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We are ultimate dear ones for new Earth change Dancing in light, hearing waves of sound Banding as one new watcher group makes most waves in Earth pattern Waves are brought in as healing means When we are one we are great We must help world as it is bad and in need of love […]

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Discovering Problems, Creating Potential

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.


These deficits, in areas such as strength and touch, have selfishly taken away a realm of positivity I may have always possessed. Dissecting them dispels any romanticism of autism, or ‘he’ll catch up’ that may have roamed, well-intentioned and benignly, in mainstream. They provide a reality check that until now the day to day handling of Isaac’s lifelong condition has been lackadaisical.

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.


He has what occupational therapists report as ‘definite dysfunctions’ in social participation, hearing, touch, body awareness and balance. At his previous (mainstream) school, both Isaac and his teachers must have needed to adopt crude compensation mechanisms to integrate with the workings of a curriculum that couldn’t adapt appropriately.

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.


Social participation and playtimes expose brightest the folly of the non-specific, wholly inclusive approach. Galloping around making train sounds was his self-stimulating behaviour for surviving the furious environment that is the school playground. The soothing repetition went way beyond its initial positive effects, explaining precisely his deficits in play and social areas.

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.


(And how’s this for a topsy turvy thought: Isaac taking his sister’s toys and studiously playing with them alone is a good thing. Sublimating what appears to be jealousy into a desire to ape and learn.)

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.”


Isaac’s weekly certificates, which he avidly collects and collates, reveal so much of the school’s (and therefore his) industry. ‘Having three bites of a carrot’, ‘dealing with change’, ‘good listening and not having to repeat’ – in short, he’s working, and being worked, very hard in those areas that appear an anathema to his autism. Non-intervention is these areas has led to the deficits and therefore habits and limitations. Everyone, myself very much included, had given up, kept a blind hope, or consciously avoided these life skills with Isaac. Now life skills form part of his week, with patient, single minded professionals giving him the tools to succeed. Which in turn gives us the confidence to carry on the work at home – knowing when he can deal with something new, or eating his dinner at the table, tasting a new food he may have tried at school, maybe parking in a different place to a previous time. It’s far from easy, we’re fine perfecting the skill of distinguishing real distress from autistic like behaviours he can learn to manage. He will always have the generic sensory processing difficulties. The meltdowns are still explosive, world ending and catastrophic –  in many ways they are amplified and more gruelling for all parties. Transition, people leaving, will always be testing. But we are learning, just like him, a little more what his capabilities are and where discipline works.

All this is not to say autism is not championed, celebrated and respected. Indeed, it’s the filter upon which the school appears to make and evaluate every decision. They’ve seen vividly Isaac’s visual approach to learning – playing to this strength, they use the visual timetable which he rattles off to me, the whole week, in order, at least twelve subjects a day. He enchants teachers and pupils alike with his brilliant recollection of facts. This part of his autism is nourished and cherished.

Yet at times he can struggle to answer a simple question. He can be caught in a self-imposed routine and repetition rut.


The school will slavishly break down each topic in his timetable into explicitly described and audited mini chunks that he knows and expects. But then they may introduce a ‘surprise’ activity within this tight framework. Like learning comprehension in a reading class – about a certain book and character he’s prepared for. So he’s developing thinking skills and small change in one brilliantly efficient ten minute session. Totally, utterly inspired and priceless.

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.


One massive truth is Isaac’s autism has never seemed as tangible as it is now. Despite all the intervention. And that feels correct and just how it should be. His vocabulary continues to expand to significant levels with it all appearing learnt like one would learn a foreign language. He seems to rapidly search his abundance of learnt phrases when needing to express something. “I’m going to read a book, just once, because it will tire me out. Then we won’t do it for a while.” Or when he senses change: “Yes daddy, I have changed my mind, you can drive on that road, because it is like a diversion.” And when he’s happy: “I love school, I want to go there today and forever, I want to give the building kisses.” In the morning: “Is it morning time? Good morning daddy< I haven’t been asleep for a while…”

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.


His interests remain at best perfunctory. He loves lampposts; they light up his life. “But I love lampposts daddy, they make me happy.” Counting, spotting anomalies, one’s on during the day, off at night; he has a photographic recollection of locations, types, flickering ones – every single permutation of a lamppost’s life. They offer so much. And this dry information floods our airwaves as it does bus facts and general commentary and comings and goings.  

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?”


This is no political polemic about specialist schools versus mainstream. It’s about finding the best possible place for my son and his autism – with the best possible professionals and best possible environment for him to develop, and who knows, work towards a brilliant future.

A pertinent comment his teacher made to us when discussing his substantial handwriting training said it all really:


“He needs to write. He will need to write a job application form one day.”



(I always try to reply)

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Family Dynamics

Tabitha, Isaac’s sister, recently turned one – to a cringey chorus of proudly cooing parents. A mother and father whose propensity for a more phlegmatic parenting profile had shrivelled ever so slightly. Overly emotional and overwhelmed as we were by what thousands of other babies up and down the land would be doing identically.

Crawling with intent, reaching and grabbing, interrogating for a micro second, disrupting, waving, waving back, indiscriminately squishing fresh vegetable, fruits, pasta bakes – you name it – and making great ceremony by sticking them firmly and forcibly in her mouth, and the surrounding areas of cheeks, eyes and hair. Wanting to use a spoon for goodness sake. And, diametrically opposed to a sizeable smattering of responsible and committed dads, a mini-behaviour that comforts me considerably: the pointing of the remote to commence an episode of Peppa Pig. Cause and effect – tick.
Tabitha’s interactions, instinctive learning and determination for independence, contrast harshly with Isaac at one. Viewing this behaviour is as soothing as witnessing Isaac’s atypical behaviour was agitating. So when we paused to briefly take stock and analyse Tabitha at one, we allowed ourselves to take some much deserved pleasure in our little girl’s developments. A brief pit stop in sentimentality-soaked mummy and daddy land if you like.

Hesitancy holds us back most of the time though. If only because I’m not quite sure what emotion to access when pondering her typicality. Joy? Relief? Guilt at being joyful or relieved? Sad for Isaac? Happy for her?


None of the above in unreconstructed form. Isaac is Isaac. Unimaginable in anything other than his irresistible, incandescent, intriguing form. Autism is part of him. Seeped into his whole being, his psyche, his sensibility. Tabitha seems to be jolly and moving in a healthy and straightforward manner. A kind of contentment is about as close as I can get to emotional quantification.
Anyway, there’s not a great deal of headspace for pointlessly monitoring a sibling of a child with autism. Not when occupying us, testing us and at times defeating us, is Isaac’s role in all this. His place within this small, nuclear family. Made all the more vivid for him since Tabitha has started roaming unpredictably around the house. How we behave and interact as a family has become a quandary that I fear will never expire. Despite a great, enduring love between Isaac and Tabitha.
It’s not that ‘family time’ is something I imagine conjures up sepia images of blissful harmony for most people. It’s just that with autism, the concept of quality family time is an odd one. Pulled as so many of us are by convention to deliver memories that demonstrate a beautiful unity – when in reality the accomplishment of such magic is hopelessly unobtainable.

Our experiences with wider family have been instructive here. Ours is a big, boisterous, effortlessly loving brood. Idealistic and inclusive, with kids of similar ages sparring, socialising, discovering. For typical young families who thrive in a spontaneous, soulful and healthy environment, one couldn’t wish for anything more.


A thread of unambiguous visceral love runs through the amorphous ensemble. Bonds, mutual, respect and instinct – traits not associated with autism at all – the spine that solidifies any hiccups, misunderstandings or mischief. Which has made Isaac’s position all the more precarious for him and, equally, me. The social challenges of Isaac’s autism are often the ones that marginalise him the most. And amplify over time, confounding us all. Despite both the kids and adults being (incredibly) well-versed in autism, the natural social forums of family life are a bafflement for Isaac no matter the extent of endeavour by all to integrate him.

So I’ve come to terms with being absentees at get togethers. Why would we put Isaac through it? Him desperately trying to block out the sensory hell of noise and conversation he can’t decipher. And despite his cousins knowing the reasons behind his removal and supposed special treatment, there must be thoughts that this is some sort of mutinous behaviour by him.  How can they not ogle at his oddness – of, for example, his current coping mechanism doing ‘train’, where he relives, exactly and exuberantly, a plethora of train journeys loudly to himself; sounds, announcements, the lot; the accuracy, as ever, extraordinary. Normal, urgent behaviour to extrapolate himself from the surrounding madness. Where he sees madness, others see normality. And vice versa. A chasm.

But over recent weeks and months our immediate family has become a microcosm of the wider one. With all the hullabaloo of free flowing family life that our slightly solitary existence had managed to avoid, having entered our four walls. At a time when many areas of Isaac’s life are similarly anxiety inducing, calling for a flexibility he cannot fathom.


His shear physical force around Tabitha is one manifestation. Hugging, hysterics, squeezing of her. He’ll show perfect ‘baby’ behaviour, no allowances made for his bigger age and height, aping quite brilliantly her movements and gestures, so collapse is tantalisingly close. Perhaps like twins? Double trouble, an ebullient double act. Our fear for her littleness is massive of course. There’s risk everywhere. And yet, we can count on one hand the number of times he’s made her cry. Her resilience to his repetitive teasing, snatching of toys and overzealous tickling is uncanny. Maybe she knows malice is non-existent. But he’s a force around her that needs containing. And what’s around the corner?

Belongings are in peril always. Hers of course. He’s adopted an obsession with peppa pig, books, DVDs, magazines – hoarding, cataloguing. As always with the capricious nature of autism, he’ll sink into silence and the security of his phone, tube maps, leaflets, and an almost eerie calm at any moment – which fails to never put me on edge a little.


I don’t doubt a strand of jealousy. And I appreciate the keenness by so many to stress that Isaac must be showing jealousy; how normal it is and, indeed, isn’t it rather reassuring it must be the reason for his wayward, difficult to control behaviour. Well, yes. But it is a whole lot more complex than that.

As is so often, explanation, survival strategies and lateral solutions have emanated from the people of BOAT (Brent Outreach Autism Team) who doubted the jealousy argument choosing instead to discuss the arrival of a knockabout, crawling, messy, clumsy, unpredictable, presence, that test all parents and siblings alike – but who have the tools to manage. He doesn’t.


And then there is all the other parts of his life contributing to the melee. Tabitha is one cog of a complicated wheel that risks running him over if we don’t navigate it competently and coherently.

As such, BOAT looked for problems elsewhere. Like his experiences at daily school lunch; a break from the nicely regimented school day. An echoey, cluttered bundle. When his teaching assistant is stretched. Kids run amok. He stims, flaps and seeks solace. But it’s a façade that crumbles on his return home, my wife left to pick up the pieces.


It is clear his shifts in defiant, dictating behaviour, ferocity of frustration, anger and not knowing his own strength, come from a simple place that Tabitha can trigger, or school lunch, or family outings, or unexpected visitors, or pretty much anything when the day’s minute-by-minute planning has not been executed meticulously. Which is chaos, disorder, noise – any deviation from the absolute known. Any coping he has done in public is camouflaging internal insecurities and agonies brought on by sensory-processing difficulties, his non-grasping of social language, or, mainly, a lack of order. A need for pure reason and logic perhaps – his lifeblood in scant supply.

And after any event – at which the stress for him could have been imperceptible for anyone else – when he sets about recharging his battered batteries, carnage can ensue. A state of autism-induced frenzy. Rage, sadness, insecurity. His autistic traits reaching a fever pitch that we cannot douse. Rituals are rife. His routine having taken such a bashing, he’ll fixate on a memory, something specific, so desperate he is to control his environment. 


Perhaps on the journey home from a supposed innocuous park visit. Roads are a latest obsession. He is showing a black taxi like knowledge of journeys. Each, though, once completed needs to be completedidentically. Road works, a shortcut, diversions – can be critical. Scripted responses firmly and dogmatically directed by him are demanded.

 “We’ll travel on Minster Road – looks like Westminster on the jubilee like train. What does it look like daddy? Say Westminster. Then after Minster Road, Cricklewood Broadway. What line is it, is it the Over ground. Say yes, of course…”


Monologues delivered in a heightened state, where if you don’t play your part or follow the instructions he may scream, become agitated, freak out and become impossible to do anything with other than restrain and hug. If I get the specific reason a bus is not in service (“because the driver has gone home for his tea, daddy – say it”) wrong, then there’s thunder.

(He can rattle off 10, 20, 30 road names in perfect sequence to describe a journey. Together with the name of the borough that, I hadn’t even noticed, appears on all road signs. Likewise he knows from memory the entire tube map, which line each station is on. Yet, when asked he may not answer if he doesn’t feel like it. Even, or especially, to parents wanting to show off his skills. The sense of reward that we may feel imparting knowledge, a foreign concept to him).


Rituals proliferate just to relax him; having the opposite effect on us. Cooking with my wife thrice daily at least, making mini trilogies of videos of preparing specific items at specific times. Then watching them back repeatedly, memorizing and collating. Needing textures of all the foods to be the same, consistencies for stirring identical. Then there’s the journeys to the same shopping centre, set of escalators, coffee shop visited, stuff ordered, books bought, conversations had. All tightly, forcibly adhered to; an iron grip on us. Repeated behaviours that become magnified to epic, end-of-tether for us, end-of-the-world for him, proportions.

One small step that’s yielding, for now, some small gains in coping mechanisms is him doing half days at school as suggested by BOAT. The effect on my wife in terms of childcare is clearly arduous as is the exhaustion she experiences tending to his ever need, focusing on him solely – help from our part-time nanny taking Tabitha but rarely both kids such are his demands. The good news is he’s fortified confidence wise. Less likely to be knocked sideways by his inability make it through the day unscathed and not too discombobulated from proceedings. The acuteness of his autism doesn’t abate though. And of course Tabitha is around anyway.


Weeks on and he’s still confirming “Not lunch today at school?” And only recently did he tell us that at lunchtime there are “too many children in the playground. I didn’t like the noise.”

Many days, my wife has to simply claw her way through catastrophe to get to even keel.


Real life like can be real agony for him, and us, with its irregularity, impossible-to-tune-out noise and lack of structure. It’s that stark, simple and unfair. A hatred of the haphazard. “Give me some space please!!” he can plead. He has an inbred inflexibility that so, so limits what he can do.

And the upshot? A segregated, slightly sad family life. Where my wife and I split duties of a weekend and during holidays. Like ships, with one child on board, passing in the night. That way, Isaac has a 100% focus, him calling the shots. Rituals and repetition running the show, but with slightly less intensity. A tiny bit easier to manage.


It’s where we’re stuck, albeit consciously. Our family we cherish, living a limited to stop it becoming an impossible chore. Now, as we tread water between him attending the new school where we’re confident he’ll have the intervention needed. Where we anticipate a new dimension to his life – where less distractions mean his feats of memories, his humour, his extraordinary capacity to learn, communicate and more are coaxed and cajoled, not compromised.

We cower for insularity for self-preservation’s sake not selfishness. I personally get tangled taming the sorrow of solitude with the desire to grasp the nettle of sociability – knowing the stings can be more than skin deep.



It needs a doggedness that I’ve not developed. It can feel like we are two islands within an island some weekends. That’s fine for now. We’re still the proud parents of two children going about our business – just slightly apart. For now.


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