Written by Lesley Taylor, Clinical Psychologist and Co-founder | Spectrum North West
Raising neurodivergent children means learning, quickly, that systems aren’t built for them. And of all the systems they must navigate, school is perhaps the most rigid and emotionally charged.
I spent years walking the line between what my children needed and what was available, or even considered reasonable. And while I’m a psychologist, and had already learned the language of EHCPs, sensory breaks, executive functioning, emotional regulation, social communication, autism, ADHD, and every acronym the education system could throw at me, nothing prepared me for the silent, constant labour of advocacy.
The daily grind of emails, documents, phone calls, appointments, and reminders. The juggling act of logistics and emotions. And when I say silent, I don’t mean I was quiet, at times, it was loud and frustrating, full of urgent meetings and fraught conversations. But too often, I was silenced with a single, tidy word:
“Fine.”
They’ll be fine.
They are fine.
It will be fine.
Sometimes, it really was fine. Damn fine. There were incredible, compassionate, insightful teachers who didn’t just support my children – they saw them. Who sparked confidence, nurtured strengths, and sometimes, perhaps unknowingly, shared their own neurodivergence in a way that created deep connection and safety. They weren’t just trained to help, they understood.
But not every day was like that.
There were mornings that began with tears. Sometimes theirs, sometimes mine. Phone calls I dreaded. Emails that made my chest tighten. I learned to read between the lines of what I was told.
The tone often felt like gaslighting. Like I was overreacting. Being difficult. Making it up.
Maybe I was overly worried. But when your child is struggling, you feel it in your bones. You live in their dysregulation. You carry their exhaustion. You feel their frustration like it’s your own.
I’ve learned that you’re only ever as happy as your unhappiest child. So yes, maybe I was worried, stressed, concerned. Because they were.
They were existing in a system that was never made with them in mind.
The Hidden Requests
Sometimes the advocacy was about small things. Reasonable things. Necessary things.
I’ve asked for my child to:
- Be accompanied into class by me so they could settle
- Come home when they were distressed
- Move class to escape bullying
- Be supported to navigate other children’s unwanted behaviour
- Be noticed when they were quiet and mute
- Attend a trip, but only during the day, because overnight felt unsafe
- Have a different menu because of an eating disorder
- Arrive late to avoid the chaos of the playground, assembly or the corridor
- Take days off for energy accounting
- Be on a part-time timetable
- Be spoken to gently, in a specific way
- Drop a subject or two, for their mental health
- Not be bullied for their social naivety
- Be given space – not commands – when overwhelmed
- Be forgiven for swearing when they had no other words
- Avoid having to raise their hand in class
- Leave class early to get lunch
- Not be punished for defending themselves
- Stay home when burnt out from masking and not have their home invaded
Each request was an act of care. Of insight. Of trying to preserve their dignity and protect their wellbeing. But each one had to be explained, justified, pushed for.
In hindsight, I wish I was more able to resist this push: just get them in, they’ll be fine once they’re here.
A Different Time
I remember when I was a child, how school worked. You could go in first thing, get your mark, and leave. Some of my friends unofficially left school in Year 9. They drifted out. Maybe they were marked in. Maybe they weren’t. But no one called them the missing children, this new media-fuelled moral panic we see today.
These days, we’re told attendance is everything. The ultimate success metric.
We’re told, ‘Congratulations – your child has achieved 100% attendance!’ as if that tells the whole story.
We’re warned, ‘We are concerned your child is not attending. We may fine parents who don’t ensure their children are in school.’ As if I’m lying in bed watching Lorraine while my child dissolves behind a bedroom door.
It’s maddening. And insulting. Because if you’re a parent of a neurodivergent child, you know the work that goes unseen.
There is nothing passive about being a parent in this space.
You don’t just drop your kids off and hope for the best.
You show up.
Every. Single. Day.
Tired. Anxious. Prepared. Hoping to be heard.
Often, you’re not.
And Then One Day… It Ends
It didn’t feel like a triumphant finish line.
It felt more like slowly climbing out of deep water, and finally realising you can breathe again.
I had grown so used to operating in “school mode” – always on alert, always anticipating the next hurdle, that I didn’t notice the shift at first. The final GCSEs came and went. No more timetables. No more emails. No more hoping the next teacher would “get” my child.
The system no longer had a hold over us.
We made it.
What I’ve Learned
I’ve learned that advocacy, while exhausting, is an act of love.
I’ve learned that my children, every single day, in ways both big and small, were doing the hard work of surviving in a world that wasn’t designed for them.
I’ve learned that grief and pride can sit side by side. I grieve the parts of their school experience that should have been easier. The times they were misunderstood. The times they came home small, discouraged, or overloaded.
But I am so incredibly proud. Of who they are. Of who they’re becoming. Of the spark they’ve held onto.
I hope that, even when it was excruciating for them to have me constantly advocating, they’ve come to understand that care and advocacy, especially self-advocacy, are what allow us to survive and thrive.
Not 100% attendance.
About the author
Lesley Taylor is a Clinical Psychologist and co-founder of Spectrum North West, based in Warrington. As well as her clinical work, she is a parent of neurodivergent children, and the experience behind this post is her own. She also co-hosts the podcast Masking For It, which explores neurodevelopmental topics with honesty and insight.