SEND HUGS, Chesham (2026)

30/05/2026

Other people: So if you cast your mind back, when would you say your child started to show signs of PDA?

Me: Pretty much from birth, but Facebook gave me a pretty good example this morning from a month after her second birthday.

Facebook memory from May 2014:

Whenever we’re out in the car, N argues with the sat nav. Example from today:
Tom Tom: "After 100 yards, turn left."
N: "Nooooo! Not turn left. Turn right!"
TT: "Cross the roundabout, third exit."
N: "No roundabout. Not go on roundabout, not take motorway!"
TT: "After 100 yards, turn right."
N: "Not turn left or right. Go straight on!"
Me: "This is a T junction. If we go straight on, we'll end up in the sitting room of that house."
N (wails): "Noooooo turn left, Mummy! Noooooooo!"
And yet when we were on our way home, she asked me why I hadn't turned Tom Tom on...

27/05/2026

This book arrived today, and begged me to stop working and have a quick look at it.

I shouldn’t have listened, because the quick look became a longer look, and then I was sucked in completely and trapped inside its pages when I really should have been working.

If you have a child with SEND, this book will make you nod along in recognition. It’ll make you want to cry, scream and throw things. But it’ll also let you know that you’re not alone.

It’s a novel, and the author is careful to say that none of the characters or events are based on any particular person or event. Nevertheless, you’ll recognise many of them. And most of all, perhaps, you’ll recognise yourself.

It’s beautifully crafted - the writing is understated but searing in its accuracy and honesty, and your mind will fill in all the details behind the sometimes starkly presented prose. It also has some one-liners that you’ll pause over, read again and again, and remember.

This feels like an important book - one I wish I could give to all sorts of people, sit them down and make them read it.

But as one of the children in the story says, “If the lesson was learned, why are we still doing homework?”

27/05/2026

This week, I reviewed an updated EHCP draft following an annual review. This is shared with the parent's permission.

The child has a diagnosis of autism with a demand avoidant (PDA) profile. I was shocked to see almost every instance of "struggles to" in Section B replaced with "cannot yet".

So "X struggles to interpret social cues" was changed to "X cannot yet interpret social cues".

"X finds it difficult if too many demands are placed on her" became "X cannot yet cope if too many demands are placed on her".

"X struggles to maintain focus in noisy lessons" became "X cannot yet maintain focus in noisy lessons".

"X struggles to accept direct praise" became "X cannot yet accept direct praise".

You get the idea.

I was fuming by the time I reached the end. A child with PDA becomes an adult with PDA - they don't magically grow out of it. Nor can you educate or nag it out of them. They may learn strategies to get around the difficulties that they have. They may learn to mask very effectively, so nobody else is aware of their difficulties.

But would you say a child who uses a wheelchair "cannot yet walk"? Or a child with visual impairment "can't yet see the board"?

A struggle is a struggle, and a nervous system disability is not something a child will grow out of. "Struggles to" does not mean "is incapable of learning to".

What it does mean, though, is that this is an area in which the person with PDA has to work harder than others, can find it exhausting and dysregulating, may regularly "get it wrong" and needs support to help them to address their difficulties, whether through explicit skills teaching or changes in the way adults interact with them.

I find it particularly disturbing that demand avoidance and discomfort with praise, both hallmarks of PDA which endure into adulthood, have been treated as signs of delayed development which will be reversed in time.

This feels like a way to limit the amount and longevity of support available under the EHCP - if the needs change from something which is always going to be a struggle to a short term deficit, support can be withdrawn as soon as the child seems to be coping.

24/05/2026

The Coke bottle revisited...

We all know how frustrating it is to have to fight for the support which our children need and to which they're legally entitled.

Many of us have had long battles with schools to persuade them to acknowledge and address our children's needs.

We've had parent blame and gaslighting from schools.

We've had unlawful refusals to assess, refusals to issue an EHCP, refusals to send our children to schools that can meet their needs, failure to come anywhere close to complying with statutory timelines, and EHCPs that are so woolly they aren't worth the paper they're written on.

We've been to informal meetings, mediations and tribunal hearings.

There were many tears and frustrations along the way, with schools and other professionals responding with, "Mum's very emotional" or "Mum's terribly anxious".

And eventually, many of us won the provision our children should have had all along.

But now here comes a White Paper that proposes to take away our right to appeal a refusal to assess, to reserve EHCPs for children who fit a predefined set of criteria, to change EHCPs to vague, homogeneous tickbox menus, to remove our right to name the school we think will best meet our children's needs, to put all the day to day, specific provision in an unenforceable plan written by the very people who currently tell us they "don't see it".

Let's have a look at the effect this is having on us.

(Watch to the end - it's worth it!)

23/05/2026

We keep being told that “every child deserves the opportunity” to do whatever the latest thing is.

I’m fully on board with that - all children should be given the same rights and opportunities to find the thing that they enjoy and are good at. They shouldn’t be prevented from participating and learning by factors which can be controlled, such as cost and availability of resources.

BUT - and this is a very big “but” - giving children equal opportunities doesn’t mean all children should be forced to do the same thing.

There’s a vast difference, for instance, between saying, “every child should have the opportunity to play football, so all schools should offer it as an option” and making football compulsory for all children.

Equality says everyone has to play football.

Equity says everyone should have the opportunity to play football if they want to, but nobody should be forced to do it against their will.

Equality says every child has a right to a mainstream education.

Equity says if a mainstream education would be harmful to a child's mental health and educational prospects, they should receive the education that enables them to fulfil their potential, whether that be from a special school, an alternative provision, a flexible timetable, a bespoke EOTAS package or a truly elective home education.

Children are not all the same - they have different strengths, characters, interests and needs.

The same is true of adults, and the career path that suits one would be anathema to another.

The sausage factory model of education, where the same processes are applied to all at the same age and stage, ignores this reality.

Every child should have the right, not just to a one-size-fits-most education, but to the education that works for them.

And that's why "inclusion" should be approached with the utmost caution and not used to replace the specialist provision which many children need.

A lost education is a lost future.

Our children don't have time to wait and see whether the latest experiment will work - they need proper, evidence-based support, and they need the government to listen to those who understand what's needed before it's too late.

22/05/2026

"Mum seems very anxious."

This phrase is often weaponised by schools and used as an excuse not to provide support for children - because clearly their difficulties are caused by "Mum" projecting her anxiety onto them.

But there's a clear difference between anxiety and worry.

Anxiety is often a general sense of impending doom with no clear, immediate trigger.

Worry, by contrast, is triggered by specific, real world issues.

When the issues persist in the long term and can't be resolved, worry can eventually begin to look like anxiety.

But if that feeling of dread in the pit of your stomach, the palpitations, shaking and feeling of rising panic happen as a result of a specific event and the concern is based on past experience as well as present expectation, that's not generalised anxiety - it's a very natural feeling brought on by an external event, and I'm tired of it being dismissed and treated as some sort of sign of weakness or inadequacy in me.

So no, this "Mum" is not anxious.

What I am is upset, deeply concerned and afraid of what's going to happen next, based on past experience.

And that's why I cried this morning when reading a letter from my child's school about their new attendance strategy.

Because even with an EHCP, it seems that every time there's a change in personnel or a change in policy, existing agreements tend to be ripped up and need to be renegotiated all over again.

19/05/2026

This morning, I received three emails from clients. I was struck by the fact that all three said pretty much the same thing.

They thanked me for the work I had done for them, and commented that as a result of my support, they felt more confident about their next steps.

I'm always thrilled to hear this, as it's the reason I set up SEND HUGS - to provide parents with the knowledge and support they need to empower them to advocate effectively for their children. It's the service I needed, but couldn't find, when I was starting out on the journey of discovering that my children needed more support.

I needed someone to sit me down and explain to me what they needed, who to talk to in order to get it, and what hoops I would need to jump through.

I needed someone to hold my hand metaphorically, tell me it wasn't my fault and that they had my back.

I needed someone to see what I was seeing, understand why I was worried and upset, and help me to put it into words.

I needed someone who understood why I couldn't get started with applying for the support my children needed and why I just metaphorically lay down and let professionals walk all over me even when I knew I was in the right - and who would help me to get up, dust myself off and prepare for the meeting, fill in the form or write the letter.

I needed help, understanding, guidance and support - and lots of hugs.

I got much of that from other SEND parents, all while I was getting gaslighting, parent blame, resource guarding and inaccurate information from professionals.

It disappoints me hugely that the proposed SEND reforms put more responsibility in the hands of those very professionals, while ignoring or belittling the efforts of the SEND parents. We poured our hearts into responding to the consultation, but to what end? Will anyone actually listen to us? Will anything improve?

I think people like Bridget and Georgia genuinely are motivated by a desire to improve the system.

Unfortunately, those of us who have experienced it first hand have seen all the factors that make it impossible for the proposals to succeed without significant improvements in training, staffing ratios, accountability and funding.

18/05/2026

I just read Professor Tanya Byron's advice column in yesterday's Sunday Times.

Someone asked a question about an eight-year-old who "has big meltdowns over small changes, refuses school some mornings and seems constantly 'on edge' at home". They said there had been no reports of problems at school.

The response says that "context is key to understanding what's driving behaviour", and explains that "settled behaviour at school but meltdowns only at home suggests inconsistent home expectations, relationship issues, neglect or abuse, or that negative attention patterns occur in the family environment where school's clear behavioural boundaries ... aren't applied."

There's no consideration that school could have any effect on the child's behaviour at home, and no discussion of the school refusal - she just goes straight to parent blame.

It seems that the professor has never heard of masking, so here's a reminder.

Many neurodivergent children struggle through the school day, becoming more and more internally dysregulated as the day goes on, while superficially looking like model pupils. When they are released from the environment that has been making them feel bad all day, they are finally able to release their feelings.

They may also have trouble in the mornings accessing school, knowing that they will have to spend the day pretending they are OK when they feel far from it.

Masking is mentally and physically exhausting and can damage a child's mental health.

According to the National Autistic Society, "a lack of understanding about masking can have implications for diagnosis and support, including:

- people not believing the person is autistic

- misdiagnosis, late diagnosis or under-diagnosis of autism, preventing the person from getting appropriate support (for example at school, in the workplace and with their mental health)

- misunderstandings between professionals and autistic people (or their family or care giver), due to professionals not understanding masking and assuming the person doesn’t experience difficulties – this can block access to support and lead to parent-blaming."

Sadly, it's easier to blame the parents than to fix the real problem.

16/05/2026

My son asked me to buy him a basketball to celebrate finishing SATs, and he’s been having great fun playing with it.

He also made another celebratory plan. He wanted me to make hotdogs and popcorn and watch an entire series of his favourite programme with him.

Half an episode in, he was bouncing his basketball on the laminate floor. I pointed out that I had a full cup of tea on the table and the popcorn would make a mess if it was knocked over.

A bit later, I said that the noise of the basketball bouncing was hurting my ears.

Later still, I mentioned that the ball was bouncing perilously close to the popcorn bowl.

And then the inevitable happened, and the ball bounced onto the table.

“I asked you three times to stop bouncing your ball,” I said.

“No, you didn’t,” he protested.

I reminded him of the three times I thought I’d asked him to stop.

Understanding dawned on his face as he put the ball down and said, “Oh, so that was your subtext. Sorry, Mummy, but I actually need the text.”

And therein lies a whole range of misunderstandings which are too often misinterpreted as wilful disobedience.

Just give them the text!

15/05/2026

The second day of SATs wasn’t as much fun as the first.

Day 3 was distinctly not fun, and he won’t talk about day 4 at all.

He had plenty of scaffolding at school, as well as all I could give him at home.

There was silliness - dancing to the alarm on my phone, singing silly songs, word play and jokes.

There was rough play to get some of the tension out - having “nutting” competitions with our heads, wrestling and pillow fights.

There was his choice of food for tea each evening, with his choice of location to eat it.

There was extra, unquestioning help with getting dressed in the morning, putting his shoes on and getting ready for school.

And there were endless cuddles - often stopping in the middle of whatever we were doing because he needed to put his arms up my sleeves and just stand there feeling safe.

This morning, as we were leaving for school, he paused with his hand on the door handle, looked back with a world-weary expression on his face and a faraway look in his eyes, and sighed, “I’m gonna miss this place,” before trudging out to the car for eight hours away from his sanctuary.

And then we both laughed at the drama of it all, and he started to chatter excitedly about his plans for the next few weeks.

We survived, and I think we’re in good shape - and that’s something that wasn’t guaranteed even a few months ago.

SEND HUGS

30/05/2026

27/05/2026

27/05/2026

24/05/2026

23/05/2026

22/05/2026

19/05/2026

18/05/2026

16/05/2026

15/05/2026

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