My wife and I are incredibly blessed. We have a home, stable careers, and three amazing children.
I want to start by acknowledging this because this post comes from a place of deep frustration, and it is important to state that I know we are privileged.
However, being privileged should not mean we have to fight this hard just to get our children the basic support they need to survive the school day.
If you are a parent currently locked in a battle with the education or healthcare system, this is for you.
You are not alone, and your frustration is entirely valid.
From Support to the Funding Black Hole:
Our youngest son was non-verbal until he was three. Before he started primary school, he received excellent speech and language support from the NHS. But the moment a child turns five and enters the school system, a quiet crisis occurs.In the UK, the NHS hands over speech and language responsibility to the education system—a system with no ring-fenced funding for it.
We started the long, exhausting process of securing an Education, Health and Care Plan (EHCP). Finally, at age seven—after two full years of school—he had speech and language support again. Year 2 was turning out to be fantastic. He was catching up with his peers and looking settled.
Then came Easter.
The Day the System Broke:
Suddenly, everything changed. We faced school refusal, daily dysregulation, and constant phone calls asking us to collect him early due to “disruptive behaviour.”
I will admit that I used to be a skeptic. I was once the first person to wonder if labels like Autism, ADHD, or Pathological Demand Avoidance (PDA) were just used to excuse poor behaviour.
Then I stood in a school cloakroom and saw the reality with my own eyes.My seven-year-old boy was cornered in a cloakroom by four adults. His face was flushed puce, his back pressed against the furthest wall, trying to back away as his fight-or-flight response raged. I saw a child experiencing a terrifying medical episode.The teaching staff—all pleasant, talented people—were completely unprepared to recognise or handle what was happening.
“Daddy’s here. You’re safe.”
While the head of school tried to explain how “bad” his behaviour was, I ignored her, walked straight to my son, and held him close. His heart was pounding furiously. He was cold, sweating, and shaking in a state of shock. He couldn’t focus his eyes and kept repeating that he wasn’t safe.
As I held him in my arms, I just kept whispering – “Daddy’s here. You’re safe.”
When Dysregulation is Punished as ‘Bad Behaviour:
It turned out he had become dysregulated because his EHCP legal protections were not followed. Instead of being taken to a calm space, he was herded into a cloakroom. Terrified, he lashed out to keep people away, throwing lunch boxes. One inadvertently clipped the head of school.
In the 15 minutes it took me to arrive and calm my son with a hug, the school decided to exclude him for violent behaviour. How can a primary school in England exclude a seven-year-old child with a suspected autism spectrum condition after completely failing to follow his legally binding EHCP? For the next six weeks, we lived in a constant state of warfare:
- Documenting continued failures to follow his EHCP
- Chasing paperwork and documentation the school repeatedly failed to provide
- Fighting illegal exclusions disguised as “calls to collect him early”.
The Battle Beyond the School Gates:
The fight doesn’t stop at the school gates. We reached out to our GP for a formal diagnostic referral, hoping it would bring better understanding. Even getting that appointment was a gut-wrenching argument. We had to fight past endless attempts to deflect us to online links and self-help websites.
Our son is bright, sparky, and has the most wonderful personality. Yet he is being systematically failed.
That is my son. Kind, emotionally intelligent, and deeply caring.
Without two full-time parents spending every spare hour chasing, fighting, and threatening legal action, he would have been denied his education and his access to healthcare.
Reading these words back before clicking ‘publish’, I have tears running down my face.
My youngest boy is the kindest, sweetest soul I have ever known. He is genuinely brilliant, and despite our absolute best efforts, it leaves us feeling like we are failing him. If he were standing here right now, he would be the very first person to wrap his arms around me and ask why I am crying.
That is my son. Kind, emotionally intelligent, and deeply caring. He deserves a world that protects him, not a system he has to fight to exist in.
To the Parents in the Trenches. We See You:
This experience leaves me wondering, how many children are being left behind because their parents don’t have the time, resources, or energy to fight?
We are a middle-income family. We both work full-time. But after tax and mortgage payments, private education or private healthcare are completely out of our reach. We rely on the state, and the state is failing.
Is it too much to ask for:
- A GP appointment without a battle?
- A school to follow a legal EHCP document?
- Educators to see the difference between bad behaviour and a child in medical distress?
Our Local Authority has the highest ratio of home-educated children in the country, and for the first time, I completely understand why. It feels like our NHS is broken and our education system is no longer fit for purpose.
If you are fighting this same battle today, please know this: it is not you, it is the system. Keep fighting, keep documenting, and don’t let them make you feel like you are unreasonable for demanding your child’s basic rights.
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