The IDD Parenting Journey Continues (Part 2)

This is the second of a two-part series. Part One covers the early journey of navigating diagnosis, finding resources and the power of connection for families just starting out. 


For families of children living with intellectual and developmental disabilities (IDD) or autism, the early years of navigating diagnosis and accessing support are just the beginning of an often-stressful saga. As children grow, so does the complexity of what they need. And so too does the importance of the people and systems surrounding them.  

While CDC statistics show that autism affects approximately 1 in 31 children in the U.S. today, we often forget that childhood is only the beginning of the story. Too often, the resources and advocacy we prioritize for young children vanish just as they are transitioning into adulthood. 

At the 2025 IDD and Autism Leadership Summit, we were joined by parents Trudi N. and Angel F. Here we pick up their unique stories where early diagnosis leaves off. The two mothers generously shared what it looked like to advocate for their children through school, into the community and toward adulthood. Their stories are a reminder that the work of supporting individuals with IDD and Autism Spectrum Disorder (ASD) is not a phase. It is a lifelong commitment. 

Setting the Bar Higher 

When Micah reached first grade, his school determined placing him in a self-contained special education classroom was best. However, within days of seeing the room for herself, Trudi knew it wasn't the right fit. "I went to visit, and I'm thinking, ‘No. We have to set the bar higher,’" she said. She advocated for Micah to be mainstreamed alongside his typically developing peers. And she had evidence to back her up. "It wasn't really hard to advocate in this situation only because I could prove that he was regressing," she shared. 

The decision to mainstream Micah opened a door that would shape his entire school career. Trudi and the school established what she called a "circle of friends" around him — a structured peer support group that quickly took on a life of its own. "Some of the most popular kids, they all wanted to be in the circle of friends," she recalled. The local newspaper even ran a feature on it. One of the boys photographed in that article went on to become his high school's starting quarterback. Micah kept the clipping framed in his bedroom all the way through graduation because it meant that much to him. 

Exclusion is never the best answer to developmental differences. Inclusion, when done well, positively shapes everyone involved. 

Advocacy Doesn't Stop at the Classroom Door 

Trudi's advocacy didn't end once Micah was mainstreamed among his classmates. In middle school, the district moved to cut his speech therapy. So she went to Children's Mercy Hospital, obtained a report documenting his ongoing speech needs and requested a meeting directly with the superintendent of schools. The superintendent reviewed the report, consulted with the special education department and came back with a commitment: as long as Micah was in his school district, he would always receive speech therapy. 

"But again, the mama bear has to come out," Trudi said. "You've got to be proactive." 

That proactive energy also extended to something that mattered deeply to Micah himself: music. When a school principal suggested he take private drum lessons in the evenings rather than join the school band, Trudi had a simple response: "Why don't all the kids just take private lessons?" The principal understood her meaning. Micah joined the band with a friendly peer by his side to support him. He did so well that the experience became one of the highlights of his middle school years. That same principal went on to become his high school principal and remained an advocate for Micah. 

As it often does, high school offered a new sense of belonging, centered around the varsity football team. Micah became the water boy, showing up for every practice and game. His teammates embraced him — eating lunch together, rallying around him in the hallways. Before each home game, as the fog cleared and the crowd cheered, it was Micah who led the team out of the tunnel, school flag flying high, setting the tone for all who followed him. That year, the team made it to the state championship. In Micah’s senior year, his classmates voted him homecoming king. He accepted the crown (placed carefully atop his noise-reducing earmuffs before a cheering crowd) and the moment captured everything his mom’s advocacy during his school years had built toward. 

"It was advocacy, advocacy, advocacy," Trudi said simply. She then shrugged, adding "If you didn't do that…" 

Individualized Support in School 

Angel F.'s son John David had a fundamentally different school experience early on. He was initially placed in a contained special education classroom with 23 other students, a single teacher and two aides. He had taught himself to read by age four and was completing second-grade math accurately in kindergarten. Without the right level of challenge, his behavior deteriorated. "I think it's because he's bored," Angel told his teacher (and she was right). The family made the difficult decision to homeschool, eventually pulling all five boys into home education at various points while John David found his footing. Even during those years, the household was rarely still: basketball, T-ball and a color-coded shared calendar kept things running between therapy appointments and lessons. 

The Jeremiah School eventually became the bridge John David needed. It provided a middle school program specifically designed to prepare students like him for the academic and social demands of mainstream high school. What made the transition especially meaningful was that he entered high school the same year as his older brother Alex, walking those halls alongside family rather than alone. 

The high school worked closely with Angel's family to build a structure tailored to John David specifically: a dedicated assistant to help him stay focused, and a daily behavior and points chart that tied his technology privileges at home to his performance during the school day. The system worked because it was built around what motivated him. Though the school had allotted five years for him to complete a four-year program, John David finished alongside his peers. "We were extremely proud," Angel said smiling. 

Now, Grayson, the youngest of Angel's five boys and the one she introduced at the summit with a grin as her "little cutie pie" attends the same school John David once did, under entirely new leadership. Where John David's classroom held 23 students, Grayson's holds six, with a teacher and at least two dedicated aides. The contrast between the two brothers' experiences at the same institution — separated by less than a decade — is a quiet testament to what sustained advocacy and evolving standards of care can accomplish. 

Supporting the Needs of Adults with IDD

Perhaps the most important reminder both parents left with the summit audience had nothing to do with school at all. It was about what comes after. 

"It's really important to remember that these kids that have these special needs are gonna grow up to be adults that still have special needs," Angel said. "A lot of times, they may grow out of it, and a lot of times, they won't." Her family is navigating that transition now with John David, who is nearly 21. For the foreseeable future, he will remain at home under his family's guidance, not because he hasn't grown, but because the world is still catching up. "Public spaces are difficult sometimes to navigate," she said. "They're not as accepting as we would like." 

For organizations building programs and services in this space, that reality carries weight. The child sitting in a first-grade classroom today will one day be an adult navigating employment, housing, community and relationships. The support systems built now must be designed with that future in mind. 

Trudi offered a closing thought that speaks to the heart of what person-centered care actually means in practice: "They're individuals, besides from their special needs diagnosis. They have personalities. Some of them are introverts and some of them are extroverts, just like us. Some of them are arts and music, and some of them are athletic jocks. They all have their own personality that has nothing to do with their diagnosis." 

And then, drawing on a phrase she's carried with her from her years with the Down Syndrome Guild: "We are more the same than we are different." 

That is the standard. Not programs built around diagnoses, but support built for people.