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08/02/2026

The fuss about Merlin Entertainments and the changes to the Ride Access Pass have brought a common question out into the open.

“Why should your child get something extra that my child doesn’t have?”

Let me tell you about some of the things my child can’t do.

When his class went on a residential trip last year, he wasn’t able to stay overnight and enjoy the fun.

When they went to a museum and dressed up as Victorian children, he was unable even to wear the flat cap I offered him.

When they had their Christmas carol service, he was too anxious to attend.

He can’t participate in class assemblies, plays or performances.

He has never visited the home of any of the friends he has made in almost two years at his current school.

He can’t attend birthday parties or family celebrations. The thought of having an actual birthday party of his own fills him with terror.

He can’t go to school discos or film nights, enjoy a shopping trip, or go to a theme park.

He’s never had a friend over for a sleepover or been to a sleepover at a friend’s house.

He gets cold in winter because he can’t wear long school trousers.

He finds writing by hand very difficult and so can’t demonstrate his knowledge and ability easily at school, which causes him intense frustration at times.

He has a very limited diet and can’t just go to a restaurant or café and choose something he likes to eat.

He can’t access after school clubs, sports teams, cubs, or other organised activities outside school.

That’s just the tip of the iceberg.

So in answer to the question, why should my child have something your child doesn’t, my answer is this.

If it enables him to do just one of the things your child does easily without even thinking about it, why would you begrudge him that?

07/02/2026

Something I’ve heard a lot over the last few days is that parents of neurodivergent children are just “seeking a label”, and exaggerating or even making up their child’s difficulties for the sake of “privileges” like being able to avoid standing in queues at theme parks.

Here are some of the things I’ve done in the last week.

- Anxiously scrutinised my child’s teacher’s face at pick-up time for signs of whether he has had a good day and felt my stomach churn as the teacher caught my eye and said, “Can I have a word?”

- Sat in the car outside my house crying as the realisation sank in that yet another important rite of passage is to be denied my child.

- Finally got the EHCP my child needs, which has taken more than three times the maximum amount of time allowed by law.

- Had two mainstream schools say not only that they can’t meet my child’s needs but that they believe no mainstream secondary school will be able to.

- Taken my child back to school after nurturing her through a two week absence, only to find that she has been moved to a different class for a key subject during her absence and nobody had thought to tell us.

- Cancelled three events that my child was not able to attend on the day due to severe anxiety, in each case losing the money paid in advance because the cancellations happened at the last minute.

- Been told my children’s problems are insignificant, and only the result of bad parenting anyway.

- Worked through two nights because it’s the only chance to get the peace needed to concentrate on the detailed information involved.

- Had to replace items that were damaged when a child was distressed.

- Written emails begging for support, suggesting alternative approaches, apologising for incidents and explaining school absences.

I love my children desperately, but there is no doubt that being their parent is a much more intense and often heartbreaking experience than parenting neurotypical children.

When you see a parent fighting for their child’s right to something, just remember - we didn’t start out this way. We were forged into the parents our children needed by a long and brutal process.

07/02/2026

A few people have asked me about DLA, and DLA applications are not something I support at the moment. This is a really helpful resource for anyone who is struggling.

To all my fellow paperwork hiders and DLA form avoiders 👀

If applying for DLA feels overwhelming, please go and click through the photos on my page. If you scroll down, you’ll find lots of DLA tips like the ones shown here.

They’re designed to show how much detail is actually needed, how to expand everyday situations, and include example wording to help prompt you.

I’m not currently supporting DLA applications, but I have had feedback from parents that these tips have helped them understand and successfully secure DLA, which is exactly why I’ve left them up.

If your brain freezes when faced with forms, start with the visuals below from my photos, and use the info in the caption. One box & one step at a time. I think there are about 10 in total

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06/02/2026

Today I was asked to participate in a phone-in on the JVS Show on BBC Three Counties Radio about the decision by Alton Towers to restrict the use of its Ride Access Passes (RAP).

There are a number of misunderstandings at play in discussion of this issue.

First, there is a difference between a RAP and a Fast Track Pass (FTP).

A FTP is something anyone can pay for. It allows you to jump the queue.

A RAP lets you join a virtual queue. You wait as long as everyone else, but you don't stand in the queue with them while you wait.

To get a RAP, you need to give evidence of your disability to a third party company which verifies your need for it. The evidence can include confirmation that you are currently receiving disability benefit, a doctor's letter, an OT report, a care plan, or something similar.

So for those who argue that anyone can claim they're autistic or have ADHD and get a RAP - this is untrue. Even with a diagnosis, not everyone will qualify for DLA or PIP or be able to provide the evidence required to get a RAP.

Secondly, autism is a spectrum, not a continuum. We're not "all a little bit autistic". One autistic profile can be very different from another - when you've seen one autistic person, you've seen one autistic person. Some can cope with crowds; others can't.

Thirdly, the fact that more people are diagnosed with autism and ADHD now doesn't mean they're making it up, or it's a trendy label that parents want for their children, or they're being overdiagnosed. Recognition and diagnosis methods have improved over the last couple of decades, so the people who always had these conditions now have a better chance of being diagnosed.

Saying the increase in the number of people diagnosed is due to an increase in the number of people who have the conditions is like saying there are more stars in the sky since the telescope was invented - there aren't more of them, but now we're better able to see them.

This is partly as a result of reasonable adjustments like the RAP, which allow people who would previously have had to stay at home to enjoy family days out.

And that's why people are upset that this is being taken away from them.

05/02/2026

Well, what a morning!

Two mainstream schools have now seen my son's EHCP and said they can't meet need. I've seen their responses, and I can't argue with them - I'm not going to appeal, because I agree with their reasoning and am not confident that his needs can be met in either setting. My choice of school was always a case of "this is probably the least unsuitable" rather than "this is the most suitable".

Both schools suggested that the LA should consider a specialist setting. I'm grateful for the care they've put into their responses and their honesty.

There's an independent special school that I believe could meet his needs. It's full, and because it's independent, it doesn't have to consider him.

There are a couple of mainstream schools with Additionally Resourced Provisions which the EHC Coordinator has agreed to consult with, and a couple of mainstreams that she's waiting to hear back from.

We discussed one state special school that she's agreed to consult with.

We also discussed independent schools. If no maintained school can meet my son's needs, this may be the only option for a school setting - if we can find any independent schools that can meet his needs.

It's been said before, many times and by many people. For a child who has significant needs but is academically able, there are very few suitable placements out there, and huge numbers of children needing them.

The next few months are looking uncertain - not just for us, but for thousands of others like us.

04/02/2026

One of the issues I'm coming across time and time again is that it's taking local authorities so long to complete EHC needs assessments that by the time an EHCP is eventually issued, it's already out of date.

Things may have moved on at school in particular.

Emotionally based school non-attendance may have worsened. Compare your child's attendance statistics at the time of the original EHCNA request to the statistics when you receive the draft EHCP. Has your child's attendance worsened? Has the school done anything to address this? Has this helped?

At least a couple more cycles of APDR (assess - plan - do - review) SEND support will have been completed. Has any new or additional support been put in place for your child? Has your child met any targets or had new ones added?

Has your child taken any exams or internal assessments? Have you received any more school reports? Has your child made the expected academic progress?

Has your child had any significant illnesses? Has their physical condition deteriorated? Do they have any new diagnoses? Have any assistive devices such as hearing aids, wheelchairs or AFOs been prescribed?

Has the support provided in school changed? Does your child now use a writing slope, a laptop or a communication device? Does your child get any additional small group or one to one support? Have they been signed up to Nessie, Lexia, or any other computer-based support? Are they regularly taken out of class for one to one or small group interventions? What difference has the change in support made?

Have things changed at home? Is your child sleeping better or worse? Have their medications changed? Have you seen an increase or decrease in dysregulated behaviour?

Have they had any further assessments which did not form part of the EHC needs assessment process, and have you passed on the reports to the LA?

If any of these changes have happened and either your child's actual needs or your understanding of them have changed while you've been waiting for the needs assessment and draft plan to be completed, make sure you gather together all available evidence of the changes and request the relevant changes to the draft plan when it comes.

03/02/2026

03/02/2026

I won an empty victory yesterday.

63 weeks after I applied for it, my son's EHCP was finalised. They even accepted all the comments I'd made on the draft, and put through pretty much all of my proposed changes.

I should be delighted - I've been fighting to get him the right support since before he started school.

Unfortunately, although it's been finalised, it's not actually complete. He's due to start secondary school in September, and there's no secondary school named. The school we wanted has been consulted and has said it can't meet his needs.

I literally can't think of a single other school I could send him to.

The choices available to me are to appeal (and how long would it take for that to be decided, and would we even succeed anyway?), to send him to a school that I believe definitely can't meet his needs and wait for the inevitable failure and crushing of his spirit, or not to register him at any school from September and to home educate him instead - if that even remains an option if and when the Children's Wellbeing and Schools Bill becomes law.

There are parents all over the country facing this reality right now. Parents whose children have been let down in the most monumental way by a system that doesn't see the urgency in addressing a child's needs as early as possible, and by people who are so overwhelmed that they delay assessments and put off decisions for more than three times the amount of time allowed by the law, even when they must know those delays could be catastrophic for a child's education and future.

In each child's life, the start of each new phase of education only comes round once. If you miss the boat and all the places are already full, it can change the course of their whole life.

We keep talking about the SEND White Paper and the need to preserve our children's rights.

What rights?

If the law isn't observed and justice takes over a year to be meted out, those rights mean nothing.

So yay, I've got a piece of paper in my hand that describes exactly what my son needs and is legally entitled to receive to be able to access secondary school.

And right now, it feels as pointless as this pencil.

02/02/2026

The attitude of many professionals to parents became apparent to me as soon as my first child was born. She was whisked away at birth to have a cannula inserted and a first round of antibiotics administered, but I was told nothing about the reason for this.

She was less than 24 hours old when they took her away for a lumbar puncture - "just so we can get the full picture - nothing to worry about".

When she was three days old, we were rushed down to SCBU in the middle of the night, where she was hooked up to all sorts of scary machines, but it was still "nothing for you to worry about".

I wondered why they were being so fussy and insistent about certain aspects of her care, while still assuring me there was nothing to worry about and refusing to give me any meaningful information.

It was only when she was discharged at 9 days old that I saw her discharge papers and discovered that she had had sepsis and acute kidney failure. Despite my having a string of letters after my name and a well established background in research (not, admittedly, in the medical field), nobody wanted me to worry my pretty little head about what was actually wrong with my baby.

Fast forward to the day a teacher who taught my child for six hours a day, four days a week, term time only, in a class of 32 children, explicitly told me that she knew my child better than I did because she spent more time with her than I did, and you basically have the whole history of my experience of parenthood.

If you're a professional dealing with a child, please remember that the parent who comes with that child knows their history from before birth, their family background, their childhood illnesses, their food preferences.

We've been on holidays with them, facilitated their play dates, got to know their friends, nursed their booboos, encouraged their adventures, been to their medical appointments, helped them with their homework, comforted them when they had nightmares or fell out with their friends.

We've followed every step of their journey to this point, and we'll follow their future journey for as long as we live.

If you listen and work with us, we might just have something useful to say.

01/02/2026

EDITED TO ADD: Please see Vicky Louise’s comment below and my screenshot from the statutory guidance - the absence does NOT have to be recorded as unauthorised. While I still think it’s illogical to mark a child who has attended the majority of the session as absent, this makes the guidance considerably less unreasonable than I thought it was.

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Two things I find especially annoying and upsetting are unfairness and illogicality.

There's one part in particular of the statutory attendance guidance that I find both unfair and illogical. It annoys me every time I think about it.

The problem is with the way attendance is marked if a child arrives at school late. The guidance says the register should stay open for a maximum of 30 minutes. If a child arrives late, but before the register is closed, they receive a 'late' mark. If they arrive after the register has closed, they are to be marked absent for the whole session, and that absence is automatically treated as unauthorised.

Let's unpack this a little bit.

If, as we are told, keeping an accurate register is a safeguarding issue, and schools need to know who is in their care in case of fire or other emergencies, how is it right that a child who is present in school can be marked as absent?

And if you have a child with special needs or mental health issues who really struggles to get into school, what incentive do they and their parents have to get them into school if arriving at school late will mean that they are given an unauthorised absence mark?

This is especially the case if their mental health issues mean that if they failed to turn up to school at all, their absence should correctly be recorded as an authorised absence due to illness.

The guidance gives no leeway on this. Arriving after the register has closed is what you might call a strict liability offence - there is no defence against the unauthorised absence mark, and no way the "absence" can be treated as authorised, unless the child is on a pre-agreed reduced timetable (in which case they are, strictly speaking, not "late" in any case).

Why is the government setting children up to fail in this way? Did nobody read the guidance before it was published and question whether this was a good idea?

Or were they so obsessed with the idea that parents are irresponsible wasters who can't be bothered to send their children to school and that children are idle truants who can't be bothered to learn that they deliberately chose to ignore all the legitimate reasons which might make a child late?

31/01/2026

I regularly talk to parents of neurodivergent children who are terrified that they're not doing enough to help their children become independent adults.

Part of the fear comes from the way children are constantly being pushed to step up to the next level.

We don't enjoy cuddling our newborns, because we're told they need to learn to self soothe.

Toddlers have to be "ready for school".

4-year-olds are criticised for wanting to run around and play rather than sitting still at a desk.

We're told children in Key Stage 1 need to learn to behave like Key Stage 2 children.

As soon as they hit Key Stage 2, they're expected to start getting ready for secondary school.

And when they get to secondary school, they're pushed to prepare for adulthood.

Parents whose children need more reassurance are condemned as "helicopter parents", and schools disapprovingly say things like, "Mum's terribly anxious."

What many of these critics don't see is what comes first.

Are our children clingy because we're always hovering around them, or do we stay close to offer reassurance because they're anxious?

Are they unable to do their buttons because we help them too much, or do we continue to help them because they struggle more than other children with fine motor skills?

If a child is slow to learn a new skill or develop independence in a particular area, this is not a sign of moral failure in either the parent or the child.

The education system wants to force our children to race through their childhood at breakneck speed.

Some children need a slower pace and more support along the way. They reach milestones when they're ready, not when the Department for Education says they should be there.

My daughter could ride a bicycle without stabilisers at 3. My son is still nowhere close at 11. Most children fall somewhere between the two.

Childhood is not a race to independence and adulthood. It's a golden, carefree time to cherish and enjoy. As parents, we should be allowed to embrace that, however long it takes.

And if it means more cuddles along the way - well, I'm not complaining!

30/01/2026

Five years ago today, we hit a major milestone in our parenting journey - my daughter received her diagnosis of autism with PDA.

It was the first time I'd ever heard of PDA, and I immediately ordered the books that were recommended in her diagnosis report and then went to the PDA Society's website to find out more about what we were dealing with.

There were things that had happened in her first eight and three quarter years that I'd never understood and had always taken to mean that I was a terrible mother. Other things, I'd taken as unique little quirks of my daughter's character. Others just had me scratching my head and wondering what on earth was going on in her head.

Every single one of these traits, quirks and puzzles was set out there in black and white. I had never read such a complete and accurate description of my child.

Just weeks later, someone said to me, "I don't care what label you've got for your child!"

It isn't a label.

It's shorthand for everything that explains who she is, why she's so special and why she's so good at some things and struggles so much with others.

Nothing really changed the day we got the diagnosis, but at the same time, everything did.

Our beautiful, amazing, complex, brilliant child didn't change.

But it was as if we'd been navigating her life with the wrong map, and every turn we were taking took us deeper into alien territory.

The diagnosis gave us a new map - one which looked different and sometimes scary.

The road is still often muddy and obscure, and we still often take wrong turns, especially when we're tired and other people are yelling at us to follow them.

But the more we try to follow the new road map, the more the journey begins to make sense.

And we couldn't love her more.