The Power of Asking for Help: A Parent Carer's Journey Through Advocacy, Frustration, and Family Time

A Personal Reflection

Listening to the many parents I spoke to at our events over the summer, I felt a deep sense of connection—and a familiar ache. Their stories, their questions, their quiet resilience reminded me just how far I’ve come, and how much we all carry.

I’ve spent fifteen years waist-deep in this community. Fifteen years of navigating systems, decoding jargon, attending meetings, and advocating for a child who doesn’t fit the “typical” mould. And through it all, I’ve learned, stumbled, grown, and kept going.

So I thought I’d share my personal views—not as an expert, but as a woman with lived experience and a parent who’s lived it. What would I tell myself at the beginning of this journey? What would I whisper to myself years in, when the exhaustion crept in and the fight felt endless?

This blog is my answer. It’s for every parent carer who’s just starting out, and every one of us still in the thick of it. Because asking for help, protecting our time, and advocating with love aren’t just strategies—they’re lifelines.

The Frustration of Being Misunderstood

One of the hardest parts of this journey is watching your child be misunderstood. You see their brilliance, their quirks, their potential—but others might only see challenges. Systems designed to support can sometimes feel like barriers. And that disconnect, it’s exhausting.

You find yourself explaining, justifying, advocating—again and again. It’s easy to feel like you’re the only one who truly sees your child. That frustration is real. And it’s okay to feel it.

Asking for Help Isn’t Weakness — It’s Wisdom

There’s a myth that parent carers must do it all. That asking for help means you’re not coping. But the truth is, asking for help is how we keep coping.

Whether it’s reaching out to professionals, leaning on friends, joining support groups, or simply saying “I need a break,” help is how we stay strong enough to keep going. It’s how we protect our mental health and continue to advocate effectively.

You don’t have to do this alone. And you shouldn’t.

Self-Care Isn’t Selfish—It’s Survival

Self-care isn’t about indulgence—it’s about sustainability. It’s about boundaries, rest, and protecting your energy. Because your child doesn’t need a perfect parent—they need you. The real you. The present, grounded, and emotionally available you.

So, take a break. Say no, prioritise joy. You matter, too.

Protecting Family Time: Because These Moments Are Irreplaceable

In the whirlwind of appointments, paperwork, and advocacy, it’s easy to lose sight of the simple, joyful moments. But these are the moments that matter most. The giggles, the cuddles, the quiet evenings—they’re the memories we carry.

Protecting family time isn’t a luxury. It’s a necessity because we don’t get another chance at this.

What I Would Have Done Differently?

If I could go back, I’d start strong—but I’d also work smart.

· Understand that most people are kind but not always informed. Listen, but stay grounded in facts.

· Know the process. Whether it’s EHCPs, referrals, or complaints—understanding the system gives you power.

· Take small, measured steps. Big change takes time. Progress is progress.

· Track everything. Every email, meeting, and conversation—document it. It’s your safety net.

· Remember: it’s a marathon, not a sprint. Pace yourself. Protect your energy.

And most importantly: keep going even when it’s hard, even when you feel unheard.

Because your voice matters, your child matters. And the memories you’re making—they’re worth every ounce of effort.

A Call for connection and support

If you’re a parent carer reading this, know that you’re not alone. Your story is powerful. Your experience is valid. And your voice deserves to be heard.

I’d love to hear from you—what’s helped you on your journey? What would you tell your past self? Let’s build a space where parent carers can connect, support, and uplift one another.

Because together, we’re stronger.