fluorescent lights, the noise, the smells (what Angel now recognizes as sensory overload) were invisible to his pediatrician at the time. "He's fine. He's three," was the response she received when she raised her concerns. Despite persistent follow-up from Angel and her husband, referrals for evaluation were repeatedly delayed. When they finally got in to see a specialist, the first appointment yielded little more than a repeat of the pediatrician's dismissal. 

Angel pushed back. "I'm a fierce protector," she said. “Mama bear incoming!"  

A second appointment with a different specialist in the same office changed everything. "Within thirty minutes, he said, I had to give you a diagnosis right now, it's autism Asperger syndrome." With that diagnosis in hand, the family was finally able to access the therapies that made a meaningful difference. 

What made that diagnosis so significant was not just the label — it was the key it provided to understanding John David as an individual. A boy who had taught himself to read by age four and could ace a second-grade math test in kindergarten was finally going to be seen for who he was, not dismissed as a behavior problem. 

When Grayson was born years later, with Down syndrome, the family's early experience was markedly different. Early intervention services were offered proactively. Therapists came to the house weekly. The family navigated occupational, speech and physical therapy simultaneously — at one point, five appointments per week between two children. It was demanding, requiring a color-coded shared calendar to manage alongside homeschooling and the rhythms of a full, loud, five-boy household. But the support was there from the start. "We were given all sorts of resources in the hospital," Angel said, "and had lots of people that we could reach out to once we got home." 

The difference between Micah's early experience and Grayson's, separated by roughly two decades as they may be, spotlights how much the availability of early support has grown. It also makes plain how much further there is to go. 

What Support in the Early Journey Teaches Us 

The contrast between Trudi's experience navigating a disconnected phone number and Angel's children benefiting from structured early intervention reflects how significantly the landscape of support has evolved. But it also demonstrates how much each family’s experience still varies. Neither family should have had to fight as hard as they did, or rely as heavily on chance, to find the resources their children needed. 

For organizations working in the IDD and autism space, these stories hold a clear message: early support must be accessible, immediate and tailored to the family in front of you. A basket with a booklet and a phone that actually rings. A person who listens the second time. A community breakfast where parents can cry and be heard. These are not small things. For families in the earliest and most disorienting days of a new diagnosis, they can be everything.  

As Trudi put it: "We are more the same than we are different."