SEND HUGS, Chesham (2026)

15/10/2026

When my daughter was diagnosed with PDA, one of the first places I looked for support - and the one which has most consistently provided accurate, up to date information and support ever since, was the PDA Society.

With the persistent attacks in the media and online on people with PDA and the increasing publicity being given to people who deny, in the face of all evidence, that it even exists, there couldn’t be a more immediate need for the services of the PDA Society to continue.

I was shocked and devastated this morning to see that this charity which has provided so much support to so many of us, both directly and indirectly, is experiencing a severe financial crisis and needs to raise £60,000 by the end of this month to protect its support services.

I’ve just donated - if you’re able to, please give what you can. There’s a link in the comments.

12/10/2026

I was very disappointed today to see someone I formerly admired targeting pathological demand avoidance (PDA) on their substack.

The author rubbishes PDA as a diagnosis and treats it as synonymous with demand avoidance.

PDA was first defined by the developmental psychologist Prof Elizabeth Newson. She observed a group of children who were "atypically autistic", but displayed very similar traits to each other. ONE of those traits was extreme avoidance of the ordinary demands of everyday life.

But PDA is not demand avoidance alone, and not all demand avoidance is caused by PDA. A person can be driven to avoid certain demands by trauma, and demand avoidant behaviour can come and go - one of my children can be very demand avoidant at times due to past trauma, but does not have PDA.

I only learnt about PDA because my other child was diagnosed with it. As I read the description of PDA for the first time, I was astonished - this was a perfect and complete description of a child I had thought was uniquely quirky!

A person with PDA avoids the everyday demands of life, including things they need or want to do.

They can be very sociable on the surface, but find it harder to form deep, sustained friendships. Children with PDA tend to have no sense of hierarchy, believing they are on an equal footing with authority figures.

They use social strategies as part of their avoidance, such as using humour or flattery as a distraction, changing the subject, or losing their temper.

They experience intense emotions and mood swings.

Their special interests and hyperfocus are often related to other people, so that they become deeply attached to their "safe" people and invest much of their energy in the people they are interested in (often pop stars or other celebrities).

Children with PDA are particularly comfortable with role play and pretend.

As they get older, people with PDA feel a deep, anxiety-driven need to be in control and many are exceedingly good at masking their difficulties.

If you actually want to understand what PDA is, a good place to start is the website of the PDA Society, from which I've paraphrased a lot of the information above (link in comments).

11/10/2026

A few weeks ago, my son went on a very rare trip to a mall with me, to get his feet measured for school shoes.

While we were there, a family came past us. They had a teenage son who was in a slightly reclined electric wheelchair. His limbs were twisted, his head tilted to one side, and he had an AAC device attached to one arm of his wheelchair.

My son spotted him coming. As the family got closer, my son turned to me and said in tones of great excitement, “Look, Mummy! Do you think he might be the next Stephen Hawking?”

I’ve thought of that a lot as I’ve followed the progress of the Save Our Children’s Rights petition and read some of the disgusting comments on Facebook posts and on media articles about disabled children and their families.

All human lives are equally precious, and every child deserves the right to reach their full potential.

If you haven’t already signed the petition, you still have a couple of days left - and if you have a child who has their own email address, they can sign too.

Follow the QR code in the attached flyer from Helen Buzdugan and nottssendfamilies.

10/10/2026

I’m working my way through the final report of the independent review into mental health conditions, ADHD and autism which was published yesterday.

I have a lot to say about it, and hope to find time to put my thoughts together properly in the next couple of days.

The first thing I have to say is that I’m horrified, though not entirely surprised in the current climate, at the way the findings of this review have been cherrypicked and misrepresented in the media. I’ll have a lot more to say about that.

But for the people who feel attacked, misrepresented and misunderstood, and for the people who feel justified in taking a pop at those who have a diagnosis of autism or ADHD, I just want to highlight this paragraph from the executive summary of the report.

The authors of the report make this very clear:

The distress and difficulties experienced by those who are seeking assessment are real.

There has been no fall in the level of severity or impairment.

The people who are asking for support for very real difficulties are not the problem.

The problem is in the system, and not in the people who need help.

08/10/2026

I have a problem with parenting advice.

It's not necessarily that it assumes if you do X, your child will do Y.

It's not even that those assumptions often don't work if your child is neurodivergent, and doing Z would probably work a lot better.

It's that it assumes it's always possible for you to do X, and that your child will always give the expected response if you do X consistently and correctly.

Anyone who has ever been human (I sometimes wonder about some parenting "experts", many of whom are not parents themselves) will know that the responses of human children can be influenced by hunger, tiredness, pain, illness, the weather, how much exercise they had yesterday, how hard the wind is blowing and in what direction (most primary school teachers expect a difficult day when it's windy), and a whole host of other factors.

They can also be influenced by how their parents are feeling, because our reactions are also inconsistent and dependent on how we're feeling both physically and emotionally, what else is going on in our lives and how much stress we're under.

Every household has its ups and downs, every parent shouts unreasonably at their child from time to time, and every child learns very early on exactly how to wind their parent up.

Being a good parent doesn't mean never getting angry, never storming out of the room, or never saying the wrong thing and making the situation worse.

It means showing up day after day and doing the best you can in the moment.

It means admitting your mistakes and knowing when to say sorry.

It means meeting their needs even when you're exhausted and stressed and sick and they're pushing all your buttons.

It means loving your child even when they're at their most unlovable.

It means watching your child sleep and silently promising you'll do better tomorrow.

A parent doesn't have to be perfect, just as our children aren't perfect. We're allowed to be human, just as they are.

My children have told me (regularly) that I'm the worst mother in the world. They've also told me (occasionally) that I'm - well, not the best mother in the world, but in the top four.

The truth, for all of us, is somewhere in between.

04/10/2026

Many parents of children in Year 5 or 6 are currently staring into the abyss.

Your children have coped so far, often in small, nurturing, single class entry schools where they know everyone and all the staff have known them since they were 4 - or even longer.

An EHCP has never been needed, because staff instinctively knew what support your child needed and adapted their teaching and pastoral provision accordingly.

But now secondary school applications are coming up, and none of the mainstream secondary schools you’ve looked at seems to be a good fit for your child.

They’re not behind academically, but they struggle with crowds, noise, transitions, staying on task, organising their possessions…

How will they cope in an environment where nobody knows them, their needs are competing with those of 200 other Year 7s, and every class will be in a different room, with a different teacher?

It’s worth having a conversation with their current Senco. How do they think your child will cope with the change? What support do they think your child will need, both over the transition period and once they are in Year 7?

If they agree that your child will struggle, but say they won’t get an EHCP if they’re not academically behind, or if they don’t have a diagnosis, or you can’t apply in Year 6, or you need proof that the current support isn’t working, consider applying for an EHC needs assessment yourself.

If a child is close to a phase transfer (eg, primary to secondary school), a needs assessment should look not just at what they need now, but also at the support they are likely to need in the next phase of education.

The threshold for a local authority to agree to a needs assessment is low - it is that a child has or may have special educational needs, and that as a result of those needs, they may need support under an EHCP.

If you believe your Year 5 or 6 child may struggle in secondary school and need a significant amount of support, don’t wait until they are already floundering.

It is possible to apply for the support they need *before* they fail, and that early support could make the difference between a child who sinks and a child who swims.

03/10/2026

Receiving comments like this really makes my day!

I know how much it means to have someone listen to you and to get the support your child needs, because I'm that parent too.

I also love it when people contact me to let me know how their child is doing once my involvement is over.

Knowing that a child is (or will be) happier and better supported and a parent has one less battle to fight because of the help I've been able to give is everything.

02/10/2026

We're into October now, and secondary school applications for children without an EHCP need to be submitted by the end of this month.

Even if your child is on SEND support at their primary school and you've written detailed information about them in your application, don't assume that information about the support they receive will automatically be shared with the right people and acted on at the schools you've applied to.

Before applying for a place for your child, try to speak to the SENDCo, either during the Open Day or in a separate meeting or phone call. Below is a list of questions you may want to ask.

- What is the structure of the learning support/SEND department? Is there more than one SENDCo, and what other duties do they have?

- How many students do you have with EHCPs? And how many on SEND support?

- Is there a learning support hub/nurture room? Is this accessible to all children with SEND, or only those with an EHCP?

- Do you have a support base/alternatively resourced provision which is accessible only for particular children with an EHCP? Is that separately staffed, or do staff from the ARP also provide support for other children with SEND?

- If a child has been on SEND support in their primary school, are they automatically added to the SEND register and put on a support plan here, or do you wait and carry out your own assessment? Does the SENDCo from my child's current school tend to send you detailed information, including copies of children's current support plans?

- How do you assess whether a child needs a toilet pass/uniform pass/leave early pass/time out pass? Would you follow the advice of their parent/primary school, or wait for them to demonstrate the need before issuing it?

- What is the likelihood of an LSA being in the classes that my child attends? Will this change as they move up the school?

- If a child is on SEND support, do all staff who come into contact with them have a copy of their pupil passport? Are they identified on the register? What arrangements are there for cover teachers?

Please feel free to add your own questions in the comments, especially if you have already been through this process yourself.

02/10/2026

This right here is one of my favourite parts of the day.

He's half awake, and he's snuggled up to me in his favourite position, with his arm up my sleeve. There's a reason I always wear short-sleeved shirts!

I'm already dressed and have made his packed lunch. His breakfast is beside us on the bed. In five minutes, an alarm will go off and I'll tell him it's time to eat his breakfast while I wake his sister. The quicker he eats, the more snuggle time we get before he has to get dressed.

Some days I hand each item to him one by one, other days I help him to put them on.

Of course, he can get dressed completely independently, but he gets distracted on school mornings. Because I'm already ready to go, I can concentrate on keeping him happy and on track, so that his school day has a calm start.

When he's dressed, I silently hand him his toothbrush and watch him brush his teeth, then we go downstairs and he has a cuddle with the dog while I fetch his shoes.

I can already hear the experts and parents of neurotypical children expressing horror that I'm not teaching him to do all these things independently.

The thing is, we both know he's capable of doing it all himself. But when you have an exhausting day ahead of you, don't you appreciate it if someone makes you a coffee in the morning and brings it upstairs for you, or gives your top a quick iron for you while you're in the shower?

School can be pretty exhausting for a child who struggles with sensory overload, finds writing difficult, can’t always decode social signals accurately and needs all their concentration to sit still and listen without fidgeting and interrupting.

Many of our children start the day with less battery power than their peers, and their batteries run down faster when they're at school.

I've noticed that the better things are going at school, the more independent he is about getting ready in the morning. By Friday, he's usually exhausted and needs more support.

A calm start and fewer demands in the morning can make the difference between a crash halfway through the day and a successful school day.

30/09/2026

This afternoon, I sat and watched my phone for about five minutes while the number of signatures on Tee-Jay Chetwynd - Young SEND Campaigner’s petition to save SEND rights increased every few seconds, with the final 100 signatures clicking through very rapidly to get to the 100,000 needed for the petition to be debated in Parliament.

It’s been a phenomenal push by a number of dedicated people to get the number of signatures up to this level over the last couple of weeks.

And now the real work begins.

Imagine the impact if everyone who has signed the petition wrote to their MP.

“The Local Authority unlawfully refused to assess my child. The refusal to assess was overturned at tribunal, and he is a different child now that he’s properly supported.”

“My daughter masked her difficulties in school until she was completely burnt out and unable to access school. She now receives an EOTAS package and has rediscovered her love of learning.”

“I’m a teacher. I have five children with different special needs in my class of 32, and no TA support. I do my best, but these children need more support than I can give them.”

“My child was injured when another child had a meltdown and threw a chair at her. The other child’s parents have been trying unsuccessfully to get support for them for years.”

“It was a fight to get here, but my child is thriving since his EHCP was finalised and he got a place in a specialist school which understands his needs.”

Please tell your story to your MP. Tell them what a battle it was, how many times you were let down, how many people acted unlawfully, how long you had to wait for your child’s EHCP, and what would have happened if you hadn’t been able to hold people at least partially to account.

And ask them to do everything they can to persuade the government to preserve those rights, so that people like you will be able to keep fighting to get the support their children need, and won’t have to do it with one hand tied behind their backs.

Write them an email or send them a letter for maximum effect, but even tagging them in the comments and telling your story here will be something.

SEND HUGS

15/10/2026

12/10/2026

11/10/2026

10/10/2026

08/10/2026

04/10/2026

03/10/2026

02/10/2026

02/10/2026

30/09/2026

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