Excellent piece by Theresa Currivan. Big round of applause.
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 1,48
78 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?
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 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.
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.
Wanna guess how much fiction writing I’ve done this year?
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.