20/04/2026
I’d like to stop now.
Walt’s big seizure was in the middle of the Easter holidays .
His consultant is on annual leave, but her colleagues saw the video I took—and they were concerned enough to push for a sleep-induced EEG on Friday, so there’d be something ready for our appointment next week.
A sleep induced EEG means letting them sleep all night, bringing them in early, giving a large dose of melatonin, and hoping they fall asleep while wired up so the brain activity can be monitored during the fall asleep part.
I already knew how this was going to go.
Melatonin has never worked for Walt. It just makes him tired… and angry.
But we couldn’t say no.
Because this test could show if seizures are happening in his sleep—the kind that can lead to sudden death in epilepsy. They explained this and this was an important test.
So we had to try.
We arrived at 8:15am, already knowing this wasn’t going to work.
Every part of me wanted to turn around as we pulled into the neuro department.
Instead, we walked in. Deep breaths.
Same room as before. No bed. No comfort. No calm environment.
Just a chair, wires, and expectation.
They wanted him to sit on his dad’s knee, take the medication, and fall asleep… with 23 wires attached to his head.
Now maybe it’s just me—but what almost 8-year-old is falling asleep like that?
And not just any child—Walt.
He did amazingly at first.
Upset, yes. Shouting, yes. But not crying.
Then came the waiting.
Dim lights. Quiet music. Cuddles.
“Is there anything that helps Walt fall asleep?”
I almost laughed.
This child hasn’t slept properly in 8 years babe. And today, after a full night’s sleep, with wires glued to his head, in a clinical room… we’re expecting him to drift off?
It wasn’t happening.
The melatonin kicked in—but instead of sleep, it brought frustration.
His brain was being told he was tired, but his body knew he wasn’t.
And then it all unraveled.
Tired.
Ratty.
Angry.
Screaming.
Crying—real tears.
Then the headbutting.
Hitting himself.
Complete distress.
And that was it for me.
“I’d like to stop now.”
“It would be good if he could fall asleep—”
“No. He’s not going to. Stop now.”
I could tell she wasn’t happy.
But I didn’t care anymore.
Yes, I want answers.
Yes, I want them to have the information they need.
But not at the cost of traumatising my child—who doesn’t understand any of this.
He doesn’t understand the seizures.
He definitely doesn’t understand why we’re holding him down while strangers stick wires to his head and flash lights in his eyes.
If Walt were neurotypical, he would have had an emergency MRI by now.
The only reason he hasn’t? Autism.
And that makes me furious.
They carried on briefly with a standard EEG while the wires were on.
Flashing lights. Tears streaming.
It felt less like treatment and more like something we were all just enduring.
Then came the final ask:
“Can you cover his eyes for two minutes?”
He’s screaming. He’s terrified. He doesn’t understand.
And we’re already holding him down.
I tried. For a second.
Then I came to my fu***ng senses.
We stood up and started taking the wires off.
Because enough is enough.
Walking out of these appointments, I always feel… violated.
Like I’ve been forced into something every part of me didn’t want to do.
And then I think about Walt.
How does he feel?
Does he feel the same? Worse?
Does he wonder why his mam and dad are the ones holding him down?
That thought breaks my heart every single time.
But I couldn’t let this be the day. It couldn’t end there. And this be the thing we did today.
Months ago, I signed up for North East Autism Society autism awareness walk. And somehow—it was today.
So we went.
We sat in the car for a bit first, all of us wanting to cry.
But like always… we kept going.
Walt was exhausted from the melatonin, but he still had little bursts—little runs between rests in his chair.
He showed up. And so did we.
And after the morning we’d had, there was nowhere better to be than surrounded by other autism families—people who understand, who don’t question, who just get it.
From one of the hardest moments… to a space full of acceptance. So thank you to North east autism society.
We’re not done.
We’re back at neurology again tomorrow.
But this time, I’ll be stronger.
For him.
💔💪
