Presence Isn’t Inclusion, Especially for Parents
By Brian Roach, Head of Solutions Engineering
There’s a point where you realize that being a parent of a neurodivergent child quietly turns you into something else. Not by choice, and not because you feel particularly qualified. You become an advocate, a translator, a planner, and sometimes a buffer between your child and a system that doesn’t quite know what to do with them. You learn quickly that presence gets mistaken for inclusion far too easily, and that being “in the room” doesn’t always mean being seen or supported in any meaningful way.
When Opportunity Comes with an Asterisk
One of those realizations hit us when Emily was in fourth grade. Her teacher recommended her for an honors writing program, a program designed for students who were considered gifted or advanced. Writing was one of her strengths, so the recommendation made sense. We walked into that meeting hopeful, even proud. The first thing the head of the program said to us was, “I’m not sure this program is right for Emily. We’ve never had a student like her in the program.”
It wasn’t said with malice. It wasn’t even unkind. But it landed hard. What stayed with me wasn’t just the statement itself, but everything that didn’t follow. There was no discussion about what support might look like, no exploration of how she learned, no curiosity about how the program could adapt. The uncertainty was placed squarely on us. We were left to decide whether this was an opportunity worth pushing for or a situation that might cause more harm than good, without the benefit of real insight or shared understanding.
That moment became a pattern.
When Struggle Stays Invisible
As Emily got older, we often didn’t know she was struggling until grades were posted. Missing assignments didn’t surface through communication or conversation; they showed up after the fact, when the damage was already done. When we did dig in, the explanation was almost never a lack of effort or ability. Most of the time, it came down to something much quieter and harder to see. She didn’t know how to start, and she didn’t know how to ask for help. So she avoided it, acted like everything was fine, and let the problem sit until it couldn’t anymore.
From the outside, it looked like disorganization. From the inside, it was paralysis.
Parenting Without Visibility
That’s where parenting gets especially hard. You don’t want to hover. You don’t want to interrogate. You don’t want every evening to turn into conflict. But without visibility into what’s actually happening, you’re forced into a reactive role. You find out too late, and by then frustration has already set in on all sides. The intent to support turns into stress. The gap between effort and outcome keeps widening.
When Fear Replaces Possibility
By the time she reached high school, subjects like math and science felt less like opportunities and more like walls. Not because she wasn’t capable of learning them, but because neither we nor the system around her had the right supports in place. Teachers were stretched thin. We didn’t know how to help. So we did what many parents do when they’re scared and unsure. We steered away. We met the minimum requirements and avoided the rest.
Sometimes I wonder what we unintentionally took from her by doing that. Not because we didn’t believe in her, but because the lack of support made those subjects feel unsafe. When parents don’t have clarity, decisions get driven by fear instead of possibility. The question stops being “What could she learn?” and becomes “How do we keep this from going badly?”
That isn’t a parenting failure. It’s a system failure.
When Parents Are Asked to Fill the Gaps
Parents are asked to advocate, support, and plan with incomplete information. They’re expected to step in when things go wrong, without the insight or tools that would help them intervene earlier. They’re left to interpret silence, gaps, and missed signals, all while trying to protect their child’s confidence and emotional well-being. And when that support breaks down, inclusion quietly does too.
Closing the Gaps Between the People Who Care
This is why I care so deeply about the work being done at HiNaia. Not because parents need to do more, but because they need better support. They need clarity instead of guesswork, visibility instead of surprises, and a shared understanding of what their child is actually experiencing beneath the surface. When parents have that, conversations change. Frustration softens. Planning replaces panic. Decisions are guided by possibility instead of fear.
HiNAIA isn’t about fixing kids. It’s about closing the gaps between the people trying to support them. It’s about making effort visible before it turns into crisis, and helping parents, teachers, and support teams work from the same understanding so students aren’t left to navigate everything on their own.
Inclusion happens when opportunity finally matches that presence, and when families aren’t left guessing where things went wrong or how to help make them right.
That’s when inclusion becomes real.
Continue the series:
→ Read Part 2: Presence Isn’t Inclusion, Especially for Students