She was five.
I got her up at six, because that was how long it took. The clothes itched. The socks felt wrong. Difficult became distressed and distressed became hours of screaming and sobbing and begging not to go, and some mornings I was practically carrying her out of the door.
Then we'd pull up outside school and the smile went on. She'd skip through the door. Hello, good morning.
Once — only once — she ran back out after me. Nobody saw her run. I was on the right side of the road, thank God, and she got to me and collapsed in a heap and cried. Then the teacher came out, and the smile went back on, and all that was left of it was a small hand holding onto mine very tightly.
I told them. I told them why we were late every day. I told them that we flexi schooled, and that the four days at home weren't education any more, they were recovery — that we did nothing and went nowhere because she was too tired and too upset. They told me I was anxious. She was fine in school.
Occasionally they saw a crack. A full meltdown over a shoe that came undone, shocking enough to unsettle them, because it wasn't the child they knew. And then they reassured me. Normal. She's fine.
I watched an adventurous, fearless little girl disappear into a pit of anxiety, and I knew that at five years old this could not possibly be right. But the more I said it, the more the attention moved off her and onto me.
By the time we withdrew her, she was a shell of the child I'd had before. And I do this for a living — and I was still left wondering what I was doing wrong.
Two jobs, and you only ever had one of them
Nobody saw her run out of that door except me. That is the whole thing, really.
There is something that happens to parents in this system that I don't think has ever been properly named. Noticing and acting are two different jobs. In most of life they belong to the same person: you see the pan boiling over, you move it. But if your child is disabled, or ill, or unable to be in school, those two jobs get split apart. You do the noticing. Someone else does the acting. And you have no control over whether the second one ever happens.
I've spent over twenty years working with children and families, including as a trauma therapist. But becoming a parent taught me what it means to live this split rather than witness it professionally. What I want to describe is not how frustrating it is. Everyone reading this already knows that. What I want to describe is what it does to a person to hold one half of a job for years, and what the current proposals would do to that.
What a legal right actually is
We talk about legal rights in this system as though they were paperwork. They aren't. Psychologically, a legal right is a lever. It is not a promise that anyone will listen to you. It is the route by which your noticing can eventually, if you push hard enough and long enough, turn into somebody acting.
That's what an enforceable EHCP has been. Not a guarantee — you all know how badly it works in practice — but a mechanism. Something at the end of the corridor.
The wider SEND reform proposals, together with the EOTAS proposals still out for consultation, take the lever away and leave the noticing exactly where it was.
SNJ has set out the twenty rights at risk in detail, so I won't repeat the work. The short version is that provision moves out of a legally enforceable plan and into an Individual Support Plan with no route of appeal; the local authority picks the package and the school decides what to deliver, and can change it later, with no independent route of appeal against what it offers or later withdraws; and for families needing education outside school, the rights to appeal a refusal, a change or a removal all go.
One of them matters more than the others for what I want to describe. Reviews for school-aged children would happen at the end of a key stage rather than annually. Think about what that means for a person whose entire role is early detection. You watch your child start to struggle. You watch the struggle turn into distress. You are almost certainly right about what you're seeing, because you usually are. You can ask for an early review. What you would no longer have is any guaranteed point at which the authority must sit down and reconsider. Until the calendar says so.
Responsibility without authority, written down
Here is where it becomes something other than a bad policy.
If the named setting decides your child should attend, and your child cannot attend, you may face prosecution. And if your child is at a special school, or falls into one of the other categories covered by the Children's Wellbeing and Schools Act, you would need the local authority's consent before withdrawing them to educate them yourself.
Read that again slowly. You would carry the full legal responsibility for an outcome. You would hold no authority over a single decision that produced it.
That is not an unfortunate side effect. That is the structure of the thing.
What it does to a person
I named this pattern in my clinical work because I kept seeing it and there was no language for it. Parents in this position develop what I'd call sentinel vigilance. It isn't anxiety in the ordinary sense, though anxiety runs through it. It's closer to what a night watchman does: sustained, purposeful attention to the specific signs that something is changing. Most parents in this system get very good at it. Frighteningly good.
The problem is not the watching. The problem is that the watch never ends, because the loop never closes.
A threat response mobilises us towards action and, once the danger has passed, allows us to stand down. That's the shape of recovery. What happens to parent carers is that the middle step is taken out of their hands. You detect. You report. And then you wait, and nothing resolves, and you cannot stand down — because standing down means nobody is watching your child at all.
Over years, that changes people. Not because any single episode was unbearable, but because there was never a stand-down between them. No handover. No period of genuine rest in which the watch belonged to someone else. What arrives eventually can look like collapse, and it can arrive late, often after the acute pressure has finally eased. People describe it as falling apart for no reason. There is a reason. The reason is that it was the first time they were allowed to.
Widening the gap between noticing and acting, for thousands of families at once, will produce more of this. That cost appears in no impact assessment I'm aware of.
And then you'll be told you're anxious
There's a second turn, and it's the cruellest part.
A parent who keeps noticing, keeps reporting, and keeps getting nowhere does not go quiet. They escalate. They document. They write the emails and bring the notes and ask the same question again. That is exactly what the situation demands, and it is exactly what gets recorded as anxious, difficult, over-involved — or worse.
You will already know how much worse. This site has covered where that road can lead.
What I'd want any professional reading this to understand is that vigilance in a dangerous situation isn't a symptom. It's an accurate response. The question that almost never gets asked, when a parent is described as excessively worried, is: excessive compared to what? Too often the actual risk disappears from view, and only the parent is assessed.
The door I was able to walk through
We withdrew her. That was the thing that stopped it. Not a plan, not a review, not anyone finally agreeing with me — just the fact that I could take her out.
She would be starting secondary school around now. She's thriving. But I want to be careful with that word, because it wasn't a rescue and it wasn't quick. It took years to find some of the child who got lost in that pit, and there are parts of her I'm not sure came back. What withdrawing her did was stop the harm. Everything after that was slow work.
Which is rather the point. If acting when I did still cost us years, I can't see how a child left in it for longer — waiting for a review, waiting for permission, waiting on a decision from people who only ever saw the smile at the door — comes back at all.
Our school was supportive when we withdrew her. It was small and kind and they backed the decision. And even there she struggled, and even there they couldn't see what I could see. That's the part worth sitting with. Not that people are unwilling, but that they are not placed to know. I could see it because I was the one at six in the morning, and the one she collapsed into on the pavement.
Under these proposals that decision might not have been mine.
She was at a mainstream school then. She was diagnosed soon afterwards as autistic with a PDA profile, ADHD and learning difficulties, and her needs were severe enough that she could not sustain even one day in school without four days of recovery. Under the proposed system she is precisely the kind of child who could have been placed on a specialist pathway, with a setting chosen by the local authority. The named setting would then have controlled whether any of her education could happen away from school, and how much. There would have been no appeal against what it decided, or against a later decision to change or end it. And had that setting been a special school, withdrawing her would have depended on local-authority consent — a process the new Act strengthens by allowing the authority to refuse if it decides that remaining in school is in her best interests.
I would have been asking permission of the same system that had spent two years telling me she was fine.
Distress that shows up as lateness, reluctance or behaviour is easily read as an attendance problem, because the system asks schools to view it through an education and attendance frame. That isn't a criticism of teachers. Recognising how distress can present differently across settings is part of what I have spent years training to do, and I wouldn't expect every teacher to carry that specialist lens. But it means the decision would still sit inside a system structured around one particular answer: keeping children in school. Reintegration is written into the consultation as an aim, while the cost of getting that decision wrong is paid entirely by the child and family.
Barring a very small number of exceptions, parents are the people most invested in their child and the ones who see most clearly what that child needs. Handing that decision to a setting which sees the version of the child they are able to show within that setting is not a safeguard. It removes the most reliable early warning the system has.
I go back over the proposals and get to the same place every time, and feel it in the pit of my stomach. I would have had to wait, and keep watching, while that distress tore her apart. Many families don't have even the goodwill that we had.
For some families the wait wouldn't be about distress. It would be about a child who is not safe. Having to wait on someone else's decision, in that situation, does not bear thinking about.
Someone must notice
The whole system, whatever it is called and however it is reformed, rests on a quiet assumption: that someone will notice when a child is in trouble.
That someone has always been you. The proposals don't change that. They leave the noticing exactly where it has always been, and take away what little ability you had to make it count for anything.
What I can tell you is what it costs to be the person who notices and cannot act, because I've sat with people carrying it, and I carried it myself. Individual coping strategies cannot close a loop that the system keeps open. Almost nobody recovers from this on their own. Recovery isn't learning to worry less. It's not being the only one on watch.
The EOTAS consultation closes on 18 September. If you have been meaning to respond and haven't yet, this is what you would be responding about.
