Support for SEND

27/01/2026

Rachel Filmer from SEND Rights Alliance summarising the [supposed] leaks from the upcoming SEND reform white paper.
I wholeheartedly agree with what Rachel says and that - if true - these proposals would not correlate with providing the right support, for children and young people, at the right time, and any removal or reduction of SEND-based legal rights would only have a damaging effect on children and families, not a supportive one.

22/01/2026

It's very easy to assume that a child or young person 'won't' do, or stop doing, something, when it's actually the case that (for a variety of reasons) the child or young person 'can't' do, or stop doing, something.

But 'can't' can develop into 'can', with appropriate support.

'Can't' won't develop into 'can', if only ever treated as defiance.

20/01/2026

Current law regards requesting an EHC[P] needs assessment!

20/01/2026

A shout out for the small, private exam centre that one of my children will be using this summer.
From email and phone call correspondence to my child's transition visit - the team have been brilliant, so far and we feel in safe hands.
and too.

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19/01/2026

High masking doesn't equate to 'high functioning', nor is it always an accurate assessment of real support needs.

❤️🧡💛💚💙💜

17/01/2026

Often, when a SEND advocate puts out a post about how school isn't the right environment for every child's period of education and how, for some children, the school environment can be traumatic and do far more harm than good - there is always a comment from somebody saying something such as,
"Never harmed me or my (now adult) kids!"

And every time that I read a comment like that, I literally do sigh and pull a face, like the picture because that sort of comment just ignorantly suggests that parents and carers - like myself - who have had a child in mental health crisis, because of the school environment, are just making things up!

So, no Peter/Joan/Elaine, etc, we aren't making these things up - school really can be the wrong place for some children to be educated!

And much like I haven't experienced living with type one diabetes, first hand - but I can acknowledge that it is medical condition and empathise that it likely has a great impact on a person and their family's life - so I don't post daft comments about it on the internet - perhaps Peter/Joan/Elaine, etc, you should refrain from the 'I haven't experienced it so it can't exist' comments, too!

🙃

17/01/2026

11/01/2026

10/01/2026

ℹ Needs Assessment VS Carer's Assessment from Contact - For families with disabled children

Many families are not aware that there are two different social care assessments, each with a distinct purpose.

A Needs Assessment considers whether a disabled child and their family require additional support from the local authority, and what services may be provided to meet those needs.

A Carer’s Assessment focuses on the parent carer and must consider physical, emotional and mental health, wellbeing, employment, housing, relationships and other factors that affect their ability to care.

These assessments are separate. You can request either or both, and one does not replace the other.
Eligible children and carers should receive a written plan setting out support, outcomes and review arrangements.

More information about social care assessments and legal rights is available at 🔗 https://contact.org.uk/help-for-families/information-advice-services/social-care/needs-assessments/

10/01/2026

Great summarised explanation of the PDA nervous system.

Understanding the PDA Nervous System
Why It’s Not “Won’t,” It’s “Can’t”

If you really want to understand PDA, you have to understand the nervous system underneath it.
Because PDA isn’t about personality.
It’s not about behaviour.
It’s not about “choices.”
It’s a physiological profile, a brain-body system wired to detect pressure differently.
And once you understand that, everything about PDA makes sense.

A PDAer’s nervous system is built on protection first

Think of the PDA nervous system like a highly sensitive alarm system.
It wasn’t designed for compliance, it was designed for survival.

Demands, big, small, spoken, unspoken, all get processed as:
⚠️ pressure
⚠️ loss of autonomy
⚠️ potential overwhelm
⚠️ threat to safety

Not because the person is dramatic.
Not because they’re avoiding responsibility.
But because their body sends a signal that says:
“This is too much right now.”

So what counts as a “demand”?
Here’s the part many people miss:
• “Time to get ready.”
• “Can you turn off your game?”
• “Let’s go.”
• “Choose one.”
• Routines
• Expectations
• Social interactions
• Even their own goals or plans

For a PDAer, these can activate the same part of the nervous system that responds to danger.
This is why they may freeze, negotiate, avoid, explode, comply then collapse, or mask until burnout hits.

The PDA nervous system moves FAST
A PDAer can switch states quickly:

Regulated → Activated
A tiny shift in tone, urgency, or expectation can send them straight into fight/flight.

Activated → Panic
Once adrenaline hits, logical thinking shuts down.
You’re now dealing with a survival response, not a behaviour.

Panic → Shutdown
If they can’t escape the demand, their system may go flat, numb, or inward.

None of this is conscious.
It’s neurobiological.

Why the nervous system reacts this way.....
PDAers often have:
✔️ High interoceptive sensitivity (or low — both can be overwhelming)
✔️ High threat perception
✔️ High sensitivity to control
✔️ Difficulty regulating once activated
✔️ Strong need for autonomy to feel safe
✔️ Intense emotional experiences
✔️ Deep thinking + anxiety loops
✔️ A history of masking or misunderstanding

It’s a profile wired to stay in control to stay safe.

And here’s the part families need to hear:
When a PDAer resists, avoids, panics, argues, or shuts down when faced with a demand…
They are not being difficult.
They are not being oppositional.
They are not manipulating you.
They are protecting their nervous system the only way their body knows how.

What helps the PDA nervous system feel safe?
Predictability without rigidity
Collaboration instead of instructions
Declarative language (“I’m wondering…”)
Choice and autonomy
Low-pressure environments
Humour, connection, shared control
Pauses and gentle pacing
Interest-led engagement
Non-judgmental co-regulation
Removing shame from the equation

Safety first.
Connection second.
Then maybe ..... maaaaaaybe ......the demand can be explored.

If you take nothing else from this,
PDA isn’t a behaviour problem.
It’s a nervous system profile.
And once you support the nervous system, everything else can soften.

08/01/2026

For various reasons, I have had to get out the paper work 'stack' that relates to one of my children('s SEND).

Now, many other parents and carers will have a far bigger 'stack', and some parents and carers will have an absolutely huge 'stack' (that may even be neatly organised into folders, with coloured dividers - something that I could only aspire to achieve); however, whatever size 'stack' of paperwork that parents and carers keep, it's worth remembering that every piece of paper that creates that stack represents a telephone call a parent carer has had to make; an email a parent carer has had to send; or an appointment that a parent carer has had to take their child to.

So with such hideous things being written in the press, at present, about SEND parents; consider whether any parent or carer would actually put themselves through that level of time and effort, if their child wasn't experiencing substantial struggles that required additional support to alleviate.

06/01/2026

Beyond Autism state that '70–80% of autistic children and adults experience or have experienced mental health problems in their lifetime'.

If your child or young person is experiencing mental health difficulties, remember that their mental health should be given equal priority to their physical health and if they are unable to attend school because of these difficulties, yet are being penalised, this equality was enshrined in law, in the Health and Social Care Act 2012.

https://www.beyondautism.org.uk/about-autism/understanding-autism/mental-health/