Maybe tomorrow: reflections on goal post shifting and the economics of access

We have spent hundreds of thousands of dollars, trying to get our children supported in public school.

The cost begins with the reports—the private assessments, the travel to specialists, the hours of therapy that are required not for our children to function, but to convince the school that they are worthy of care. Then there are the unpaid hours: coordinating appointments, attending meetings, documenting incidents, crafting emails that double as legal records, reducing hours at work, not going for a promotion.

It is not just the money. It is the exhaustion of being made to prove—again and again—that your child is struggling, that your child deserves access, that your child is not faking or manipulating or misbehaving. It is the exhaustion of chasing moving goalposts.

First we were told to wait for a new teacher. Then to wait for a new assessment. Then to try a different application. Then to pursue another program. Then to do more therapy. Then to do another intake. Each time we complied. Each time we hoped. Each time we met, we received another report card on our family’s efforts: fail!!!

Support is always just on the other side of the next act of compliance

Every time we meet the requirement, the goalpost moves.

This is the quiet privatisation of public support, where the families who can afford to supplement, to organise, to advocate—might eventually be heard. And the rest are left behind.

There were accommodations on paper and endless lip-service meetings. Lots of performative accessibility. But none of those things happened in the classroom. It was chaos. And still I went to another meeting where we hatched IEP goals like they meant something—as if the act of writing them could conjure the staff needed to support the implementation.

Our principal was obsessed with positivity. Any mention of harm, of difficulty, of pain—was received like a moral offence. To speak the truth of our children’s struggle was to violate an unspoken code. If I brought up something negative, it felt like I was being cast as the problem. Her fixation on optimism made accountability feel impossible. Because if everything is always framed as progress, then suffering becomes a kind of rudeness.

The sorting hat

There is an unspoken sorting process in schools—a moral triage that divides disabled children into categories:

• the hopeless, who are pitied
• the fixable, who are pushed
• and the inconvenient, who are punished

My children don’t fit neatly into any of these categories. They are gifted and disabled. They are insightful and overwhelmed. Capable of astonishing things, and sometimes unable to sit still.

This confuses the system. It wants binaries. It wants children who are either exceptional or impaired, so it knows how to respond. But gifted disabled kids break that logic.

What I have learned is this: if they think you might survive without support, they make you prove it—again and again. They deny care on the grounds that you could be okay—if only you worked harder, masked better, fit in more quietly. They call it high-functioning. But we are not functioning now—broken from years of neglect.

And when you fail to function under the weight of their expectations, they act surprised. They act like your breakdown is the evidence that you never really belonged.

Being gifted doesn’t protect you. It renders your pain illegible. Because the system believes that brilliance is the opposite of need—and that suffering is only real when it looks like helplessness.

Assimilate or die

We did the intakes. We filled out the forms. We paid for the assessments. We rearranged our lives. And still our children are punished for being dysregulated in the exact classrooms that refused to meet their needs.

Because what the system wants is not access. It is assimilation.

They want our children to overcome their autism. We just want them to be seen as disabled.

I remember saying something like this to the principal—trying to explain that what we needed wasn’t more goals for independence, but more understanding of capacity. The next goal she suggested was self-advocacy. Sigh.

She always looked at me like I had confessed something shameful in those meetings. Like I had given up. Like I had said I didn’t believe in my child’s future.

It felt like she had diagnosed me—Munchausen by proxy, or something close. As if hoping for care, hoping for accommodation, hoping for peace was a kind of betrayal. As if I was selling my children short by asking that they be accepted as they are, not only as who the system hopes they might one day become.

We are not ashamed of being disabled. We are exhausted by being denied.

As Ari Ne’eman writes, “the root of the problem is not the impairment—it is the refusal of society to adapt.” Wikipedia.org Supports must be proactive, not doled out only after repeated proof of suffering. This conditionality erodes family capacity, creates burnout, and systematically excludes those with the least capital to self-advocate. When systems reward masking and punish difference, they teach children that support is conditional—and their distress, ignorable.

How fortunes change

A friend once told me how wonderful the school had been to her daughter. Her child had experienced something devastating and the school had responded, she said, with extraordinary care. Teachers sent messages. Work was modified. Staff checked in with tenderness.

At the time, I said it was fortunate. I meant it. But I also remember how it felt, holding this news in my hands like something sharp. My children were also struggling. But we were treated like we had a contagious disease and there was something disgusting on our clothes.

I tried to not say anything, just let her have that small mercy, given the hell they had been through. I knew that telling her the truth—that it didn’t last, that it’s conditional, that it’s only care as long as your child fits the narrative of recoverable pain—would sound bitter. And I didn’t want to sound bitter. Even though I was exhausted. Even though it hurt my skin.

It took a while, but eventually, her daughter stopped going to school. The calls and check-ins faded—not all at once, but gradually, until the silence was complete. No one asked how she was anymore. And now, when my friend speaks, her voice carries the same fragile edge mine had—back when I still thought I had to pretend I believed in the process. There’s a new tautness in her words, a hollowness in the rituals. She says she’s tired, and I know exactly what she means—not the kind of tired that sleep solves, but the kind that makes everything else feel ridiculous: showing up to work, making dinner, folding laundry, scheduling another IEP meeting—performing the motions of daily life while your child is crumpled in bed, unreachable, and the world just keeps turning as if none of it matters.

When care relies on individual egos and prioritisation

Now she gets it—why I couldn’t rejoice in stories of institutional kindness. Because I had already learned what she was only beginning to know: that in this system, care is conditional. And when your child’s needs stop being inspiring, they stop being seen.

Maybe the problem isn’t just educational. Maybe it’s structural, cultural, psychological—a collision of exhausted institutions and deeply human reflexes. People are drawn to stories that conclude; they want difficulty to resolve, grief to transform, effort to be rewarded. They want a return on empathy. They want improvement.

But some forms of need do not resolve. Some kinds of care don’t have a narrative arc. Disability—real disability, the kind that keeps showing up even after the meetings and the therapy and the best-case scenario—is like dishes. Or taxes. It doesn’t end.

Rationing care

Most systems—most schools, most districts, most administrators—are not built to hold what persists. They are structured for short-term interventions and tidy resolutions, for needs that spike and then subside, for stories with a beginning, middle, and end. They want progress they can measure. Growth they can narrate. Struggle that redeems itself with improvement.

What they do not know how to hold—what they are structurally unprepared to hold—is need that endures. The child who still needs diapers in grade two. The student who still cannot tolerate assemblies by grade five. The teen who still needs adult co-regulation, not as a stepping stone but as a constant. These are not crises. They are realities. And they do not resolve on someone else’s timeline.

So the system begins to retreat. Not always out of cruelty, but out of exhaustion—and out of training that frames sustained need as failure. When support doesn’t produce independence, when accommodations don’t lead to disappearance of difference, the assumption is that something is wrong. Not with the supports. But with the child.

What our children need is not a miracle. They need people who stay. They need support that is structured, funded, consistent—not contingent on staff availability or adult patience. They need care that doesn’t vanish when their progress slows, or when the professionals involved grow tired of their complexity.

Care is not a pilot project. It is not a temporary plan. It is not a bullet point on a ministry report. Care is a practice. And practices require time, relationship, and infrastructure.

The problem is not our children. It is the institutions that disable them by refusing to provide what they need to thrive.

The real cost lies in the endless waitlists, the bureaucracy, the assessments we paid for ourselves just to be heard. It’s in the jobs we left, the hours we lost, the health we sacrificed—not because our children were too complex, but because systems made support conditional, inaccessible, or performative.

It’s in the IEPs that were written and ignored. The meetings that ended in promises but never in follow-through. The weeks our children spent at home because schools would not adapt. The strain of watching them break under pressure that could have been relieved—if someone, anyone, had planned ahead.

This isn’t an abstract problem. It is a daily one, measured in money, time, and trust. And we are paying that cost with everything we have.

Not because parenting a disabled child is impossible. But because we are being left to do it unsupported, in systems a system designed to make life difficult.