Holding the Line Without Losing Yourself

This piece is written from lived experience and reflects over a decade of advocacy work with families of children with Specific Learning Difficulties (SLD). It is not medical advice. If you’re struggling with your mental health, please seek support from a qualified health professional.

If you’ve ever felt physically ill after reading a school report, broken down after another meeting where you weren’t heard, or walked out of a psychologist’s office with your child’s diagnosis echoing like a gong in your head - this is for you.

Parent advocacy is hard. Not “I need a coffee” hard - grief-hard. Gaslight-hard. No-one-hears-you-but-you-keep-showing-up-anyway hard.

I’ve been in this space for over a decade, and I wish I could tell you it gets easier. In some ways, it does - but only when you stop expecting the system to care more than you do. That’s the pivot no one tells you about: you end up filling the gaps in the system - not because you want to, but because your child’s safety, education, and dignity depend on it.

But let’s name something just as important: this kind of advocacy takes a toll. And if you don’t protect your mental health while you’re fighting for your child’s, you will burn out.

The hidden cost of advocacy

I’ve spoken with many parents and fellow advocates who express deep frustration at the role that has been forced upon them because the system built to support their children is failing, including myself. And let’s be clear: some great professional people are working in this space - Principals, teachers, aides, therapists - professionals who genuinely want to help. But when a parent-led community like Dyslexia Victoria Support has over 12,000 members, and continues to grow, it sends a loud, clear message: something isn’t working. Something is going very wrong in the way our systems are set up to support children and families impacted by learning difficulties.

I also want to acknowledge the incredible Australian advocates who have been questioning these systems long before me, people like Professor Pamela Snow, Alison Clarke, Dr Jennifer Buckingham, Max Holheart, Professor Kevin Wheldall, Professor Anne Castles, Dr Tanya Serry and Dr Lorraine Hammond, Cath Scott, Mandy Nayton, Molly de Lemos, and Julie Phillips, et al. Their work has helped shift national conversations and paved the way for parent-led advocacy. I was devastated to hear that the DDOLL Network is closing. That loss will be deeply felt across our community.

When parents raise concerns - especially about invisible disabilities like dyslexia or ADHD - we are often met, at all levels, with defensiveness, dismissal, or silence. We’re labelled difficult, overinvolved, or emotional. We’re asked, “Have you tried just letting them be?” Or worse, we’re blamed for the problem. The amount of horrific parent-blame experiences I hear is astounding.

It’s not just frustrating. It’s traumatising. And yet we keep going, because stopping isn’t an option.

Every time we translate a psych report, read an ILP, or prepare for another school meeting, our nervous systems take the hit. We carry the stress in our muscles, our sleep, our digestion, and our moods. It shows up as migraines, fatigue, or that familiar tight feeling in your chest after you open another disappointing email from school.

And then there are the reports - plural. Cognitive assessments, NAPLAN results, school progress reports, ILPs that miss the mark, even letters from politicians brushing off your concerns. For many families, these aren’t just documents. They’re loaded with judgment, omission, or subtle blame. Often, they’re shaped by cognitive bias - written by people working within systems that are under-resourced, misaligned, or not equipped to fully understand your child’s needs or your family’s journey.

The system is set up to protect itself. When concerns are raised, the wagons are circled—often following a familiar but unspoken pattern: deny the problem, question the credibility of the parent, and shift the blame back onto those raising the concern. It's a cycle that leaves families feeling like the offenders instead of the ones seeking justice. And parents are left standing outside them, holding the data, the reports, and their children’s stories, often alone.

Worse still, much of the wider community doesn't see any of this. From the outside, it can look like you’re overreacting to a few school meetings or reading too much into a test score. But what they don't see is the emotional labour, the hours of unpaid admin, and the constant mental load of translating systems that weren’t built for your child - or the growing awareness that you're trying to support your child within a biased, broken system.

Five things I want parent advocates to know

• You are not overreacting. The stress you're feeling is a rational response to an irrational system.

• You can be direct and still be heard. Clear, firm, and factual is enough.

• You are allowed to rest. This doesn’t mean giving up. It means recognising you’re not a machine.

• You are not the only one. There is a whole community here that gets it - even if your school doesn’t.

• You’re not required to carry the emotional weight of a system that let your child down. You can be respectful and hold the line.

  
  

So what helps?

Dyslexia Victoria Support is more than a community; we're also an information hub for evidence-based support. We help families access reliable, research-aligned resources so they can advocate with confidence and clarity.

At DVS, we’ve always said the first step is connection. Not just with professionals or services, but with each other. The kind of solidarity that says, “I believe you. I’ve been there too.”

There are tools and resources that can help families keep track of their documentation and prepare for meetings - but just as importantly, we need space to talk about the emotional side of advocacy. Because it’s real. And it matters.

You are allowed to cry after a meeting. You’re allowed to take a break from the Facebook group. You’re allowed to feel angry that you had to become an expert in cognitive testing just to get your child to read.

And you’re allowed to say: This is hard. But I’m still here.

Build Your Support Team

If you're heading into a difficult meeting or preparing for a new round of assessments, don’t go alone if you can avoid it. Bring a trusted advocate with you - someone who understands the terrain and won’t be emotionally swayed by deflection or jargon. A teacher peer is a good resource.

Even more importantly, find yourself a well-informed sounding board. Whether it’s a peer, a professional, or someone from the DVS community, having someone to sense-check reports, rehearse scripts, or simply validate your instincts can make all the difference.

Advocacy can be a lonely road - but it shouldn’t be. If you're doing this alone, it's not because you should be. Peer support isn't optional; it's protective. We don’t just need it - we deserve it.

No one should have to navigate this alone - and you don’t have to.

If today’s one of those days...

Just know this: you’re not alone, you’re not imagining it, and you’re not the problem. You’re doing what too many others won’t - standing in the gap for a child who needs you to keep going.

So take a deep breath. Take a walk. Take a moment. Then take the next step - when you’re ready. We’ll be here when you do.

Need Support?

If advocacy is taking a toll on your mental health, you are not alone. Here are a few places to turn:

• Carer Gateway: 1800 422 737 – Support for carers across Australia

• Parentline VIC: 13 22 89 – Counselling and guidance for parents

• Beyond Blue: 1300 22 4636 – Mental health support and resources

• Lifeline: 13 11 14 – Crisis support and suicide prevention