The everyday lexicon of parenting has seldom spoken to me. Rather than chiming, the toddler-and-beyond truisms would detonate my brittle mind. “They grow up so quickly”, “she changes all the time”, “such a little chatterbox”, “blink and you miss it”. Being utterly unable to relate riled me and filled me with fear. Resentment would latterly rear its head, through the nursery and early primary years. Maybe it will always ripple ever so softly.
I imagine as Isaac progresses, the conventional parent chit chat will continue to gain little purchase; it will always sound more other tongue than mother tongue. Sleepovers and shenanigans, peer pressure, moody pre-teen; the offstead opining and turbulent sports trials; holiday camps, the haranguing and the hanging out. I might take the odd gulp, attune as I am to how different the sound track to our life with Isaac can seem. I may well be prone to ponder that put crudely, but kind of correctly, autism could amplify the more harrowing dimension of all this dialogue – puberty, adulthood, independence, the big, wide world. Another gulp.
In the main however, I believe in Isaac and his autism with my every fibre of being. Which means never ceasing to symbolise his difference, his otherness, his uniqueness, in the most dynamic, shining manner. What this does – and will always – mean is a mental resilience to refract fleeting temptations to relate (or not) to other people’s normality.
In reality, I can’t retain this resilience all of the time. Sometimes this mindset I’ve cultivated of a dedication to difference gets turned on its head. When I can’t help but listen to everyday stuff and compare to our journey with Isaac. It can leave me somewhat bereft, weighed down with what-ifs. Witnessing care-free kid activities close at hand can upset me. A picture, a social media post. Holidays packed with adventure and spontaneity and exploration. Typical, run of the mill stuff, effortlessly, chaotically experienced by so many. A world we don’t reside in.
And there’s been one such bit of ‘everyday parental experience’ recently that I’ve been forced to acknowledge in relation to Isaac. Something too close to home to ignore. Initially stark, subsequently maybe not. It’s been quite a force. A force of a filial nature:
Isaac’s sister, Tabitha, turned three and four months. Precisely the age that Isaac was diagnosed. Her typical behaviours so blanketly at odds with his at the same age; our experience as parents, the polar opposite. My vivid recollections of Isaac can’t help but vie with my current observations of Tabitha, a typically developing child.
The exhaustive year up to Isaac’s diagnosis I’ve talked extensively about. The crazed concern I felt in my marrow; the relief but realisation of something fundamental as the diagnosis was made; the daunting dawning of this new life with autism. If Isaac’s diagnosis felt like the ominous shifting of our universe’s tectonic plates, with Tabitha it’s more the universal spinning of plates associated with any young family (albeit with a time to time toppling of them). Such a contrast.
Thinking singularly about that time with Isaac will always burn like a fire. Learning the new language of autism strained and stressed: the rigours of routine, the speech therapy, the repetitive play. His limited social interaction needing unpicking and diligently putting together piece by piece, as it always will. Slow, deliberate, word by word, phrase by phrase, language acquisition was laborious and fraught. Seeing his sensory overloads in hyper real multicolour was torrid. Explanations alleviated our sadness ephemerally. Accessing the arcane services system took its toll; indeed, practically poleaxed by the process, if it wasn’t for my wife’s tenacity I may have tanked.
Versus, now, and our parental experience with Tabitha. This little, nutty, chatty, knock about girl amuses, annoys, shouts, smiles, hugs, stomps, moans. She dresses like a princess shrieking ‘Frozen’ lyrics, melting no-one’s heart but my own, waking weeping neighbours. She munches carrots and greens on the sofa, licks marmite from the jar, and yells, “No bed! It’s not fair” at ten at night. It’s exhausting and elating. In a simple, straightforward, binary way.
On the surface, as I say, two polar opposite parental experiences. Yet there’s so much more to these two parallel parenting streams. There’s a convergence occurring that’s edifying. The interplay of typical and difference.
I’ll start with something selfish, my confidence as a parent. The seething sense I had as a misunderstood parent has been soothed once and for all by the light Tabitha’s typicality has bathed on Isaac. Never have I felt so sanguine about my parenting skills. I now understand those parents (of non-autistic children) who tried, honestly but ill-informedly, to empathise with Isaac’s meltdowns and peculiar eating and slow developments. With no context, seeing solely Tabitha, I’d be the same. She can be picky about food, but confident choice giving by us and her diet expands, she’s cajoled. Like all kids, she’ll erupt, but we are able to fan the flames instead fuelling the fire. Autism in a non-autism friendly world will always be complex and challenging – and easy to mis-read if you’re not in it. I was doing the best anyone could do. I one hundred per cent know that now.
And if I’m wearing my parental pride like a gloating child garlanded with a gold medal it’s not at Isaac’s expense. Far from it. My pride in him propels by the day. Firstly, there’s the stuff he thrives on, thanks to his neurological difference to his sister:
“Daddy, because your office is northbound on Goswell Street, you can get the 143 bus to Archway and then 43 bus to Finchley Central and then walk to our home,” he responded instantly (referring to nothing other than, I surmise, his mind’s eye) when I told him my new office’s address for the first time.
And secondly, there’s the progress he’s making in everything he finds tough, because of the neurological difference to his sister. Everything from being able to loosen his literal learning, to chatting off the cuff.
For example, he has been harnessing his (awesome) ability to list literally dozens of band names and songs perfectly from memory, as a way of computing very basic things:
“The song by Bastille with the lead singer Danny Smith is called Good Grief. But the words Good Grief are not actually words in the song. And the singer’s name is different to the Band’s name, which sometimes happens. Like Chris Martin and Coldplay, and REM and…”
The facts, then, a catalyst for elasticising his literalness so he can decipher the slackness and illogic of so much speak. As well as being handy head-starters for him in joining the carousel of conversation that he finds so difficult to step on or off.
Plus he’s doing some nascent treading around more pertinent life themes:
“Nirvana died but there isn’t a statue because not everyone has a statue. Some just die and sleep forever. I’m a bit sad that Michael Jackson died. Noel Gallagher lives in London but the band Oasis are from Manchester.”
What appear to be non-sequiturs are actually ventriloquists for him making sense of big life issues – where people live, mortality, and more. All wrapped up with sociable intent. Him wanting to engage.
Offsetting all this of course, is Tabitha’s world. The new normal for me.
There’s a flexibility, connectivity and versatility to Tabitha. That allow for a fluidity of movement, speech and general life. Where improvisation, shifting, adapting, reacting, are behaviours that simply occur. It’s apparent that even in its infancy, her language acquisition is so much more nuanced, malleable and multi-layered; further highlighting Isaac’s need for continued speech therapy alone.
She can accommodate the swirl and whirl to life that makes for a very human, meaningful and telepathic existence. One, of course, I took for granted before Isaac, before autism. The human condition in its most maddeningly impossible-to-define way. The to, the fro, the flow. Tabitha is naturally absorbed in it.
We can drop in on a kiddy disco, all bright, flashing lights, noise, copying dance moves, and Tabitha will take it seamlessly in her ever enlarging stride. Similarly, at ‘little kickers’ football classes, she scampers around an echoey hall, dribbling the ball, scoring goals, balancing, bounding, obeying orders.
Spatial skills, bodily awareness, coordination, sensory processing – issues and neurological abilities Isaac toils at admirably, but progress can be painstakingly slow. A raft of complexities (from taking visual instructions to imitating physical movements to fine motor skills) around everyday actions demanding years of occupational therapy.
Conversely for her, innate skills and cognitive abilities that seem to never stop multiplying. A mysterious osmosis informing her development, absorbing all around her. An immersion in her environment. The testing nature of transition between events not even a question.
One of those parenting phrases I’d previously abhorred – “she changes by the day” – is one I apply, ironically, daily. Picking so much up. Independence, curiosity, tangents to her sentences of 7, 8, 9 words and more. She infers and will summarise a morning at nursery.
Her filtering, editing, managing of space, sights, colours, shapes. Laying out clothes, learning to use a zip, putting things in their place. She continually, intuitively unifies her world. In a way that’s so abstract, often alien, to her brother.
The contrast is so acute. Only recently Isaac was carrying his big bag with a few books in and got edgy because he wanted to take his cap off. “Put it in your bag,” I nonchalantly said. “Can I daddy? Can I do that? Can I put my hat in my bag? Tell me please.”
Not only had it not occurred to him, it then seemed an impossible task. That his small hat would fit in his bag. The ample space in no way made sense to him in relation to his small hat. So innate, it’s deemed obvious. Yet complicated to the extent of nonsensical for him that he can’t access such a figuration.
If there’s not a degree of dolorousness I feel seeing – compared to Isaac – how Tabitha follows this path of expectedness, I’d be in denial. Much more powerfully, it serves a purpose as I’ve said, regards my parenting esteem and also adorer of Isaac’s extraordinary abilities. Put simply, comparison helps comprehension – of Isaac, of autism, of Tabitha, of typicality.
All in all, looking at Isaac through Tabitha’s eyes – and vice versa – has been less soul searching and more understanding. Ultimately though it’s been life affirming – because their bond transcends everything. For example, at the end of a (good) week, he’ll write a detailed letter to the family of his day at school. Heavy on detail, a not easy to decipher literal brain dump of what he’s been reading at school, comments heard, music listened to. And Isaac will bossily get Tabitha to read bits, to join in. They’ll perform.
At times, he may fume in her face if she gets too close or encroaches in his territory. Respecting his pleas for “personal space, Tabitha!” she has an almost mystical detection as to whether this is genuine. If she perceives his frenzied stockpiling of transport books is sending out serious distressed signals for example, she’ll decode that Isaac is “not happy, needs quiet time.” And patiently leave him be. Alternatively she’ll somehow know when to show stoicism which can give way to cuddles, “I love you Tabitha… do you want to play with my train set?” Either way, truces take place very swiftly.
Right now, there is a (behavioural and social) developmental alignment between the two of them in many ways. Watching similar cartoons, playing together, being creative together. Her a catalyst for his modus operandi of unabashed affection giver. No one kisses, strokes, says I love you, quite like my son.
Seeing Tabitha’s typical behaviour in relation to Isaac has liberated and lead my soul in an enlightened direction; with harmony the acid test. Sure there are pyrotechnics. (Anxiety, surprise, change, noise will always stalk Isaac, and he could retreat suddenly or react wildly or both). But it can be quite something when the two of them blend. Something symphonic.
@copyiswritten Thank you for sharing your family so generously with us
— Kay Hutt (@BHALush) November 29, 2016
@copyiswritten thanks Matt – we've had a similar alignment with our 2 eldest with a 2 year gap. Alexia has natural ability to decipher James
— Mike Strong (@mikeystrong) November 29, 2016
— Colton Consulting (@coltonconsult) November 29, 2016
@copyiswritten very lovely mate, well done…
— Austen Humphries (@afhumphries) November 30, 2016
@copyiswritten great writing (as always) Matt. I especially like the example of the hat and the bag
— Bob Nash (@bn3163) November 30, 2016
@copyiswritten You need to write this, we need to hear it. Onward Davis, onward!
— Jonathan Spooner (@spoonbiscuit) November 30, 2016
— Special Yoga (@syfyoga) December 1, 2016
@copyiswritten Another beautifully written insight into Isaac outside of school. What a wonderful time in both their lives….and yours.
— Lisa Camilleri (@HolmewoodHead) December 1, 2016
— Red Brick Road (@TheRedBrickRd) December 2, 2016
@copyiswritten Beautifully written. A very special young man.
— Footprints Life Camp (@FootprintsCamp) December 2, 2016
This is a must read for any parent of a child on the autism spectrum with a sibling. Do read! https://t.co/bxDAzLVbUt
— Autism Talk (@AutismTalkASD) December 2, 2016
The father of Isaac, who has autism talk of him and of his little sister who doesn't. Candid, sweet, a great read: https://t.co/MLJEprEZXj
— Jon Snow (@jonsnowC4) December 3, 2016
— Souvenir Press (@SouvenirPress) December 5, 2016
@jonsnowC4 what a lovely read.
— Lisa Tilesi (@TilesiLisa) December 3, 2016
— Living Autism (@LivingAutismuk) December 6, 2016
Beautifully written as always. https://t.co/z2zB7QjYWW
— LouiseCourt_ (@LouiseCourt_) December 9, 2016
— AlisonR Bowyer (@bowyer_alison) December 10, 2016
@copyiswritten Great blog Matt. The Boy is 6, diagnosis at 4, and it's great to read about someone else's experiences.
— Matt Jones (@maffrj) December 10, 2016