During Covid, I was frightened of another breathing admission.

Not frightened in the ordinary way. We had lived with breathing admissions for years. We knew the ward, the route, that particular fear. We walked a line between two risks: the nebulisers put her heart at risk, but stop them and her breathing crashed.

What frightened me then was different.

It was knowing how easily, if she crashed, my daughter could be seen first as a category.

My beautiful, vibrant, so very, very alive daughter, who sometimes struggles to breathe.

If her lungs failed. If her breathing stopped. That one moment could define whether she had the chance to live the rest of her life.

A DNACPR—do not attempt cardiopulmonary resuscitation—is a decision recorded in someone’s notes that, if their heart or breathing stops, cardiopulmonary resuscitation will not be attempted. It does not, by itself, mean that any other treatment should be withheld. It is about one particular intervention in one particular moment: the moment of arrest, and whether anyone will attempt CPR.

Properly made, it is a clinical judgment about whether CPR could work and whether it would benefit the individual person. It is not meant to be a judgment on the worth of their life.

But when that decision is made without the person or those closest to them being heard, the distinction can become frighteningly thin.

Because who gets to decide whether the attempt is worthwhile?

And if the patient is a child, how could the parents who know that child more deeply than anyone else not be at the centre of the conversation?

That does not mean a patient or parent has a veto. Clinicians do not have to provide CPR if they judge that it will not work. But “you do not have the final say” is not the same as “you do not have the right to be heard.”

The courts have been clear about that.

In Tracey in 2014, the Court of Appeal held that there is a presumption that a patient with capacity should be consulted before a DNACPR notice is placed in their records. A doctor may decide not to discuss it if they believe the conversation is likely to cause the patient physical or psychological harm—not simply distress, but harm.

In Winspear in 2015, the High Court applied the principle where the patient could not decide for himself. Where it is practicable and appropriate, the duty is to consult those close to the patient before the decision is recorded, not afterwards.

Current guidance is equally clear: DNACPR decisions must be made individually. They must be free from discrimination. They must not be based on a professional’s subjective view of another person’s quality of life.

And there it is.

Who gets to say which life is worth the attempt to save?

The reason the Winspear judgment exists is that a doctor placed a DNACPR notice on Carl Winspear’s record during the night without speaking to his mother, Elaine, who had cared for him throughout his life. The note said that the family should be spoken to in the morning.

When his mother was told, she disagreed. The notice was cancelled. Carl died that evening.

The court did not say that his mother had a veto. It said she was entitled to be consulted before the decision was placed on his record. Speaking to her after it had already been made did not fulfil that duty.

When I read that, my first thought was: how would I have known?

How would any of us know?

You are sitting at a bedside. It has gone from stable to not stable, so fast. Questions arrive in the middle of alarms, observations, medication and fear. How does a mother take in what a DNACPR means in those moments?

Would I have agreed because I was frightened of causing my daughter more pain?

Would I have had the strength to challenge it?

And would my challenge have been read as emotion—as a mother unable to accept what was happening—and therefore given less weight?

I said that what frightened me was my daughter being seen first as a category. I want to be clear that this was not only a feeling, there is evidence to back it up.

On 20 March 2020, NICE published its rapid guideline on critical care in adults. As originally written, it said that on admission to hospital every adult should be assessed against a nine-point Clinical Frailty Scale, and it drew a clear line between those who scored below five and those who scored five or more. It did not explain what frailty was. The British Geriatrics Society describes frailty as a concept linked to ageing, and says it should be distinguished from disability.

Most people with a learning disability would score five or more on that scale. Disabled people are far more likely to score seven than non-disabled people. The scale measures whether you need help with everyday tasks. It does not measure whether you are dying.

Five days later, on 25 March, after a threatened judicial review and public pressure from disability organisations, NICE amended the guideline. The Clinical Frailty Scale was not to be used for younger people, for people with stable long-term disabilities such as cerebral palsy, or for people with a learning disability or autism. An individualised assessment was to be used instead.

Five days. At the start of a national emergency, when everything was moving quickly and clinicians were reaching for whatever guidance existed. Desperate to find a way to choose between patients, when they didn’t have enough resources to save them all….

The mother who brought that legal challenge said afterwards that while she welcomed the amendment, she remained deeply concerned that the guidance had been issued at all without any consideration of what it would obviously mean for disabled people.

She had no authority over what was published. She had knowledge of what it would do. She had to threaten litigation to be heard—and it was corrected in five days, which tells you how visible the problem was to anyone who looked at it.

During the pandemic, the Department of Health and Social Care asked the Care Quality Commission to examine how these decisions were being made. Its review, published in March 2021, heard about the experiences of more than 750 people.

It found people who had not been properly involved. It heard from people who did not know that a decision about their care had been recorded at all. It also heard evidence of decisions being applied to groups rather than individuals. Blanket decisions of that kind may be discriminatory and unlawful under the Equality Act 2010. Older people and people with a learning disability were among those particularly affected.

But this did not begin with Covid.

In 2016, the Royal College of Physicians published a national audit of end-of-life care in English hospitals. It reviewed the case notes of 9,302 adults who died in participating acute hospitals.

A DNACPR was recorded in 94% of those notes at the time of death. Once sudden deaths were excluded, a senior doctor’s discussion about CPR with the patient was documented in 36% of cases. In 16% of the relevant cases, there was no recorded reason why a discussion had not taken place. A discussion with the person nominated as important to the patient was documented in 81% of cases.

That means that in roughly one in five cases, there was no documented discussion with the person closest to them.

The audit can only tell us what was written down. A conversation may have happened without being recorded, and this was an audit of adults who died in hospital, not children or every patient admitted in crisis. That matters. But so does what it found: documented involvement was far from universal, years before the pandemic began.

So the answer to my question—how would I have known?—is that some people did not.

Not knowing was not necessarily a failure of their vigilance. Sometimes, they were simply not told.

There is another problem beneath that one. We place enormous faith in the record, but a signature saying that something happened is not proof that it happened.

In April 2020, Eliot Harris died at Northgate Hospital in Great Yarmouth. The Trust accepted that there was a culture at the hospital of retrospective recording: observations carried out but not recorded at the time, observations carried out by one person and signed by another, and observations that nobody completed at all but which were signed as completed. It acknowledged that this was encouraged and expected by ward managers, and that recording was sometimes done days later. The inquest jury recorded this, while also finding that it did not cause or more than minimally contribute to Eliot’s death. That matters. The records were false either way.

More than two years after Eliot died, the senior coroner wrote a Prevention of Future Deaths report stating that quality audits carried out since his death showed observations were still not being carried out and recorded in line with the Trust’s own most recent policy.

In October that year, Rowan Thompson died at Prestwich Hospital. An inquest jury found that five of the eight staff on the ward had falsified observation records. On one morning, 24 observations were signed off; nine had been carried out. The senior coroner directed the jury that there was no evidence that this caused or contributed to Rowan’s death. That qualification matters. The signatures were there all the same.

Neither case was about resuscitation. I am not saying that CPR conversations were falsified. I am saying that a signature is not sacred simply because it is in a medical record. A record can say that a thing happened when it did not. It must not be allowed to end the conversation when the people who were there say something different.

The same 2016 audit found that only 4% of patients had a documented advance care plan made before they came into hospital. For most, these questions were arising inside the hospital, under pressure, when time and capacity to take anything in were already disappearing.

I can see how easily, in the moments we lived through, a decision could have been made in the background and, on the turn of a dime, my daughter might not be here.

I want to be precise about what that means. Not that all treatment would have stopped. Not that nobody would have cared for her. But if her heart or breathing had stopped while a DNACPR was in place, nobody would have attempted CPR.

I would have been told to sit with her and say goodbye.

And all that has been her wonderful life between then and now—none of it would have existed. All she has been, all she has done and the all the light she has brought to this world.

That is what lands in my body. As you are fighting for your child’s life, you discover that someone else has already decided what will happen if their heart or breathing stops. It would take those last moments from you and fill them with a helplessness almost impossible to describe: being unable to act while your child’s life ended, your brain trying to understand what is happening while you are still trying to be there for them.

I have come to call the nervous-system imprint this kind of responsibility leaves behind Post-Responsibility Trauma—PRT.

You are responsible for keeping someone alive. The authority to act sits elsewhere.

You are expected to notice every change. To remember every medication. To hear the difference in their breathing from another room. You are expected to stay calm enough to be taken seriously while the person you love is slipping away.

And if you fight too hard, would that fight be read as emotion? As a mother not coping? Would the very response created by the danger be used as the reason not to listen to you?

In my work, I have sat with people for years afterwards, still holding questions no one will answer.

What was decided? When? By whom? Were they told? Would the person they loved have died in the same way before Covid? If they had known, could they have changed what happened?

They may never know. That uncertainty is part of what they carry.

This did not end when the pandemic ended. It is still being carried.

After the CQC report, a Ministerial Oversight Group was established to oversee the promised changes. The Parliamentary and Health Service Ombudsman has since pointed to an accountability gap: the group has not met since May 2022, and the organisations responsible for implementing the recommendations are no longer reporting their progress through it.

The oversight group has not met since 2022.

That should trouble all of us.

The final LeDeR national report, published in July 2026, found that the proportion of reviewed deaths of adults with a learning disability where a DNACPR had been recorded rose significantly between 2021 and 2024, from 72.2% to 77.4%. The report found the orders had been completed correctly in around two-thirds of cases. It also found that people with severe or profound learning disabilities, and people with Down syndrome, were more likely to have one recorded than others: 83.6% of people with Down syndrome, against 71.7% of other people with a learning disability.

The report’s chief investigator said it was difficult to say whether the increase was appropriate. Discussing resuscitation is good practice where someone has a life-limiting condition and may die soon. But, as the pandemic showed, it can also be applied to younger people with significant disabilities who have no terminal condition at all.

A rise on its own tells us nothing. A rise that falls most heavily on the people most likely to be judged by their disability rather than their prognosis, alongside an accountability gap and a documented history of poor consultation, is a reason for scrutiny rather than reassurance.

It is awful regardless of whose child, parent, partner, sibling or friend it is. And it lands differently—more viscerally—when it is your own. I know that about myself, and I am not going to pretend otherwise. That the true horror of this lands fully when its your child, your loved on that this might happen to.

So here is where it lands for me.

The record is treated as the fact. The people who were actually in the room are treated as the interpretation.

Yet the people in the room are often the ones who know.

The mother who has listened to this child breathe for eighteen years and can hear the difference from another room. The father who remembers which medication made things worse last time. The sister who knows what that particular sound means. The person themselves, communicating pain or fear in a way that may not look familiar to someone who met them that morning.

Families hold years of knowledge about a person. Too often, that knowledge is renamed anxiety. It is called being too close to be objective. It is weighed against a set of notes written by someone who arrived at the start of the shift.

Why don’t we listen to parents?

Why?

Why?

Why?

Why do we ask parents to notice every change, every medication, every breath—and then call them emotional when they tell us something is wrong?

Why is the person who knows this child best so often the first person whose knowledge is explained away?

Why does authority count for more than knowledge, even when the person with the authority only arrived that morning?

A family may not have a veto. I understand that. But consultation after the decision is not consultation. Being informed is not being heard. A name in a box is not the same as a conversation.

The people who know are too often the people we listen to least.

Because sometimes there is one moment on which the whole rest of a life turns.

No parent should discover, after that moment has passed, that the decision had already been made in a conversation they were never invited into.

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Post-Responsibility Trauma (PRT) is a concept I have developed to describe the nervous-system adaptation that follows sustained responsibility without the authority to act. It is offered as a proposed framework, not a diagnosis. © Lindsay Reynolds Dobson 2026.

Principal sources

R (Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 822 — Court of Appeal judgment

Winspear v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB) — case summary

NICE: COVID-19 rapid guideline—critical care in adults (NG159), March 2020, and the amendment of 25 March 2020

CQC: Protect, respect, connect—decisions about living and dying well during COVID-19

CQC guidance on DNACPR decisions

Royal College of Physicians: End of Life Care Audit—Dying in Hospital, 2016

Parliamentary and Health Service Ombudsman: End of life care—improving DNACPR conversations for everyone

Judiciary: Eliot Harris prevention-of-future-deaths report (2022-0260)

INQUEST: Rowan Thompson inquest findings

King’s College London: Learning from Lives and Deaths (LeDeR), 2024 report, published July 2026

Oliver McGowan was 18. He lived with cerebral palsy, epilepsy, autism and a learning disability. He died in November 2016 from a hypoxic brain injury after being given the antipsychotic olanzapine at Southmead Hospital in Bristol.

Oliver had reacted badly to antipsychotic medication before. His parents repeatedly said that he must not be given it. They said it in advance. This was not something they claimed afterwards, when they were trying to understand what had happened.

Oliver was saying it too.

Oliver did not have a diagnosis of psychosis or any mental illness. He had been taken to hospital because he was having seizures—not for treatment of a mental illness.

And still, he was given olanzapine.

And still, he was given olanzapine.

The first inquest concluded that the care leading to his death was “appropriate.” A later independent review found that his death was “potentially avoidable.”

When I read that information, I cry.

I cry for that family. For that mother who watched and fought, and still the worst possible outcome happened. Her son, her unique, beautiful and very loved son, died and she couldn’t stop it.

I cry because I recognise that.

I cry because I fear that.

Every time we are admitted to hospital and one of my children is misunderstood, or I am read as difficult, I fear that. I read Oliver’s story and remember each time my own child looked at me, in pain and fear, and quietly asked if she was going to die and begged me not to let her.

And I feel angry.

So, so angry.

His family told them he could not have that medication, and still he got it.

My body remembers every damn time I have told a medical professional something important and it was not listened to. Every time that has nearly ended very, very badly for my child.

And that anger is because I know it is real.

Because I suspect that for every case that makes the news, there are many we never know about.

Angry because I am scared.

Scared that if we stop watching and alerting, something will happen. Scared because even when we do watch, even when we do speak, sometimes it is still not enough.

I can imagine how incredibly hard that time in hospital must have been for Oliver’s family. The fighting. The watching. Not knowing whether they were pushing too much or not enough. Knowing something was wrong but being unable to make the people with the authority act on what they knew.

Potentially avoidable!!!!

I want to scream: why don’t we listen to parents? Why, why, why?

And I can only imagine how those words feel for his family. To hold all of that after holding the watch for so long. To have spoken before it happened, and then to see what happened softened and defended afterwards. To have to use a Freedom of Information request to obtain drafts of the review into their own son’s death. To still be waiting while actions remained incomplete.

I cry for them. I cry for me and my children. I cry for all the others who hold this watch without always having the power to act on what they know, or to save the children they love.

I also have a profound respect for Oliver’s mother, Paula McGowan, and what she has done with that watch.

She has taken the worst possible experience and used it to try to protect other families. To try to make sure this does not happen to someone else. Training now carries Oliver’s name and is legally required for staff working in CQC-registered services.

And she keeps going, despite the appalling truth that it does still happen.

The most recent LeDeR figures found that 39% of the deaths of adults with a learning disability reviewed in 2024 were avoidable. That is down from 46.3% in 2021. It is still nearly double the rate in the general population. It still means more than a thousand people in a single year. Imagine if one of those was your loved one?

Even when the system knows this happens, even when it knows the risks, even when there is so much evidence showing the consequences of not listening, it still does not reliably listen or learn.

The wider evidence for this pattern belongs in the book. Here, I only need to say that Oliver’s story is not the only one. There are far far too many more.

And until the system truly learns, our watch is harder than it needs to be. Because we are watching not only our child or loved one, but the systems meant to protect them. The places where we should be able to hand over the watch without fearing that harm may come from the very people to whom we have entrusted it.

In July 2026, the report examining deaths during 2024 was published with the announcement that it would be the last national LeDeR report of its kind. The work is to be absorbed into a new dataset that is not yet in place.

The system that counted these deaths has stopped counting.

The families have not been allowed to stop watching.

Post-Responsibility Trauma (PRT) and Sentinel Adaptation are concepts developed by Lindsay Reynolds as part of an emerging clinical framework exploring the effects of sustained responsibility without corresponding authority, relief or recognition. They are proposed concepts rather than diagnoses

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My child is distressed and angry. She’s lashing out, and I’m staying composed — calm, responsive, helping her find her way back. The doctor compliments me on the work it has taken to get her here: through the door, into the appointment, engaged enough to take part and regulated enough to stay.

It’s a moment in time, but it’s a fair reflection of most of our moments. Not all of them. I’m far from perfect. But most of the time — enough of the time, I hope — I choose calm over anger. And when I don’t, I model an apology. I name what happened and what I need to help me regulate.

But I won’t lie. It isn’t easy, and there is always a cost.

So I smile and say thank you. I let myself take the compliment. But inside, I can’t help wondering: would you feel the same if you could see our living room? If you saw the clutter, the chaos, the dishes still in the sink because I didn’t have time to do them and get her here?

Because I had to choose.

I could spend those hours offering the calm attention it takes to help her get ready, or I could rush around tidying the house before we went out of the door. I could make a packed lunch, or I could use that energy to regulate myself and my child.

I couldn’t do it all.

The ledger

For me, cleaning uses a lot of brain. Far more than it seems it should. There have been times when I could not keep the house clean and still have enough left to be the calm, regulated parent my children needed.

I couldn’t deprioritise work, because we need money to live. And my work is not something I can take half of myself to. It is all of me or nothing. Feeding, cleaning and simply living took what was left. Every bit spent somewhere was a bit I could not spend on regulation.

I have more choice now because I can pay for a cleaner once a week. It helps. But when I couldn’t, there was less in the pot, and you would have met a far less regulated version of me.

Oddly, I think that version of me would have been judged more kindly than the regulated mother with the messy house.

That is the ledger nobody sees. When I prioritise one thing, something else drops away — and everything I have to choose between is expensive. The bottom line is that I cannot do it all. None of us can.

Measuring a category

Ironically, DIY costs me less than cleaning. But because I am a woman, it is the cleaning I am judged on.

Well, perhaps the parenting too. But even then, the measure can feel less like Are these children loved, understood and helped to feel safe? and more like Are they clean, presentable and alive? And somehow the state of the house still gets folded into the answer.

You don’t walk around my home and judge my parenting by whether I can fix the mirror or hang a shelf. If I can’t plumb in the washing machine, you assume I need a plumber. You don’t take it as evidence that I am a bad human being, or a bad mother.

So when you look at my house, you are not measuring how hard I work. You are measuring one category. Just one of many.

And so does the help

We can have Home-Start come and take the children out, hold the baby, or provide a support worker to see to the children while we clean. But we cannot usually have a cleaner. Or an administrator.

For me, and for many people whose brains work like mine, that is the wrong way round.

Cleaning may be where my brain is weakest and has to work hardest. It may also be where I am least valuable to my family. I am a good parent and a lousy cleaner. My children need more of me, not less of me.

But that is not the help we are offered. If I want a cleaner, I work extra to pay for one. If I want more time with the children, I sleep less. Nobody takes anything away, so I keep holding all of it.

And if I accepted the childcare offer, I might still not have a clean house. Taking the children so I can clean assumes cleaning is something I can easily do once time is made available. It is a little like saying, “If I take the children, you can paint the next Picasso and earn some money.” Unless painting is my thing, the free hours do not make me able to do it.

We presume everyone can work out how to clean and tidy efficiently. But some brains cannot, or can only do it at enormous cost. I might get a fraction done in the time available and finish dysregulated, stressed and exhausted.

The children may also have spent that time with somebody who does not know their rhythms as I do, or whose nervous system does not feel as safe to theirs. They return dysregulated, and now I am trying to settle all of us. We sleep less, because dysregulated children and dysregulated adults sleep less well. And when the children sleep less, Mum certainly sleeps less too.

That help has a cost as well.

Two different jobs. Actually, three.

I don’t judge a bus driver by how well he can fix the engine. We understand that driving the bus and maintaining it are two different jobs, even though both help the bus to run.

Cleaning and mothering — if we understand mothering as the parts that cannot simply be substituted: connection, regulation, love and care — are not the same job at all. Yet we do not only conflate them; we judge one through the other.

My children do not want another mother. I cannot be replaced. My cleaning can.

This is not about who deserves relief, or whether the mother who needs a break is somehow less capable than the one who can keep pushing through. There is no single right kind of support.

For some families, having somebody else clean has almost no cost to anyone’s regulation. The children get more time with Mum, which may be particularly precious when she is already working and has less time with them. In another family, cleaning may itself feel regulating, or may offer Mum a break, while the children are happy with somebody else and even enjoy that time.

Not one right way. Just different people, different families and different costs.

Then there is a third job, which I sometimes forget is a job because I can do it: the planning and organising of all the who, what, where and whens. For some brains, that is also expensive, stressful, out of reach or even impossible.

It costs me, but I can do it. It is a completely different skill set — no more or less valuable than cleaning — although perhaps harder to replace because it requires specialist knowledge of my family.

Twenty pounds can buy me some executive-functioning help. It would not buy enough cleaning to make a dent.

The part nobody can take

My child loves art class, swimming, gymnastics and meeting friends at the park. But when a hospital appointment lands in the middle of the week, I need to work out whether they can manage all of that too. Which activities will regulate them, and which will stack up until everything becomes too much?

If art comes before the appointment, will there be enough left in the tank to get through it? Would art be better afterwards, when it might help them settle? Does gymnastics need to wait? Will seeing friends be too much, or exactly the balm they need?

A lot depends on how the appointment goes. Did they engage well but force themselves through something frightening, such as a blood test, using every available resource in the process? Did they scream and shout and need space to run it off afterwards? Or do they need to go home, curl up somewhere safe and watch a film?

Nobody else can make those calculations from a rota or a care plan. They are built from thousands of small observations: knowing this child, on this day, with this particular accumulation of demands. It may look like nothing. It may look like cancelling an activity, leaving a room untidy, buying lunch instead of packing it, or saying no to something they usually enjoy.

But this is part of the work too.

Back in the consulting room

Chaotic probably does sum up our home. It is sometimes messy, almost always cluttered and perhaps incomprehensible to anybody who does not live there, with its swings, beanbags and sensory toys. It is often mid-clean, so even the chaos is a moveable feast.

And here is the strange thing about the doctor’s compliment: she is already holding direct evidence of the thing she is there to assess.

My child’s health has improved. My regulation is right in front of her, in the middle of a difficult moment. She has seen the work it took to get my child through the door, into the appointment and able to engage. The state of my floors tells her nothing about any of that.

And yet I cannot quite believe that, if she saw them, they would simply sit alongside what she had already witnessed. I fear the mess would reach backwards and cast doubt on it. Perhaps the progress is not what she thought. Perhaps she has missed something. Perhaps the calm, connected parenting in front of her is less trustworthy because the dishes are still in the sink.

We do this to mothers all the time. We take one category — often the one that can most easily be replaced — and use it to judge all the work that cannot.

We don’t see the ledger. We don’t see what she chose, what it cost, what she protected, or what had to drop away so that something more important could be held.

And still, we judge her most by how clean her house is

Still My Words

I’m writing this in response to the scanning of my work for AI. I don’t mind being scanned — I do use AI to help me write — but to see the percentages… well, it feels a bit blunt, judgemental and not quite accurate.

I enjoy writing, and have for many years now. You can find writing of mine going right back to research I had published in 2010. I think it was 2010, anyway. I honestly cannot be bothered to go and check the exact date.

But I’m also dyslexic and neurodivergent, so AI is hugely helpful in making my work easier to read, in some ways. Not better or worse. Just different.

So, has a machine touched my words?

Yes.

Are they still my words?

Also yes.

To demonstrate that, here is my last post as it appeared after being tidied up with AI, followed by the same post in its raw form.

Different.

And, in a strange way, it reminds me a little of PRT — of how, after years of dealing with medical professionals, I learned to tidy up my own raw voice.

I spent years being the professional in the room. I was listened to. My voice, my observations and my judgement were given weight — and I was paid for them.

But then I became a mother. A tired, worried, unsure-of-herself mother, and my voice in those contexts changed. Of course it did.

But instead of carrying more weight — because I was living this day in and day out, because I knew the child in front of them, and because I held that child’s interests front and centre, above my own — it carried less.

It was read as too emotional. Too raw. Too invested and biased. Not to be trusted.

So I learned to polish it. To use different words and phrases, pace myself differently, breathe, and let go of the emotion — because then my words carried more weight again.

Is that fair?

No.

Is it right?

Also no.

I want every parent reading this to know that I do not think it is acceptable that I can invoke my professional credentials, turn on that more polished side of myself and suddenly be taken more seriously. As though that makes sense.

But I will use the access it gives me. I will use it to tell the story and to show that the same person, using a different voice, is listened to differently — while remaining the same person, with the same observations and the same understanding.

And hopefully, by showing that, I can be part of changing it.

In a way, that is also what AI does. It makes my voice slightly more palatable, perhaps.

But to flag something as AI simply because it is fluent or clear — because its patterns happen to fit a machine’s statistical idea of what AI writing looks like — does not seem fair either.

Access to editors, education and writing classes has always helped determine which voices make it through the gate. And the voices kept out are often those already suppressed: those without the expected skills, or without the money and access needed to make their words acceptable.

So perhaps AI helps to level the playing field a little for those voices.

And perhaps that is a good thing.

If you are disabled or neurodivergent, and AI helps you get your voice heard, I do not think you should be shamed into putting it down.

Should we use AI to reproduce other people’s writing or art and pass it off as our own, or to pretend we understand things we do not?

No, no, no.

But can we use an advance that helps more diverse voices to be heard, including voices from communities that have historically struggled to make it through those gates?

Hell, yes.

And I have used it here, in this very piece.

AI became the doorway.

And as I reflect on that, perhaps that is why I reacted so strongly. Not because I particularly care how a machine rates my work, but because the rating reflects something we already do to certain voices.

We find ways to dismiss them or diminish them, instead of holding them up and helping their message to be shared clearly.

The doorway may have changed.

The words are still mine.

Who Relieves the Watch?

PRT Part Four: Why handing over the watch is, for so many, almost impossible

She’s exhausted and everyone can see it, and for another night she needs to stay awake and supervise the child that does not sleep. Friends offer to come over and help, but when they do, during the day, and she tries to nap, she can’t, she can hear the other child asking for her, the crash of a game being thrown to the floor, and the voice of the adult trying to calm them down. The march of angry steps up the stairs, and the adult — no, leave your mum alone, she’s having a sleep — the argument that follows… it’s easier and more restful to just get up and deal with it. But then it’s her own fault, she should be resting, I came to help you do that! But the thing is, the help is sporadic, nobody wants to sign up for this regularly, or they are too far away, or the time of day does not fit with the child’s schedule, and she’s not good at sleeping during the day anyway…

They visit the hospital and she tells them the signs she is seeing, the listless way he is moving, the small amount of food he has managed and the noise he makes that indicates pain or distress, the doctor listens and they admit him to the ward… she can rest now, right? Except she can’t, time and time again they miss the signs that only she can read, they ignore her, she has to fight and fight and more than once only because she pushed his life was saved. So she knows if she rests, and stops the watch, nobody is taking over, and the signs that danger is approaching will be missed, and that has come so, so close to being irreversible so many times now, she can’t hand over. And in fact she now has to watch for the blame, the accusations of her causing the harm somehow that come from defensive practitioners trying to make it not their fault, that now the services that should hold her, scare her and make the watch doubly hard.

What relieving the watch actually requires

We can only relieve the watch when someone honestly, and completely, takes over. When someone you trust with your child’s life and wellbeing takes over the watch for a while. And my experience has been that for some children and parents, that is almost impossible. Particularly, I suspect, for single parents, or any parent who can’t fully trust the other to hold the watch.

I know many beautiful parents who do have someone — a partner, or a grandparent, or another — who is there regularly enough that the child trusts them, and they have got this just as well as you, the main carer, has. But for many, not because that isn’t possible, for so many reasons, not just down to the other person, but the complexity of the care needed, or the child needing the familiar and only one safe person.

If it’s within services, like a medical or school setting, or social services, or any other type of support that is outsourced, either due to finances or specialism, again it needs to be one we can trust, totally. For many of us, within those systems, that trust has been eroded so badly that not only can we not hand over the watch, they are part of what we are watching, because of historical and present-day damage that has been done.

Where this goes next

And what makes it harder is that we are often not believed. The eyes roll — it’s just our bad experiences, and we now taint them all. Which is what propelled me to find many, many examples that are not mine, are not touched by me, but document this harm. And sadly, there are so, so many.

In the book I’m writing, I look at documented, proven ways this has happened, and continues to happen — and that is where this series goes next.

Post-Responsibility Trauma (PRT), Sentinel Adaptation and the Noticing–Acting Split are concepts developed by Lindsay Reynolds as part of an emerging clinical framework exploring the effects of sustained responsibility without corresponding authority, relief or recognition. They are proposed concepts rather than diagnoses. © Lindsay Reynolds 2026.

She is exhausted, and everyone can see it. And still, for another night, she will need to stay awake and supervise the child who does not sleep.

Friends offer to come over and help, and they do. They come during the day so she can nap. But she can’t. She lies there and she can hear the other child asking for her. The crash of a game thrown to the floor. The voice of the adult trying to calm them. The march of angry steps up the stairs, and then — no, leave your mum alone, she’s having a sleep— and the argument that follows.

It is easier, and more restful, to get up and deal with it herself.

And then the guilt, because she was supposed to be resting. That was the whole point; the friend came over precisely so she could sleep. But the help is sporadic. Nobody wants to sign up for this regularly. Or they are too far away. Or the time of day doesn’t fit the child’s schedule. And she was never any good at sleeping in the daytime anyway.

They visit the hospital, and she tells them what she is seeing — the listless way he is moving, the small amount of food he has managed, the particular noise he makes that means pain, or distress. The doctor listens. They admit him to the ward.

She can rest now. Can’t she?

Except she can’t. Time and time again they miss the signs only she can read. They don’t hear her. She has to fight, and fight again, and more than once it was only because she pushed that his life was saved. So she knows, with total certainty, that if she rests — if she stops the watch — nobody is taking over. The signs that danger is approaching will be missed. And that has come so close, so many times, to being irreversible.

So she can’t hand over.

And now there is something else to watch for. The blame. The accusation, from a defensive practitioner trying to make it not their fault, that somehow she is the one causing the harm. The place that should have relieved her has become one more thing she has to guard against.

What relieving the watch actually requires

This is the part I most need people to understand.

A watch can only be relieved when someone else completely, honestly takes it over. Someone you trust with your child’s life and wellbeing holds it for a while — really holds it — and you are able to put it down, because you know it is being carried.

For some families, that person exists. I know many parents who have someone — a partner, a grandparent, another person who is there often enough that the child trusts them, and who holds the watch as well as the main carer does. When it happens, it is a beautiful thing, and it is real.

But for a great many, it doesn’t. Not because those parents are unwilling to be helped, and often not because of any failing in the person offering. Sometimes it is the sheer complexity of the care. Sometimes the child can only settle for one familiar, safe person, and no substitute will do. And for a single parent, or a parent who cannot fully trust the other to hold it, there may simply be no one to hand it to.

And when the watch has to be handed not to a person but to a system — a hospital, a school, social services, any support that is outsourced, whether through cost or because it needs a specialism no family can hold alone — the same condition applies. It has to be one we can trust. Totally.

For many of us, that trust has been eroded. Not into ordinary caution. Eroded so badly that the handover becomes impossible — because the system we are meant to hand the watch to has become part of what we are watching.

Where this goes next

I know how that sounds from the outside. I know the risk that it reads as one family’s bad experience, curdled into distrust of everyone. That is exactly the response so many of us have learned to expect: the raised eyebrow, the sense that we have simply had a hard time and now taint everyone else with it.

Which is why the next piece is not about my experience at all. It is about documented, evidenced harm — cases that are not mine, not touched by me — and there are, sadly, so many. That is the subject of the book I am writing, and it is where this series goes next.

Post-Responsibility Trauma (PRT), Sentinel Adaptation and the Noticing–Acting Split are concepts developed by Lindsay Reynolds as part of an emerging clinical framework exploring the effects of sustained responsibility without corresponding authority, relief or recognition. They are proposed concepts rather than diagnoses. © Lindsay Reynolds 2026.

The letter says he is stable.

She reads it twice. Stable. Reviewed annually. No further action required at this time. She puts it in the folder, because that is what she does with letters, and then she stands in the kitchen holding the folder and cannot think what to do next.

Her mother rings to say how relieved everyone is. A friend says she must be so glad it’s behind her. Somebody at school says, brightly, that she can finally get her life back.

She agrees with all of them. She is glad. She is enormously, unspeakably glad.

Three weeks later she cannot get up the stairs.

Not because anything has happened. Nothing has happened. That is precisely the shape of it — nothing is happening, and her body has chosen this exact moment to stop working. She is exhausted in a way that sleep does not touch. She cries at things that do not warrant it and stays dry-eyed at things that do. She finds herself listening, at two in the morning, to a house in which everybody is fine.

She had assumed the collapse would come during. It came after.

And because it came after, there is no story to attach it to. During, there was a reason. Now there is only a woman who cannot manage the stairs in a house where the emergency has ended, wondering what is wrong with her.

What I did not say last time

I wrote last time that responsibility does not always leave the nervous system simply because the emergency has ended.

What I did not say is that I know this from the inside.

I have felt that exhaustion in my own body. The kind that arrives after, not during. The kind that makes no sense on paper, because by every reasonable measure things are better now, and better is supposed to feel like relief.

I have stood in rooms that should have been full of joy and felt almost nothing. Not sadness. Flatness. A sort of dulled distance, as though I were watching the good thing happen through glass, waiting for something I could not name.

For a long time I thought that meant something was wrong with me. That I was ungrateful. That having got through it, I was somehow failing at the part that was supposed to be easy.

It took me a long time to understand that I was not failing at recovery. I was still on watch. And the body that came through those years was not the body that went into them.

Not trusting the ok

There is something else, and I think it is the part that is hardest to explain to people who have not lived it.

When the good news comes, everybody else exhales.

I did not.

Not because I disbelieved them. Because I had learned that fine is a description of a moment, not a promise about the next one. I had been told things were fine before, by people doing their best with the information they had, and gone on to find out otherwise. Once you have been right when the room was wrong, reassurance stops being somewhere to rest. It becomes another piece of information to weigh.

So the watching does not stop when the good news arrives. It changes shape.

Part of it starts looking for evidence that this is real. That the improvement holds. That this is not simply the gap before the next thing. Rest, for me, has never meant having nothing to attend to. At best it has meant only one thing needing my attention at a time.

And part of it stays alert for the possibility that they are wrong. Not out of suspicion. Out of history.

Underneath both sits something simpler and harder to say out loud. For many of us, ok is not a state that has been arrived at. It is a condition of this particular afternoon. Things can be fine at lunchtime and not fine by the evening, and somebody has to notice the moment they turn. That job has never been given to anyone else.

Beginnings without endings

For a long time I could describe all of this and still not account for it. I knew what it felt like. I could not say why it worked that way, or why the letter saying stable changed nothing in my body.

Here is the part I have come to think matters most.

An ordinary threat response is a single unbroken movement. Something registers as dangerous. The body mobilises. You act — you run, you shout, you pull the child back from the road. The action answers the noticing, and when it is finished the body has evidence that the thing is over. Not an opinion about it. Evidence, generated by your own hands.

That completion is what allows the nervous system to register the emergency as ended.

Now take the same sequence and remove the middle of it. Something registers. The body mobilises exactly as it should — the alertness, the sharpening, the readiness to move. And then you do not move. You cannot. What you do instead is pick up the phone and describe what you have seen to somebody who has the authority to act, and wait to be believed, and stay calm enough while waiting that you are not mistaken for the problem.

The noticing happened. The mobilising happened. The acting was somebody else’s to do.

This is what I have come to call the Noticing–Acting Split, and I think it is the joint where the whole thing fractures. Sentinel Adaptation is what happens on the noticing side: the watching becomes skilled, specific, accurate. Responsibility without authority is what happens on the acting side: the response has to travel through another person before it becomes anything at all. The split is the gap between the two, and over years it is crossed thousands of times.

What that leaves is a body with an enormous number of beginnings and almost no endings.

It never learned I saw it and I dealt with it. It learned I saw it and then I waited to find out. Even when the outcome was good,

the resolution came from elsewhere, arriving as news rather than as something my own body had done. Relief that comes as information does not discharge the way relief that comes through action does.

So when the letter finally says stable, there is nothing in it for the body to receive. The emergency has ended administratively. It has not ended in the only place that would settle the matter.

This is not a failure of gratitude, or of perspective, or of insight. I had all three and it made no difference. The watch does not end because it was never allowed to finish.

Nobody has ever been talked out of a watch

When I talk about this, the responses tend to arrive in the same shape. Rest more. Be kinder to yourself. Try to let go now. Somebody usually suggests I should stop watching.

I understand why. From outside it looks like the watching is the problem, and if the watching stopped the exhaustion would stop with it.

But nobody has ever been talked out of a watch. You cannot reason a sentinel down from the watchtower by telling her the horizon is empty, particularly when she has learned, through experience, that she may be better at reading that horizon than the person doing the telling. And she is not staying there because she has failed to notice that things are calmer. She is staying because nothing has yet happened that would let her leave.

A watch does not end because the danger recedes. It ends because somebody relieves it.

That is a different question from the one usually asked. Not how do we help her calm down, but what would actually have to be true for her to stand down — and who would need to be holding what, for that to be possible. It is a question about conditions rather than symptoms, which means it is not entirely, or even mostly, hers to answer.

I do not think everything that gets left behind can be undone. Some of what those years put into my body is simply part of how I am built now, and I have stopped treating that as a failure of recovery. But standing down is not all or nothing. Some of the weight can be shared. Some of it can be put down. And knowing which is which turns out to matter enormously.

What that looks like in practice — for clinicians, for services, and for the people around someone who has been holding a watch for years — is what I want to write about next.

Post-Responsibility Trauma (PRT), Sentinel Adaptation and the Noticing–Acting Split are concepts developed by Lindsay Reynolds as part of an emerging clinical framework exploring the effects of sustained responsibility without corresponding authority, relief or recognition. They are proposed concepts rather than diagnoses. © Lindsay Reynolds 2026.

We’re finally healed.

My children are. Parts of them that had disappeared beneath years of medical trauma, shielding, school and instability are coming back. They are growing now, not just recovering.

That is the part I did not expect. For a long time I was watching for recovery — for the old self to surface again. But somewhere this year it stopped being only recovery. The weeks filled up. Aerial gymnastics. Pottery. Canoeing. Friends. A life expanding outward.

They are not just healing. They are running.

And I am so glad. I would not have it any other way.

But I have started to notice something I did not have words for.

It is like a race I carried them through.

For years I carried them. Through the emergencies, the shielding, the losing of our home. I ran the whole course with them on my back because they could not run it themselves.

Now they have rested. They are strong enough to run.

So they do. They run on ahead.

And I am trying so hard to keep up. But I am the one who carried them the whole way here, and every step costs me more now than it used to.

Their nervous systems are learning that the world can hold adventure again.

Mine is still carrying everything it learnt when the world could not be trusted to hold them.

Today we are going to aerial gymnastics.

One of the other mothers will join in. She’ll get up on the silks with them, full of life, and she’ll be good at it.

Old me would have loved that. Old me would have been up there too.

New me sits on the bench.

Not because I won’t. Because my body holds a cost theirs does not, and there is only so much of me to spend. I have to save it for the moments they need me most — the regulating, the planning, the watching. So I ration. I sit out the silks so I can still stand up when it matters.

And this is the part that costs twice. Because I so badly do not want to hold them back. So even as I ration, I push — I keep up when I cannot afford to keep up, I say yes to the thing that will cost me days, because the alternative is being the reason they cannot run. The fear of holding them back makes me spend what I do not have. The cost is physical. The refusing to let it show is its own cost on top.

And my children see it. They see the other mother full of vitality on the mat, and they see their own mother on the bench again.

I miss so much as they move forward. Not because they leave me behind, but because my body holds the cost of getting them here. The cost was always going to land somewhere.

It landed on me.

I would not change that. If it had to be carried, I am glad it was me who carried it. I would do the whole course again.

I still see last week’s class. The strength in their bodies as they climbed. The grace of the shapes they made in the air. The teacher telling me how strong my daughter was.

And I remembered that my body was that strong once. That graceful. That it moved with ease, and I never even knew what I had while I had it.

So of course hers does too. She moves through the world the way I used to, without knowing she is doing it, without knowing it is a thing that can be lost.

And I hope it never breaks like mine did.

That is the whole of it, really. Both at once —

that I would not have it any other way,

that there is a sadness anyone had to pay this cost at all,

and that if a cost had to be paid, let it be mine and not hers. Let her run the whole course and never know what it takes to carry someone through it.

They run on ahead.

I keep walking.

Every step costs more now.

But they are running. They have what I had

.

And for this stretch of the course, that is enough

.

I am sitting in the park, watching a wasp eat the melted remains of my son’s ice cream, and realising that we now have many things to choose from.

Aerial gymnastics. Art. Pottery. Jewellery making. Swimming. Canoeing.

The list is growing.

Yesterday, I watched my children get into a canoe without me. They were nervous, but they did it. They paddled down the river with a group of other home-educated children.

They looked back to wave. One held her friend’s hand tight. The other’s shoulders were a little hunched, unsure but ready to try.

But they did not look back at me uncertain. It was a wave that said I’m going to do this, see you on the other side. Not a wave that said I’m drowning, come and save me.

A year ago, that would have been unthinkable.

We’re finally healed.

Are we ever fully healed? Probably not. But perhaps healed enough that the scars are no longer so visible.

We left flexi-schooling when the children were six, I think, and began home educating. Redundancy meant I finally took the leap into self-employment, which gave me the flexibility to work around them.

I wish I had done it sooner.

Now, at eleven, I can finally see the children they were before beginning to emerge again from beneath the multiple layers of trauma caused by school, Covid, hospitals and homelessness.

Perhaps we would have seen this sooner if there had not been so many layers, one after another.

But two and a half years ago, we finally got a home.

We got space. Stability. A chance to breathe and settle.

School changed my children.

That is not the same as saying it was the school’s fault. It was a beautiful little rural school, with tiny classes and lovely teachers who genuinely cared. But they had to work within a system, and that system is only designed to fit certain types of brains and bodies.

It did not fit theirs.

My confident, fearless, adventure-loving children became anxious and withdrawn. Their differences became much more visible, and they became diagnosable as autistic and ADHD.

But I also want to be honest about the wider picture.

Before school, we had already lived through a year of back-to-back medical emergencies for both children. Then came Covid and a year of shielding. I cannot honestly say that school alone caused what followed.

I suspect school, even flexi-school, was never going to be a perfect fit. But to go from shielding straight into a school environment was never going to be an easy beginning.

For years, leaving the house became incredibly difficult.

Getting dressed could take all day, and by the time we were ready, the place they had wanted to go already felt impossible before we had even stepped outside.

Slowly, that gave way to being able to manage some trips, but not without meltdowns, careful planning and a great deal of support.

Then we lost our home.

A year of instability meant that when we finally found somewhere safe and permanent, nobody wanted to leave it.

The camping trips and adventures we had fought so hard to regain disappeared again. Hibernating at home felt safer.

For a long time, there were only a very small number of trusted places and groups.

Two, to be precise.

Swimming and art.

For more than a year, that was enough. Anything more tipped their nervous systems into overload, and recovery could take days. Sometimes weeks.

And then, this year, something began to return.

Slowly.

The slowness mattered.

Pottery was added. Private lessons with someone they trusted.

Three things now.

Then more days with best friends. A new friend. Trips to the wildlife park.

My adventure-loving children are coming back.

It took an enormous amount of safety and patience to coax that part of them back into the world.

Their nervous systems may be forever changed. We still have to pace. Some days are still too much. Almost everything still requires support and scaffolding.

But they got into that canoe.

While I was writing this, the wasp drowned. I looked away for a moment, and when I looked back, it was floating in what was left of the ice cream.

I scooped it out, thinking it was dead, and left it on the table.

Then one antenna moved.

Slowly, it began to crawl. It cleaned the ice cream from itself and scuttled away.

Not ready to fly yet.

But alive. Recovering.

Perhaps that is what healing sometimes looks like. Not untouched by what happened. Not immediately able to fly. But safe enough, given enough time, for small signs of life to begin returning.

Surviving to

She knows her child needs to be seen.

Not because she has imagined the worst. Not because every cough or change sends her into panic. She knows because she has seen this pattern before.

The slightly different way he is breathing. The way he has stopped asking for a drink. The number on the monitor which may still look acceptable to somebody who does not know what usually comes next.

She makes the call.

Then she begins the strange work of trying to translate six years of knowing into the few minutes she has with someone who has never met her child.

She gives the numbers. Explains the history. Says what happened last time. Tries to sound calm enough to be taken seriously, but concerned enough that they understand this cannot wait.

She is holding the responsibility for making the right decision. But the authority to act sits somewhere else.

I think this is one of the hardest parts of prolonged caregiving to explain.

From the outside, the parent is making a phone call. Asking for advice. Perhaps pushing for an assessment.

From the inside, something much heavier is happening.

She has already had to decide that the change matters. She has weighed the risks of staying home against the risks of going in. She knows that either decision may have consequences. And now, having made that decision, she must persuade someone else that what she knows deserves attention.

If she pushes too hard, she may be described as anxious, demanding or difficult.

If she accepts reassurance and something goes wrong, she will be the person who lives with knowing that she saw it coming.

Watch too closely and you become the problem.

Watch too little and you may lose them.

Responsibility is not the same as authority

Responsibility and authority are often spoken about as though they naturally belong together. If you are responsible for an outcome, we might assume you also have some power to influence it.

For many parents and carers, that is not how it works.

They may be responsible for noticing the deterioration, making the call, explaining the history, giving the medication, deciding when it is no longer safe to wait and carrying the consequences home afterwards.

Yet they cannot order the test, admit the child, change the treatment plan or make the system respond.

Even when they hold the most detailed knowledge of the person in front of them, their knowledge has to pass through somebody else before it can become action.

Sometimes that works beautifully. A professional listens, brings their own knowledge and authority, and the two forms of expertise meet. The loop closes. The parent is no longer holding the decision alone.

I remain deeply grateful for every clinician who has done that: the people who understood that listening to a parent did not diminish their professional expertise, but added something essential to it.

But sometimes the loop does not close.

The information is heard but not held. Advice is given, the call ends or the appointment finishes, and the parent goes home carrying exactly what they arrived with.

This is why sharing information is not the same as sharing responsibility.

Someone may have listened to the story. They may even have been kind. But if the parent remains the only person tracking what happens next, deciding when the threshold has been crossed and knowing they will have to begin the whole process again with somebody new, the watch has not truly been handed over.

Learning that noticing is not enough

Over time, a parent may learn that noticing a change is only the first task.

They must also be able to prove it.

So they keep the clinic letters. Photograph the monitor. Record the dates. Learn the language most likely to be understood. They work out which details open a door and which ones are likely to be dismissed.

They may become very calm while doing this. Precise. Organised. Good in a crisis.

That competence can hide the cost of what is happening.

Because beneath it sits a difficult lesson: if I do not hold the whole picture, nobody else will.

I have wondered whether this is one reason standing down can become so difficult, even when the immediate crisis has passed. It is not simply that the nervous system has learnt to watch. It has learnt that watching alone may not be enough.

It may need to document, translate, anticipate objections and keep speaking after reassurance has been offered.

Not because the person wants control for its own sake, but because experience has taught them what can happen when they give it away too soon.

The system may see persistence, not the history beneath it

Each professional usually meets the parent at one point in the story.

They see the extra phone call, the folder, the question asked again or the reluctance to accept that everything is probably fine.

They may not see the years that came before it. The times reassurance was wrong. The subtle change that really did become an emergency. The moment the parent almost allowed somebody else’s confidence to override what they knew.

Without that history, persistence can look disproportionate.

Within the history, it may make complete sense.

This does not mean a parent’s interpretation will always be right. None of us is always right. Nor does it mean that every concern requires the response being requested.

It means the knowledge has to be considered rather than explained away. Curiosity is different from compliance. A clinician can listen carefully, take a parent’s pattern recognition seriously and still reach a different clinical judgement.

What matters is that the parent is not made into the problem simply because they continued to hold information the system had not yet found a place for.

The broken handover

In healthy responsibility systems, watching has an endpoint.

A shift finishes. Another person arrives. Information is transferred and responsibility moves with it. The person who was watching can eat, sleep or go home knowing that someone else now holds the next decision.

For a parent or long-term carer, there may be no true end of shift.

Even in hospital, they may remain the person who knows the baseline, notices the small change and remembers what happened the last time a particular medication was given. At home, the responsibility returns completely.

The handover may happen on paper while never quite happening in the body.

The sentinel remains at the watchtower because experience has shown that there may be a gap between being told someone else is watching and feeling that the person they love is genuinely held.

This is not about blaming individual professionals. Many are working inside overstretched systems, holding more risk and responsibility than any one person reasonably should. In some ways, they may be standing their own version of the watch.

The problem is what happens when a system repeatedly depends upon one person’s vigilance while treating that same vigilance as evidence that the person cannot judge clearly.

It needs their knowledge, but does not always recognise it as knowledge.

It leaves them responsible, while keeping authority elsewhere.

What happens when the crisis passes?

Post-Responsibility Trauma, or PRT, is the framework I am developing to explore what sustained responsibility can leave behind, particularly when it has been carried with limited authority, relief or recognition.

Part of that framework is Sentinel Adaptation: the skilled, conditional monitoring that develops when someone has repeatedly needed to notice changes in time.

But the watching is only part of the story.

There is also the cost of carrying decisions that were never fully yours to make, while knowing you may still be held responsible for what happens.

Eventually, the crisis may pass. The child may become more stable. The appointments may grow less frequent. Other people may assume that life can now return to normal.

But responsibility does not always leave the nervous system simply because the emergency has ended.

The person who held the watch may still be listening for the next change. They may still find rest difficult, or discover that the collapse arrives only after everybody else is safe.

That is the part of the story I will pick up next.

Post-Responsibility Trauma (PRT) and Sentinel Adaptation are concepts developed by Lindsay Reynolds as part of an emerging clinical framework exploring the effects of sustained responsibility without corresponding authority, relief or recognition. They are proposed concepts rather than diagnoses. © Lindsay Reynolds 2026.

She has a folder. She always has a folder.

Discharge summaries, clinic letters, the printout from the last admission with her own annotations in the margin. She knows the name of the registrar who saw her son in March and what was said, verbatim, because she wrote it down while it was being said.

The consultant glances at the folder and doesn’t open it.

“You seem very anxious,” he says. Kindly. He means it kindly.

She isn’t anxious. She’s watching.

She has been watching for six years: the colour change that comes before the seizure, the sleep pattern that shifts three days before a crisis, the flavour of cry that means this one, now, don’t wait.

She has been right, repeatedly, in ways that saved time and possibly a life.

The watching is not a symptom. It’s a skill.

It was trained into her nervous system by six years of being the only person in the room who held the whole picture, and the only one who couldn’t hand it over at the end of a shift.

But there’s no word for that in the room.

So she gets the word that’s available: anxious.

And she learns, again, what happens when calibrated pattern recognition meets a system with no category for it.

She gets managed instead of heard.

I want to give it a name, because the wrong name is doing damage.

What she’s doing is not hypervigilance.

It’s Sentinel Adaptation.

Sentinel Adaptation is what a nervous system does when it is given sustained responsibility for someone’s survival without the authority to act on what it knows, and without anyone to hand the watch to.

It is part of a framework I have been developing called Post-Responsibility Trauma, or PRT.

It begins with one observation that changes everything downstream:

This monitoring is calibrated, not chaotic.

Sentinel Adaptation is not a diagnosis. It is a proposed way of recognising a pattern that existing clinical language often misclassifies.

Hypervigilance, in the clinical sense, is an alarm calibrated to a past threat: the nervous system scanning broadly for danger, often without clear thresholds for when concern should escalate.

It is real, and it deserves care.

But it is not the same as what she is doing.

Her attention is conditional. It rises when specific, learned signals appear and settles when they do not.

She is not responding only to a threat template from her past. She is tracking something real, current and external, and she is often right.

Anxiety asks:

What if something is wrong?

Sentinel Adaptation asks:

Is the pattern I know present right now?

And it can often answer.

The distinction matters because treating one as though it were the other can cause harm.

When threat perception has become detached from present conditions, gently examining catastrophic predictions may be useful.

But ask a sentinel to distrust calibrated pattern recognition and you may be asking her to unlearn the very thing that has kept her child alive, while doing nothing about the reason her nervous system cannot stand down.

She cannot stand down because no one has ever relieved the watch.

That is not a distortion to correct.

It is an accurate reading of her situation.

None of this means these parents are not exhausted, suffering or in need of support.

They are, profoundly.

But you cannot support someone whose experience you have misnamed.

The suffering is not caused by faulty threat perception.

It is caused by holding responsibility that was never matched with power, rest or recognition.

And that is the part of the story I will pick up next.

Sentinel Adaptation and Post-Responsibility Trauma (PRT) are concepts developed by Lindsay Reynolds as part of an emerging clinical framework exploring the effects of sustained responsibility without corresponding authority, relief or recognition. © Lindsay Reynolds 2026.

This morning I found myself thinking that sometimes the best present is no present at all.

Not because I don’t like gifts, but because a little more financial breathing space can be a gift in itself.

The same is true of food. Choosing the healthy picnic instead of the extravagant meal isn’t really about saying no to cake. It’s about saying yes to a body that hurts a little less tomorrow.

But the thing I’ve reflected on most today is family.

People often compare lives as though somewhere, someone has found the perfect balance. The perfect home. The perfect children. The perfect relationship. The perfect routine.

I’m not sure that family exists.

Instead, I think we all make trade-offs.

A perfectly tidy house has benefits. It can also come with more demands, more stress, more reminders, more arguments about keeping it that way.

Beautiful ornaments have benefits. They can also mean anxiety about breakages and less freedom to move, explore and create.

Choosing connection over conformity has benefits. It also has costs.

For us, I’ve often chosen to make life fit our brains and bodies rather than forcing our brains and bodies to fit someone else’s idea of how life should look.

That choice has costs. There is judgement, both from society and, sometimes, from the little critical voice inside my own head. There is less money. Less time. A body that carries the consequences of chronic illness every single day.

Perhaps every family pays a different price for the life they create. There is no right answer. Only the question: which costs are we willing to carry, and what are we hoping to grow in return?

But there are benefits too.

Our home isn’t always calm. Sometimes it’s beautifully chaotic. But it is deeply connected, and love is never in doubt.

Perhaps peace isn’t the absence of chaos. Perhaps it’s knowing that even in the middle of it, we’re still connected. Even when we’re angry, overwhelmed or sad, we repair. We come back together. Home is a place where our nervous systems are allowed to be human, without belonging ever being at risk.

Yesterday, while buying my son a notebook for his maps, I quietly bought myself a birthday present too: The Wilding Year.

I realised it wasn’t really about gardening.

Every garden asks something different of us. Some ask for neat edges, careful pruning and constant control. Others ask us to notice more than we interfere. To work with what naturally wants to grow. To become less of a designer and more of a steward.

Neither is right or wrong. They simply create different landscapes.

Perhaps families are much the same.

I’ve realised I don’t want to cultivate a perfect family any more than I want to cultivate a perfect garden.

I’m trying to steward both.

To notice what helps each person grow.

To remove what I can that causes harm.

To protect when protection is needed.

To trust their own nature more than my own need for control.

Perhaps stewardship is simply love without ownership. It asks a different question from control. Not “how do I make this become what I want?” but “what does this need from me in order to flourish?”

Today my children sent me upstairs while they quietly laid out a birthday picnic with little pink doughnuts, candles and all the food they had chosen themselves. Earlier we’d been to Morrisons Café. It wasn’t extravagant. It wasn’t the sort of birthday you’d see on social media. It looked remarkably like many other ordinary days in our house.

And perhaps that’s the greatest privilege of all. Not creating extraordinary days. But creating a life where ordinary days already feel enough.

Just sandwiches, fruit, popcorn, pink doughnuts with candles, a book I’d quietly bought myself, two children who wanted to make me smile, and the overwhelming feeling that this ordinary little life we’ve built is enough.

I don’t have the perfect life.

I have a life that fits.

And perhaps that’s all a steward can ever hope for.

When she stepped back from assistance dog work, it would have been easy to conclude that she couldn’t cope. That she wasn’t suited to the role.

But that wasn’t quite true.

What we’ve discovered is that Beans thrives when she’s on her own. Without another dog alongside her. Without quite so much chaos competing for her attention. The same dog. The same skills. A different environment.

It made me think about the children who quietly disappear in group settings.

We often celebrate attendance. We measure success by whether someone turned up, sat in the room or joined the activity.

But meaningful engagement is something different.

For some children, a busy room, a large class or a noisy activity doesn’t simply feel uncomfortable. It can consumso much of their energy that there is nothing left for learning, connecting or enjoying themselves. They may look as though they’re participating, but internally they’re surviving.

Change the environment, though, and everything changes.

A smaller group. One trusted adult. Less sensory demand. Fewer social expectations.

Suddenly the child who “couldn’t engage” is laughing, contributing, creating and connecting.

The difficulty was never the child.

The hidden cost is that these environments are expensive to provide.

Of course they are. Facilitators deserve to earn a living, and smaller groups inevitably mean higher costs. That’s an economic reality, not a criticism of those providing them.

Of course they are. Facilitators deserve to earn a living, and smaller groups inevitably mean higher costs. That’s an economic reality, not a criticism of those providing them.

But it does leave many families in an impossible position.

The children who most need smaller, quieter, more personalised environments are often the very children whose families are already carrying additional financial pressures — because of disability, caring responsibilities or reduced employment.

The opportunity exists on paper. But in practice, it is only available to those who can afford the kind of environment their child needs in order to take part. And so access ends up decided by income, not by need.

Sometimes inclusion isn’t about adding another support worker, or asking a child to try harder.

Sometimes it’s about recognising that thriving looks different for different nervous systems.

Beans reminded me of that today.

She didn’t need more training.

She needed the right environment.

He stands out. His clothes have no labels or brands — just his favourite characters and games across the front. He might be moving joyfully, spinning in a slow circle, shaking his hands, humming to himself.

If you speak to him, he’ll go still and silent. He’ll look to me. He might move in closer.

If he’s distressed, the movement grows — spinning, pacing — or he disappears: under the furniture, or curled on the floor inside an oversized hoodie, hiding from the world.

You might assume he can’t understand what you’re saying. That he moves through this world with too much difference to count, or to contribute.

You would be very, very wrong.

⸻

Online, he comes alive.

He has a tight group of friends — lovely human beings, every one of them, who include anyone willing to be respectful and kind. And in this group, my child is a leader.

He teaches new players what to do. His friends ring most nights to ask if he’s coming online. They work together to solve the hardest levels, then make videos showing others how it’s done.

And when someone crosses a line — is unfair, or unkind — they handle it with a grace I am in awe of. Social skills I wish I had half as well.

He can tell you, clearly and kindly, exactly why what you did wasn’t okay. He’ll ask you to put it right, or not to do it again. And if you won’t — if you can’t manage that — he can let you know, with a remarkable mix of assertiveness and warmth, that you’ll be leaving the group, and why.

These are children with shared values. A group I am proud to know. And prouder still to call one of them my son.

⸻

I was reminded of all this recently in the smallest moment.

He was on a call, and his friend was briefly introduced to me in passing — the way these things happen, a voice through a doorway. “Oh — say hi to my mum.” I called out hello as I crossed the room.

His friend called back hello. And then, completely unprompted, he added:

“I just want to tell you how smart he is. He’s so clever.”

⸻

I think about this a lot.

If his whole life were lived in the places that struggle to see him — waiting rooms, classrooms, groups where his difference arrives before he does — his sense of himself might look very different. He might have learned to see himself the way he is so often read. As less. As lacking. As someone the world has to make allowances for.

But he gets to create his own world. He gets to choose his friends, his challenges, the ground he stands on.

And so he doesn’t see himself as the boy you’d walk past in the queue.

He sees himself as the leader. The teacher. The clever, creative, funny, kind person his friends already know him to be.

That confidence follows him everywhere. When he decided to teach himself physics, far beyond his years, it never once occurred to him that he couldn’t — even though reading is hard for him, even though no school exam would ever capture what his mind can do.

He has never needed his intelligence to be measurable to know that it’s real.

I’m grateful for that every single day. Because in a world that could so easily have pulled him down, he found the place that let him stand at his full height.

And from there, it turns out, he can reach almost anything

It is an understandable question.

But I sometimes wonder whether we are asking it because it feels easier than asking a more uncomfortable one: why is so much harm being created in the first place?

If a river is carrying bodies downstream, eventually we have to look upstream.

⸻

When people say “social media is toxic,” what they usually mean is that human beings are using social media in toxic ways.

When people say “AI is dangerous,” what they often mean is that human beings may use AI dangerously.

The distinction matters, because it tells us where to look.

We have become very good at teaching children how to navigate danger. Internet safety lessons. Privacy settings. Parental controls. Age verification. Restrictions.

Yet we seem far less interested in understanding why so many people are creating the very dangers we are trying to protect children from.

Bullying does not begin with technology. Cruelty does not begin with technology. Prejudice does not begin with technology.

Technology amplifies what already exists. The internet did not invent exclusion, humiliation, scapegoating or dehumanisation. Human beings did.

The same technology that exposes one child to harm may allow another to find friendship, belonging and community. The same AI tool that can spread misinformation can also help a struggling student learn. The same gaming platform that worries policymakers may be the place where an isolated autistic child has their closest friendships.

The question is not whether technology is good or bad. The question is what kind of society we are building around it.

⸻

If children are encountering increasing hostility online, perhaps we should also be asking what they are seeing modelled offline.

Consider how the public conversation has shifted around disability. The growing talk of overdiagnosis, of an ever-rising benefits bill, of who is really struggling and who is faking it. None of this stays in policy documents. It drips down into how people think, and then into what they feel entitled to say. Before long it feels acceptable to treat disabled people as a drain, as suspect, as less than.

The same pattern plays out elsewhere. The framing of refugees and migrants in the media and by public figures starts tentative and picks up pace, until people feel confident saying things online they would once have kept to themselves.

The human brain is already wired to find difference frightening. When we amplify that fear, normalise it, and reward it, it is no wonder that in online spaces it grows and takes on a life of its own.

And it does not stay online.

The permission spreads. What begins as rhetoric in public debate becomes conversation in communities. What begins as a joke becomes an assumption. What begins as a comment online becomes something people feel comfortable saying aloud.

Before long, the family who are openly gay, disabled, neurodivergent, from another country, another faith, or simply different in some visible way discover that the conversation has moved beyond the screen.

And then we wonder why our children copy it.

⸻

Children learn from culture. They learn from us.

What is one person’s flag in the garden becomes another person’s permission. What grows online seeps into the world we live in — and what we model in the world seeps back online, with the brakes off.

We spend enormous energy managing the consequences of problems while neglecting the conditions that created them.

Perhaps protecting children requires more than restricting access to harmful spaces. Perhaps it also requires looking upstream — at who is putting the bodies in the water in the first place, and at why so many people are willing to jump in, and why the river is filling faster than we can pull the bodies out.

She arrives at A&E and tells you her child isn’t right. The breathing is wrong.

The child looks fine. Observations are normal. You send them home.

Anxious mother.

The next morning she’s at the GP. Obs fine again. A chest infection, probably. Here are some antibiotics. Go home.

Anxious mother.

She’s back at A&E that night. The child is running around the waiting room, playing. Chest infection, you say. Keep going with the antibiotics. We’ll discharge you as soon as the paperwork’s signed.

Anxious mother.

The child falls asleep. She keeps asking you to check again. Something is wrong, she says. Please. You’re polite, but you’re really just waiting on the discharge papers. The child is fine.

Anxious mother.

Now she’s becoming a problem. She’s insisting — loudly — that if you don’t come and check her child, her child is going to die. She’s making a scene. Other people are looking.

So, reluctantly, to settle her down more than anything, you go and check.

The child’s lungs have collapsed.

You rush them to resus.

That anxious mother just saved her child’s life. Because she saw something nobody else did.

⸻

We didn’t just dismiss her. We came close to letting the very thing she was trying to prevent happen anyway.

The story we told about her almost cost her child.

⸻

We tell stories about people all the time.

The anxious mother. The difficult patient. The overprotective parent. The manipulative teenager. The non-compliant child. The neglectful family.

Most of the time, we don’t even realise we are doing it. The story arrives so quickly that it feels like a fact.

But every story acts like a lens. Once we have decided what we are looking at, we start noticing the evidence that confirms it. The mother becomes more anxious. The child becomes more defiant. The family becomes more neglectful. The story strengthens itself — until something happens that forces us to see what was there all along.

Perhaps the most important question is not whether our stories are right or wrong. It is whether we hold them lightly enough to let them change.

Because sometimes the person in front of us knows something we don’t. Sometimes the behaviour we are trying to explain is information rather than evidence. And sometimes the story we are most certain about is the very thing preventing us from seeing clearly.

The next time someone refuses to let something go, perhaps the question is not:

“Why are they so anxious?”

But:

“What are they seeing that I can’t?”

One of the biggest shifts in my professional life has not been learning a new therapy model or gaining another qualification.

It has been changing the stories I tell about people

Not deliberately. Not consciously.

Just the quiet stories that form in all our minds when we are trying to make sense of what we see.

A child refuses school.

A parent repeatedly asks for help.

A teenager seems angry, withdrawn, or uncooperative.

A house is messy.

A child is not dressed appropriately.

A client keeps returning to the same problem.

A professional observes a behaviour and tries to understand it.

We all do it.

We create a story.

The problem is not that we tell stories. Human beings are meaning-making creatures. We cannot avoid it.

The problem comes when we forget that the story is only a theory.

Early in my career, I was trained in behavioural approaches.

The underlying message was relatively simple: reinforce the behaviours you want to see, ignore those you don’t.

Later came the era of parenting programmes, reward charts, consequences, routines, consistency and boundaries. I taught many of these approaches. I watched them help families. I saw positive changes.

Then I became a parent myself.

And some of the stories I had been told no longer seemed to fit.

I tried approaches that I had seen work beautifully with other children. I used respectful, relationship-based parenting. I focused on connection rather than punishment.

Yet many of the outcomes I had been taught to expect simply did not appear.

At first, it was tempting to conclude that the approach wasn’t working.

What I understand now is that it was working.

I was simply measuring the wrong things.

For some neurodivergent children, success does not necessarily look like compliance, cooperation, or immediate behaviour change.

Sometimes success looks like maintaining trust during conflict.

Sometimes it looks like a child still seeking comfort from you after a difficult day.

Sometimes it looks like preserving a relationship despite years of stress.

Sometimes it looks like reducing shame rather than reducing behaviour.

The intervention had not failed.

The story I was using to judge success was incomplete.

Over the years, I have become increasingly interested in the harm caused by misinterpretation.

Not because professionals are malicious.

Most are doing their best with the knowledge they have.

But I often wonder about the people who have been understood through the wrong lens.

The autistic child understood only through an attachment framework.

The traumatised person labelled as having a personality disorder.

The overwhelmed child described as defiant.

The parent viewed as anxious, controlling, or overprotective.

The family judged by the state of their home rather than the circumstances they are navigating.

A formulation does not stay on paper.

It shapes what support is offered.

Who is believed.

Who is blamed.

What interventions are used.

And perhaps most importantly, the story people come to tell about themselves.

One of the most important lessons I have learned from neurodivergent people and families is that behaviour often makes far more sense than we initially assume.

What looks like avoidance may be overwhelm.

What looks like control may be an attempt to feel safe.

What looks like non-compliance may be distress.

What looks like poor parenting may be a family making impossible choices with limited resources and competing needs.

The behaviour has not changed.

Only the story has.

These days, I am less interested in asking:

“What’s wrong with this person?”

And more interested in asking:

“What story am I telling about this person?”

And perhaps more importantly:

“What if that story is wrong?”

Because sometimes the greatest harm does not come from the original experience.

Sometimes it comes from spending years being told the wrong story about that experience.

And sometimes the most powerful thing we can offer another human being is not advice, intervention, or treatment.

Sometimes it is a willingness to put our assumptions down long enough to become curious.

To wonder what we might be missing.

To allow the story to change.

And to remember that people are often making far more sense than we first imagined.

I hope to write more about these people — and about what happens when we think we know their story better than they do.

Whatever choice you make, someone arrives with another opinion, another standard, another version of wrong.

And they’re right. The world is stacked against us.

But there is another mother in that conversation. The one nobody writes the article about.

She has even more judgment against her — and fewer choices to begin with. Not just hard choices. Choices where every option looks wrong to someone, because she doesn’t have the resources that would make any of them look right.

She can’t win — but it’s worse than that. Whatever she does she is losing, and we judge her for it, when she never had a chance to run the same race to begin with.

There is a mother you might see.
She is at the school gates, or in the waiting room, or in the supermarket. Her children might be loud, or unkempt, or difficult to manage in public. She might look tired. She might look like she has stopped trying.
Perhaps she has. Because whatever she tries, someone will tell her it’s wrong.

Take them to school: that child is disrupting the class, how can you expect a teacher to manage that, shouldn’t be in a mainstream classroom. Keep them home: she’s neglecting their education, who does she think she is, thinking she can do better.

Take them to the supermarket: do we all have to listen to that, someone should have more control, disgraceful behaviour in public. Get the shopping delivered: lazy, denying them experiences, neglecting their development.

Take them to the waiting room: why would you bring a child like that somewhere people are unwell and trying to be calm. Keep them home and miss the appointment: neglectful, should have made it work.

Tell them off in public: hysterical, needs educating about her child’s needs, they can’t help it, bad mother. Don’t tell them off: pushover, no discipline, needs to be a parent not a friend, bad mother.

Every door she tries has a judgment waiting behind it.

Push too hard for a diagnosis and she wants it too much, must be making it up, must be about her. Don’t push hard enough and she should have known better, should have done more, failed her child by not fighting harder.
Go to work: how can she expect anyone else to manage that child, too complex for nursery, too many needs, not the right fit anywhere. Stay home: scrounger, on benefits, should have thought about that before having children.

Don’t claim DLA: selfish, that money is for her child, how could she turn it down. Claim it: scrounger, just wanted a diagnosis so she didn’t have to work.

I saw it play out in an online forum recently. A mother posted saying she was thinking of closing her DLA claim and asking how to do it. Hundreds of comments telling her how selfish she was. That money is for her child. She has no right to turn it down. But scroll elsewhere — and you don’t have to scroll far — and the same mother, claiming the same money, is a scrounger. Gaming the system. Lazy.

Same woman. Same decision. Wrong either way.

Leave a difficult relationship and she’s a single mother, scrounging, couldn’t make it work, should have chosen better. Stay and she’s putting the children through it, should have left sooner.

Notice what is happening here.

We often imagine that judgment helps people make better choices.

But these are not situations where there is a clearly correct choice waiting to be discovered.

These are situations where resources are limited, needs conflict, and every option solves one problem while creating another.

Yet we continue to behave as though there must be a perfect answer — and if a mother cannot find it, the fault must lie with her.

The house is cold because she spent the money on food. The children look unkempt because she spent the money on heating. She looks exhausted because she has been doing all of this alone, and her body is now paying the price — chronic fatigue, chronic illness, the accumulated cost of too much held for too long with nowhere to put it down.
And still the judgments come.

She looks a mess. Where is her self-respect. Poor kids. Should have thought about that before.

We pile more onto her and then judge her for struggling under the weight. We remove options and then judge her for the choices she makes without them. We design a standard that moves every time she gets close to it — and then we act surprised when she can’t reach it.

She was never going to win. The game was not designed for her to win.

We often talk about individual choices as though everyone is choosing from the same menu.

But resources change what is possible.

Time changes what is possible.

Health changes what is possible.

Support changes what is possible.

The mother being judged is often not making a worse choice than everyone else.

She is making the best choice available from a much shorter list.

And if you are her — if you are reading this and recognising yourself in it —
I see you.
I see what you carry and what you give and how much of yourself has gone into keeping everything together. I see the love in the juggling, even when the juggling looks like chaos from the outside.

Someone will tell you the housework can wait. And then someone else will judge you for it, and sometimes there are real consequences to that, and both of those things are true at once and there is no clean answer.

Someone will say look after yourself. But what good is a bubble bath if what you need is sleep, and money, and time.

Someone will say it only takes five minutes. There are 1,440 minutes in a day. Theoretically 288 five-minute tasks. But when there are more tasks than there is time or energy, and they all only take five minutes, and some of them have to be let go of — that is not laziness. That is mathematics.
I don’t have the answer that makes this easier. I wish I did.

But I want you to know that the impossible standard you are failing to meet was always impossible. That was not an accident.
You were never the problem.

You were just the one left holding everything nobody else would.

It’s not much. A sheltered spot where injured bees, butterflies, moths and the occasional wasp can rest and recover. Or die. But at least with a bit of care.

Over the years we’ve learned that some make it and some don’t.

A bee once spent the night in a bucket of water. When I found her she looked dead. I scooped her out anyway. She clung on for dear life, so we brought her indoors, gave her warmth, fresh flowers and somewhere dry to rest. A few hours later she was exploring the flowers. By the afternoon she flew away.

Others haven’t been so lucky.

One of our most memorable residents was Queenie, a queen wasp we found struggling in spring with a damaged wing. At first, I’ll be honest, I was relieved she couldn’t get into the lounge. She was huge, angry and determined.

The next morning I found her on the stairs.

She accepted sugar water, climbed onto my hand and gradually became part of our lives. We built her a home with flowers and fruit. She would occasionally fly away, then return tired and struggling, ready for a little shelter and a boost.

What Queenie taught us was that even injured creatures still need to be themselves.

Indoors she constantly tried to leave. Outdoors she was content.

Eventually we brought her inside during bad weather while we went out to buy her a sturdier shelter. We thought we were keeping her safe.

We weren’t.

The next morning we found her drowned in a small puddle on the draining board.

It was heartbreaking, but it taught us something important. We can’t control wildlife. We can’t control weather, predators, accidents or outcomes. The best we can do is provide what is needed and allow creatures the freedom to choose.

So now Queenie’s enclosure is planted with strawberries and chives. The flowers feed pollinators. The shelter remains available for whoever needs it next.

Some stay a while.

Some recover quickly.

Some die anyway.

And that has taught me something else.

When something dies, one person may respond with visible sadness, guilt and tears. Another may quietly analyse what happened and make changes for next time.

We often assume the emotional response means someone cared more.

That may not be true

Sometimes the child who appears calm is caring just as deeply. They simply show it differently. They learn. They adapt. They build a better shelter. The care is shown differently. Held more inside. The brain turns towards making sure it’s better next time. The fact they keep doing that and don’t give up shows how deep the care is perhaps sometimes more so than tears

Is it sad when some don’t survive?

Of course.

Is it still worth helping?

Absolutely.

Every act of care in this world is worth it.





I bet you’ve seen them. The memes and the articles about how women — and mothers especially — just can’t win. Go to work: poor kids, I could never leave mine. Don’t work: scrounger, what does she do all day. Whatever choice you make, someone arrives with another opinion, another standard, another version of wrong.

And they’re right. The world is stacked against us.

But there is another mother in that conversation. The one nobody writes the article about.

She has even more judgment against her — and fewer choices to begin with. Not just hard choices. Choices where every option looks wrong to someone, because she doesn’t have the resources that would make any of them look right.

She can’t win — but it’s worse than that. Whatever she does she is losing, and we judge her for it, when she never had a chance to run the same race to begin with.

There is a mother you might see.

She is at the school gates, or in the waiting room, or in the supermarket. Her children might be loud, or unkempt, or difficult to manage in public. She might look tired. She might look like she has stopped trying.

Perhaps she has. Because whatever she tries, someone will tell her it’s wrong.

Take them to school: that child is disrupting the class, how can you expect a teacher to manage that, shouldn’t be in a mainstream classroom. Keep them home: she’s neglecting their education, who does she think she is, thinking she can do better.

Take them to the supermarket: do we all have to listen to that, someone should have more control, disgraceful behaviour in public. Get the shopping delivered: lazy, denying them experiences, neglecting their development.

Take them to the waiting room: why would you bring a child like that somewhere people are unwell and trying to be calm. Keep them home and miss the appointment: neglectful, should have made it work.

Tell them off in public: hysterical, needs educating about her child’s needs, they can’t help it, bad mother. Don’t tell them off: pushover, no discipline, needs to be a parent not a friend, bad mother.

Every door she tries has a judgment waiting behind it.

Push too hard for a diagnosis and she wants it too much, must be making it up, must be about her. Don’t push hard enough and she should have known better, should have done more, failed her child by not fighting harder.

Go to work: how can she expect anyone else to manage that child, too complex for nursery, too many needs, not the right fit anywhere. Stay home: scrounger, on benefits, should have thought about that before having children.

Don’t claim DLA: selfish, that money is for her child, how could she turn it down. Claim it: scrounger, just wanted a diagnosis so she didn’t have to work.

I saw it play out in an online forum recently. A mother posted saying she was thinking of closing her DLA claim and asking how to do it. Hundreds of comments telling her how selfish she was. That money is for her child. She has no right to turn it down. But scroll elsewhere — and you don’t have to scroll far — and the same mother, claiming the same money, is a scrounger. Gaming the system. Lazy.

Same woman. Same decision. Wrong either way.

Leave a difficult relationship and she’s a single mother, scrounging, couldn’t make it work, should have chosen better. Stay and she’s putting the children through it, should have left sooner.

The house is cold because she spent the money on food. The children look unkempt because she spent the money on heating. She looks exhausted because she has been doing all of this alone, and her body is now paying the price — chronic fatigue, chronic illness, the accumulated cost of too much held for too long with nowhere to put it down.

And still the judgments come.

She looks a mess. Where is her self-respect. Poor kids. Should have thought about that before.

We pile more onto her and then judge her for struggling under the weight. We remove options and then judge her for the choices she makes without them. We design a standard that moves every time she gets close to it — and then we act surprised when she can’t reach it.

She was never going to win. The game was not designed for her to win.

And if you are her — if you are reading this and recognising yourself in it —

I see you.

I see what you carry and what you give and how much of yourself has gone into keeping everything together. I see the love in the juggling, even when the juggling looks like chaos from the outside.

Someone will tell you the housework can wait. And then someone else will judge you for it, and sometimes there are real consequences to that, and both of those things are true at once and there is no clean answer.

Someone will say look after yourself. But what good is a bubble bath if what you need is sleep, and money, and time.

Someone will say it only takes five minutes. There are 1,440 minutes in a day. Theoretically 288 five-minute tasks. But when there are more tasks than there is time or energy, and they all only take five minutes, and some of them have to be let go of — that is not laziness. That is mathematics.

I don’t have the answer that makes this easier. I wish I did.

But I want you to know that the impossible standard you are failing to meet was always impossible. That was not an accident.

You were never the problem.

You were just the one left holding everything nobody else would.

They smell. Their hair is unbrushed. Their clothes are not quite clean.

It is easy to look at that and know what you are seeing. Easy to settle on a conclusion about the parent who isn’t trying, or doesn’t care.

Often, that conclusion leads somewhere else entirely.

For many neurodivergent children, self-care is not straightforward. Brushing teeth is not a simple task that requires only a toothbrush and two minutes. It is a sensory event. The texture of the paste, the foam, the taste, the feeling of bristles — any of these can make the whole thing genuinely intolerable. For a child with a PDA profile, the demand itself is part of the problem. Not just the external demand — someone telling them to brush their teeth — but the internal one too. The knowledge that their breath smells, that their teeth need attention. That awareness can make it harder, not easier.

The response to this, if you have the resources, is choice and autonomy. You try different toothpastes — different flavours, no flavour, foaming, non-foaming, paste, powder, chews. You try different toothbrushes — electric, manual, soft, firm, rubber ones that fit on a finger, ones designed for children who need to chew rather than brush. You might find an app that turns the two minutes into a game. You might try a timer, a reward, a different time of day, a different order of events.

All of this costs money.

The specialist toothpastes cost more. The sensory toothbrushes cost more. Some children need several options available at once so that there is genuine choice rather than the appearance of it. And some children, even after all of that, still struggle — because none of it removes the demand, and sometimes there is no sensory solution that resolves what is fundamentally a nervous system response.

Then there is bathing. Hair care. Clothing — finding the right fabrics, the right fits, and then buying multiples because a child who struggles to change into clean clothes needs the barrier to be as low as possible. Laundry liquid that doesn’t trigger a sensory response. Deodorant, tried in many forms, many scents, many formats, until something is tolerated.

And on it goes.

I wrote last time about the cost of food — the safe foods, the branded preferences, the experimentation that only works if you can afford waste. This is the same pattern in a different room. The bathroom, like the kitchen, requires money to navigate when your child’s nervous system makes the ordinary difficult.

When families are already stretched — and many families are stretched right now — these choices compete with each other. The specialist toothpaste or the food. The sensory clothing or the heating.

Consider the child sitting a few spaces away. Clean, tidy, hair brushed, no smell. Easy to read as cared for.

But what we see on the surface doesn’t tell us the whole story.

Sometimes the clean, tidy child is simply lucky — lucky that their nervous system doesn’t fight them on these things, that getting dressed is neutral, that toothpaste is just toothpaste. Sometimes they cried all the way through getting ready, were told what to wear regardless, their sensory experience neither acknowledged nor accommodated. Cared for on the outside. Something else underneath.

And sometimes the gap between those two children — the one who smells and the one who doesn’t — has nothing to do with how much they are loved. It has to do with options. Resources. A brain that works differently in a world not yet built to adjust for that.

So when you see that child at the park, the one who smells, the one who looks unkempt — before you reach for a conclusion, consider what you might not be seeing.

A parent who has tried fifteen toothpastes.

A child for whom clean is not a simple instruction.

A family doing everything they can on a playing field that was never level to begin with.