Scary Seizures And The Zigzagging Journey to Understanding Neurodivergence (Our Story)
The first quiet flickers of autism appeared when Niklaas was two.
Not loud or alarming, but steady and sure, like the way dusk slips into a room.
We’d crouch on the sun-warmed floor of his bedroom, lining up his tiny toy cars with the precision of a watchmaker: red firetruck next to cherry red dump truck, lemony yellow Beetle beside mustard delivery truck, each one placed just so.
A soft hum would escape his lips as tires slid across the winding roads of his village play mat. We’d drive them in loops — never too fast, never off track.
The edge of the mat was the border. No car ever crossed it, no matter how wild the story we imagined. That was the rule. And in that rule, he found his rhythm.
Sometimes, he'd repeat words and phrases like little echoes, and flick his fingers in quiet moments.
Many times, he wouldn’t respond to his name, and if there was a sudden loud noise, he’d cover his ears and try to hide. Under a table, behind a chair, wherever it was quiet.
But unlike other autistic children I used to teach, Niklaas loved hugs. Craved them. He'd wrap himself around me like a koala and wouldn't let go.
In kindergarten, he was called “shy,” “sweet,” and “a little fearful.”
But I knew it was more than that.
I tried talking to people. Teachers, doctors, even my own family.
But no one seemed ready to listen—or maybe they just didn’t want to.
Because let's face it, it’s easier to believe a child is simply sensitive than to face the unknown.
Still, Autism runs in my husband’s side of the family. His cousins were diagnosed with Asperger's years ago, back when the term was still used. And well, my husband has "traits" as Niklaas's doctor says, but no official diagnosis.
Then came second grade.
That’s when everything went downhill, hard and fast. And, I noticed something new.
Niklaas’s head would bob sharply while eating breakfast. His hands would shake when holding a spoon, or while trying to write.
People said it was just early morning jitters. Even our paediatrician, who specialised in neurology, couldn’t see anything unusual at first.
By the 3rd grade, his symptoms escalated.
He’d come home from school looking completely drained. His face drooped. His eyes sagged. He had headaches that stopped him in his tracks.
Then, one day, his iPad dropped straight from his hands.
"My hands just let go," he whispered.
And, as he walked down the stairs, his knees buckled. That was it—I knew something wasn’t right.
I called the doctor and demanded an EEG at the Children’s Hospital in Basel.
And that’s when the graph lit up with answers.
Niklaas was experiencing constant electrical storms in his little brain. Hundreds of mini seizures in just half an hour. They were Myoclonic seizures.
But how? Where do they come from?
Our doctor explained, how seizures can be triggered by multiple factors, and often things parents never want think of.
It could be an infection, low blood sodium levels, medications (even drug use like amphetamines or cocaine, but that didn't apply.)
It could be something as serious as a brain injury or a tumour.
Sometimes, the cause remains a mystery, hidden deep in the brain's complex wiring.
And, it can feel like looking for a needle in a haystack, but the needle never shows up at all.
We started treatment that very day. And by the end of the week, his symptoms began to disappear.
It was like watching him come back to life.
Less than a month in, Niklaas was giggling again. Running. Playing. Laughing. Being his beautiful vibrant self.
Our relief was indescribable.
My husband and I had been running on autopilot for so long, just surviving the unknown. But now, with a name and a treatment plan, we could finally breathe.
But, that diagnosis was just the start of a much bigger story.
At the hospital, the doctors explained that their epilepsy diagnosis policy includes a full psychological evaluation.
That’s when we heard the word "comorbidities" for the first time.
The chief neurologist explained it like this:
“Children with epilepsy often experience cognitive and behavioural challenges, frequently linked to underlying neurodevelopmental conditions such as Autism, ADHD, or learning disorders. We’re finding more and more evidence of overlapping genetics.”
And just like that, the puzzle pieces started coming together.
By the 4th grade, Niklaas had additional diagnoses: Autism, ADHD, and Dyslexia.
That might sound like a lot. It is a lot.
But when we sat down and tried to explain, his response was simple.
"I feel like me, mommy."
And, isn’t that the whole point?
Because he is still our funny, clever, curious, affectionate boy. He’s still Niklaas.
Yes, these labels help us understand him better. They give us tools, language, and support.
But they don’t change who he is at his core.
Our journey has been full of hurdles, heartache, and sleepless nights.
But it’s also been filled with fierce love, quiet victories, and a deep gratitude for every moment we get to spend walking beside him.
And through it all, the one thing that matters most is his happiness.
That, and knowing — just like he says — that he’s always himself.
And what a beautiful self that is.
