The Message You Don’t Want to Hear.

When the world gets too loud, exhausted parents can sometimes stop hearing the one voice that matters most. Here’s why… and how to get it back.

Before you think this isn’t about you because your child’s needs are different from mine, this isn’t a story about diagnoses. It’s a story about us, the parents. The details differ but the experiences and emotions are painfully similar.

There was a point, a few years ago now, when my daughter was drifting in all areas of her life. Her medication wasn’t working anymore. She was unwell every day. Her attendance at school dropped. Friends faded away. Her world became smaller and smaller as she had to retreat into her own little world, whilst still being expected to take medications we weren’t even sure were helping.

One afternoon, phone pressed to my ear, speaking to our lovely nurse specialist I said, “This isn’t okay. She’s genuinely struggling to cope now. What else can we do?”

There was a pause. “I don’t know what else to suggest. If it gets worse, you’ll have to take her to A&E.”

When it did get worse, and we took her, A&E sent us home with a kind and supportive metaphorical hug saying, “This is too specialist for us — you’ll have to go to her main hospital.”

Around the same time, I sat across from the Deputy Head at school, explaining that GCSEs were looking increasingly unlikely and wondering aloud about homeschooling. I wasn’t looking for miracles, just guidance. A signpost. Anything.

“I’m sorry,” she said. “It’s not something I know anything about.”

And so there we were. Surrounded by lovely, well-meaning professionals who had absolutely no advice to offer. In our own different ways my daughter and I were both left to navigate stormy seas with no map, no experience, and a rapidly diminishing confidence.

No one prepares you for this part of our special needs parenting.

We all imagine, in those early days, what life with our child will be like: the joy, the cuddles, the messy laughter, the milestones. And yes, for all parents, reality eventually replaces the fantasy. But for some of us, the reality is peppered with something more: fear, unpredictability, medical uncertainty, exhaustion, grief, and the constant sense that you’re balancing your life — and theirs — on a knife edge.

We live life in the unknown.

We never dare dream.

We plan nothing.

We stay positive so they don’t worry, even when we feel like we’re disappearing inside ourselves.

Coping with the impossible becomes our daily normal.

And showing weakness? That feels dangerous because you know if you let the guard slip, even for a moment, you’re terrified you won’t be able to get it back up again.

After enough disappointments — enough school meetings, failed treatments, confusing consultations, “If it gets worse go to A&E” moments — you start to doubt everything. Even your ability to know what’s best for your child.

You might feel like you’re winging it (and let’s be honest, sometimes you absolutely are). But I’m here to remind you that you are still getting up, still thinking, still making decisions, still keeping your child afloat in a system that often doesn’t know what to do with them.

You do know their patterns, their fears, their humour, their limitations, their triggers, their strengths.

You can spot the wrong friend, the wrong doctor, the wrong decision, the wrong classroom, the wrong medication a mile away.

Your maternal instinct is a force of nature.

But it’s very hard to hear when you’re drowning.

So here’s the truth:

Your instincts are not gone.

You’re just exhausted.

And this is why you need to pause, even for a minute.

I can practically hear your response:

“I don’t have time.”

“I can’t take a break.”

“Not with everything going on.”

“You don’t understand.”

I do understand.

Deeply.

And you’re right — from where you’re standing right now.

But hear me out.

This isn’t a luxury.

It's maintenance.

Your maintenance; the kind that keeps you functioning when life gives you no breaks.

Because whether you like it or not, you are the glue, the cement, the scaffolding holding your family up. When you wobble, everything wobbles. When you unravel, everything unravels. When you’re running on fumes you start snapping, shouting, withdrawing, or shutting down and then everyone feels it.

So this isn’t actually about knowing what’s best for your child. It’s about knowing what’s best for you first. Because this is what allows you to connect with your instincts again.

Reconnect with your centre, even briefly, and you’ll feel the difference almost immediately. If you don’t, you are guaranteeing that everything gets harder — for everyone.

When you pause, you come back a little softer.

A little more grounded.

A little more like yourself.

And when you feel safer and steadier inside, tapping into your maternal instinct becomes so much easier. And that instinct is exactly what helps you advocate, navigate, notice, fight, soothe, support, and keep your child afloat.

Did I take this advice at the time?

Absolutely not!

I didn’t think it counted - because it came from me.

But it was the advice I most needed.

Take the pause.

You are extraordinary.

Don’t underestimate yourself.

There were times I wish I’d had someone to talk to, or reached out sooner, or admitted I was emotionally exhausted. If today feels like too much, you don’t have to sit with it alone. There's almost always someone who's been through something similar, which is exactly why our private Facebook group exists. It's a quiet corner full of parents who understand. And if you're looking for individual support, that's something I specialise in.

For the lovely Monika, who always tried her very best to help us and deals with stuff most of us would never even consider.