Fire that burns you clean: Parenting a special child

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OPINION

By Mia Agatha

There are fires in life that destroy forever, and then there are fires that refine you. They don’t consume you all at once, but slowly, over the years. They strip you of ego, expectation, control, and certainty in life. And what’s left if you survive the fire is something clearer, stronger, and more essential.

Before your child is born or before their diagnosis, a parent carries silent dreams. You imagine futures, playdates, school pictures, milestones, and college tours. Even if you think you’re flexible, you still build a quiet architecture of expectation around your bond with the child. And when life asks you to burn that blueprint, it doesn’t ask kindly. parents realise that the path won’t look the way they imagined. Life didn’t ask them, “Are you ready to let go of these dreams?” It simply forced them to adapt, grieve, and grow.

Those with special children will understand this. A parent can grieve quietly. In parking lots, in their beds, wherever they get an opportunity to release the pain and anger.

This kind of fire is not for your child because this special child is whole, perfect, breathtaking. This heat is for the loss of ease. The loss of being able to parent on autopilot, or brag on social media, or feel like you’re doing things “right.” And as you sit in that fire — the fire of unknowns, the fire of advocating, the fire of daily exhaustion, something in the parents begins to change.

You stop parenting for the gaze of others, where one needs to prove themselves as a “good parent.”

You stop trying to make your child appear “normal” or acceptable to the outside world.

You stop obsessing over milestones, appearances, or comparisons to other families.

You start focusing only on your child’s actual needs and your unique connection with them, even if others don’t understand or approve.

You stop measuring success by standards that never fit your family.

You start noticing things no one else sees, fleeting moments of eye contact, a spontaneous hug, a sentence formed after months of silence.

You begin to meet your child exactly where they are. And more importantly, you begin to meet yourself there too; raw, stripped down, no longer pretending to be the perfect parent.

It burns away performative parenting, competitive milestones, and the toxic glow of Pinterest perfection. It burns away shame. It burns away the fear of being judged or even caring what strangers in the grocery store think when your child is melting down, you even stop apologising for your child’s differences.

And in that scorched earth, something fierce grows:

Unshakable love where one has to endure love that does not waver, no matter how difficult things get. It holds steady through exhaustion, meltdowns, missed milestones, medical diagnoses, isolation, public judgment and moments of heartbreak or helplessness. It’s the kind of love that isn't conditional on achievement, progress, or ease. It's not about being proud of what your child does, but fiercely loving who they are. Period.

Unbreakable presence where a parent has to Hold space for their meltdowns, without rushing them to “get over it, showing up to every appointment, meeting, and therapy session even when it’s the tenth one that week, watching your child struggle and resisting the urge to fix, control, learning their cues, their rhythms, their boundaries and respecting them, even when the world doesn’t. Refusing to emotionally withdraw, even when you're worn thin because you know your child needs is not just your love, but also your presence.

Unrelenting advocacy. Most parents never give up when it comes to securing what the child needs to thrive. Parents of special needs children often become fierce, persistent champions not by choice, but by necessity. They fight for proper support in school, ensuring their child receives accommodations, therapies, or specialised services.

They ask for feedback, not just occasionally, but consistently tracking progress, noticing patterns, and pushing for adjustments when something isn’t working. They give focused attention to every small step forward, because they know that progress doesn’t always look like it does for other kids.

This kind of advocacy is not occasional; it’s daily. It’s woven into every phone call, every form, every meeting, and every conversation. And even when the system resists or fails, these parents keep showing up because no one else will fight as fiercely for their child’s voice to be heard and their needs to be met.

Pushing back against unfair treatment or low expectations. A parent will refuse to accept unfair treatment or low expectations placed on your child because of their diagnosis or differences. Too often, special needs children are underestimated, written off, sidelined, or labelled as "difficult" before they're even given a fair chance. Parents quickly learn they must challenge these assumptions.

They push back when teachers lower the bar instead of offering support. They speak up when their child is excluded instead of included. They correct those who define their child by limitations rather than potential. It’s exhausting, and it can be uncomfortable but it's necessary. Because every child deserves to be seen for who they are, not just for what others believe they can’t do.

Learning Systems Just to Keep Up. Many parents of special needs children tend to step into roles they never expected to play, like therapist, case manager, educator, and legal advocate, often all at once. They find themselves learning the language of medical reports, navigating education plans, and sometimes even challenging legal systems to secure the support their child is entitled to.

None of it comes with a manual. It’s overwhelming, confusing, and emotionally draining, but they do it because they can’t afford not to. These parents become experts in systems they never wanted to enter, just to make sure their child isn’t left behind, overlooked, or denied access. It’s not a choice; it’s a necessity — a fierce kind of love that shows up in research and the refusal to let the system forget their child. Unfortunately, in Uganda, many of the special needs schools are extremely expensive, leaving out those who can't afford fees or even facilitate them, especially those in remote areas.

Translating your child’s needs to a world that often doesn’t understand or make space for them. One of the most emotionally exhausting parts of parenting a special needs child is constantly translating their needs to a world that doesn't naturally make space for them. You become the bridge between your child and their teachers, doctors, peers, and even extended family. You explain behaviours that others misinterpret. You advocate for accommodations that others think are “too much.”

You find yourself softening the harshness of the outside world so your child can exist in it safely. It’s a job that requires empathy, clarity, and endless repetition — because the world doesn’t always listen the first time. Or the second. Still, you keep translating. Not because your child needs to change to fit the world, but because the world needs help learning how to see them clearly, and with compassion.

As a parent, one of the fiercest responsibilities is protecting your child’s identity — not just from harm, but from reduction. The world is quick to assign labels: autistic, delayed, nonverbal, oppositional, disabled. These words may carry medical truth, but they often come with assumptions and limits that don’t reflect your child’s full humanity.

Refusing to let others define your child by their diagnosis, delay, or difference means standing your ground when professionals, educators, or even well-meaning family members see only what your child struggles with — and overlook their strengths, creativity, humour, or sensitivity. It means reminding the world: My child is not a problem to solve. They are a person to love, to support, and to understand. You don’t deny the diagnosis, but you just won’t let it become the whole story.

Advocating even when your voice shakes. Because your child needs someone who won’t back down. Sometimes advocacy doesn’t sound like a bold speech. Sometimes, it sounds like a trembling voice in a crowded room, a parent holding back so much gets to a point where she refuses to be dismissed. You learn to speak up even when you’re scared, even when you're unsure, because your child can’t always speak for themselves. And in those moments, you discover a kind of strength you never knew you had, the strength to keep going, to not back down, because your child deserves nothing less.

You start to speak a new language of therapies and triggers, of accommodations and access and more importantly, the language of intuition. You learn to see your child’s soul beneath behaviour. You learn that success might not look like grades or trophies, but like peace, regulation, joy and sometimes success is just a good day.

And on those days, you feel the fire warming you, not burning you. The kind of warmth that says: We’re still here. We’re doing this together.

There is no final arrival point in parenting a special child. No finish line. But there is a transformation again and again. Every time something feels like too much, and somehow, you survive it. Every time you think you can’t stretch further, you do.

The world may not call you a saint. You don’t need it to. You’re not doing this for praise. You’re doing it for the child who trusts you with their life. You’re doing it because love made you strong enough to endure the fire and come out clean.

In conclusion, parenting a child with special needs is a fire that never fully dies down. It smoulders in everyday challenges, the unknowns, the grief over what could have been. But in that same fire lies an unexpected clarity. It burns away illusions, comparisons, and the ego that once needed control. What’s left is something raw, real, and deeply human.

In the ashes, we find new definitions of success, of love and resilience. We learn to live in the moment, to celebrate what others might overlook, and to hold space for complexity, joy and sorrow, frustration and awe, coexisting at once. The fire does burn. But in burning, it cleanses. And what remains is not weakness, but a fierce, unbreakable bond of love redefined by the fire that forged it.

The writer is a mother of a special child