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With Father’s Day beckoning, now could be the time to indulge in fatherhood musings. How my son, Isaac, has affected any perceptions I may have had. How he enriches the experience. And challenges it. How his autism may have sent us off course for a bit. How my role as a father in my universe sits slightly out of kilter with others’ universes.
But that feels unnecessary and unimportant right now. What feels very right and very relevant this father’s day is to celebrate something, dare I say it, more fundamental to Isaac.
His mother, who gave birth to him in barbaric conditions. And balanced recuperation with a stressed baby from day one.
His mother, who from that day to, well, perhaps forever, bats off judgemental glares and tuts from people who should know better but know nothing at all.
His mother, who had no place to hide from what felt like hell, when her husband could escape daily.
His mother whose instinct told her something was wrong but battled on because what else could you do? Who nodded unknowingly when other’s shared their similar stories; because in reality they were different.
His mother, who ferried around her sinking and struggling son to therapists and doctors. His mother, who never flinched in her unrequited love for her unresponsive son.
His mother, who kept calm when diagnosis was delivered. Seeing a future not finality.
His mother, who learnt and listened and devoured and dissected. So she was armed to the teeth with rights and knowledge.
His mother, who made the system fear her and not vice versa. Who got Isaac the right support, his statement of needs and who never ceases in improving his life.
His mother, who found him a school that was right. And another one when it all went wrong.
His mother, who campaigned not just on his behalf but on the many like him. Spreading awareness, sharing, inspiring, strengthening, surviving.
His mother, who sensibly delayed having a second child for the sake of her first. Before finding the inner strength to create a sibling for Isaac. Mixing nature with counter-intuition and most of all courage.
His mother, who tolerates swings in behaviour of an epic scale. Experiencing outpourings of love, bundles of anxiety and no little cruelty, day in, day out.
His mother, who knows how to push not punish. Comfort not compromise. Who can temper frustrations with empathy. Whose maternal instinct never wavers.
At best I play second fiddle to my wife’s orchestration of Isaac. Managing his days, taking him places, speaking to his school, arranging his time. She is mum, mentor, therapist and teacher. His absolute anchor. Which is why I see this Father’s day more than ever for what it is. An affirmation that what I do as a father is enabled and enhanced by the miracles managed by his Mother.
As a fairly steadfast secular Jew, religion in its singular, most fundamental form was never going to be an (al)mighty force in Isaac’s upbringing. Secular Judaism serves up head-scratchers of, well, biblical proportions though. Anyone well versed in it knows that psalms, texts and liturgy form but a slither in Judaism’s complex cultural kaleidoscope.
Even though I’ve always dwelled in the ‘barely-believer’ camp, like so many others an arcane Jewishness has run through my family’s veins. From child to adult, I gorged on the rich pickings of a decisively pick and mix approach. Where a wholesome embrace of certain traditions over others appears arbitrary yet is utterly expected and rather effortless.
If this fluid yet full-of-foibles approach to religion is round holed, then autism is, of course, resolutely square-pegged – meaning Isaac’s Judaism has never really taken shape. Random festivals, sing-songs, all-join-in stories and surprises, full on Friday night dinners, the synagogue as social hub and more, ours is a brand of Judaism that’s more party than preachy. What it isn’t is logical, descriptive, sensible, straightforward.
As such, the cornerstone of the (secular, religious, whatever) Jewish calendar, Passover, passes us by. As the extended family sit down to celebrate, we’re seated elsewhere. It’s a giddy and glorious affair. Children the heart and soul. Colourful stories of Jewish emancipation are read by everybody, symbolic foods – bitter, sweet and worst – are eaten, dares are made. Wine is tasted, the youngest child sings, presents are hidden.
We tried a fair few years ago, ever so slightly. But raised the white flag early on when the hurricane of noise and food and frolics blew Isaac into major over stimulation. The spartan surroundings of a spare room the only solace. Since when we’ve retreated into risk averse avoiders.
I’m denying him something precious I know. But Passover is so bound up with trip wires. Familiar family houses lose their familiarity; people jovially jostling for space and sound. Dinner tables become sinisterly ceremonial with plates and dishes, colour and spice, and much mystique. Groaning – literally for Isaac – with foreign foods that fizz and froth at him. Cutlery, crockery, glass, china – clinking, smells overriding, people shouting, picture books of cartoonish death and destruction howling at him. Not just a sensory sickness. The scalding blur of all this clutter, audibly and visibly also blighting any order, any uniformity he yearns. Comprehension can collapse like a house of cards.
Unreconstructed, this type of boisterous Jewish cultural onslaught is not on for Isaac. The collateral damage too much. For now. Denying can actually be a decent thing to do also. Even the most basic tenets of Judaism have seemed to favour isolation over congregation for us as a family. Synagogues are bustling, busy places with singing and chanting that can become exuberant and painfully loud to many ears, sensitive or not. The protocols are potty. There’s a haphazard nature of services that can mean a swift swing from loud informality to hushed seriousness.
Our one religious-ish experience five or so years ago, around diagnosis time, had been torrid. It was at an informal service in a synagogue for parents and their little ones. Jollily conducted by an expressive teacher, wide-eyed, miming motions that enriched and complemented tales of adventure and imagination. Restless, Isaac was disengaged. The tut tut brigade were on tenterhooks. Unaware as I was of his visual struggles to decode gesticulations (how my daughter instinctively, understandingly, unlike Isaac, apes hand movements and body moves with glee is so instructive). I attempted and failed to inspire him. Leaving in collective anguish meant no return.
Maybe the sorrow of this occasion has amplified in my mind. It happened during the epoch in our familial narrative of unknowledgeable nursery stuff, nasty stares and nerves fraying. There’s an element of self-infliction with all this avoidance, knowing how many, many Jewish communities boast an inclusivity – full of intention and with a degree of success. Welcoming is ubiquitous I know that. But instinct, sociability and illogical rituals are the dominant currencies in so many synagogue environments, making the battle for someone with autism appear demanding. My stance on Judaism therefore remains devoutly in stasis.
Nevertheless, I have a daughter to add to the complicated equation now. Who will nimbly fit into our faith’s idiosyncratic offerings that are full of warmth, love and family dynamics. Issues around identity that I could put off start to surface too – I have a responsibility to at least inform and open opportunities for both my children. And quite frankly, I am laden with a sadness about the absence of Judaism in my house; the silence haunting me a little like a lingering and lost Hebrew melody. So I am beyond grateful to two recent events that forced me out of this spiritual vacuum. And have proposed potential aplenty.
The first being the invitation to Ellie’s Bat Mitzvah (coming of age ceremony for girls). Ellie being a 12 year old first cousin Isaac adores with all his heart. And she loves him back just as much with a quite startling tenderness and understanding. Seizing on the solemnity of the day with brilliant simplicity, Isaac would announce with gusto for days and weeks before that “on Saturday November the 28th, Ellie will become a grown up”. Religion and sermons, ceremony and celebration, heritage, family, culture, discussion, children, a spirited and spiritual unique flavour – Bat Mitzvahs encapsulate that brand of Judaism I’ve talked about with its dynamism, dialogue and general richness. However, just this once, any amount of dwelling on the fissures that a visit could very possibly force failed to begin to chip away at Isaac’s absolute need to be there.
We arrived to witness men and women sitting separately in the synagogue. An irrational concept to most people, let alone purveyors of logic like Isaac. He grasped this potential hurdle neatly however, leaping between my wife and me; utilising it as an opportunity to orientate himself in a new setting as opposed to processing any peculiarity. The mechanism of manically moving about a new location is one he often sets in motion on first visits. It is a method of focussing and stabilising – sometimes with success, sometimes not. My wife, admirably, courageously, unexpectedly, remained composed in the face of his energy. The physicality and enthusiasm was in the main treated with a compassion by most of the congregants.
Indeed, Isaac’s reactions and conversation, sparkling with honesty, spoke mischievously to some of them. “This singing is silly. It doesn’t work”.
His usual candidness induced humour: “Daddy, why are you kissing everybody, stop kissing the women.” “You don’t kiss grown-ups, you only kiss adult cousins and you mustn’t hug teachers,” checking himself before deciding who best to hug.
Regularly he enquired, “where’s Ellie, I need to see her, she’s becoming an adult.” A bit predictably and not a little pathetically, I was displaying a very detectable (by Isaac as well) anxiety. His mini mood shifts and irritations were manageable but always felt on the urge. A few rotten reprimanding voices in the congregation agitated me.
But there were a few moments to really cherish – which were when there was most jeopardy: when Ellie took to the stage to talk to everybody and share her learnings, and the subsequent address by the Rabbi. After some excited cries of “it’s Ellie”, he settled into a calm reverie as she spoke. Bewitched almost by her oratory.
And then the Rabbi spoke, and Isaac, with (as usual) not a trace of timidity, felt the urge to copy him a little as he spoke to the congregation. Isaac announced the Rabbi’s presence with aplomb and sincerity. The kind rabbi asked if he had “a sidekick somewhere”, an “echo perhaps”. To a now warmed up audience there was much merriment as Isaac repeated “echo” a few times and then hushed. Borrowing his school learning, he must have internally compared being at synagogue to being in an assembly, which, the two events now aligned in his head, made himself be quiet and disciplined. A real feat. We were proud and humbled.
Ellie concluded proceedings by announcing that to celebrate her Bat Mitzvah, she was making a donation to the charity, Ambitious about Autism, in honour of her cousin Isaac. “It was an easy decision,” she said, “as he’d taught me so much.” The hullabaloo at the end was a little hellish, what with people rushing around, snacks and wine, the crowd. Leaving via a playground and a neat finish as internally articulated by him, didn’t occur. The distress was transient, as we managed to manoeuvre out of the hectic synagogue, kind of in one piece give or take a lost skullcap or two. All in all it was quite a moment in ours and Isaac’s lives.
Which was built upon considerably a month or so later when my wife and I had the privilege of attending the Bar Mitzvah (coming of age ceremony for boys) of the wonderful Reuben – very similar yet very different to Isaac – who attends the same school. Electing not to take Isaac made sense to him; Reuben is a friend he sees at school, why would he see him not at school? He is a ‘School. Friend.’
A judgement-free, relaxed and open community, in a space dripping with inclusive spirituality, Reuben was honoured and seemed comfortable and comforted in his family’s unique synagogue. Reuben’s year’s preparation of chanting a significant Hebrew portion of the bible came to fruition fabulously. A beautiful voice resounding round the synagogue, a community delighted, heritage honoured, joy everywhere.
The Rabbi’s sermon sent me into emotional raptures. Veering between absorption and a little distraction, Reuben looked on whilst being celebrated completely: “We love you,” said the Rabbi. “You’re kind. Your personality so special. The room lights up when you enter.” “You’ve taught me what the scariest film in the world is!” At which point, unabashed Reuben climbed the pulpit and exchanged hugs with the Rabbi. Afterwards, a lambent Reuben told me, “I did my Bar Mitzvah. Everyone is very proud of me; I made no mistakes.”
This perhaps more than anything has created a path in my mind I can follow to drip a bit of Judaism in my family’s life. This could be Isaac. Yes, we have to show the devotion and immersion of Reuben’s family. Yes that me be unobtainable, unsuitable and a million miles off. Do I have the strength?
But with all the complications and randomness and individuality that comes with both, autism and Judaism can be joined. They can be bedfellows. And that is rather astonishing.
Is it too severe to say autism serves up a degree of daily dread on parents? Perhaps not. There’s certainly a never ending sense of uncertainty.
He can sway between extremes alarmingly swiftly; middle ground is rarely inhabited by Isaac. Hence our every day, every waking hour default is ‘on edge’. Always prepared for some heavy lifting.
Our nervousness will vary vastly in terms of intensity. Weekends and holidays, where a lack of routine can take Isaac hostage in horrible ways, could mean it’s heightened. A precisely prepared school day with plans aplenty and a sense of cautious calm could even kickstart the day – although my stoic wife may have to suppress post school potential fallout.
Very likely compounding the need to confirm the day’s itinerary, something will be mentally fidgeting him which he will attempt to articulate through his repetition or recollection of facts:
Like a train journey he recently did that stopped at an unannounced station: “daddy, why did the train stop at Basingtoke on the way to St. Ives on the national rail services? Why didn’t the driver say so? Because he did say the train stops at Reading and… (lists them all)?”
Maybe it’s his grandmother’s new journey to work. Something someone said at school. Events, dates, buses, trains.
My wife possesses a particular patience with connected tenacity to confidently locate his real worry about the day ahead: maybe he knows nothing’s on in the afternoon and that’s scary, perhaps he’s going somewhere there may be a dog (he hates and is scared and repelled by them and their, I imagine, erraticism: “dogs are rubbish…,” he’ll say, “they have to go away…stupid dogs”). Or is it a day when I might be home late from work (because I was on the same day last week). Whatever he’s recalling – however long ago – will mean he’s experiencing the same stress levels as if it’s happening there and then, in the moment. His mind can appear a minefield where treading carefully guarantees little in the way of protection from unexpected explosions.
Because at vulnerable times the inventory of knowledge and experience I’ve harnessed about Isaac emits mental tremors in me before I attempt to do pretty much anything. I can catastrophize to the point of crippling anxiety. Indeed I’m certainly not the first person to comment that parents behave in autistic ways so absorbed are they in their child’s autism and its attributes. And so keen are they for an antidote to the chaotic autism-unfriendly, spontaneous society we live in. It’s common sense damage limitation. But it can also be damaging. I know that.
A recent holiday triggered that survival tactic which then overstayed its welcome so suffocating was its nature. The first half of the holiday was as care free and conventional a holiday I believe we’ve had. With extended family nearby, we stayed in a cottage on a cute little farm; it was symmetrical, organised with well-behaved animals. Which family members visited us and when could be plotted and itemised by him. Every day the chickens and sheep and ducks, safe behind fences, could be fed with Farmer Tim at the same time. His previous blanket wariness of the animals became an accepted awareness. No feeding of course, and a demand that the animals ‘stay away please’ but it was an (somewhat edited) idyllic few days.
Making Isaac authentically happy (as opposed the faux happiness of transport talk or being boisterous) is hard to come by. When I offered an early return from the holiday he visibly loosened like a tight knot magically undoing itself. He played nicely with his sister, ate a sandwich and even went outside. But was that happiness or so-big-it’s-impossible-to-quantify relief?
A process of marginal losses happens. Isaac’s limited eating, limits further. His propensity to do anything lessens. We all follow a strict routine. Meltdowns aplenty. Ipads are a relief. Life contracts to very little when all these compromises are made.
And liberating us from this not so long ago were the objective Custodians of Isaac’s potential and welfare and hope. His therapists and teachers at his sanctuary, his school. Who eased us in from the autism waste ground we were scrabbling about in. They spoke of his timetables, how he’s loving laughing and socialising at school. Their pride in him. His hilarity, imagination. Mostly though, they implored us to own our lives. Leave him with grandparents. Indulge but know when not to. We innately know what he can and can’t do, when to or to not push him.
Importantly, the next time I’m caught in an autism rut, where I lose myself to its supposed traits, I’ll try to tell myself it’s too complex a condition for such, well, crass simplification.
We really can lighten his mood with a slightly more muscular approach. I barter with him – eat, play, see certain folk; and you can then tell me whatever fascinating encyclopaedic bit of travel trivia you absolutely have to tell me (like that there are three Streathams on the national rail services which he’ll list, before naming linking bus numbers and more.) We can dampen that daily dread – it’s possible on occasions.
There’s an invisibility shrouding autism that I see vividly, as if in neon lights, so evident is it.
What I am witnessing now in my 21 month old daughter, Tabitha, seemingly on a typical developmental trajectory, emphasizes the functioning of a toddler without autism versus one with. She points at things, babbles back and forth with me. She waves and plays appropriately, with imagination, impetus and meaning. Tea parties, pottering around, blowing kisses, feeding dolls. She seeks interaction and play with other children. My, she gains my attention – and in a confident, communicative manner (some would say diva-ish). She shows a powerful instinct and intuition for moving around, responding, creating, learning.
In those early years then, whilst I saw all what was atypical and was silently alarmed, autism awareness wasn’t there to provide me with any sort of solution. Not till his diagnosis just after his third birthday. More telling, I believe others – friends, family, professionals – perhaps saw very little in the little he was doing; unrelated ‘delays’, toddler tantrums, maybe indiscipline, rogue parenting.
When Tabitha cries not wanting to get off a train, or let go of a toy, the toddler tears subside rapidly. In similar occasions Isaac wept and wept and screeched and shouted. His despair was dogged.
What has come naturally to Tabitha, took, and can still take, painstaking endeavour and laborious learning for Isaac. Even now her holding of a pen or cutlery, physical gestures, reciprocal cues and more come easier and more fluidly for this little girl. Compared to Isaac’s heavy, laden, elaborate approach – remembering to share, comprehending the definition of it, why it’s a good, nice thing to do; moving his hand back and forth as it signals hello or goodbye. The defaults for Isaac are so unspontaneous, everything needs accurate recall, industry, an all-encompassing literal-ness that can be construed as one dimensional. That’s before accounting for the myriad sensory processing challenges and absolute engrained commitment to memorising, parrot fashion learning of every speck of detail, important or not, and of course, repetitive (not productive) play. It’s all so burdensome.
Maybe people are uncomfortable, or more probably, unaware of this and seek to smooth out. Making invisibility of the condition as glaringly visible to me as it’s always been:
Isaac’s acute anxiety means hearing a firework can trigger impossible-to-sedate fear at bedtime. But all kids get a bit frightened at night, right? Perhaps not to the extent that obsessing over Firework night runs well into March and beyond. Regularly enforcing that next ‘November I’ll sleep with mummy and daddy’’ and that each night imploring me to say, identically to yesterday that ‘no, there won’t be fireworks’, and ‘if there are, I won’t see them?’. Over and over and over again.
What about love for train leaflets and maps (identical, similar, functional, whatever); the need to possess and pore over. Surely lots of boys collect and catalogue stuff, don’t they? Maybe, but not when that hunger for hoarding cannot, will not, be sated, masking a deeper, more traumatic struggle with the world. Pinpointing Oyster contactless payment leaflets at stations and demanding I take 20 – that he already has – can lead to calm and a transient contentment. But the paraphernalia rapidly turns to a crutch, joining the untouchable hundreds that populate his room. Inanimate but perilous, should they vanish from his watch.
Food phobias, at times an inability to eat, only eating specific foods in specific locations at specific times. Well, we all know fussy eaters. Not to the extent where hunger can be pretty much bridled thanks to the maelstrom of other irritating, infuriating issues clawing away at him. Hunger almost becomes a controlling comfort for Isaac – I guess.
Indeed, food ensures we have a daily taste of the complexities and conundrums of Isaac’s autism. When he wakes up and even before his usual, daily reciting to me of ‘today’s timetable at school daddy’ is a strangely forlorn ‘my tummy is full, I don’t need breakfast’, what’s imminent is an unleashing of emotion verging – or hurtling into – a breakdown.
In fact, the lunchbox rules are oddly simple, just very tricky to adhere to. We can’t make his lunchbox in front of him and there must be no mention of its contents. At all. It needs to magic itself into his school bag, out of sight, out of mind. If that happens he eats the contents at school, every last bite. If he sees any of it being made and/or any of what’s inside, he refuses to eat it.
There is a flip side to all these behaviours that seem similar to typical children but are so different. The reigned-in ups. Rare but as not as rare as they used to be. His liberated joy when all goes to plan. Like a Sunday session at my spacious workplace. A warming, server-whirring silence. The environment as he expects, calm and sensitive, with people accepting his questioning of names and addresses and nearest stations, adoringly enjoying his descriptions of them as ‘handsome men’ or ‘lovely ladies’. The sometimes bizarre conversation starters, minutiae infused comments, squeezing and infectious physicality can be seen as the eccentric behaviour of a young child (he looks young for 7). For example, his phrasing (‘my eyes are wet’ when he laughs and laughs, ‘will my head come off’ when someone tries to explain ‘open mind’) can make people enchanted by him. But I wonder, is his age a big factor in this generosity of spirit?
This is a hunch, I admit. But I suspect a reality thanks to the stats around bullying, exclusion, lack of provision, low educational achievement, poorly trained teachers, homelessness, unemployment, depression and more. Not to mention pure labelling and stereotyping.
I guess a healthy awareness, acceptance and an appreciation of difference is what we can strive for. A young teen at Isaac’s school, when Isaac was bombarding him with odd questions said strangely joyfully ‘this place is weird… it’s probably why I belong here’. It made me smile – a self-aware comment on difference, and why it’s ok.
(I always try to reply)
Isaac’s immersion into his specialist school (for children with high functioning autism) has shown some of the marks of a fairly bruising process. And the onerous work has only just begun. We’re seeing a sensitive but substantial stripping back of some seriously stubborn layers of entrenched behaviours, habits, limitations, fears. I have no doubt that so many areas of his development have until now been neglected, denting his constitution. Physically and mentally. A shudder is sent down my spine, contemplating what would happen if he were to remain saddled with certain, what are rightly classified as, deficits.
He blended as well as he could at his old (mainstream) school considering the pastoral approach that was necessitated by class size, desired integration, and non-qualified staff. Such were the goodwill and intentions and support, I hesitate to cite his considerable developments were in spite of the imposed ethos not because of it. However, his current school’s classroom assessments jettison any ambiguity about a need for intense and individually tailored programmes.
I’m imagining that he was sensitively placed in the periphery for physical exercise and any ball sports so his underdeveloped body awareness and balance stayed that way. His stretched teachers must have tolerated rare scribbles when he attempted handwriting because there was no one to provide the one on one labour intensity required.
Through no fault of anyone, Isaac would have been drifting in activities, seemingly content and being involved ever so slightly. But this drift, this surface deep thinly veiled non-developmental behaviour, easy to repeat for him, easier to accept for teachers, would have been insidiously stunting and indeed marginalising. There was daily fall out in terms of his moods that I’ve talked about before. Knowing that long term damage was clearly happening too has unsettled me somewhat.
Indeed, in one of our more heart crushing sessions with Isaac’s psychotherapist, she made the knocked-me-for-six observation that Isaac doesn’t know how to play. He simply hasn’t ever done it. Play, a natural, sought after, intuitive, life affirming activity for typical children. An alien, complicated, bamboozling concept for Isaac.
Heart breaking by the psychotherapist. But, as with so much emanating from his new school, enlightening too – offering up glimmers of hope. Specialist school is bruising for its pinpointing of challenges, healing for how it deals with them.
Like a slow turning tanker, sent ever so slightly off course, I’ve discovered riding waves of positivity and potential, knowing real, honest insight can reap so much.
Take handwriting. My inclination was to wallow in reports of inabilities to develop finger separation, his frustrations at the necessary tripod grip, the clear need for major work with fine motor skills. Whereas Isaac’s tenacious teacher pushes and compliments and improves and stimulates. His writing has literally transformed. At night he deliberately and defiantly stretches his fingers, discovering a dexterity, before formally announcing to me, “Daddy, today a certificate has been awarded to Isaac Davis for holding a pen properly. Well done Isaac.”
Yet at times he can struggle to answer a simple question. He can be caught in a self-imposed routine and repetition rut.
Likewise, his repetition needs are an ingrained feature of Isaac’s very existence. Always will be. But gentle easing out of, not so heavy reliance on, can take place. The genius strategy here is mentoring sessions with the elder boys. Who “like to repeat; we did when we were young like Isaac, but we don’t anymore. Isaac won’t always need to.” Who better to understand a little boy with autism than a big boy with autism? Who knows the desires and impulses and defaults. And can integrate them with socially appropriate behaviour. This is life enhancing stuff of a dizzying degree.
His order can always be jumbled, with tenses astray. “Where’s the 302 bus, I might have lost it.” And it’s all delivered with a clunky, metronomic rhythm. This is him. It has an almost beautiful realism and logic. When I said to him “come on mister” recently and he got agitated and countered “No! I’m Isaac. Mister is for teachers”, I could but go concur (kind of) apologise and go with him. The school seem on the same page – it feels like they write the pages. Gloriously they’re as smitten as we are by my son.
These sort of passions – their pros, their pitfalls – inform the armoury of knowledge the school possess about Isaac. They can then work with him, push buttons, reward and restrict, so accelerating to a potential. Teaching him life skills for example in a methodical, easy to digest, autism friendly manner, gives his preparation for an integrated, inclusive life. This is what I feel when I hear: “Today I did life skills. I made toast, daddy do you want toast? With honey or marmalade. In a toast rack, that’s where toast is made. Do you want toast?”
A pertinent comment his teacher made to us when discussing his substantial handwriting training said it all really:
Being in possession of a single care in the world should be one concern too many for any seven year old. Let alone a seven year old buttressed by physical health, familial security, stability and comfort. But part and parcel of autism’s package is some wayward brain wiring that seems to spark major anxiety not to mention a very real possibility of mental health issues. From an incredibly unfair, early age.
“Mummy, who’s looking after Tabitha after her sleep number one?”
“Is daddy going to work now or very soon?”
The harrying begins before breakfast. With many questions and answers compiled – out of necessity – during the previous 24 hours. Scripted, by him, without ambiguity, tonally specific, not a word out of place. With all the information needing regular reinforcement in the form of repetition. To not conform, to answer without precision or attempt to divert, is to risk agitation at best, most likely meltdown. To therefore execute any plan is a highwire act, the more mundane the more menacing; such is his need to control, dictate and deliver, the tiniest deviation will trigger upset. We are hostage to who goes where, when and how. Popping to the papershop on the way to the station when it hasn’t been planned and discussed and repeated? Forget it.
There’s an overriding need to control everything that means the routine obsession has mutated into other forms of repetition, detail and description. He mines me for minutiae, mainly things I’ve told him time and time again. (Offering up new information, even in the factual, dry way he desires so desperately is hit and miss. The discoveries of detail need to be initiated by him in the main). People’s addresses, their whereabouts, train stations, street names, bus routes, places we’ve been. Things people have said, announcements train drivers have made, announcements train drivers should have said but didn’t. And dates. Of all events. All unerringly accurate. And all of this, this avalanche, delivered at pace from the moment he awakes, identically, forcefully.
“Why has Tabitha got no clothes on?”
“Can I tell you something…The light bulb on the street post in Chestnut Road doesn’t work? When will it work? Now or very soon?”
He knows the answers, they’re facts burned into his brain. But it’s not as simple as information over imagination. Everything seems in visual, photographic form, a moving tapestry he seeks to maintain. Like when he listed (off the cuff and unprompted) all the stations on the Jubilee Line that have a letter ‘p’ in them. This info had come to him effortlessly but pressingly; and of course, correctly. So as ever, a small light is shined into his big brain, that when I’m being positive and embracing enjoy and marvel at. Which is not always. Too often his attempts to make us answer everything, try our patience – and we come up short.
(The closest he comes to a relaxed joy, when the tempo of his thinking slackens and settles a little, is, as I’ve said before, when journeying anywhere on the London Underground. He exhaustedly reads all signs, memorises announcements and is energised by intersections. The whole tube map seems to appear in his mind’s eye, each station, line and colour, a kaleidoscope he lives and breathes.)
During the long, drawn out, empty summer break (his baby sister a permanent, chaotic presence too) this perpetual state of botheredness my son has been in has persecuted the whole family. Knowing his despair and demands – but having blunt tools at best to deal with them is a numbing, powerless state of mind to be habiting. Bogging my mind down with Isaac’s fragile and frazzled mindset has been like brutal combat.
But mercifully hope is revealing itself from this dark, deranged place.
It comes in the form of his new school that he has just started. A rather beautiful, inspiring place that battles for around 40 children with high functioning autism and Asperger’s Syndrome. After the mainstream struggles – despite admirable intentions – I have faith that Isaac will flourish here. Focus will be on his unique strengths and interests. Strategies tailored to overcome difficulties will be at the fore. Academic achievement will sit side by side with social, emotional and personal development.
I hear of a holistic approach, where he is solely in the hands of experts. A joined up support where he’ll benefit from occupational and speech therapy, yoga, sensory integration and more. Where there’s a necessary and welcome very low ratio between pupil and teacher. Plus a pastoral care that sits above everything. Knowledge of autism unparalleled. The condition respected so the child can be pushed appropriately. A balance that only the most skilled and informed professionals can perhaps keep.
Some preliminary sessions with the psychotherapist have told us what we expected. That the battle between autistic and non-autistic traits is being lost. Obeying his orders means living in a regime that’s doing none of us favours. That the relentless repetition leads to mindlessness. That we are accommodating not addressing this mindlessness. That, above all, he’s anxious, worried, on edge primarily because the world and its vagaries simply doesn’t work for him.
Now, at last, I know a team is in place. One week in, I sense an ever so subtle aura of delight is emerging from him. Replacing the mainstream school scrabbling about, are the people who will know what’s best and truly deliver for him. Now he’s somewhere that possesses the tools to make my boy happy. Which is the least he deserves.
(I always try to reply)
From around one year old, milestones around Isaac’s development became millstones around my neck. Waving, exploring, walking, talking – the lack of – burdens that bore down on me. Isaac’s angelic looks and throaty, totally contagious cackle was countered by a thunderous and tortuous, impossible to read despair and sadness. There was little else in terms of human interaction.
Then the diagnosis of autism. One mammoth milestone. The confirmation of a lifelong condition that would deposit many a milestone into a morass of maybes. Yet forlornly foraging around in the mental fallout from the diagnosis – after the shock, the tears, the reassurance, the genesis of readjustment – I did discover a perhaps perverse positive in this. A relief even. That maybes and milestones are ok. I broke free from the tyrannical mindset of ‘things must happen’ or ‘things must not happen’ ‘at certain times’. The anxiety ebbed somewhat.
This sat very comfortably with a paradox that is bang, smack in the centre of parenting a child like Isaac. Every minute of every day is planned assiduously. You learn to leave no stone unturned. No surprises. Events, visits, meeting people – all scripted tirelessly. Respect autism and expect no rebuttal. Yet, beyond the here and now, well, you don’t think in those terms. Days can be predicted, life’s journey – with its milestones around everything from riding a bike, to first friends, to birthday parties, to swimming, to teams and clubs, to sleepovers, to school plays, to hobbies, to exams, to parties – anything but. You take each heavily itemised, meticulously audited day at a time.
And what I see heartens me as much as it hurts me. Because I see autism amplified whenever developments are achieved.
A tremendous truth is that Isaac has reached many a milestone with aplomb.
He is developing into a social animal (did I ever think he would?). Initiating interaction. Starting conversations. Showing warmth. At school, this social juggernaut of a boy appears catapulted into the playground. With not mere gusto but the gust of a hurricane. The mini-monologues demonstrated both his vocabulary and propensity to repetition that can restrict him. “Welcome back. What’s your name? Who’s picking you up today? Say your mum, say your mum” These are said daily, with a charm – and a compulsion for confirmation. And frankly, other kids can be riled by the repetition. Not all. But walls of silence and huffs of irritation, are more than detectable. I worry, but my powers of doing anything are impotent.
His days are punctuated with the need to affirm small events like this – from the past and about the future. To keep that equanimity in his consciousness. They are the tentacles of this ever more complicated calendar that inflicts his mind. With no margin for error. Again the unambiguous nature of autism diagnosis will always anchor Isaac to this behaviour that if not handled delicately with a finesse, can tip into the negative. In fact brain mapping and imaging research echoes this too and more – with evidence for overdevelopment in the regions that deal with decision making and the sorting of information.
With all these emotional, social, and cognitive leaps he’s accomplishing then, autism has remained a tenacious presence. Even his self-awareness too with a new found ability to articulate his sensory discomforts. “It’s too strong, too strong, no thank you” referring to any clothes that aren’t super soft. Or “I banged my head” if he has, I think, a headache. Learned cues versus intuition and instinct induced expression.
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