Kindness is everywhere

The very things that many people think make the world go round, actually make the world go wrong for anyone associated with autism. Hustle and bustle, chin-wagging, dropping everything to do nothing, spontaneity, chilling, trusting instinct, nous, crackling atmospheres, surprises, adventure. Society is bred and nurtured on wholesome truths like variety is the spice of life. When for so many touched by autism, variety is the spectre of life. A world where the primers of improvisation and intuition make it a world wrought with bafflement and, quite, frankly, danger. Off script, on high alert – us and Isaac.


And that’s just the uncontrollable base climate we inhabit. Before we’ve even considered the bolts of prejudice, cuts and an antagonising system that regularly blow up in our faces. Or indeed the ill winds and choppy waters of Isaac’s future – education, employment, relationships.

Battening down the hatches has its appeal, believe me. Burying our heads in quicksand, getting lost to a limited life of fierce logic, linear living and uniformity. Scripts, structure, rigidity, predictability. Repetition, repetition, over and over.


But doing that is such a disservice. This deference to Isaac’s controlled calendar of specificity; where he calls the shots of what to do, when and with whom from the comfort of his ever decreasing comfort zone of categorising, lists and scheduling. Instead we try ever so tentatively to tread beyond the timetable. As, indeed, does he. One step forward, two back, as I’ve often said. Challenge him with too much change and it all gets too quarrelsome. Pre-empt his shrill tones of rage and remorse with just a thimble full of new stuff and there can be progress some of the time.

And revealed to me in these positive and proactive moments – when brightness seeps in and there’s buoyancy and a bouncy spring in all our steps – is that Isaac’s existence can be one to really revel in. That despite how ill-fitting the world can be for his autism and dyspraxia (from sensory overload to the ubiquity of physical and visual disorder) right now, permeating this 8 year old boy’s climate is an extraordinary kindness. We are discovering microclimates of care and love orchestrated by friends, family, even strangers. At this very particular moment in time.


His slightly professorial persona makes loving people’s eyes stream. Our loquacious little boy disarmingly (unknowingly) charming others with his scripted announcements and super logic – on arrival at our house, people are greeted with “You’re alive! Welcome back. Are you staying for a long, medium or short time? Did you drive or walk?” (And on and on). Saying a hundred words of detail and minutiae when he can say one. Very literal, very long-winded.

Out and about, his turn of phrase, turns heads. Bringing joy more often than not. Who can’t fail to warm to a young boy earnestly commenting that he is “so happy when I’m on a bus; having such a lovely time. Can we watch a little bit of buses and trains please daddy when we leave this bus for the street near the station at Highgate? Highgate has a capital H. Capital letters are for restaurants, people, names and places.”


In public, Isaac has also started to wear ear defenders to manage clatter and chatter. Just witnessing people’s smiles and warm recognition means for those moments a microclimate is robust and a great place to be. For everyone somehow.

Thoughtfulness can be found in the least expected places. Some recent repair work to our house meant a cavalcade of builders disbanding in his space – and disrupting. The noise and mess could easily have accelerated in Isaac’s troubled mind to a torpedoed home landscape. Step in builder Jim and his innate appreciation of autism, and perception of Isaac.


After answering Isaac’s barrage of questions – some very intrusive like, “Who were you on the phone to?” he replied “Neil, he paints walls. You’ll meet him soon.” Not being phased with “does Neil have a mummy and a daddy?” Not flinching at his repeating of questions, sensing how relaxed it made Isaac. Before long Isaac was helping him lay carpet protector down. “It’s like a sport’s obstacle course at my school,” a typically bizarre Isaac-ism inspired by a subtle visual connection no doubt, and Jim agreed wholeheartedly. In those few moments, the groundwork was completed that eased so much of the subsequent house work.

Fanciful maybe, but it even felt he allowed for Isaac’s visual perception and motor skills challenges, showing him where work would happen, bricks moved, tools left, mess cleared. Unifying for him this tapestry of disturbance to his world into a digestible, comprehendible whole.


And recently, where there’s been jeopardy there’s been a real kindness too. The London Transport museum in Isaac’s mechanical but full-of-meaning words is “a wonderful place, my favourite in the world, a short distance from Leicester Square, where I can get books and toys and watch trains and stay for a really, really long time”.

But what if he arrives there and it’s not yet open? A kink to the flow of the punctiliously prepared day exposed already. Like a cumbersome computer ever expanding its ram capacity, Isaac’s ability to store information increases by the day; the flip side being a crash when the storage malfunctions will be ever more dramatic.


Like all crashes, however, if people act quickly, the impact is softened. The staff we tweeted as his day’s solidity slipped from him with this unpredicted barrier of a closed door responded with alacrity. Just as his stricken self was bemoaning with real distress that “this place is rubbish”, a saintly individual opened the door and allowed him early, exclusive access. The aware and considerate staff made for a micro climate of autism appreciation where Isaac could freely frolic around in train bliss.

Talking of trains (which Isaac rarely doesn’t do) Isaac’s monologues of multiple station names and their adjacent roads are – at the times when he’s open to communicating this extraordinarily processed and recalled information – received with relish by friends. In awe of his photographic memory and encyclopaedic knowledge, blessed by his idiosyncrasies, these fleeting episodes affirm the value of his ‘difference’ and how it can instil optimism in all. 


In fact he possesses an ever increasing, loyal and more than understanding band of buddies. Cousins mainly, who understand the need for one on one so will selflessly come round alone for a playdate with Isaac. Where he may squeeze parts of their bodies for sensory input and happy social expression; and to compensate his struggling body awareness. He may need more treats, dictate when he immerses himself in his iPad, watching something he’ll learn by parrot fashion and regurgitate in times of stress. These few cousins more than tolerate – they get and feel taught too. The lack of abstract chit chat is made up by admiration of his humour and personality. Even the impossible to manage despair and sadness he (very audibly) feels in his marrow at home time, when transition tests the inflexibility autism to the max, is met with no judgement or irritation

When things are good, it’s an extended family micro climate where his exuberance, eccentricity and infectious hysterics, just makes them smile and laugh. It’s so gloriously spirited.


And, no one finds him funnier than that big, at times immovable, fixture in his life, his sister, Tabitha. Someone who needs to be kind and caring forever; perhaps when he’s not being. Her resilience to his (actually in the main, benign) physicality defies her little-ness.

They clash, of course. My wife mediating magically. But there is a kind of beautiful complementary nature to their interactions. Her typically evolving play is imaginative, implying the fine spatial and visual skills that he is so bravely battling with. Compering her mini tea parties can become quite chaotic – she creates, he crash, bang wallops. But Tabitha loves his rebellion somehow.


Both types of play have merit – they simply must do in our universe. And I’m convinced Isaac picks up the pros of reciprocity in transient times. A light goes on, for a spilt second, as he witnesses the reward of sharing; and they both beam. He calculates cause and effect using her as some sort of giant abacus. He still demonstrates a propensity to repetitively play with inanimate objects. Most recently absorbing himself one dimensionally in a piece of pizza dough – he spoke and cared for it quite lovingly; it was moving; Tabitha seemed captivated too.  

As she was, as if seated breathlessly in an atmospheric auditorium, by his extraordinary delivery, word perfect and completely from memory, of the entire Gruffalo story; most amazingly, in the exact tone and tenor of the film they’d both been rapt by. This sublime skill of his – entertaining and enthralling Tabitha (and us) in equal measure.  


Finally, and so fortunately, we have family who just rally round where necessary. When I was struck down by a 24 hour debilitating migraine, a loving grandfather picked up the pieces with immense thoughtfulness. Isaac’s schedule had been torn to shreds; me and my wife were no longer going away for the night; his grandparents would no longer be staying the night. He wailed at bed time that “my papa has to be here in the morning,” because that’s what had been planned, a nugget of fact he was grasping on to in a frenzy. Quite beautifully, papa (having not stayed the night, because I was bed ridden) returned in the early morning to stabilise his grandson. He went out of his way because he perceived that was the only way.

All these events and relationships emphasize just how safe and comforting the many man made microclimates of kindness, openness and awareness are, when we are lucky enough to find ourselves in them. Sometimes in public, usually not. Where awareness has been impressed upon people with vigour.



Who knows the longevity of this not impossible to locate kindness? I feel tears when recollecting the tantrums that people interpreted abjectly in the early years, when kindness was at best evasive. I block out the din of inner dread when contemplating him getting older. Where the world is one of dipping in and out of things; with intuitive filters and edits life-saving tools for folk – anathemas to how Isaac sees the world, pursuing excessively, fixating, immersing, obsessing. When his quirks may be not as refreshingly received. A crushingly conformist world at odds with those deemed odd.


Yet, for now, the 8 year old Isaac dwells in certain places and climates where kindness abounds. And for that, I’m incredibly grateful.

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Dear Teacher


On one hand I can understand how innocent you think your project is.  Just send home a paper about ancestry and ask kids to have their parents fill in the ancestry for mom, dad, and both sets of grandparents.  They return with it, you have a great class discussion, everyone learns something.

I have one problem with that. The traditional mom-dad-kiddo family is not so traditional any more…
What about students in those non-traditional families? Those in foster care? Single parent households? Adopted? Kinship care? Protective custody?
What about them? They may not know. They may not ever know.
Did you think about the families who had to deal with parents who’s rights were revoked? Families who were abandoned? Children in foster care who will never know anything about their birth families?
Imagine my shock when my son produced a family tree paper asking for his family ancestry. Imagine my shock when he asked me if he had a father and why he couldn’t remember him.
Let me share something with you, you can’t spring something like this on families and assume all will be well.  My honest response was not pretty. Truthful. But not pretty.
It shouldn’t matter. Honestly, I didn’t want to really discuss it because it shouldn’t matter. He technically does not exist. But thanks to you… He now does.
My son isn’t alone in how much he struggles.  Many children, disabled or not, struggle mightily.  Can you imagine how the child without one or both of their parents feels when they bring this paper home and can’t fill it out?
That is the case with us. Technically, his father does not exist. He is not a conversation that happens.
You see, a number of years ago the court decided that he was, in fact, a rather crappy and immature human being and revoked his parental rights. They saw him as unfit if you will.
You read that right, the court revoked his parental rights to his child. Not that he ever wanted anything to do with the kiddo…
Let that sink in.
I’m sure you’ll feel mortified when you read my note and find out that his father’s rights were revoked and that until now, he didn’t even know he should have one. He is not a topic of discussion.
The kicker? I guess they really don’t share custody information despite saying they do and requiring me to prove it to the school with a copy of the order… Well, so much for that.
I’m really surprised that you would make such a basic assumption about families in this day and age.  At least warn the families that such a project is coming home. Let the family prepare for how to answer those questions or to opt out.  It’s really not something you can spring on someone like that.  I know I’m really bad at making things up on the spot…
It has really opened some wounds for me in many ways… The kiddo is struggling enough and now he knows his own father couldn’t be bothered with him. He doesn’t know why but I do. I won’t write it here because it’s reasoning that needs to come directly from me to my son, but I will comfortably say that he needs to burn in hell for what he said to me and the language he used…
These kinds of questions, especially without any preparation, can (and have) become a serious issue in a household like mine.  It’s not a subject that can be taken lightly or easily.
I went to Facebook with this because I was so upset.  My concerns and upset were shared by many from different backgrounds. I have adopted friends who especially felt the pain of it having done these types of assignments in the past but were left invalidated by it.  
Every family is different.  Family dynamics are different than they used to be.  Teachers need to be sensitive to these ever changing dynamics.  Teachers need to respect and be sensitive to how families operate today.  We long longer have the dad-mom-kiddo norm.  It is simply no longer the norm.
Please, be more sensitive to the culture that exists today. Adjust your thinking and ideals to match the students you serve in your classroom.  You owe them that much.
I leave you with this AMAZING video that was shared with me.
I know I couldn’t stop crying.
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