Featured

Where to get help.

This is not much a post but rather a glossary of places to go for help. After all everyone needs support sometimes. I have tried to keep them to national level but you will find that your local council will be able to help you and point you in the direction of other agencies.

Support

Daisy Chain project

Carers together

Local Offer

If you google it, and your county council it will give you a link to the SEND services in your area offered by your council.

My blog 🙂 (pass it on to others)

Discounts

Max Card

Councils tax reduction

https://www.gov.uk/council-tax/discounts-for-disabled-people

Things to google

Blue badge

Carers allowance.

Things to think about

EHCP

DLA

School entry and type

Featured

Glossary of terms

Autistic meltdown: when an autistic person is struggling to process too much information at one time leading to feelings of high anxiety and stress. Often linked to times where they have had to mask or been flooded with sensory input. They will lose complete control of their behaviour and it is often mistaken for a tantrum. Can be expressed verbally or physically.

Blue badge: A parking permit that allows access to disabled and priory bays in most car parks and also reduces parking restrictions.

Carer’s allowance: a benefit you are entitled to if your fae receives the mid/highest levels of DLA (see below) and you meet specific criteria with regards to earnings and care. you will need to apply for it

DLA: Disability Living Allowance. A benefit that your fae is/may be entitled too. You can apply to central government for it once you have a formal diagnosis. The form is over 20 pages long and is generally considered to be agony to fill in. You will need supporting statements from professionals. I am writing a separate blog on this. Watch this space.

Echolalia: continuous nonsensical repetition of sound or a word. Sometimes referring to as audible stimming.

EHCP: Education Health Care Plan. A vital (and legally binding) document that states what provision needs to be in place for your child. It is vital, if you are considering a special school placement, that your child has an EHCP, and you can self refer to your LA to have assessment done to see if your fae meets the criteria to have one. You will need evidence. Keep every document you have stating the needs of your child.

MAAT: Multi-agency assessment team. When undergoing diagnosis you will find that a lot of people have input into your fae’s final diagnosis., they range from health visitors and GP’s to speech therapists and nursery workers. When they get all these people together to talk it’s call a MAAT meeting.

Masking: The trait of neurodivergent to hide or suppress behaviours when around neurotypical groups due to wanting to fit it. It can be exhausting and lead to autistic meltdown as soon as the person is removed from the situation they feel they needed to mask in.

LA: Local authority, the council for the area that you live that is responsible for providing education and health services to your family.

PDA: Pathological Demand Avoidance, a subset of conditions linked to ASD which can lead to conflict.

PPD: Post partem depression, depression a significant number of mothers feel after giving birth, normally but not always linked to hormone changes

PORTAGE: is a support model for ASD children and their families, it can also be used to help LAs assess children and direct parents to the most appropriate educational pathway for their child.

SENDIASS: Special educational needs and disabilities information and support service. These people know everything there is to know about guiding you through MAAT meetings, DLAs, and challenging decisions. If you are struggling to get anywhere then google you local SENDIASS and they will be able to help you.

Sensory Seeking / sensory avoidant being either over or under stimulated by sensory input, AuDHD/ neurodivergence can make someone both sensory seeking and sensory avoidant. Fun isn’t it?

Stimming / Stim repetitive movement / noise making that provides sensory feedback to a sensory seeking child. The Dictionary defines it as as:

  1. the repetitive performance of certain physical movements or vocalizations, as a form of behaviour by persons with autism or other neurodevelopmental conditions; self-stimulation. This behaviour is thought to serve a variety of functions, such as calming and expression of feelings.”stimming was part of her coping mechanism”

Don’t be shy; like, comment or share – it’s good to know we’re not alone with our struggles

A cat, a dog and the survival instincts of a depressed lemming

Over the last three weeks, our pets have been tag-teaming to see which of them can cost us the most at the vet.

The cat started it, because of course she did.

Or perhaps she felt it had been several months since the puppy ate something he shouldn’t and decided it was her turn to give us cause for concern.

Either way, as we were waving goodbye to a friend one sunny Sunday afternoon, she took the opportunity to limp out of the lavender hedge and begin crawling towards a neighbour’s car.

My cat has a very definite approach to injury and illness. She will dramatically allow you to catch sight of her before crawling away, every fibre of her being screaming, “Leave me alone to die!”

Obviously, we don’t.

Having dragged the poor beast to the vet, I was informed that she had been bitten in a fight; she’s sixteen; shouldn’t she be too old to be scrapping? and needed antibiotics and anti-inflammatory medication.

The vet paused. She looked at the cat, then at me and my somewhat scarred appearance.

“How is she at taking tablets?”

I may have winced.

The last time she needed tablets, she was three years old. It took two grown adults, cost four towels their lives and required us to wear motorbike armour just to get the things into her.

I can only assume my expression conveyed some of this because the vet nodded sympathetically and prescribed a liquid that could be mixed into her food.

Wonderful.

This cat can go for weeks barely sniffing at the food we give her. If she objects to what is being offered, she will happily go outside and hunt mice instead. She doesn’t eat the entire mouse—just the head. I think she likes the crunch. She then deposits the remains carefully on the floor, positioned so that you discover them with a bare foot before you’ve had the chance to put your slippers on.

Still, I scooped up the animal, the medicine and the first three-figure vet bill of the month and dragged everything home.

I bought expensive cat food in multiple brands and flavours because, as any cat owner will tell you, a cat will enthusiastically devour a particular meal exactly once and then refuse to acknowledge it as food ever again.

Then, thinking more clearly, I bought some canned tuna (which stinks) and used that to mask the medicine.

To my relief, the cat approved of the tuna and ate both it and the medication. Within a few days, she progressed from “at death’s door” to “where is the wretch who bit me? I demand a second round.”

Unfortunately, I can only assume the puppy resented the fact that the cat was getting tuna and he wasn’t, because the following Friday he decided to pivot while running at full speed and dislocate his shoulder.

I will be forever grateful that we have a vet I can call and say, “My dog is in pain,” and their immediate response is, “Can you get here in ten minutes?”

I got there in five.

He was given anti-inflammatories, painkillers and a cone of shame. I was instructed not to walk him or allow him to run or jump for a week.

I looked down at him.

He immediately tried to jump into my arms.

My only question for the vet was, “How?”

Apparently, that was my problem.

So I scooped up my puppy, his medication and the second three-figure vet bill of the month and went home.

Giving medicine to a dog is considerably easier than giving it to a cat. I had to give him a tablet, so I put it inside a chicken nugget.

He ate it.

That’s it. That’s the entire story.

After two weeks of poorly animals, I was finally beginning to see the light at the end of the tunnel when the dog came inside whimpering, shaking his head and scratching at his ear until it bled.

After consulting with my husband, we established that the most likely culprit was a grass seed lodged in his ear.

Great.

We couldn’t remove it ourselves, and the dog was making himself bleed. Having no better ideas, I wrestled him back into the cone of shame while my husband called the vet.

Again.

It hadn’t even been four days since his last visit.

By the time I took him back, he had waged war on the cone.

He won.

Its remains were scattered across the lawn.

His shoulder was healing, but because he was already taking anti-inflammatories, he needed ear drops rather than steroids. Getting ear drops into a dog who is never still requires two strong adults, a handful of treats and the precise timing of a Formula One pit crew.

This time, it wasn’t a three-figure bill.

It was ÂŁ90.

Yay.

I then discovered that we could upgrade his pet-club membership from Normal Muppet—which covers vaccinations and two vet visits a year—to Advanced Muppet, which covers all his vet visits.

The dog is now on Advanced Muppet.

Puppy tax (pre death of cone of shame)

According to the internet we need more cats

When my daughter was first diagnosed as autistic, I did what I’m sure many parents do: I delved far too deeply into the online rabbit hole of misinformation, anecdotal stories and personal accounts from autistic people and other parents in our situation.

I wanted to know everything I could. I wanted to start planning for anything and everything that might happen.

For anyone considering this particular avenue of research, it is a terrible idea.

Not only is every social media platform I use now full of “you might like” posts and suggested products designed to soothe, calm or otherwise manage behaviours adults find difficult—none of which work—but I have also created a remarkably personal doom-scrolling experience. My For You page now appears determined to predict every possible way my child’s future could go wrong.

According to the algorithm, she will grow up to have poor relationships, terrible mental health and a dependence on questionable coping mechanisms.

In short, I have inadvertently created my own online hell, with algorithms specifically designed to play on my worst fears.

Go me.

The internet now spends endless hours trying to convince me that my daughter will grow up with poor self-esteem, multiple forms of depression and an obsession with collecting cats as though they’re Pokémon.

None of this does anything helpful for my own anxiety, depression or current cat collection.

The only thing that eases me away from the nearest adoption shelter—and prevents an emergency trip to Costco to bulk-buy kitty litter—is listening to my daughter as she narrates absolutely everything she is doing.

She tells me about the house she is building in Minecraft. It’s purple.

She tells me about the videos she is watching on YouTube Kids, which are mostly about how to build better houses in Minecraft.

She tells me why mashed potato should be served in cubes.

I still don’t entirely understand the logic behind that one. Surely, once mashed potato has become structurally sound enough to be cut into cubes, it has ceased to fulfil the basic requirements of mashed potato.

This is apparently irrelevant.

I’m blaming Minecraft.

During one of these narrations, she informed me that she was “Minecraft rich” and that “being rich is a good thing”.

She then announced that she intended to become rich in real life as well—a goal I vehemently approve of.

On another occasion, she happily planted an entire collection of flowers while telling me that she was “the most beautiful girl in the world and so deserves flowers”.

I didn’t argue.

There is absolutely nothing wrong with her self-confidence.

This is a child who assumes she is beautiful, intelligent and destined for considerable financial success. She doesn’t think she needs to earn flowers through good behaviour, academic achievement or by making herself smaller and more convenient for other people. She deserves flowers because she is wonderful and flowers are nice.

Frankly, I’m taking notes.

The internet keeps warning me that autistic girls are particularly vulnerable to low self-esteem—that years of being misunderstood, corrected, excluded or encouraged to hide the parts of themselves that other people find inconvenient can gradually teach them that they are somehow wrong.

I don’t dismiss that risk. I understand why so many autistic adults speak about masking, burnout, anxiety and the lasting damage caused by spending years trying to perform an acceptable version of themselves.

But those accounts are not prophecies.

They are not a script my daughter is destined to follow simply because she shares a diagnosis with the people whose experiences I am reading.

Right now, I am not looking at a child who believes she is less than anyone else. I am looking at a child who expects the world to recognise her magnificence and is mildly surprised whenever it fails to do so.

Perhaps my job isn’t to build her self-confidence from scratch.

Perhaps it is to protect what is already there.

That doesn’t mean convincing her that she will never struggle or pretending the world will always treat her fairly. It means ensuring she knows that finding something difficult does not make her a failure. Needing support does not make her a burden. Communicating differently does not mean she has nothing worth saying.

It means teaching her that there is a difference between being asked to learn and being told to become someone else.

It means listening when she tells me that something hurts, overwhelms her or simply doesn’t make sense. It means resisting the pressure to measure her against children whose minds and bodies work differently from hers. It means making sure that home remains somewhere she does not have to perform.

It doesn’t mean stopping her from failing. She needs to learn how to pick herself up after losing a game, how to struggle and how to keep going. Every child needs resilience, but that doesn’t mean you can’t stand beside them, offering encouragement and cheering their effort.

Frankly, watching the mental gymnastics she performs to convince me that she actually won at chess or Connect Four is far more entertaining than simply handing her the victory.

Most importantly, it means paying more attention to the child in front of me than to the endless procession of strangers selected for me by an algorithm.

The internet knows that I have an autistic daughter.

It knows that I worry about her future. It knows which frightening stories will make me stop scrolling, which products I might buy at two in the morning and which fears will keep me clicking through to the next video.

What it does not know is her.

It doesn’t know about the purple Minecraft house, the cubed mashed potato or the flowers she planted in tribute to her own beauty.

It doesn’t hear her plans for becoming rich.

It doesn’t see a little girl who knows exactly who she is and currently sees no reason why the rest of the world shouldn’t be delighted by her.

The algorithm may have built me a personalised vision of hell, but my daughter is busy building something else entirely.

Hers is purple, full of flowers and, judging by the number of diamonds she has collected, extremely well funded.

My husband has just informed me that she is playing in something called Creative mode, so she has literally infinite resources.

Sounds even better.

The tale of the Secret Bunker

I don’t know if this is because of her recent obsession with Minecraft, a sudden fear of nuclear war, or a deep, unsatisfied desire to become a mountain troll, but recently my daughter presented me with several pages from her journal and a Very Serious Expression.

I was expected to understand the gravity of the situation from the marks she had made across several pages and provide constructive feedback beyond my usual parenting staples of, “Hmm,” and, “That’s wonderful.”

This posed a problem.

Because I think I would have had more success translating the Voynich Manuscript than whatever I was looking at.

After I had been staring blankly at it for several seconds, she huffed, removed the fluffy purple notebook from my hands and rotated it 180 degrees.

The new angle did nothing for its legibility.

With the exasperated tone I had previously assumed was reserved for preteens, she explained that these were the schematics for the new underground “secret room” she expected us to build in the back garden.

Well, I say us.

“Daddy works, so he’ll only be able to help on his lunch break and weekends. And I’ll want to play on my iPad. So you, Mummy…”

Wait.

What?

At what point did I qualify in engineering, construction, architecture or anything even remotely related that would make me adjacently qualified to project-manage such an undertaking?

Apparently, while I wasn’t paying attention, I became the principal contractor for a major subterranean infrastructure project.

While my brain was still rebooting from this revelation, she continued explaining the plans.

There would be bedrooms. Living rooms. A hospital. Two gardens.

Two.

Space for stores. Energy generation. Bathrooms. Waste disposal.

Honestly, I was impressed. It was more thoroughly planned than a lot of prepper bunkers.

She explained that the access shaft would have a ladder and a lifting mechanism so that the pets could be lowered down in their crates and harnesses. When I suggested stairs, I was informed that stairs would be completely impractical because of the space restrictions.

Obviously.

There isn’t room for stairs.

There is, however, apparently ample room for trees, chickens and a fully equipped hospital wing complete with X-ray machines.

When I asked where, exactly, she proposed putting this underground metropolis, she looked at me as though I were the idiot.

“Under the house and garden.”

Obviously.

Why didn’t I think of that?

I then made the mistake of asking who was actually going to build it.

She was very clear that she would “help, of course,” although presumably only when this didn’t interfere with her iPad commitments.

After giving the matter some serious consideration, she conceded that we might need to hire some professional assistance.

Ten builders.

For 70 days.

I don’t know whether to be more concerned that she thinks ten builders can excavate and construct a self-sufficient underground compound beneath an existing house in ten weeks, or that she apparently thinks I can fill in the gaps.

Finally, I asked the obvious question.

Why on Earth would we do any of this?

She blinked at me.

“Because it would be cool.”

And there it was.

The entire planning application.

The environmental impact assessment.

The business case.

Because it would be cool.

I feel this ranks only marginally above “because it’s there” as a justification for undertaking a massive engineering project.

No one is ever to teach my child the phrase YOLO.

Under any circumstances.

In the meantime, does anyone know where I can hire a digger?

Or the Paw Patrol?

The wrong end of the imaginary unicorn

I have touched on before the stereotypical idea that autistic people lack imagination.

I initially wrote “ASD sufferers” there, hated it immediately, stared at it for a while and eventually settled on “autistic people”, which is both considerably less depressing and doesn’t make autism sound like a particularly nasty bout of flu.

Anyway.

I have also mentioned before that, based on my experience with my daughter, the idea that autistic people lack imagination is absolute nonsense.

Recently, she has decided to provide further evidence.

For years now, she has insisted that several of the cuddly toys at her grandparents’ house are alive. Not metaphorically alive. Not “we pretend they’re alive while we’re playing” alive.

Alive.

They have names. They have personalities. They have relationships with members of the family. They apparently have their own motivations, preferences and, in at least one case, an extensive disciplinary record.

Jeremy is a bear who belongs to Grandma. He is generally reasonably well behaved and, as far as I can tell, causes very little trouble.

Pa has Percy.

Percy is a penguin.

Percy is frequently being potty trained, trying to find food or being put on the naughty step for some infraction that I have never entirely understood. Sometimes Pa ends up on the naughty step with him.

I have learned not to ask.

There are clearly complicated things happening within the social structure of my in-laws’ house and, frankly, I don’t need to understand all of them.

Recently, however, she has taken things to an entirely new level.

She has decreed—with all the authority of a medieval monarch handing out parcels of conquered land—that they now have their own pet unicorns.

There was no consultation process.

They were simply informed.

These unicorns are invisible to everyone except her and live either in her playroom at home or in her bedroom at her grandparents’ house. Each unicorn is a different colour. Each has its own personality. Each also has a different superpower, because apparently simply being an invisible unicorn is no longer sufficiently magical.

For reference, hers is purple and called Candyfloss. Grandma’s is pink and called Peppercorn, while Pa’s is blue and called Sky—which is a little confusing because she also has a number of Paw Patrol plushies bearing the same name.

Following so far?

Well done. Think yourself lucky. We get quizzed on this at least weekly.

Now we come to transport.

Obviously, if the unicorns live at both houses, they need to travel between them.

They travel on the roof of the car.

We drive a Honda Jazz.

I have no idea how three full-sized unicorns are supposed to fit on the roof of a Honda Jazz. I struggle to imagine three Labradors fitting comfortably up there, never mind three mythical horses complete with horns, saddles and supernatural abilities.

Nevertheless, this is where they go.

They are also, I have been assured, tied securely to the roof so they don’t fall off.

The idea that animals can be secured with a rope and will then obediently stay put is a concept I blame Minecraft for entirely. I don’t actually know if this is correct, but I have to blame screen time for something.

This raised questions that I should have known better than to voice.

I once made the mistake of asking whether the unicorns stood upright on the roof while we drove, or whether they were tied down on their backs.

The withering look I received could have melted steel.

No answer was forthcoming.

To this day, I remain unsure of the travelling orientation of the unicorns.

Personally, I feel this is relevant information. If I am driving down the A19 at sixty miles an hour with three invisible unicorns strapped to a Honda Jazz, I would like at least a basic understanding of the aerodynamics involved.

Apparently this makes me difficult.

When we arrive at her grandparents’ house, my daughter dutifully unties the unicorns and leads them inside.

Again, there are logistical issues here.

How do you get three full-sized unicorns through a standard front door?

How do you get them upstairs?

How do three unicorns fit into one bedroom?

Where do they go to the toilet?

Do they require hay?

What happens if one of them stands in front of the wardrobe?

These are all perfectly reasonable questions.

The answer is the same for every single one.

“They’re MAGICAL!”

Of course they are.

How stupid of me.

This arrangement has been going on for some time now, and the rest of the family has largely learned to accept that we are supporting the care and transportation of several invisible magical equines whose rules we neither understand nor are permitted to question.

I often watch in bemused sympathy as my daughter leads unicorns and grandparents on walks around the neighbourhood, insisting that Grandma and Pa hold the leads properly as they go. I sometimes wonder what their neighbours think. More importantly, I wonder which neighbour has the most interesting doorbell-camera footage of two grown adults sheepishly leading imaginary unicorns behind a four-foot child proceeding down the street with all the authority of a military general.

Grandma, however, recently made a serious error.

Last week she came downstairs after interacting with my daughter and the unicorns looking thoroughly exasperated.

She had been told off.

Apparently, she had put the saddle on the wrong end of her unicorn.

Grandma’s entirely reasonable defence was:

“I CAN’T BLOODY SEE IT!”

This argument was dismissed with a contemptuous wave of the hand.

Because apparently invisibility does not excuse incompetence.

You have a unicorn. You have responsibilities.

Learn which end is which.

Frankly, I’m relieved I haven’t been assigned one.

I don’t think I could cope with the pressure. I’d inevitably feed it the wrong thing, accidentally leave it behind at Tesco or strap it to the Honda Jazz backwards and spend the entire journey being silently judged.

No.

I’m quite happy with my own imaginary pet.

I only have a black horse.

It has flame powers.

And apparently it spends its time roasting the slugs in the garden.

Which is ridiculous, obviously.

Although considerably more useful than a unicorn.

Minecrafting a village

My daughter has recently entered that stage of development where she would rather spend her time fixated on a ten-inch screen than have anything to do with another human being.

I would like to say this is a phase she will grow out of, but realistically her father spends his working life staring at three screens and has successfully worked with the same two colleagues, across two different companies, for around a decade without ever actually meeting either of them.

Meanwhile, I spend my days either attempting to shovel sustenance down our daughter’s throat or attached to my own screen writing books, help guides and blog posts.

So genetically, the odds of her ever resurfacing into the real world are not in her favour.

Her first proper foray into the virtual world is, as I suspect is the case for many children of Gen Z onwards, Minecraft.

What I know about Minecraft could be written on the back of a postage stamp — something most of Gen Z probably wouldn’t recognise — with room to spare.

Most of my knowledge comes from teaching in the early part of this century.

And doesn’t that sentence make me feel old.

Back then, I occasionally had to settle disputes between friendship groups because someone had pushed somebody else’s sheep into a lava pit in retaliation for the theft of an Ender Pearl.

That sentence makes as little cognitive sense to me now as I’m sure it does to many of you.

I dealt with these situations in much the same way I dealt with most teenage arguments: adopting the facial expression of someone who completely understood the gravity of the situation while internally wondering why on earth anyone cared about a fictional sheep.

Apparently they cared deeply.

Fast-forward several years and Minecraft has returned to haunt me through my own offspring.

For the past few weeks, I have been making vaguely encouraging noises whenever an iPad is shoved approximately three inches from my face and I am instructed to admire various cuboid forms.

They are all purple.

Purple is her favourite colour, and therefore I assume that if my daughter ever becomes an architect, entire cities are going to look like they were designed by Ribena.

I have been shown a house.

A bed.

A maze.

Several caves.

And, on one memorable occasion, a guard horse wearing armour.

I did not have the heart to tell her that the guard horse looked suspiciously like a llama.

There also appeared to be a pig chasing a carrot on a stick in the background.

I didn’t ask.

There are some things a mother simply does not need to know.

Fortunately, her father has downloaded Minecraft himself and has become our resident translator.

He has reassured me of two important things.

Firstly, everything she is saying apparently makes sense. Words are coming out of her mouth that sound like the deranged babblings of someone several days into a fever dream, but apparently Endermen, Creepers, Redstone and Nether Portals are all legitimate things and not evidence that I need to contact a medical professional.

Secondly — and considerably more importantly — she is playing in a mode that does not allow her to interact with other humans.

Because while we are happy for her to disappear into her bizarre cube world, we are not happy for her to disappear into the internet.

There is a difference.

Yes, we want her to have friends.

Yes, eventually the online world is going to become part of how she communicates with those friends.

But her father and I have been around since the birth of the modern internet.

We know what people online are like.

We remember chat rooms.

We remember forums.

We remember being teenagers online while our parents had absolutely no idea what we were doing because they thought the computer was basically an expensive typewriter.

Frankly, the fact that our generation survived early internet access with nothing more serious than questionable usernames and an encyclopaedic knowledge of MSN Messenger emoticons is something of a miracle.

Our daughter is eight.

She is autistic.

She can be extremely literal, incredibly trusting and utterly convinced that everyone else is operating according to the same rules she is.

That makes the internet something we have to introduce carefully, rather than simply opening the door and hoping for the best.

And the statistics aren’t particularly reassuring.

Official UK data has repeatedly shown that a significant proportion of children experience bullying or harmful behaviour online. Research also suggests that autistic and other neurodivergent children can be particularly vulnerable to cyberbullying and online exploitation.

And bullying isn’t even the thing that frightens me most.

Children being contacted by adults online isn’t some hysterical parental fantasy. Grooming existed when we were teenagers sitting in chat rooms listening to the dial-up modem scream, and it exists now.

The technology has changed.

Human beings, unfortunately, have not.

So no, our eight-year-old isn’t allowed unrestricted internet access.

She isn’t allowed to chat with strangers.

She isn’t allowed into games where random people can contact her.

And anything with a chat box immediately makes me suspicious.

Maybe some people will think we’re overprotective.

I’m fine with that.

Because I don’t need to understand what an Ender Pearl does to understand safeguarding.

I don’t need to know why someone would build a purple cave, why a pig is chasing a carrot or why my daughter’s heavily armoured guard horse appears to be a llama.

I just need to understand the difference between allowing her to explore something she loves and giving strangers access to her while she does it.

So Minecraft stays.

I will continue to admire purple cuboid structures while having absolutely no idea what I’m looking at.

Her father will continue translating sentences involving Creepers, Endermen and whatever the hell Redstone is.

Our daughter can build houses, dig caves, construct mazes and apparently assemble an entire private security force consisting of badly identified livestock.

She can disappear into her bizarre little cube world to her heart’s content.

She just can’t talk to strangers while she’s there.

After all, her father and I survived the birth of the internet.

We remember what we were doing when our parents weren’t looking.

She doesn’t stand a chance.

Is this the 5 minute argument or the full half hour?

My daughter can argue with air.

I’d like to say that’s a metaphor, but I have genuinely heard her, alone in a room, having a full-blown argument when there was literally nothing there to argue with.

I like to think she’s simply honing her skills for a future career in politics.

Or law.

Either way, she’s developing an impressive ability to argue a point with absolute confidence regardless of whether reality wishes to participate.

I just wish she’d restrict herself to debating vacant spaces.

When she asks me to “play”, that innocent little four-letter word can mean any number of things.

Sometimes it genuinely means playing. Play-Doh. Colouring. Making bracelets. Water beads.

Sometimes it means body doubling. For anyone unfamiliar with the wonderful weirdness of neurodivergence, this is the inexplicable need for another human to simply exist in the same room while you do something else. In my daughter’s case, this usually involves me sitting nearby while she loudly disagrees with a YouTube video about Minecraft or cake decorating.

Then there’s the third category.

The dolls.

This isn’t really playing so much as being employed as a full-sized, unpaid, programmable puppet.

You’ll be handed several dolls before receiving a rapid-fire briefing on their names, ages, family relationships, favourite colours, pets, occupations, children and emotional baggage.

I hope you were taking notes.

There will be a quiz.

She then launches into a storyline that obeys neither the laws of physics, logic, time, nor child welfare.

Your role is to deliver whichever line has been assigned to your designated doll at precisely the correct moment.

Ad-libbing is forbidden.

Character development is forbidden.

Creative input is forbidden.

Any deviation from the approved script, however minor, will be met with the sort of withering look usually reserved for war criminals, and correction at sound levels that requires ear protection.

If you ever find yourself arguing with her, I’d like to offer some advice.

Don’t.

Whatever the subject, whatever your qualifications, however many decades of experience you have…

…you’re going to lose.

Accept it with dignity and move on.

I have a degree in Marine Biology.

I have nevertheless been informed, with complete certainty, that mermaids are real.

When I politely questioned the evidence, she informed me that if I didn’t believe she was a mermaid, she’d simply sit at the bottom of the swimming pool until I admitted I was wrong.

Approximately ten seconds later she resurfaced, looked me dead in the eye and explained that the room was actually upside down, the pool began at the ceiling, and therefore we were all standing on our heads.

You can’t really argue with that level of commitment.

My father-in-law spent his entire career working in colour printing.

Apparently decades of professional experience pale into insignificance when compared with a five-minute episode of Colourblocks.

My husband once made the fatal mistake of adding an unscripted line during one of her doll epics. Three generations were living in the doll’s house, a toddler had somehow become stranded on the roof, and he dared to improvise.

She immediately informed him that under no circumstances was he to add his own thoughts.

Attempting to salvage some parental dignity, he replied, “Philosophers are still debating whether free will even exists.”

Without missing a beat she replied,

“Philosophers don’t exist.”

That, as they say, was game over.

He laughed so hard he couldn’t continue.

To my knowledge, only one thing has ever defeated her in an argument.

The faucet at the gym. She came back from washing her hands absolutely soaked.

“What happened?” I asked.

She looked thoroughly offended.

“The tap was angry at me.”

Honestly…

…I can’t say I blame it.

Climb Every Mountain, Name Every Bean

We have survived another school year.

This one has been laced with more change than we normally allow. Which is to say… there has been some change. Our little fae has coped remarkably well in some ways and spectacularly failed to cope in others. Such is life with an autistic child. Milestones like the end of a school year always make me reflective. Birthdays do the same. They seem to encourage taking stock of where we’ve been and wondering how on earth we got here.

As I write this, I’m sitting in our usual quiet booth at the gym. For once, however, my long-suffering husband is not enduring the wait with me. Partly because somebody has to walk the dog (another one of those changes), but mostly because my incredibly generous mother bought me a car. We are no longer joined at the hip every weekend.

Our fae daughter greatly prefers my new car. Not because it’s newer. Not because it’s more comfortable.

No.

She likes it because it has a feature that allows you to make the car fart at unsuspecting passers-by.

I’m sure the engineers had a legitimate reason for including this function. I have yet to discover what that reason is. At present, its sole purpose appears to be making an eight-year-old collapse into hysterics while innocent strangers question every life choice that led them to that particular pavement. Also whether they are being gas lit by a car. 

I have time to write this because my daughter is eating lunch.

Well… “eating” may be overstating the situation.

She asked for beans.

Now, I am genuinely grateful that she is voluntarily consuming something with even a passing acquaintance to a vegetable. Unfortunately, she has decided that each bean requires an individual name before it can be eaten.

Not only that, but I have now been treated to the complete life stories of several beans, their extended family trees, and a lengthy explanation of why Tommy absolutely must be eaten before Mary so that Sarah doesn’t become sad.

I confess I don’t know why.

I confess I no longer want to know why.

I tried. I truly did.

But my will to live has bean and gone.

At this point I would honestly settle for her announcing that she’s finished so we can leave. Sadly, I know exactly what will happen next.

In about twenty minutes she’ll finally attempt a piece of chicken, declare that it’s cold, loudly inform everyone within a three-table radius that “the kitchen is stupid,” and refuse to eat any of it.

She refuses to acknowledge the laws of thermodynamics.

Energy, inconveniently, tends towards equilibrium. Heat flows from hot things to cold things. Food left untouched for two hours becomes… less hot.

Apparently this law of physics does not apply in her universe.

In her world, food should remain at precisely the temperature she considers acceptable for an unlimited amount of time, patiently waiting until she has finished introducing the baked beans to one another.

Honestly, I think Einstein overlooked this when developing his theories.

Next time I’m ordering her a salad.

At least lettuce doesn’t usually need introducing. It’s also easier to scrape into the bin. 

Sorry I’ve been busy…

So, I know I haven’t published on schedule for a week (or three). My apologies to the two people who might actually have noticed.

There are reasons for this. Two, in fact.

The first is that I decided to try and turn all my incoherent ramblings on this blog, along with some of the genuinely useful things I’ve stumbled across over the last five years, into a guide for anyone who ends up where I found myself when my daughter was diagnosed; sitting in a consultant paediatrician’s office, the door locked so your child can’t escape. The doctor trying to explain that your child is autistic while your child has absolutely no interest in the carefully selected toys the nurse is enthusiastically waving around. Instead, they’re alternating between trying to make a break for freedom and attempting to hack the NHS by commandeering the doctor’s computer.

It was… memorable, possibly traumatic.

I hope you manage to absorb more information than I did. We were three weeks away from moving 300 miles, the world was only just emerging from COVID so I was the only parent in the room, and my brain was doing its best impression of a Windows computer displaying “Not Responding.”

The whole appointment felt simultaneously incredibly significant and strangely anticlimactic.

I left clutching a single sheet of A4 confirming the diagnosis, the advice that my daughter should never be left unsupervised, and the instruction that she required one-to-one support in any childcare setting. I also acquired a handful of leaflets and a cheerful “Good luck!” as I was ushered out of the door.

A quick glance through the leaflets revealed they were about as useful as a chocolate teapot. We were moving in three weeks, so every local service they listed was about to become irrelevant. Most of them had waiting lists longer than some mortgages, and several professionals commented that three was “very young to receive a diagnosis…”

“…especially for a girl.”

Whenever I asked what they meant by that, they suddenly became fascinatingly interested in literally anything else.

So I wrote the guide I wish someone had handed me.

It’s a mixture of explanations for all the jargon everyone suddenly expects you to understand, practical advice on things like getting fae children to sleep or convincing them that food isn’t, in fact, a personal attack, where to find help, and how to tackle the endless mountain of paperwork that seems to breed in dark cupboards.

It’s not perfect. I’m sure there are things I’ve missed.

But it’s a start.

Also, I can’t draw to save my life, so the illustrations are AI-generated. If you were hoping for my artistic talents, you’re welcome.

The second reason for my absence is that, two weeks ago, I was diagnosed with a disability of my own.

Apparently we like to keep these things in the family.

I have hypermobile Ehlers-Danlos syndrome.

Apart from the overwhelming feeling of, “So that’s why I’ve been in pain for as long as I can remember,” I’m still working out exactly what this means for me.

On the bright side, over the next year I’ll probably become accidentally qualified to explain the PIP application process as well.

So… swings and roundabouts.

Which, it turns out, are now also on the list of things I should probably avoid.

Link to where you can buy the guide

https://raisingthemodernfae.etsy.com

Active Imagination

Whoever said that those with ASD have trouble with imagination never met my daughter. Actually, I suppose that depends on how you define “trouble.”

She absolutely has an active imagination. Too active. In fact, dragging her out of her reality and back into the real world is met with resistance that the Home Guard would have been proud of. I’ve seen terrorists with less conviction than my daughter when she’s told that she actually can’t fly and does, in fact, have to walk up the stairs.

I frequently wonder if she knows she doesn’t really have ice powers, that she can’t blast me with them, and that no amount of concentration on her part is going to cause the car to levitate.

She insists that “the cold doesn’t bother her anyway” (I can’t imagine where she got that from) and will happily attempt to go to school in summer uniform, shorts, and no coat or jumper regardless of climate change and the hailstones bouncing off the pavement around her.

She did cheerfully inform me that the hail was because I told her she couldn’t stay home and play with the puppy and so it was my punishment.

Fair enough.

She has also informed us that she used to live at the North Pole with other superheroes before coming to live with us. Frankly, I wish someone had told me this at the time. It would have saved me five days in hospital and fourteen hours in labour.

Apparently, at the North Pole they only had ice and polar bears to eat.

She’s been insisting on this for months, so eventually I caved and asked whether she’d seen Father Christmas while she was living there.

She stopped.

She frowned.

Then she informed me, in no uncertain terms, that and she had never really lived at the North Pole and Father Christmas was too busy to deal with such nonsense. 

Of course.

What was I thinking?

So apparently she has an overactive imagination rather than delusions, and I’m not entirely convinced that’s better when she can spend an entire car journey seriously explaining that the only reason her plush tiger doesn’t eat humans is because humans don’t fit in its bowl.

Which, admittedly, was a relief.

The tiger does apparently eat chickens, sea chickens, pigs, cows, and meat-flavoured ice cream.

I have no idea what a sea chicken is. I suspect it comes pre-seasoned.

I’ve also been informed that I have fire powers because I like things hot. By this she means that I prefer sleeping in a room that doesn’t actively have icicles hanging from the windows and that I drink tea.

I have also been known to wear a hoodie instead of treating goosebumps as a fashion accessory.

My husband, meanwhile, has “warm” powers.

I’m a little hazy on exactly what these are, other than being somewhere between mine and hers. Any attempt to gain clarification is met with eye-rolling and dramatic sighing.

She may only be eight, but she’s doing a remarkable job of being thirteen.

Achievement unlocked

I don’t want to jinx it or come across as bragging, but for two consecutive nights our fae daughter slept through to 5 a.m.! This may not seem like a full night’s sleep to those who have non-spicy children, but to us this is a miracle (and a lie-in).

It has been a gruelling few months of trial, error, and a sleep schedule that should probably be banned under the Geneva Convention, but we have hit upon something that sort of, mostly, works. It’s not straightforward or simple, and that is why it took us so long to get there.

To start with, we have had a strict bedtime routine nailed down since she was 18 months old. It starts the moment my husband finishes work at 6 p.m. No, it can’t be changed, and there is no room for flexibility. If we do change it, then either she doesn’t sleep or she will take hours to settle. So we don’t change it.

We have dinner at 6, and we have a “no tech at the table” rule. There is also no TV in the kitchen/diner. This is because getting Buzzy the Hummingbird to settle and eat instead of being away with the faeries is hard enough as it is without adding a screen for distraction. It also gives her an opportunity — sometimes the only opportunity in the day — to talk to her father and me about what she has been up to. While the answer we get is normally “nothing” or “I don’t remember,” I live in hope that creating a rigid, predictable space for conversation will eventually encourage her to use it. So far it hasn’t happened, but we’ve only been trying every day for 8 years.

After food, she toddles upstairs to brush her teeth (this is done with the help of a timer because otherwise 2 minutes would be completed in 2 seconds, her father, non-mint toothpaste, and a lot of walking about), and then has a bath or shower. Not only is this non-negotiable from a hygiene point of view, it signifies the end of the day. By the time she is in bed, we have had to braid hair, argue about what books to read, and sort out which soft toy needs to be in which area of the room.

That was before this recent bout of insomnia. Now we also have to make sure the room is no warmer than 17 degrees C, that the blackout blind and curtains are drawn, the humidifier is running and pumping out an obscene amount of lavender oil, the white noise machine is running wave sounds, and the white noise app on the iPad is playing binaural beats. We then squeeze her into a compression sleep bag (ours is from a company called Nesti), and she hops into bed like an oversized caterpillar and asks for her heated penguin and soft toy of the moment to be wedged into the bag with her. She will then burrow under a body pillow, a weighted blanket, and a normal duvet, shove on an eye mask, complain it’s too dark, and insist on a night light. No, we can’t miss a step. Yes, it would be simpler to not sleep in enough layers to survive an Arctic winter than have the AC running flat out (I would feel bad except it’s solar powered). No, we need the room in complete darkness or you can’t appreciate the majesty of the night light cycling through the rainbow. I assume the night light is for our benefit, as she insists on wearing a silk eye mask.

If you get this all correct, the moon is full and blue, and you have sacrificed a chicken to the correct goddess of slumber, she might make it through without insisting on telling you about aliens at 2 a.m.

If you get it wrong, you wasted a perfectly good chicken, a night’s sleep, and will get to hear all about the latest plans of the snake god Lulu to take over the magical kingdom.