When I sit and succumb, the hover of the real world for Isaac can be ear splitting. Turning twelve will only turn up the heat. Puberty and emerging adulthood, cuteness subbed for assumed craziness in the eyes of the unreconstructed, uninformed part of the population. So much to fret and fear. A future to fathom.
Insulating him is in his worse interests, but this world, with all its debris and discrimination to dodge. Indeed, the present can produce anything at any time for Isaac; out-of-his-control-ness, cancellations, his religion of rituals being broken. The tyranny of his impossible to keep pace with timekeeping and arrangements:
“This word ‘might’ just makes me so cross. I need people to not disobey my plans” is a current complaint.
Daily logical loopholes can spin him into irritability and discomfort and some confusion – for example as he continues his deliberate and conscious ‘getting to know you’ between his mind and body (particular to his autism possibly) the horror of remembered illness will make him suddenly wonder agitatedly, “it’s rude and unpleasant to burp in public dad. But I have I do it when in case of the vomiting. Or like now when I have that hiccup feeling. Don’t get cross!”
All in all, then, there is an element of forever being at the fork in the road with Isaac. But more than anything, more than these ever-present pitfalls, it’s those real world juddering events that hover hardest and erupt quickest.
With the worst possible landing recently – potentially devastating his development and identity – which was the proposed taking away of his school place by the council; until we wrestled and wrestled and won it back. What a scrap, like a sinister playground game of mercy, with the inevitable – yet unintentional – taking of sides by many, a sad side effect. It emphasized the sorry tale of a creaking SEN (special educational needs) system that’s unwise and unfair to examine in detail here – the politics, human rights and more. Suffice to say that a transfer to an utterly inappropriate school was hoisted upon us when we least expected it. The real world of crude school transfers ambushing his fluid and nurturing environment, his rightful place, where he was flourishing.
We sank like stones into the treacherous waters of tribunals and appeals. It affected us deeply, sending us into exile from everyday contentment for several weeks. Where nothing mattered, fear and despair dominated.
My wife, as ever positioned gallantly at the top of the parent podium, engrossed herself in detail and justice, fought and won. How simple to write here; how complicated the whole egregious process. The school, battling for their model pupil (semantics important: boy thriving thanks to needs sublimely met – as opposed to parental brag) were brave beyond imagination. Cheerleaders and champions, they carried me through this dark time. Fiercely pre-empting what would be the taking of a baseball bat to all their endeavours.
No individual was to blame for the whole process, I genuinely believe. Instead, an algorithm crawling spreadsheets of an exhausted education system, locating transferring 11 years olds, beep beeping when costs could be assessed, and potential moneys saved. Then automating the server to spit out the life-changing message in the face of these unsuspecting parents.
Bureaucracy blinds everyone and binds us all from progressing in this dire system. In our case, I imagine, it wasn’t until real humans unwrapped the evidence, pushed by pushy (in the best sense of the word) parents, and delivered the humane response. Lawyers were needed to liberate from the lack of logic. We were the lucky ones. He remains at his school.
Our emotions, in a heartbeat, swung from the painful last final breath before drowning to floods of relieved tears when the news that he was allocated a place again was broken.
We hadn’t been able to shelter Isaac from this intrusion from the real world; he needed to visit the potential school; but a light touch on the heavy scenario of him leaving could be applied thankfully as the looming summer holiday packed with dates and times and activities took precedent – a buffer to protect him.
And with the hover of that real world event trailing off (but could it come back?) what I do more of is flip life’s cup which can be half full to brimming over. Within minutes, I’ll be tapping my foot in time to the future path Isaac could beat such are his traits. His charm, comedy, accuracy, dynamism make people literally swoon. I see it, I know it.
His commitment to cuddles. The intoxicating politeness and formalities. Those impromptu demonstrations of a particular obsession (trains a constant, the Lion King a current) that effortlessly twist open the tap of compassion:
“Hey, guys, guys, pay attention please,” he’ll suddenly say in a social setting, pausing some meandering chit chat like a magnetic primary school teacher, “I’m going to perform for you some scenes from the Lion King. NO interruptions and really, I must add, I don’t like compliments. I. Just. Don’t!”
Wide smiles and delight follow as he performs note, word and cadence perfect chunks of the script, before the most rapid of wraps – without a trace of curtain call – and retreat to his own world. Controlling? Yes. But also, part of him that quite simply woos.
Indeed, how can I not be excited by where these sort of strengths and skills could take him in life, when, from nowhere, whilst wandering near in the vicinity of a train station (I didn’t even know was there), he’ll hear a single hoot, and comment, “that’s the class 168 turbo star engine on the GWR line, a rather beautifully designed and lovely line, we must visit it.”
A truth is that Isaac introduces a hyper connectedness as swiftly as he withdraws to create his own mega sized personal space. It’s a microcosm of the attempted grasping of the slippery soap bar that is his being. Felt as keenly by us as him. I may rebut his repetition fact churning as much as embracing and being astonished by it. A reality of my behaviour that won’t always be in tune with his. The consistency of autism versus the inconsistency of typicality perhaps. We are all always learning – and always will be.
(His sister, Tabitha, fine-tuned from birth – knowing nothing else – can sense his specific wavelength at times. She seems to know when she’ll get an excited response to things like, “Isaac, name which stops they announce mind the gap at?” and when she won’t. Reciprocity between them is a joy to witness.)
So, in the aftermath of the school scare, this all tells me, that, when possible, I should step away from sitting and succumbing and stand against the prevailing headwinds of the unknown.
And when my eyes and mind prise open, I see something has been playing out. Which is how the school experience seemed to dovetail with positive developments in him.
I don’t know, but what seems like a journey – through the medium of transport naturally – to discover his identity and learn independence, could have in part been triggered by the school situation ceasing and settling:

“Dad, what a terrible childhood you had, with no dot matrix indicators to tell you when the trains arrived and departed,” Isaac proffered not so long ago.
It was a startling, mildly amusing and Isaac-specific probe into me as a youth that has subsequently been regularly reinforced with, “I’m so obsessed with the Southern Line where you lived – kind of near Gypsy Hill, Julie Berry does the announcements.”
A new theme played out by him, maybe timed with the reassurance that he’s staying at school; secure, safe, and where he could now be “a young man, NOT a boy.”
The family tree was soon transposed into a tailored tube map. With a desire for a very exacting next epic trip: to visit the nearest stations to where relatives grew up.
Starting with a “small stroll around the quaint Wanstead station on the Hainault Loop of the Central Line (I love that baby!) where your mother, my grandmother, was a child. Let me show you the wall tiling that was recreated in 2006 and, and…”
(An abridged version, all facilities and design histories of all stations, of all extended family members’ places of birth, had been memorised to prepare for this expedition of intense Isaac-identity exploration.)
I should know better than to fear the real world then. To be driven dizzy by never knowing what’s around the corner. As I think on, what it’s taught me is Isaac’s own strategies for managing the real world whims will always be, to a degree, unexpected.
Of course, the hover I’ve talked about will always bother. Be they small, medium and big world events.
And I can’t deny my alternative calm and satisfaction with Tabitha’s conventional path of linear learning, letter by letter spelling, read and write, timetables, ‘where do I come from daddy?’ orderly two-wayers – all chiming with her easy to asses ability to take waywardness in her stride.
But independence and identity could be firestorms for her. Schools, social pressure. Who knows what struggle will look like for my six year old?
There’s actually a wonderful contrast with Tabitha and Isaac. Their lived out differences give off an aroma like cosy home cooking.
Isaac, with those esoteric strategies, can be a locked door to certain life experiences, however hard you bang on it, until, whoosh, he opens it wide open and beckons you in.
Like him literally teaching himself to swim after bouncing, shallow end repetitious behaviour for years, and disruptive lessons. Suddenly the sensory hit of holding his nose and holding his breath suddenly made sense to him. Seeking under water immersion. Before the currency of mask and snorkel equipped him for a pitter-patter, pant-panting of swim shuffling around the pool. The kicks got stronger, momentum happened, his unique style was born, like a turbo charged puppy, and he’s doing laps.
Maybe instead of events hovering scarily they could indeed be stirring something – conscionable am I of a glass half full vision.
Because what about his openness and gush of emotions?
His feelings flood into conversations and eclipse everyday – with my logical head on, unnecessary – embarrassment. I’ve taken solace from research reported at this year’s International Society for Autism Research (INSAR) conference that found ‘autistic teens are more positive and involved during parental conflict than non-autistic teens’.
The research framed this due to deficits in social skills, but as highlighted by Cat Hughes, from Autistica, this can as likely be framed as positive. At such a volatile stage in life, open and inclusive dialogue with parents can only be a good thing.
In Live a Little, by Howard Jacobson, having a child is described as ‘a privilege. A frightening privilege. But a privilege.’
What the real world throws up will always frighten and keep me on high alert. But as Isaac gets older the privilege of having him in my life is just as likely to excite and electrify.
14 Responses
Another brilliant piece! Love all your descriptions of how life is for Isaac. Wonderful!
Love Mum xxc
Thanks a mill! X
Another fascinating read, packed with insight
Thank you!
This is another fascinating instalment in your amazing story, which is expanding and developing as are your lives. It’s wonderful and has me gripped. From Dad x
Love that, thank you.. never stop your train chats with him! Xx
A fascinating insight, brilliantly written. Thank you!
Thanks, Laura.. really appreciate that x
Amazing – brilliantly written and so educational and informative. Isaac is a legend xxx
So kind xxx
Those who know and love you and Eliza will recognise how you muted the possible change of school episode and the inhumanity of life-changing decisions made solely by distant budgetary dictat. Isaac is a beacon to anyone who doubts the basic validity and value of society’s stake in the fullest development of all of its citizens. Including those at both ends of the age spectrum sporting wobbly teeth!
Loved it Matty…#copyisbeautifullywritten xx
Ah wow, that’s just so wonderful and heartfelt. Xxx
Matty, thank you for allowing us an insight into Isaac’s world – he is such a phenomenal kid and you and EJ are the most incredible parents – you continue to inspire us. Portiax
That’s just such a gorgeous message. Thanks Portia xx