My Penelope

17/09/2026

A real checklist for your child's next EHCP review — not the paperwork you think you're supposed to have, the evidence that actually moves a decision.

With the White Paper reforms not there yet, the EHCP review in front of you right now still runs on the same evidence it always has. Here's what's actually worth bringing:

💜A dated incident log — not memory, actual dates and details written down as they happened.

💜Medication changes and what you noticed afterwards — any dose or type change, and what shifted in the days that followed.

💜School attendance pattern — the gaps tell their own story; bring the pattern, not just the total.

💜Sleep pattern — it affects everything else in the log, so it's worth showing on its own.

💜Any recent assessments — bring copies. Don't assume the room already has them.

This is what turns "she's been struggling" into something a panel can actually act on. It's also exactly what pulling together every appointment, every log, every pattern in one place is for — however you choose to do it.

Save this, and if you know someone prepping for a review, tag them below.

15/09/2026

15/09/2026

It's been talked about a lot but having had a break over the Summer it's still a topic that needs continual discussion.

The Schools White Paper's SEND reforms are the biggest shift to this system in a decade. Here's what's actually changing — and what isn't, for a while yet.
If your feed's full of parents asking what the Schools White Paper actually means for EHCPs, here's the plain version.

What's changing: support moves to four tiers — universal, then Targeted, Targeted Plus, and Specialist. Every child with additional needs gets a digital Individual Support Plan that both school and parents can see, with schools legally required to create and review it. EHCPs themselves move to a digital format. Secondary schools are expected to eventually have dedicated "inclusion bases" for specialist teaching. And there's a new £1.8 billion service — Experts at Hand — meant to get mainstream schools direct access to occupational therapy, educational psychology and speech therapy, rather than the current postcode-lottery wait.

What isn't changing: EHCPs stay in place for children who need more than mainstream schools routinely offer. Special school protections stay as they are.
Here's the part worth saying plainly: none of this starts before September 2030. £7 billion in additional funding is allocated through to 2028–29, but if your child needs support now, this reform doesn't touch this year, or arguably the next few.

Cautious optimism from me on the direction — digital, structured records are exactly the right instinct. But "digital EHCP" only works if what feeds it is accurate and current, not reconstructed from memory at review time. That's true whether the system changes in 2030 or not.

What's your honest reaction — relief, or "we've heard promises like this before"? Tell me straight in the comments.

05/09/2026

**“How do you do it?”**

It’s a question we get asked so often.

How do you cope with three children?
How do you manage a wheelchair and a pushchair?
How do you cope with Penny’s meltdowns?
How do you live with her seizures?

I’ve been asked this question a lot this week since coming home from our trip to Disney, and honestly, I never quite know how to answer.

What is the “correct” response?

Do I give a nervous, awkward smile and say, “We just get on with it”? Or do I actually answer honestly and say, *“She’s my daughter. What do you expect? This is the hand we’ve been dealt.”*

The difficult thing is that I know these questions are never asked with malice. They’re usually asked with genuine support and kindness. But sometimes I struggle to put into words what our reality actually looks like.

Because behind the smiling, happy photos and the Disney magic were more seizures than I could possibly count. There were angry, public meltdowns, completely visible to every parent around us. There was happy stimming that other parents innocently told their children to “shush” because they were repeating Penny.

There were hard moments. Lots of them.

But we do it because life is there to be lived.

Those moments of pure, unfiltered joy — like watching Penny meet Anna and Elsa — were worth every difficult moment that came before them. And we have two other children who deserve to experience the magic too.

We may have been dealt a different hand, but that doesn’t mean we’re going to stop living life to the fullest.

And with **My Penelope** there to support us, we’re getting better at understanding Penny’s limits, recognising the signs and knowing when she needs more support.

That’s why tracking is so important.

You track the hard moments so you can understand them, learn from them and hopefully plan more of the good ones.

Because the goal isn’t to avoid life because it might be difficult.

**The goal is to understand what makes life possible — and then go out there and live it.** ❤️

01/09/2026

11/08/2026

🧩 One symptom rarely tells the whole story.

With medically complex conditions such as epilepsy and cerebral palsy, symptoms can overlap, interact and sometimes look very similar.

That’s why it’s important to look at more than one thing.

Logging seizures alongside sleep, fatigue, pain, movement, behaviour and other changes can help reveal patterns that might otherwise be missed.

It’s not about tracking everything perfectly. It’s about building a bigger picture over time.

Because when conditions are complex, symptoms don’t always fit neatly into separate boxes.

💜 The whole picture matters.

10/08/2026

Not different—just wired differently. 💜
Different pathways. Different signals. That’s it.

07/08/2026

Mobility changes don’t just “happen” — they tell a story. 📊
Tracking them can mean earlier support, better care, and real quality of life for patients with complex needs. 💜