Stung, pelted and scratched in the margins

the narrow spaces that the long day of summer has me squeezing into

Aug 26, 2024

My words were clipped and my temper as frayed as the trailing green, ropey end of the dog’s lead when I barked at him, my son that is not the dog. Barked at him to pull on his raincoat as I was parking up, careful not to bottom out the car in the dip of bare, damp earth alongside the heathland sign that warns of adders and ground-nesting woodlark and nightjar. I’m the adder here.

His body noticeably jolted at hearing my voice and he sat rigid. ‘Outside. You said. Outside. Not the car.’ he matched my shortness, each of his words amplified by an emphatic hand gesture. He was vexed and he was right.

Whilst approaching the woody expanse of common land where we walk our dog, between an old A road to London and the tracks of the South Coast mainline, it had begun to rain. Just prior to turning down the treacherous, unsurfaced and colossally pot-holed lane.

Before leaving our house, I must have told him he could pull on his coat once we arrived … and then promptly forgotten I’d said anything at all. Entirely forgotten. Because how dull? I wasn’t really listening, not to him or to myself. One arm grabbing at keys, the other snatching at the bag of liver dog treats, eyes too making sudden agitated, juddery movements, pinballs in their white scowling sockets. Our exchange of words, staccato jabs and not really meeting anyone’s definition of a conversation.

He hasn’t forgotten though. He’s incredibly literal, a trait many people with autism share. Not that I hold thoughts about his autism very often in the day to day, I’m too close to all of the behaviours to affix any labels to his many idiosyncracies. I try to keep meeting him where he’s at and roll from there. And this especially now during the long day of summer. And it can feel like a giant, lonnnnnngggg daaaaaaay.

‘But it’s raining outside?’ I say. He’s sat rigidly staring in to the space ahead of him in the passenger seat, his jaw dramatically hanging, arms outstretched in disbelief. And I think I see not my son sat here with me but instead see the side profile of Beaker. You know Beaker, the little guy assistant to Dr. Bunsen Honeydew from The Muppet Show. All tufts of chaotic orange hair and the same diameter neck as head. Him. Beaker is sat beside me, eyes bulging slightly and with a look of complete confusion across his face.

Can I even make this observation? Can I compare my (variously) disabled child to Beaker in this crazy age of cancellation? Is that permitted in 2024? A fuzzy puppet. To clarify, I do mean visually compare them, fleetingly, in this one particular moment of exasperation, miscommunication and dare I say it, comedy.

I think I can because, well, I thought the thought, have copious love in my heart for this boy and I’ll live with the consequences or any criticism incoming as a result.

I’m laughing now as there’s actually A LOT about living with my disabled child that resembles elements of The Muppet Show, on reflection. A boy who is at turns hilariously funny, witty and wacky, and in other moments I / we find infuriatingly repetitious in his interactions, obsessions and compulsions.

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Having said this I now feel, and somewhat in contradiction, momentarily basted in shame gravy ( The Swedish Chef nowhere to be seen ). And also completely fascinated; I just did a real time Google search against Beaker’s character and am seeing several references to Beaker’s alleged autism and possible echolalia. This is uncanny. I knew nothing of any of this gloved neurodivergence until this moment. And now I’m the one sat with eyes bulging and wearing an expression of shock here by myself at this screen.

I’m no Muppet Show afficionado and have never in my adult life revisited the iconic 1980’s puppetry or considered the symbolism of these big, little fuzzy characters with their exaggerated features, all huge, wide-open, red, felty mouths and large eyes. I’d thought I was making a simple off the cuff ( albeit risqué ) visual comparison. Now, my interest’s piqued and I want to learn more about these cloth people.

I definitely plan to watch some Muppets episodes now

I want to watch archived episodes with all the canned laughter and chaotically musical antics my eleven year old me remembers. And I’m thinking too about Kermit’s flappy hands. Could he in fact be stimming?

I didn’t care about the rain or his raincoat, not really. If he gets soaking wet, he still walks. Discomfort doesn’t make him respond in the same way as you or I. I like all temperatures is his standard retort.

‘Ok. Yes. YES. YES! Coat on out’ I snap. To form the words for a whole sentence in my throat is too much effort; this is one of those cripplingly recurrent and exquisitely tiresome interactions we have with our children during the longgggggggg daaaaaaay of summmmmmmer. They’ve a sting to them like suntan lotion in the eye.

I’m wondering if you’re finding my account of this interaction boring to read? It sure as hell felt dull enough to experience so I hope I’m conveying this tedium well enough. The wind whipping between straining oak boughs above our heads, rain spearing tinny sounds against the blackness of car roof. Neither of us wanting to be there, not then. Not in the slightest. And certainly not with each other. for. yet. an. other. dog walk ...

The summer forces us together, to be A LOT together. A bit conjoined is what we become. It has always been this way. From the moment he birthed himself sliding with slippery, wet ease straight into my actual birthday. We’ve been squashed up against one another in that tiny, rigid square on the calendar ever since. And, this summer, we’ve become so very tired of one another’s voices and quite reactive to each other’s irritating ways.

We share a birthday: December 11th. His first few birthdays were incredibly painful. His last birthday was an incredibly healing experience which I might write about.

When he was a little dit and portable and the spicy isolation to this flavour of parenting shrouded amidst activities for his siblings, I held down the rage pretty well. Hermetically even I’d say. I spritzed humour all over everything so I wouldn’t have to smell the rage at all and the happy haze of family could persist. Not an achievement so worthy of merit this, I’ve since learned and the hard way.

Rage, incidentally, is something that’s been tumbling around in my head this summer a lot whilst out walking or driving around between things. I’ve been listening to the lush and lilty voices of two ladies over on

Women Are Mad with Jen&Salima

and communing with their guests in The Rage Room, a kind of virtual Room 101 to dispose of rageful associations. Jen sounds like she could be permanently sucking on a delicious pear drop. Salima’s voice has more of a ripe, peachy, syrupy timbre. Together they’re a sonic elixir for my scorched summering ears.

We walk, him the dog and I. There are plenty more micro exchanges of a tedious nature over the next hour and half of not especially mindful striding through wet grass. I attempt some conversation. It doesn’t flow. We separate and walk alone again singly along the margins. My marginalised child and me.

At one point, the dog does a disappear and needs finding, so I urge my son to quicken his pace. This incenses him. Our rescue dog loves a dip and has darted off to submerge himself entirely in the dank and peaty pond water. I don’t feel any rage at all about this filth, strangely; he’s dog, he knows better than I what he’s doing.

There’s some pelting of pine cones. Yes, at each other. It’s a sanctioned game we play, pine cone pelt. A no holds missile exchange with everything above the neck off limits. Today the pine cones are landing with more propulsion and force than usual. On both of us.

I can sense a tight-throated, acrid flavour in my mouth whenever I witness myself unable to show him patience. Words taste bile yellow and bitter when buttered in my frustration and, though I can’t see it with my own eyes, I’m pretty sure my face contorts into some of its ugliest crone shapes. All those facial athletics track lines along which emotions have raced in the daily living of life. For years, my go-to strategy to prevent these lines from rutting themselves in along the edges of my features was to, wherever possible, gulp down the rageful feelings, to smile and laugh along with the world instead. I see this now, in less rosy retrospect.

When no patience for him is forthcoming, I feel weighed down and overcome by a deep sense of failure. I sag with the weight of my own harsh self judgment. It can be as heavy to schlepp as a coat becomes when you’re caught out in a downpour. The irony.

What’s the fluffy purple plant? I ask. Do you remember it’s name from last time? Huh - huh - he? He throws back his head and becomes a human PEZ dispenser ejecting an angry brick of sour-tasting resistance. It would’ve been yellow, the brick.

These graphic moments where he expresses himself so physically, they often make me smile inside or bellow with laughter. But not today. Today, I am so over him and he over me.

‘Not bloody again. Not plants again!” he spits. I persist though because I can be properly stubborn when I want to be. What about the spiky yellow flower? Can you remember that flower’s name? It smells of coconut and the flowers are really yellow and soft. Guh - guh - gor ? He is unable to channel a single iota of Attenborough enthusiasm for this. I concede, drop my efforts and walk alone again for the next stretch.

Summer is the time of year with least air for me. Suffocating care, no air. This is the season when I question everything as my resolve and self belief melts like a big Mr Whippy dripping stickily down over the clasped fingers of my hands.

the ragwort is very, very yellow

How clever, to be able to craft your own cocoon and disappear. To get to transform so fully, expansively, cellularly and completely. In quiet, alone and underground. Without responsibilities. I feel jealous of the cinnabar caterpillar. How mad is that? To be jealous of a caterpillar.

“And remember, you’re not mad to feel mad“

I’m thinking of your words, Salima & Jen. When the whole summer feels to me (perhaps to every woman with a child?) like a retrograde transformation from winged insect freedom and flight back to wriggling caterpillar state. To much, much less mobility, mental freedom and no wings at all. Not even gossamer thin wings. Writhing around on the same local patch of dirt.

Whilst certain aspects of summer have been such a lonnnnnnng day, listening to all the guest butterflies invited via your

Women Are Mad with Jen&Salima

podcast to open up, unfold their wings and share their hard-won nectar, this has been a complete tonic, a huge and wholesome joy. I’ve been steadily working my way through all your archived episodes and am excited about more of these releasing soon over here on Substack.

Salima ( eyes left ) & Jen ( eyes right ) have VASTLY improved my lonnnnng dayyyyy of summer 2024

I bought the merch and it’s a good fit .. rage often feels less of a good fit to feel though is worth every agitation.

I remind myself that this care cocoon is itself transformative and also a temporary state. It’s coming to an end as it always does each summer’s end.

Less than a fortnight to go now, I’ve got to just keep wriggling a bit longer ...