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 respond)

What’s normal?

Ruthless logic, repetition and rigidity may pervade Isaac’s behaviour, but interwoven is an element of mystery. Flowing in, out and around the factual chunks that constitute the bulk of his thinking, is an indescribable, impregnable strand of his personality that we can’t hope to get a handle of. This otherworldly trait – this outlier of a feature in his brain – can at times cast a spell on Isaac, making him rarely readable, obstructive and ever so slightly out of reach.

Often, on close inspection, when there is a mysterious onset of distress, discomfort, defiance or aggressive avoidance that can so baffle us, so weary us, it can actually be attributed to autism. Albeit in its most extreme and fascinating form. Like when he witnesses a barely noticeable change to a thing or things that we haven’t accounted for or think we can dodge.

For example, he has close to a hundred small video clips he’s made on an iphone of his train trips. Handing him the phone, his after school treat he’d spent the day fantasizing about, I realised I may have deleted or discarded one. But it was too late to reason with him as he swiped and mentally scanned the swoosh of barely distinguishable mini-still images of clips in one fell swoop of his skinny finger. Noticing in a split second one wasn’t there. Cue tears, frustration and collapse. Kicking with rage. A demonstration, not particularly appreciated by us at the time, of his extraordinary visual, photographic memory – particular to autism of course. An eye for this type of detail is practically incomprehensible to me.

Talking of his visual capabilities, any tampering with his visual mind map (which connects him to the world) places his world out of kilter – eliciting rash behaviour that can appear mysterious without a forensic done on its causes. (He sees the world the way an unfocused camera does, taking it all in, painting a picture in his mind, so everyone and everything he sees for a second time or more is in context; it’s one of the reasons he yearns repetition and feels safe and sound with it).

So when a rushing tube train was missing a tiny yellow sticker warning of objects being trapped in between doors – something I had been blissfully unaware in all my decades travelling the tube – on a stationery train let alone a moving one – he was uncontrollable with sadness and insecurity. Now, he’s learnt to put a positive spin on anomalies like this, becoming uncontrollable with glee and giggles, when he sees it ‘Look, daddy! No sticker! Train’s got no sticker!!’ Progress.

Equally, he can appear summoned by strange – invisible to me – similarities, like the time he became agitated at dinner because there was ‘a monster, with big starey eyes’. Things settled when we realised two innocent bagels and a bread knife sitting in close proximity to one another, were the culprits.

The triggers therefore for what can appear mysterious behaviour can be located in a semblance of logic. But only with exhaustive analysis. And often, when he throws himself into a prolonged bout of stimming (self-stimulating behaviour) of train sounds, flapping hands, seeking reflections and sensory fulfilment, one can but be mesmerised by his whole, daunting world. Autism is a sensory processing disorder, and often the chaos and colours of our world simply bamboozle him. He needs to retreat and reboot for whatever reason he cannot articulate. In his time, in his way. “Don’t talk to me, daddy. I’m a little bit busy” will be his delivery to us, in earnest.

Maybe all this mystery is what led Autism expert, Uta Frith, to evocatively refer to children with autism as having a ‘fairy tale like quality’. There’s certainly a perceived magic to autism, a wondrous quality. So much so that some people honourably celebrate it above all else.

It would be dishonest however of me to make the same claims. To talk endearingly and exclusively about the magic of Isaac’s autism would be a sleight of hand. I would be deceiving myself. The truth being that in the early days, if I could have waved a wand and made ‘the magic of autism’ go away, I may have done.

Too much pain has occurred, too much worry lies ahead for such sentiment. Too much pining for little pleasures like play dates, parties, and knock about care free fun that I’m too feeble to supress successfully; the consolation that he’s content to miss out, tepid comfort at best. Too many experiences where we just can’t brook the dam-breaking tears. Too much time selfishly feeling stultified by the shackles of routine, the hours spent on trains (a treat for Isaac, at times a tedium chamber for me) weekends at home spend wondering, What if?

No, autism, for me, is about reality, not magic.

Our obsessing of Tabitha, Isaac’s sister, lands a heavy blow to any beautifying of autism anyway. At six months old, assessing any signs of the condition is perhaps futile. Still, we struggle to not put an autism filter over every tiny thing she does or doesn’t do. Eye contact, eating, initiating gestures. Poring over pictures of Isaac at the same age, looking for clues, doing detective work like some sort of a crank doctor. It’s driven by an oppressive fear that if not tamed, could override everything we do, feel or think. So far, so controlled. But when I can’t halt my darker trains of thought of imagined missed developmental cues and subsequent similarities with Isaac, I hurtle to a precipice.

Which all bears out the truth that autism is not something I wish for. However, wishing autism away from Isaac? That’s something different entirely.

 

Autism is a condition to respect if not revere; restricting it would be doing Isaac a great disservice. And yet, I find myself in a place where it’s felt Isaac’s autism should be managed somewhat. At worse, this feels like a normalisation process, where fitting him into our world is the ambition. At best, it may push him comfortably, towards that oft-repeated but vitally important position of ‘reaching his potential’.

This quandary hit me like a rocket in a whirlwind 24 hours very recently. We had a meeting with his teacher at his mainstream school, where the talk and feedback was overwhelmingly positive. Our hearts melted as his teacher told us how Isaac had ‘pressed a soft button in his heart’. Small steps to socialising were taking place. His learning was improving speedily and convincingly. Discipline wise, things were looking up. He ‘didn’t have a naughty bone in his body’. Tantrums happened but diffused with minimal fuss. Misunderstandings were being ironed out.

But then, the talk teetered on pushing Isaac that little bit harder, challenging that little bit more. I can’t stress the goodwill, application and drive of his teacher and the school in general. But my sensitivities arose, my ‘normalising’ autism antennae were on high alert. Isaac was coping in the playground on his own better; less and quieter stimming, was seen as a major positive.

Underneath this steely resolve Isaac was showing, is there, however, a fragility that ferments until set free at home? After school he has become tremendously trying. Mysterious bouts of negativity ooze from him, desperately hanging on to the minutiae of routine, hoarding his magazines, eating even less than normal. His lunchbox often remains untouched despite his now ‘integration’ into the dinner hall. The noise he may be managing, but to the detriment of his diet. These are the fine details of autism not everyone grasps.

His playing with other kids was seen as another positive but was in a context of obsessive dependency on certain children that they were ‘dealing with’ by separating him. Isaac’s gambolling when I drop him off clearly grates the other kids. How much do they know about autism? Where are we going with all this?

 

A kind of conclusion to our meeting was a nod to how you couldn’t spot some of the kids with autism in the school. This assimilation as a kind of badge of honour. This attitude was indeed honourable if not misplaced. I felt some concern. 

The antidote to this was the next day and a visit to one of a very few schools specifically for kids with high functioning autism and Asperger’s – kids like Isaac.

As we were shown around by one of those people whose affinity with autism is astounding, I struggled to stem the tears of hope. Expressive and reacting to the teaching, full of questions, these pupils’ autism was being handled exquisitely as they were able to break free when need be, talk in their own way, receive occupational therapy; at all times they were cajoled by professionals correctly and compassionately.

Highly, highly emotional, I could see they were happy, focused, cared for and celebrated. In fact, I could actually see Isaac in them. This was something I hadn’t experienced before. Usually, when I’m peering in from the periphery at family functions, disconnected from the dads-and-lads larks and japes, the boys I witness seem a different species to Isaac at times, so made-for-the-world they are, so conventionally developed with their dialogue.
In short, when I entered the school I felt like I’d discovered an autism-friendly, safe and very special whole world of learning and love. Normalising, the pressure to conform had no place. Yet life skills and the curriculum were at the core. Somewhere full of potential, free from the burden of fitting in.

Isaac has a lifelong condition that, for all its peculiarities – some predictable, some mysterious – means he will always be different to a degree. My job is not to smooth out those differences, however hard they frustrate me and him. Isaac is an effervescent boy – to crudely normalise him to fit into our world, would be to flatten that sparkle in him. And that would be unforgiveable.

Could Christmas get Isaac’s vote?

I rarely reminisce about Isaac’s pre-school years. In fact, in my more subdued moments I feel robbed of having fond memories, a victim of autism’s indiscriminate nature. Where there are few landmarks to joyously recall; just some shaky ground of part relief, part fear when Isaac’s words trickled then tumbled awkwardly and interaction was intermittent at best.  There are no magical times conjured by a curious crawler and chatty toddler. Comparisons with proud parents as wide eyed as their experimenting offspring sent me into mild torment. They grow up so quickly, people would preach. Cherish it. Really?

Any traces of what could well be warm collections are clouded by what I know now but didn’t then. I shudder at the sheer vulnerability of my family battling with Isaac’s behaviour, blind to what was going on. Holidays and birthday parties in my mind are the stuff of nightmares.

Christmas could so easily fall into this camp; the one before last probably does. When, unlike his peer group, presents were too abstract for any kind of appreciation. Sparkly trees and decorations were invisible or irritating to him. And the XMAS dinner, where sitting with all the extended family, pulling crackers and cracking up at simple and silly word play was as alien to him as the gravy-drenched turkey and trimmings that didn’t pass his lips.

But quite gloriously I have wonderful memories of last Christmas – that stand toe to toe with my maudlin memories of Isaac’s early years. It glows like a diamond in my mind and I am all the more grateful for it.

Christmas 2011 came just shy of a year after diagnosis. A time when the recalibration of our lives was taking shape, if not complete. Crucial to his development and learning was actually our learning. Of him and his mind. And it was this which enabled the Christmas I wasn’t sure we’d ever have. At a time when all the Christmas mores of countdowns and anticipation and present giving still made little sense to him (they do now in an endearingly methodical manner –using them as an information gathering and processing exercise.)

My wife would prove to have the most liberating of revelations at the most relevant of times. Planning for the unknown can be as paralysing for us as experiencing the unknown can be for Isaac. We catastrophise what may happen to such an extent that we end up stuck mentally and stuck indoors.

The elation of being invited to a once-in-a-lifetime Christmas party at Downing Street was swiftly replaced a swirling, spiralling avalanche of anxieties – Isaac not wanting to go in, then not wanting to leave, being in a place seething with protocol, rooms that were strictly no entry, realms of other children roaming, hailing a  taxi in a busy street. Our catastrophising left us on the cusp of not going all together. But we did. My wife had the revelation. We allowed ourselves to not be overwhelmed. To think of how great it could be. How much Isaac’s come on. How we would be denying ourselves and him. How we’d have strategies in place for all eventualities. Maybe what also pushed us in the end was the fact that we were invited as guests of the Special Yoga centre that was soothing and nurturing Isaac so well. Which meant Isaac was invited as he was a child with autism. Not going to ‘number ten’ would have been criminal.

We prepared meticulously of course. Isaac was ‘going to Samantha’s house, which has a black door that says 10, in a black car’. There would be ‘balloons and chocolates and cakes and singing and no bed and no bath’. Father Christmas would be there too, but we didn’t dwell on that – Isaac wasn’t a fan.

It’s a strange sensation, doing something personally historic whilst fretting about Isaac. I only half took in the imposing portraits of Prime Ministers. I breezed through number ten to keep up with Isaac, instead of slowly, deferentially shuffling in. But this day was not about deference, it was a free for all in the best sense of the phrase. A democratic and dreamy event where all the kids could be free and just be.

Isaac loves to scamper around which, despite the grandiose chandeliers and ornate sofas, this slightly creaking, ludicrously vast space practically encouraged. We let him bound around confident that nowhere was ‘out of bounds’ – with no despairing glances from other parents saying Isaac had no boundaries.

The whole party was fantastically autism friendly. Christmas oozed, but only if you seeked it. Bright balloon trees, tinsel, treats were in abundance. Equally there was space, quiet, a floor to lie on, air to breath. A sensitive natural light in side rooms.  There was none of the claustrophobia and sensory intensities of parties that are so punishing for children like Isaac.

In places he’s never been to before, Isaac seeks familiarity. It’s his oxygen for staying serene and composed. Hence the presence of delightful kid-loving adults who he knows so well with their smiley and cuddly personas – from Mr.Tumble, Fireman Sam, to TV presenters – was fortuitous. Samantha Cameron actually played a back seat role, engaging with the children more than the adults. No pomp or greeting.

Many children, with myriad needs, milled about calm but excited. You could practically sense the relief of parents that here, in this monument to law, rules and etiquette, no-one was judging anyone. For parents whose lives must be more exhausting and challenging and upsetting than ours, there was a joy and, perhaps, contentment.

Isaac wanted to know that Father Christmas was there, but didn’t want to see him. Instead we played games in the side rooms with giant, multi-coloured balloons which he adored –  him letting them float up to the chandeliers; me jumping up to grab them. Chandeliers in peril? Samantha Cameron smiled, willing us to carry on playing. By the end, Isaac defaulted to ‘self-stimulating’ behaviour, running up and down the oak walls, intently staring. His version of downtime. And handled sensitively, our time to take him home. Which he understood would be in ‘another black car’, with the promise of ‘trains on the computer’ when we got home.

And in the black car, as we ventured home through a Christmas lit-up London, our faces lit up with euphoria at a party to remember for ever.

I was on the verge of tears from start to finish at this Christmas party that considered its guests exquisitely. For probably the first time since diagnosis, we genuinely felt that nothing could go wrong. We witnessed Isaac have a little bit of the heady thrill of a kid’s party for the first time.

At the last party we’d braved, I was on the verge of breaking down from start to finish – it was cluttered, chaotic and therefore cataclysmic for me and Isaac. And it’s the fear of those cataclysmic episodes that makes us catastrophise forthcoming events. But our lesson – thanks to my wife’s revelation – was to plan for the unplanned, not be scared of it to the point of inertia. That was liberating.

Equally as liberating is knowing that sometimes it’s ok to not go out. We do a risk assessment; too many imponderables mean we can make an informed choice to stay at home, safe in the knowledge it’s the right thing to do.

The upshot?  Leaving the house, for however tiny a trip, will leave us with the memories we’ve so yearned for and will reminisce about for years to come. Whatever’s round the corner.

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