I believe I’m excelling as a member of Isaac’s exclusive (he’s the founder) 05:54 club; sure, it’s a tough time of day, but it’s getting less of tough call. Membership for me is mandatory anyway.

On the actual dot of 05:54 irrespective of when he went to bed and devoid of outer body, tangible alarm clock, Isaac buzzes and bursts into action. Not a semblance of slumber – his final wink of sleep like the final and forced rotation of a wind-up toy. Then: Wide-eyed, right out of his bed and my-bedside-bound for his school uniform and iPad immaculately laid out the night before like a soldier’s fatigues. Left, right, left, right.

“Good morning dad, I love you, it’s 05:54, your alarm will go at 06:45, you can stay in bed,” he whispers to me and only me.

“Can I sing you a small and quiet (shhh I promise) song from school. Then I’ll stop without further notice and do my teeth and get dressed.”

After which, like a soothing early morning DJ sensitive to my emergence from sleep, he quietly provides me with a flannel squeeze of facts, drip dripping me stuff that’s in his head.

Detail on the, easily listed, 2,563 British Rail stations, plus names of lines and trains and class numbers most likely. Certainly whose birthday it is that day or indeed week; if Isaac knows someone’s name, he knows their birthday – he automatically pairs the date before telling me the celebrant, or indeed if there isn’t one (odds are it’s someone’s, a person he’s barely met, someone’s relative).

All the while watching clips – that drift my way – from his abundance of self-shot (with me in shivering tow) and edited YouTube classics and playlists. London Overground Class 378 Capitalstar sightings or parts of London Underground lines where the track sparkles anyone?

When 645am comes around, my actual alarm goes, and I’m enforced, rather than encouraged, out of bed and downstairs. Rest having been respected, time for action. Tick tock. His sensitivity of my sleep like state, a thing of the (immediate) past.

There’s now constant Isaac chat with some urgency, prodding me to wake his sleepy-head sister, lay the table together, show me him making his “breakfast masterpiece” of ready-made pancake and filling, coordinate the creation of his lunchbox.

These instructions interplay with requests of spiking and sliding relevance, like quickfire rounds of non-sequiturs. “Cup of tea for mum, get Tabitha’s uniform, come on you slow father, like a sloth. Rate the Newbury Level Crossing out of ten please. Do you like Michael Jackson. You don’t have to answer. I love Thriller. Michel Jackson had a difficult childhood and died in 2009. RIP Michael.”

(Music, at this point in our lives, is on a par with trains. He’s the human Spotify churning out names, dates, song titles and lyrics. A song I may have heard of, “do you know ‘Ride wid me’, by Nelly, dad?” – with a “bonus fact, dad, it features the artist City Spud,” that I definitely haven’t. The categories come and go, mortality a current theme, “the dead artists – Biggie Smalls, Buddy Holly, Lil Peep and the wonderful Aliya– so sad. Bob Marley, he sang two little birds and died in 1981…” Not to mention his superb voice, melodic and magically to the beat, whatever the artist – his beatbox, uncanny Marshal Jefferson’s ‘Move Your Body’ is top of my all-time Isaac favourites.)

As the morning progresses, with us up and underway, he’ll be poised but potentially squirmy as he attempts identical behaviours, timings and order – and dissuades his sister from dither, with mixed results.

There’s little leeway. With a tip into too much regiment, excess repetition, always possible. His impatience is meaningful though, such is his need to control his day. A listing of his day’s timetable, the pitch and force of delivery in concert with how calm or anxious his anticipation, has something of the yogic breathing exercise feel to it.

And quite frankly, this morning ritual is helping to run the house on weekdays. It may have what appears to be a typically autistic blueprint, but the working model powers our typical family into motion. An Isaac created timetable has taken Tabitha to a place of ‘bearable’ in the morning that’s for sure.

Following Isaac’s lead when there’s positive outcomes feels more and more like a theme these days; he initiated the sleep club after all; that blueprint can motor many things along; the dotted line to autism can sizzle with a positivity, whilst cooling in its need to be spelled out aloud to anyone who’ll listen. 

This attitude I’m adopting seems to fall in line with a bigger issue of Isaac’s independence and, importantly, his take on autism (parental discipline, in-charge-ness, family dynamics, education, occupy a complementary but essentially distinct realm, of course, and are ever present).

He owns his autism, I respect it. He knows I write this blog. To him, currently, he “has autism,” and he can do, “clever things, like, seeing these lovely new lampposts that have come to town – welcome new lampposts with your longer spikes, I’ve seen you in Watford on November the 18th 2017.”

His frustrations can be with me, too often impressed with something like spotting new lampposts one day to the next, or, more’s the case, his effortless calendar calculation, for example recalling recently when we were in a Tesco, that “on 20th May 2018, a Sunday like today, you got me a cheese sandwich from Ashford Tesco.”

His autism can also permit him, reasonably and rightfully, to touch on the challenges laid at his door to everyday, typical life. “Noise is difficult for me, please. This Christmas afternoon, I will stay at home and relax,” could have led to a sorrow among family members that he was missing out. Alternatively, as was the situation, there was an acceptance, a bold one by everybody concerned, that Isaac knows his difficulties, speaks them and solves them. Opportunities for family get togethers over Christmas, far from few and far between fortunately. This big step in acceptance is a big deal.

“Acceptance” then, subtly different but semiotically more optimistic, to the glimmer of red alert inferred “awareness”. Differentiating the two may be a luxury, but, as is the case of certain organisations like the Occupational Therapy department at Brunel University (thank you!), it’s a highly useful tactic – and rather freeing from a personal perspective.

I do every now again dally with wondering how different I am, my life is, has been, will be, thanks to Isaac’s autism. But these short lived day-dreams never see the light of day. Blanket what ifs are simply too trite to try out (parenting is the life-shifter, autism or no autism) – especially with a clarity in acceptance and respect of Isaac’s independence and maturity being the guiding principles. Instead, like savouring intake-of-breath herbs and spices from a leftfield Ottolenghi lunch, I pluck flavours from the particularly diverse and unexpected dish his life has served. The sibling relationship being one unusually special one:

There’s a quote in Anne Tyler’s Patchwork Planet which cutely observes the surprising conversational strength that comes from “man to man talks that are all numerals”. Whilst I’m very much on this – train – journey with Isaac, it’s a type of bonding being cultivated with my six year old, daughter, Tabitha too. It could be because Isaac has no space for football and the sport being belatedly open to girls, but my obsession has found an outlet of the most glorious order. A love of Crystal Palace, hatred of other teams, players’ names, results, tables, she has embraced the whole kit (worn with pride) and kaboodle (first crater of programmes, stickers and paraphernalia nearly full). The normal father and son football narrative and been flipped on its head, and I love it. 

As such, going to her first live game reached celestial levels of joy, partisanship and emotion for father and daughter. Isaac, meanwhile, went to Thriller the Musical and was equally enamoured. This unexpected chain of events I accept with unrestrained exuberance. 

Tabitha’s acceptance of Isaac and his autism is so innate, that she questions barely anything, and accepts almost everything. Like her contentment when she sees his much smaller school with so many more teachers, and hears of life skills, his need for speech therapy, travel training and more. 

That Isaac, whilst very much on his trajectory of targets and ambition, may actually have similar cognitive and educational challenges to her and her peers in year 2. That grasping the conventions of creativity and craft may jar with his dyspraxia and fine motor skills. That he could be less inclined for the rigours of homework and concentration.

What’s more, Tabitha’s commenting that she spotted a pupil being “looked after by teaching assistant – like one of the people at Isaac’s school”, encapsulated something so awash with compassion and comprehension that I can’t put it into words – so I won’t.

She’s proud as punch of Isaac’s extraordinarily encyclopaedic memory and fact-based cleverness, adores his singing and astonishing musicality. She’s known to bathe in his gregariousness; what other, nearly-teenage, brother, would shower a six year old sister with hugs and loud I love yous, proudly and politely introducing himself to your teachers, whilst giggling and being gorgeously silly with your friends.

They bicker, of course, and wind each other up. Tabitha won’t always tolerate the repetition and closed questioning. But adapting around each other does happen. At times, Isaac can actually take her literary lead and write a rhyming couplet poem, fact based and slapstick, versus her more abstract and imaginary version. Her ability for inference coming more naturally. So be it – so what. He progresses remarkably.

So, all in all, on a bright day, I beam at this cross pollination of my neurotypical and autistic offspring, marvelling at what an unusually atmospheric third space my family resides in.

What does also come with acceptance and recognising that life has these distinct flavours, is acknowledging how the challenges come and go. And being alert to the complex nature of autism can evade me sometimes.

Isaac’s Sensory Processing Disorder (SPD) has been more frenzied of late. Squeezing and seeking stimulation, a teetering on the edge proprioception (body awareness), misreading personal space, balance and coordination coming a cropper, are things he does and are amplified at times of agitation or anger or insecurity. Shamefully, when he squeezes and pinches, I can fail to get to grips with his needs myself – gritting my teeth and becoming edgy.

Checking myself through empathy and pivoting from anger to acceptance gets me back on an even keel. Body work classes among other integrated therapeutic sessions at school are critical and yield much; I try to complement them a little by dipping my toe into occupational therapy tutelage. Just reminding myself what pioneering Occupational Therapist Jean Ayers likened SPD to – namely a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly – can be instructive enough. Confirming that when things like routine are shredded, or he’s in a web of anxiety, the SPD symptoms can speed out of control, like a souped up, skidding racing car.

Isaac’s come on light years to a place that he and we accept his autism; its halo effect progressive and inclusive. Respect and knowing there will always be ups and downs help sustain the sense of us all living in a safe and happy place. A millpond with his identity and self at the centre.

After all, what happens tomorrow, who knows?

Except that there will be a 05:54 start. Almost definitely.

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