The pitfalls of kitchen diagnoses

Photograp of a remarkably triangular hole in grey stone, filled with water, reflecting trees and sky ©careerusinterruptus

Mr Pixel got diagnosed again this week. Twice.

I’ve lost track of how many times he’s been diagnosed, largely because I’ve never paid anyone to do it.

Instead all his diagnoses have come gratis, courtesy of friends and acquaintances, in parks, school, living rooms, and kitchens. Some people have spent up to ten minutes chatting with my son; some didn’t talk to him at all. They just looked.

None of them are, you know, qualified. In lieu of degrees and professional specialisation, they have their own quirky kids – and often indeed, their own quirks – and what they diagnose is invariably behaviour they recognise.

That’s not entirely unreasonable. After all, it’s usually behaviour that catches the parent’s eye, and in the first instance that’s what we’d describe to a professional. But the professional delves deeper, looking for patterns. These patterns don’t depend on one presenting trait. They are found through testing: dozens of questions, carefully analysed through the lens of statistics and the specialist’s years of training and experience.

Please note: I am NOT saying that specialists always get it right. Of course they don’t; they have their own biases and blind spots, just like the rest of us. In my experience specialists tend to have the same problem as the bloke with the hammer: they’re excellent at finding nails, and if the issue lacks a flat top, and also happens to have wings, well heck. They’ll ignore those fiddly details and bash away anyhow. Even so, I tend to think they’re more likely to get it right than Playground Mom.

Because besides the sheer amount of time they’ll spend figuring out your kid, the reason you need an expert – someone who does precisely this, all day, every day, for years – is that a bunch of different conditions can cause behaviour that, on the face of it, looks the same.

As one friend put it, “Gifted + anxiety looks like an awful lot of stuff. Add trauma and it’s anyone’s guess what’s really going on.”

Mr Pixel ticks all three of those boxes (gifted, anxiety, trauma) but – and this is key – you wouldn’t know that unless you were thoroughly versed in his entire history, had read lots about each specific thing he’s been through, and you’d spent enormous amounts of time shifting the puzzle pieces about, trying to get a clear picture. And you were really, really, strongly invested in helping him understand himself. Like if you were, say, his Mum.

Like his Mum has, in fact, done, for the past eight years, ever since a kindy teacher commented on his rearrangement of two coloured blocks in a wall. Mr Pixel – who at that age wanted to be a policeman because he loved the lights and the checks – just thought it looked better, but she saw it as “very mathematical” and thus, “quirky”, adding, “Not enough to get a diagnosis, mind.” And this was before the trauma kicked in, before there was anything remotely concerning, or confusing, to me.

It’s undermining, though, when someone says something like that. I want to do right by my kid, and if there are accommodations that should be enplaced, I want to know about them, right? Plus, over-thinking. Mr Pixel’s anxiety didn’t come from nowhere. So every time someone ‘diagnoses’ him, back down the rabbit-holes I plunge, wondering whether I missed something the first 1,487 times.

And every time, I come up empty-handed, because the things I know about (gifted, anxiety, trauma)—yep, they still seem to cover everything. Then I get a little mad, because I’ve wasted time and precious scarce energy, and because someone implying that in a short observation they can see things I can’t, is pretty insulting, when you think about it.

And then I get anxious, because I could still be wrong (or kidding myself), even though 1,4878 searches, and even though people who know Mr Pixel really well and spend a lot of time with him each week, don’t see what others somehow manage to discern, in five or ten minutes.

And then I get sad, because I feel that neither my kid nor I are being fully, truly seen.

And then I get a bit more sad, because when these diagnoses come from people who have heard but either forgotten or dismissed large parts of our story, I don’t feel heard, either.

I know how easy and tempting it is, to share your hard-won knowledge. I’ve done it myself. A couple of times when I’ve felt friends kids’ diagnoses were missing the (to me, obvious) gifted aspect, I’ve jumped in with my two cents’ worth, pointing out the similarities between their kid and mine, and the little I understand about the ways in which misdiagnosis can occur, all super keen and helpful-like.

The question is, if you don’t know the whole story, if you don’t know the child really well, if you haven’t listened long and hard, and above all, if the parent didn’t ask for your considered opinion, who is your diagnosis helping?

Being the tree: Emotional OE is my superpower

I confess: I’ve already fallen off the shower bus.

It wasn’t so much that I couldn’t be arsed; I just kinda forgot showers were a thing. Sure, in the middle of summer here in the sub-tropics, you’d think showers were THE thing, but apparently there’s nothing that can’t slip off the list, if enough other things come along. And I’m so fucking tired.

I mean, it did kinda bother me that I’m this tired, when ‘all’ I do is a bit of homeschool (irregularly; badly), a bit of housework (ditto), and look after Mum three or four times a week. Many women do far more. Heck, my sister keeps in close touch with her adult children, keeps house immaculately, does Mum’s shopping, cooking, medicals, and spends more time with her, as well as working. SHE showers.

Of course, I also have a hefty mental load. Even with our slapdash approach to schooling, someone is always in my ear, talking about cow snake morphs, rapping, or wanting to start a blog. That occupies bandwidth along with figuring out what’s for dinner every night and making sure we have ingredients, knowing what time their piano lesson is, remembering when school holidays are, and that the cat’s nearly out of food.

But that’s still, all kind of normal, right? It’s what women do, otherwise there wouldn’t be articles like this. And this. And, this.

But that last piece did something that bugged me, that you often see in stories about invisible labour: ignoring (or ignorant of) the term’s origins, Hartley uses ‘emotional labour’ to describe the process of finding a cleaner.

Which, okay, it can be, especially if you’re ADHD, socially anxious, bone-sappingly tired, or ashamed of needing someone else to clean your house. She wasn’t talking about that, though. In fact she wasn’t talking at all about what I think of as emotional labour, which is the heavy lifting you do all day, every day, when someone, or everyone, in the house, has emotional over-excitability.

The flare of excitement today when we saw our first Red Triangle slug in the gutter where we’d parked; the urgency of looking it up. So big! So white! Such strange markings!

The huge tension when we tried (and failed) to rescue the slug, because left there the poor thing wasn’t safe.

The several reassurances that I’d back up to leave, rather than drive forward and ‘murder’ the slug.

The processing, afterwards. Curiosity, made-up explanatory stories, worry.

For everything, all the time.

So Nana’s diabetes diagnosis isn’t just about the extra mental load of figuring out her new diet; it’s also conversations about death and care and making the most of the time we have left, when I’d really rather hide in my room, processing alone.

Getting someone to do some math is not just about figuring out what they have to do and finding resources; it’s also about coaching them through the anxiety about doing it and, simultaneously, the anxiety about the consequences if they don’t—whilst keeping my own anxiety/frustration at bay.

Now apply that last para to teeth-brushing, housework, pet care, showers, projects, bedtime, going out, staying in, and any purchases anyone might wish to make.

A highly sensitive, highly anxious kid needing a tooth pulled? That took four months of talk, to get them through the door. FOUR MONTHS. And then two days’ processing afterwards.

Calmly identifying sources of conflict, coaching people to communicate their needs respectfully, translating offenses taken, accusations, or refusals for those whose words fail them – when it’s been TWELVE YEARS, dear gods why are we not there already?! – that’s emotional labour.

Keeping an eye out for the quicksand, negotiating around it, or being the tree someone grabs onto to haul themselves out – that’s emotional labour.

Holding myself firm in this moment, wilfully forgetting what should happen, or could happen based on what did happen last week, or, god forbid, what I WANT to happen, and above all, not losing my shit when it’s midnight and we’ve been at it for two hours already – THAT’S emotional labour.

That is what I do all day, and that is why I am so fucking tired.

(Rather wonderfully, when I messaged Dr Christiane Wells to ensure I understood emotional over-excitability, she replied, “Dabrowski wrote about fatigue as associated with having OE, and that’s something that’s not well-known – it’s something you see in his early work in Polish. Being ‘emotionally exhausted’ is something that happens in people with emotional OE.”)

So that’s it: a solid, bona-fide reason for this thumping, colossal, astronomical fatigue, because this work is not optional. It’s constant, it’s exhausting, and while I’m no master, I am – yeah. I’m gonna say it: I’m actually, pretty bloody good at it.

The nice thing is, if you’ve read this far and you have any inkling what I’m on about – any inkling whatsoever? Then you’re good at it, too.

The voices are back!

Just before Christmas, we had three nights away in a little rural town up the coast. Dairy, rainforest, mountains. Also, artists, craftspeople, artisanal cheese. We stayed in an elevated house with white everything, no clutter, no dust, air conditioning, and a view. Bliss.

And unlike every other holiday, I announced that I was having one, too. We ate takeout and you know what I did? I sat on my backside, on the sofa, plotting my next book.

I’d written quite a lot, you see, and although I knew exactly where we were going, I wasn’t sure how we were going to get there. With all these distractions, it’s easy to write round Robin Hood’s barn. Which, while entertaining for me, is probably less so for readers, and not a terribly efficient process. I need a map so that whenever I find a scrap of writing time, I know exactly where I am and what to do. By the time we came home, I had it: a breakdown of everything that has to happen in each chapter, and the first five chapters, trimmed and shaped. Ready to go!

But, ah jeez. 2021.

This week, our GP sent Mr Pixel to a dietitian who thinks his chronic health problems are down to a long-undiagnosed food intolerance and has ordered him to quit dairy. Clearly she’s never met a teenage boy before, let alone a neurodiverse one, and has no inkling what it will take to separate him from his cheese. Once I get him out of Fort Not Gonna, that is.

In the same week, Mum began reporting severe headaches, and can I just say this is NOT what you want to hear from an 85yo who has already had two small strokes?

Fortunately, it’s not her brain, it’s just diabetes. (!) Complicating matters – because why would anything be straight? – Mum is on a strict low-fibre diet. Do my sister and I have the knowledge and headspace to figure out a diet for diabetes + low fibre + dementia + congenital stubbornness? DO WE HELL. We can manage half that, but we need help. Cue much research, because even finding someone to be a useful part of the team takes a hella lot of work.

And this is after February, which was after January, both of which seem, bizarrely, to still be happening.

Wanna guess how much fiction writing I’ve done this year?

Zip.

Turns out that therapeutic as writing is, you need a certain amount of freeboard to do it, and I didn’t have it.

All I have is implosions and explosions, coaxing, cajoling, coaching, guiding, reminding, feeding, and reading. So much reading. Apparently 2021 is the parenting Olympics here and I’m in every goddamn event. Can’t hear the voices when you’re racing to the next meltdown.

But a wonderful thing happened. I reached out to a friend. One of those miraculous friends who lives in my computer and yet somehow gets it, all of it, every last speck, one of the unalloyed blessings of this chaotic age. She was in a similar pit, so we raised virtual martinis to the crap, and then we started constructing our ladders. Two things, she said, that we can do for ourselves, for a week. Three days, I said; I didn’t think I had a week in me. Deal, she said.

My things were doing my physio exercises, and making sure I showered.

Yep. That’s where the bar was.

But the saving grace of being in a pit is that any step, no matter how small, takes you in the right direction.

As it happens, I didn’t manage to do my exercises and shower for three days.

But I did enough to feel better, both physically and morale-wise. When my friend said she could go another three days, I signed up. Did a bit more. Felt a bit better. Got up the next day and did that all again. Had a sweeter interaction with my kid, chipped a notch off his anxiety. Slipped back a step. Gritted my teeth, had a shower. Did it again. Found I had the energy to start making salads.

And suddenly, the voices were back. My characters talked themselves through the impasse; the chapter was done in about two days. So that’s six in the can; 21 to go. Chapter 7 is one that’s already written and just needs the front end trimmed, chapter 8 … well, let’s not get too excited.

It won’t be straight up from here, of course. It never is. But at 51 I’m still surprised by how little it takes, to give yourself some leverage. Every time you take that first step, it gets a little easier. And every time you keep going, that bit gets easier, too.

Especially if you have a friend doing it with you, even from the other side of the planet.

Garden therapy

My first canna lily, a Christmas present ©careerusinterruptus

I grew up in the northern hemisphere. In spring a robin lay blue eggs in the Douglas fir by the garage, in summer we played under the sprinkler, in autumn we raked elm and oak leaves, in winter we tobogganed down the street and had all-in neighbourhood snowball fights.

Now I live in the sub-tropics. Palm trees waft, gekkoes scamper, you can grow tomatoes all year round, and if the temperature drops below 23C the kids moan that they’re “freezing”. Summer is hot and very humid (73% today!), and winter means you might wear a jumper part of the day.

This creates some challenging issues in the garden. Winter is dry and while summers are supposed to be wet, they’re not, really, any more. Frost is never a thing; drought and bugs are always a thing. Turn your back for five minutes and this can happen.

sweet potatoes, beans, and compost-sprouted squash going nuts in the veggie patch last year ©careerusinterruptus

Gardens here are all about water conservation and soil improvement. Since the previous caretakers did nothing but apply tree-bark mulch, our beds consist of deep, fine dust on a layer of clay. Compost is my best tool.

Alas, I recently killed the compost. (Free tip: if someone leaves the lid off so rain gets into the chicken feed, do NOT tip all 15kgs of spoiled grain into the compost at once. People, the smell. Oh, dear god, the SMELL.) It has to go. So I’m scraping back the dust before before using a pickaxe to hack into the clay in the empty beds, then burying ruined compost, one small barrow-full at a time.

It reeks, you see. Have I already mentioned that? Soon as I open the little hatch, flies begin arriving from neighbouring suburbs. Soon children also appear, t-shirts pulled up over their faces, demanding to know what died before fleeing inside, followed by the sound of windows slamming. Then, holding my breath, I trundle round to the trench, where the barrow is hastily dumped and the contents deeply buried. I only do a bit each day because the noxious miasma lingers.

I’m annoyed with myself for the goof – 15kgs of grain at once! What was I thinking! – and not really enjoying working in the middle of summer, but I’m also kind of excited. The rotten compost is forcing me to progress a couple of ideas I’ve had simmering for years.

This bed used to have a Tibouchina, until some silky-oak seedlings strangled it. Sadly they were too close to the house so they had to go. Meanwhile, my young avocado tree needs a new home. Transplanted here, it will shade the house without growing so tall as to be dangerous. And as it can’t be moved in summer, I have three more months to dig manure, straw, and compost into this bed and prepare a good, rich soil.

garden bed against a wall, empty apart from more compost-sprouted squash and melons ©careerusinterruptus

This bed faces east. In summer it gets eight hours of morning sun. I want a full-height trellis for a deciduous, native climber to protect those rooms in summer while letting them warm up in winter. The last breeder we bought a chook from gave me some arrowroot (Canna edulis, I think), which is not only excellent chook forage, it’s also tall and attractive – just what I didn’t know I needed. It’s just a matter of enriching the soil and planting it out with some other forage plants to create a shade-giving, chook-feeding oasis.

another empty garden bed, up against a house ©careerusinterruptus

(Chook forage is so appealing. I threw a couple handfuls of the spoiled grain into this bed and it sprouted into … I dunno what. There were some sunflowery kind of things and one of those stalks has an ear of corn. The chooks couldn’t care less. Seems they only want to forage my plants. Nevertheless, I cling to my dream: their beds, and my beds.)

a raised bed, lined with old pool cover, with random assorted grain plants ©careerusinterruptus

There. Doesn’t that all sound lovely and real? It’s strategic, you know. Luring the kids outdoors is a bonus, but really it’s about making myself get out there when all I want to do is hide from the world. Hunching over a screen, under a fan, when I’m not actually writing, does me no favours, especially when inside is still a shitfest. Shovelling stanky rotten compost is better. (Nothing more grounding than the smell of stanky rotten compost, lemme tellya.)

Getting an eyeful of green and sun, looking at things further than three metres away, big-muscle movements, listening to the chooks’ commentary, dirt under my fingernails, putting time and effort into the future, though? That’s good for all of me: head, heart, and body. Highly recommend.

Has anyone seen the goalposts?

Four chickens in grey leaf litter, yard infrastructure in midground @careerusinterruptus.com

It is a neurodivergent parenting fact, that the minute you figure something out about what makes your kids tick, or how to help them overcome a particular challenge, they move the goalposts. Not just a few feet left or right, forward or back, but usually into a strange, new, dark dimension populated by angry hammers. An issue that you’ve been contorting yourself, trying to grasp and manage, disappear overnight, to be replaced by a new impossible that has never, ever, been an issue before and the first you know is when it whacks you upside the head.

The joys of asynchronous development. I may have mentioned it.

If you have more than one kid, they psychically coordinate so that every once in a while they all do it at the same time. (The rest of the time, only 7 of the goalposts are doing the time-warp.)

And if you’re really, REALLY lucky, you might find your own goalposts hoiking their skirts and heading for the hills at the same time.

This has been 2021 in our house, so far. Hammer, hammer, hammer.

One of the kids has taken a massive forward leap, gaining about eight years’ maturity in eight weeks. Suddenly issues that had previously produced nothing but screaming, are being calmly clarified and the kid wants both more responsibility and more autonomy for resolving them. That’s great – amazing! Wonderful! – although it does entail a lot of work for me, scrambling for opportunities and resources. (And, of course, figuring out how to manage the gap between their goals and their abilities, without sounding as though I lack faith.)

Simultaneously, anxiety has driven the other kid backwards almost as far. Every last scrap of independence has vanished. I’ve had to take over all decision-making (I mean all of it) and my presence is required every minute of the day and quite a few of the night. I am gritting my teeth and clinging to the knowledge that in the early years, wobbles this big usually often preceded a magnificent leap. Nevertheless, neither of us is enjoying the reprise.

(Coincidentally as I’m writing this I’m overhearing my son’s homeschool class on Wells’ The Time Machine, and I have to say, never mind the Jurassic, try going back to the preschool age.)

And – sigh – apparently, I’m really, REALLY lucky, because just before Christmas I discovered that I have a specific learning difficulty. I’m in the process of recalibrating everything I know about myself and my abilities. In fact I’m at a stage in my (erratic, eclectic) reading where I’m starting to wonder whether all four of us aren’t afflicted by a particular exceptionality—but that’s a story for another day.

This day all my energy’s going into taking care of myself and – between tethering the kid out in future space and holding a lifeline for the one in the past – trying to stay grounded in the now. And oh, man, that involves a lot of adult self-talk: A small cup of tea is okay; the bucket you’re tempted to drink will just burn through all your reserves by lunchtime. Skip it. Drink water. Eat salad. Order the groceries. Talk to that friend. Avocado for afternoon tea instead of cookies. Okay, and *a* cookie. Take some time to watch the chooks. (Chickens are an extremely under-rated therapy. Trust me.) Drink more water. Cook the dinner. Make the extra effort to do grain-free pasta for yourself. Spike the kids’ dinner with sedatives. Wait, not that one. Wash the dishes. Shower. Go to bed. Remind yourself that this too shall pass.

Because it does. It always, eventually, does.

The perfectionism is a @#$*!! post

out-of-focus picture of gum tree branches against sky
©careerusinterruptus

Ho, boy, perfectionism. THAT miserable disease. Too often the term’s bandied around like it belongs to high achievers: Strive for perfection, get straight As! Sure, sometimes they can be a little driven, but hey, on the whole, it’s a good thing, right? That tendency will get them far in life.

Bollocks.

Perfectionism in our house bolted the door and hamstrung the horse before it ever left the stall. Perfectionism is a caltrops, a shackle, a monstrous barrier to progress. Perfectionism is a severe learning difficulty.

Lemme tell you a story.

One day somewhere in his third year, Mr Pixel wrote me a note. I couldn’t read it, of course, because it was unformed pre-school scribbles, but I made valiant efforts to guess at the content.

He wasn’t fooled. He wanted me to READ it. When he realised I couldn’t, a look of pure disgust settled on his face, and that was it. He was done with writing. DONE.

Just how done, I had no idea.

You see, Mr Pixel had decided that since he couldn’t, instantly, write intelligibly, then by god he wouldn’t write at all.

I didn’t know that, of course.

How could I?

He wasn’t even three, for goodness sake; I just figured, it would come.

So we gave him plenty of opportunities. Besides free painting and drawing, there was colouring-in, dot-to-dots, white-boards, and mazes – ways to practice writing-like movements more forgiving than forming letters. Mr Pixel wasn’t interested. (In retrospect, I should have twigged when he’d use his finger to trace a maze, but nothing that left a mark.*) We had fat crayons, markers, pencil grips. He ignored everything.

Perhaps he had fine- or maybe gross motor issues? We swam, we had Lego, play-dough, squeeze-balls, kinetic sand – anything to strengthen his muscles.

We tried an occupational therapist. Lovely young woman, sporty, full of giggles. Mr Pixel adored her – though not enough to do what she asked. “It’s my pencil and my hand, I’ll hold it how I want,” he said, barely five years old. (SAF. It’s frickin’ real.) $900 later we quit flogging that horse, because having refused to play any of the OT’s homework games with me, Mr Pixel had eventually quit engaging with her at all. He’d worked out what was really going on, and he wasn’t having a bar of it.

School didn’t push. They recognised that kids mature at different paces and were confident that he’d write when he was ready.

Which may well be shortly after hell freezes over. Five years later I’m pretty sure you could fit every mark he ever made at school onto one sheet of A4 with a nice wide margin for framing.

Yes, I know. Dysgraphia. But how can you tell? It’s a completely self-reinforcing cycle. Is he refusing to try because it’s difficult, or is it difficult because he refuses to try, or both? How do you help someone who has simply decided they Won’t? Hint: treating it as if it’s dysgraphia – offering to scribe, for instance, typing, or voice-to-text software – doesn’t work. All you get are dirty looks and a zipped lip.

Text-to-voice, on the other hand, worked brilliantly for about a fortnight, during which Mr Pixel typed reams of swear-words into my phone for my car to say while I was driving.** (Cheers, inventors of Bluetooth, bet you didn’t foresee that.) Then the novelty wore off and we were back to No Writing.

Not writing has one major benefit, you see. Most schoolwork requires writing, so a kid who won’t write has pretty effectively shielded themselves from ever have to risk being wrong, or making a mistake that others might see. This principle works right across the board: If there’s any chance an activity won’t be instantly mastered – which is pretty much everything – it’s off the agenda.

THAT is perfectionism, people.

It kills me and it breaks my heart.

I have no answers. It goes without saying that anything Mr Pixel does want to try is greenlit. As parents we talk frequently about our learning efforts in his hearing, emphasising the frequency and usefulness of mistakes. He watches educational videos and we talk ideas. And we keep providing opportunities, not just for writing but other, low-risk, open-ended activities like paint-pours or making fimo beads – our homeschool group is perfect for this, god bless those people.

Minecraft and Lego have both been great for trying and failing, without losing face. He’ll type texts for me if I’m driving and when his server crashed, he asked for help composing support messages to the host.

And after years of that, we are finally starting to see writing, in the sanctuary of our homeschool group, with a teacher who absolutely gets Mr Pixel (and a class full of others like him). With their encouragement – and their very broken-down, structured lessons – he’s begun producing stories and paragraphs that don’t just say ‘poo poo poo poo’. (Even that was only a one-off.) He’s getting there, having a go, learning what success feels like and more importantly, that mistakes are survivable. Which after all, is really the only way to break perfectionism’s paralysing grip.

* = I figured it out when CraftyFish – who owns many untouched workbooks, including The Gifted Kids’ Workbook, Create This Book, and The Big Life Journal – explained that she won’t write in them for fear of “ruining them”. At least she Wrecked This Journal; Mr Pixel wouldn’t even do that.

** = Yes, I let him, because HE WAS MAKING WORDS. Plus, the pair of them giggling their heads off was such a nice change from the screaming.