For over two years Tyson’s engaging cheerful, cheeky disposition has been ebbing to the flow of frustrating repetitions including the opening and closing of his jaw, frequent bullhorn yelling, the wringing of hands and the licking of fingers; squeezing entire fists and other objects into his mouth, the constant kicking and trashing of his bed covers through the night, terrible sleep patterns and the tendency to spin around and around before freaking out at how dizzy he is, and with all of that has come the reduced ability to sit still, to focus, to retain information, to build on certain motor skills.
Both Reservoir Mum and I have spent many hours of our lives since these behaviours first presented themselves feeling guilt-ridden; assigning them to bad habits formed from a deficit on our part, or overcome by anxiety as it was suggested by others that he might be somewhere on the ‘autistic spectrum’.
And now the diagnosis is here – Sensory Processing Disorder.
There is the potential for mental relief in this diagnosis – as well as in the assessments that have made it clear his delayed learning and motor skills are only minor and easily corrected – but I can’t quite shake my resistance towards it. It feels to me as if we’re being instructed to label away my boy’s uniqueness, to ear-tag him like a steer bound for a tin can.
When I jump in bed beside Reservoir Mum, who’s writing up case notes for work, I’m astounded to see that it’s already 11.30pm. ‘Holy shit,’ I say. ‘If I ever manage to get a solid eight hours sleep again I’ll probably suffer toxic shock syndrome.’
‘That’s what a woman gets when a tampon’s left in too long,’ RM says.
‘Oh… well what’s that thing that long term alcoholics get when they go cold turkey?’
‘I dunno,’ she says.
‘Well that’s the thing I’ll get,’ I say. ‘My body won’t be used to the sudden influx of hormones and chemicals I’ve been suppressing through lack of sleep and I’ll have a heart attack, or burst an occipital valve or something.’
‘Tyson slept alright last night,’ RM says. ‘Didn’t he?’
‘He thrashed about like an abattoir-bound cow trying to… um… scurry up the… slippery… shit-covered plank of the… cattle truck,’ I say.
RM shakes her head and glances at me. ‘You couldn’t think of a nicer metaphor?’
‘I don’t want to sugar-coat it, RM. At one stage he even let out a bovine-like groan,’ I say, before making a silent pact with myself to stop talking about cows. ‘Hey, while I was lying there with him, waiting for him to go back to sleep, I noticed he kept pulling the sleeves of his pyjamas from his forearms. So, on a hunch, I changed him into a t-shirt. He seemed to sleep better…’
‘Yeah?’ RM says, putting the case notes down, picking up her iMac and scrolling through an open web page. ‘I was doing some more reading on Sensory Processing Disorder and that’s one of the possible symptoms… that they get irritated by flimsy material rubbing on their skin. It would explain him being a hopeless sleeper.’
‘I don’t think it has anything to do with SPD,’ I say, ‘He’s probably just inherited that particular sensitivity from me. I’ve always hated things touching my forearms. My sleeves are always rolled up, even if it’s freezing…
‘Ah, yep,’ RM says, with a strange emphasis that reminds me of Dr Phil looking down a camera from the vantage of his tall studio chair. ‘And that’s because one in every ten people have SPD.’
‘Huh?’ When she stops to regard me with a piercing glare the thought crosses my mind that she might want to have sex with me but because that thought doesn’t gel with the conversation, I let it pass, while remaining hopeful.
‘People with SPD cannot process sensory information properly and either crave sensory input or avoid it….’ she says, humming a little as she scrolls to her next point. ‘… and often have severe oral fixations which manifest as chewing, biting and…’
‘You see. His symptoms have nothing to do with SPD,’ I say. ‘Check out my desk. There’s not one pen that I haven’t chewed right down to its inky vein. And I remember, RM, when I was a kid… finding it impossible to suck a lollipop. I’d challenge myself to suck, sure, but the need to chew down and smash it to pieces would just overwhelm me every time. The crunching and crushing and the jarring inside my mouth was just so… gratifying.’
‘I know,’ RM says, as she sits up, crosses her legs, places the iMac on the bed in front of her and seems just a little excited. ‘Listen to some of the other symptoms… an aversion to florescent lights…’
‘I can’t stand them,’ I say, cutting her off, happy that she’s seeing my side on this.
‘How many times have we been in a shopping centre…’ she says, bouncing up and down a little due to the ferocity of her nodding, ‘with you whining… oh, the lights are making my head spin… oh, RM, I can’t stand it… I must flee…’
‘I sound way more manly than that,’ I say.
RM holds up her hand as a way to sush me and says, ‘And you know how you can’t go down the long escalator at Melbourne Central Station?’
‘Yeah,’ I say. ‘Because of the steep decline … or the angled roof… or both… combined with the horizontal floor…. and the people going up and down seem to be leaning or… I don’t what it is. What’s that got to do with Tyson?’
‘People with SPD can have really poor spatial awareness. It can really confuse them,’ she says.
I’m just about to continue on with my blinkered reasoning, to insist that there’s nothing to Tyson’s symptoms beyond inheriting a few quirks in his old man’s biology, when I catch RM staring at me again, intently, and my mind stills for just moment. Pieces of information exchange places and images from my past leap in to fill some gaps and I suddenly see myself standing naked on the mountain peak of self-discovery. I’ve trekked my way through a blizzard to get here and I’m more than cold. RM hands me a billowing red flag which reads, RD Waz Ere. I drive its spiked-end into the ground, not because I want to claim this truth but because it’s undeniable.
Back inside our bedroom I lock eyes with RM and whisper, ‘I didn’t even want to go on this expedition. You forced me.’
‘What?’ she says.
‘I have sensory processing disorder, don’t I?’
‘Yep!’ she says, leaning over to poke me in the chest and then clapping her hands together.
‘I avoid all flimsy contact with my skin… I can’t sleep unless the doona covers a tiny section of my body only…’
‘From your abs down to the edge of your knees,’ RM says. ‘As people with SPD get older they develop ways to avoid the sensory input. That’s how you do it.’
‘I hate going to the pool because of the way the surface of the water keeps creeping up and down and all over my body.’
‘You break out in goose-bumps,’ RM says. ‘And that’s why you also hate the beach…’
‘Because of all the grains of sand… sticking to me and biting into my skin like immortal fucking ants,’ I say, shivering, shaking my arms. ‘… and everything’s so white and bright and… reflect-y…’
RM reaches over to hold my hand, she’s talking quietly now. ‘You eat in a way that is classic SPD; shoving way too much into your mouth…’
‘I’ve always done that,’ I say, a whining acceptance creeping in to my tone. ‘Like when I buy Hubba-Bubba bubblegum… I can’t stop myself from tearing away the wrapping and eating every piece, all at once, and every time I do it I just feel so angry that there’s only five in a packet. I almost wrote them a letter once… but I ended up biting the pen to pieces and gave up.’
RM continues scrolling through the webpage before clicking her fingers. ‘And you crave very strong tastes…’
‘I lap at Tom Yum soup like some thirsty overworked sheepdog,’ I say. ‘And I can’t pass by a bitter fruit… Jesus… do we have any lemons?’
‘You also go crazy for really strong smells. Remember how I had to offer you a certain kind of reward if you went a month without buying another bottle of deodorant?’
When I glance to my bedside table to see the dozen or more deodorant bottles – mostly Linx and the new Old Spice – I have an unsurpassable urge to sniff every one of them, over and over again, and with it comes the final confirmation.
I have Sensory Processing Disorder, I always have, and how torturous is the guilt and sorrow bubbling to the surface of my psyche right now. I have lost my temper with Tyson, screamed in frustration, felt embarrassed by his repetitive mannerisms and I feel this intense desire – completely unrelated to SPD (although who the hell knows) – to rush into his room, to wake him with a hug and to say, sorry, sorry, sorry, sorry, sorry….
‘This also fits in with Lewis and his behaviours… especially in his early years,’ I whisper.
‘Yep,’ RM says. ‘He definitely had the same symptoms. Just expressed them differently.’
… sorry. I fall limply to the pillow and grab for RM’s hand to place it on my head and extract a healing rub.
‘People with SPD crave deep pressure, as opposed to light pressure,’ she says, turning away from the iMac to face me.
Just as I’m about to scream, Jesus, you’re relentless, let me alone! RM puts both hands on my head and leans in with all of her weight and there comes a creaking in the bones of my skull and as my face disappears into the pillow I can’t deny that the pressure she’s applying feels a lot like…. heaven.
‘That can’t possibly feel good,’ she says, incredulous. ‘Does it?’
‘Harder,’ I say.
‘Shit. I don’t want to damage your brain,’ she says.
As she continues pressing into my head again, and then releasing, and then pressing a little harder and repeating that pattern over and over again, the behaviours and symptoms Tyson, Lewis and I have experienced continue to rise to the surface of my mind, linking with the diagnosis and it all makes sense.
‘Harder,’ I say, with an involuntary sigh.
A blanket of calm releases its weight upon me and I wonder about who I am right now, about what I can credit to the wholeness of my temperament and what’s been fashioned by the hand of SPD and before and after all of that is this little fact: I like myself.
I think I just asked RM to press harder again but I can’t be sure because I’m lost in the turbulence of Lewis’s early years, the pure hard slog of it, and now he’s doing so well at school – socially and academically – and, yes, the challenges are still there but for all the worry and effort I’m left with the same conclusion: I like Lewis.
This diagnosis feels on the verge of terrible in terms of the way I have misunderstood Tyson and Lewis in the past but it’s not bad, really, for what we can do to help themand as I continue to reflect on my own SPD expedition and where I am now I am offered no alternative to actually feeling buoyant.
When RM straddles my back the extra pressure is mind-altering and Eric Clapton is inside my head, singing, She don’t lie, she don’t lie, she don’t lie… cocaine.
‘Press harder,’ I say, slobbering into the pillow. ‘So… fucking… gooooood.’
‘You…’ RM says, still pulsing my head into the pillow, ‘… are officially diagnosed.’
Just as I’m about to relinquish all awareness of the world around me to the delicious pre-crunch pressure, Tyson brings me back with his bovine-like groan and RM dismounts me with the haughty self-aggrandised posture of John Wayne.
‘I have to write this happening down,’ I say, as I rise from the bed, enthralled by the opportunity to tend to Tyson.
‘Yes,’ RM says, just before I walk into the hall. ‘And you’ll write with headphones on and the volume turned up all the way up. Because that helps people with SPD to drown out all the confusing auditory signals…’
Her words fade as I close the door and traverse the hall to Tyson’s room but they stay with me, bubbling through the remaining glum in my consciousness, because the pressure of the headphones on my head, the isolation inside one source of sound, the room darkened to one focussed light, the clench and release in my jaw as I write; this is how I’ve self-medicated through the years of undiagnosis. To remove Sensory Processing Disorder from my past would be to remove the skills I’ve developed because of it.
As I hop into bed with Tyson I have no choice but to acknowledge that this can be a wholly positive diagnosis for him, as it has been for me and as it appears to be for Lewis, and I’m suddenly fixed on writing away from the word disorder. I will do it. I know I can. I just need a little time, lying in the dark next to the thrashing body of my sweetheart boy, to process it.