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.


15 comments:

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

    Great line. Exactly this! Totally identify.

    Our son was in mainstream school for first two years. He started special school in September, so nearly a year complete. Life is still a challenge but his anxiety levels are greatly reduced and so is the rigid, controlling behaviour in the house. Sometimes change of environment can help. Alison (mum to 7 year old with ASD, UK)

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    Replies
    1. Hello Alison
      Thank you. It's great when people identify! So glad to hear your son's anxiety levels have reduced. Gives me hope and positivity knowing that special school can impact the controlling behaviour. Thanks for sharing. Matt

      Delete
    2. My Name is Stacy Leo from usa, I wish to share my testimonies with the general public about what this same man i once saw on this forum called Dr.Agbazara of AGBAZARA TEMPLE has just done for me , this man has just brought back my lost Ex husband to me with his great spell within 72 hours. I was married to my husband Alana Evans, we were together for a long time and we loved our self’s but when I was unable to give him a child for 4 years he left me and told me he can’t continue anymore then I was now looking for ways to get him back until i saw Dr.Agbazara contact on this site about his powers. Please do also contact him in any problem you are passing and see for your self on:
      (agbazara@gmail.com) OR call him on (+2348104102662.)

      Delete
  2. Matty, another from-the-heart, honest and educational read. What an amazing family you are xxx

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  3. My dearest Matty
    I struggle to find the words. Once again, I'm at my little café enjoying the calm at the beginning of my day and without warning your blog crashes over my horizon with the indiscriminate force of an asteroid. But this time with a laser-sharp delineation of your, Isaac's and Eliza's current state of mind (and family life).
    With every blog, though, you manage to inspire each one of us to lift our thoughts beyond the present, and despite autism's lifelong condition, to see a place were Isaac can acquire those coping strategies that will allow him to enjoy to the full his special position in our family that you so lovingly describe.
    May that place not be further away than his new school. And may the 'Happy' Isaac we know and adore be the Isaac he knows and is at peace with too. With fondest love always, Pxx

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  4. You write so beautifully. I'm so lucky that you articulate to all that read this what we both go through. I couldn't hope to. Xx Your Wife

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  5. Wow. This has brought tears to my eyes. Your writing is amazing! I can understand all of these feelings as I went through an isolated stage when my girl was younger, and even now we cannot be as social as a family as I'd like to be. We are not quite as restricted as you, but I know that feeling of always weighing up whether it is worth going out at all, and who the trip would benefit and at what cost. It is exhausting, and we too often have to adopt the split family life so our eldest gets some exposure to how life could have been :( I totally empathise with all your feelings about the sibling also - in lots of ways I have more worries in life for our eldest girl who has had to learn to compromise so much more than other children do. I'm hoping that you all have some support or respite to help you through this (and that your wife has someone to talk with who understands how it is for her?). I also hope that the change to the new school does mean more support and less chaos for you all. x

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    Replies
    1. Hi there
      Thank you very much. It's reassuring hearing people who've been through the same experiences. That's interesting you should have worries re your eldest daughter who's had to compromise so much. I've begun to think about Tabitha and what the effects could be on her. There's a big expectation there I guess. We're working on getting support and making things better - thanks for asking.

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  6. 'He has an inbred inflexibility that so, so limits what he can do. And the upshot? A segregated, slightly sad family life.'
    Yes the inflexibility inherent in autism......that's why our family has put all our resources (time and money) into setting up a school that helps students to become more flexible, and better regulated emotionally. www.brightfuturesschool.co.uk For us, flexibility of thought (and consequent improvements in adaptive behaviour) are key. I hope Isaac finds an approach that helps to do this in his new school.

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    Replies
    1. Hi Zoe
      Thanks for writing. Your plans to set up a school sound inspired. Helping students' flexibility sounds wise. Best of luck with it - I admire your spirit greatly. Matt

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  7. Jon Snow led me to you - thanks for sharing your family experiences. Your determination and love for your family shine through and help us to understand your experiences. Can only wish you 'good luck'.

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    1. Thank you - appreciated. Jon Snow is a great supporter of autism causes. All the best, Matt

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  8. I hear you. Ships in the night. Our middle son has autism and it is massive for the others but I believe they will be kinder. We will raise them to help and care, to protect and sometimes ignore ; ) bless them. You do your best but I won't let it rule us. With love in our hearts little man... Suck it up.

    Great blog. Keep inspiring us, challenging us and helping us try to be the best we can be.

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    Replies
    1. Hi Katherine
      Thanks so much. Love the way you plan to educate your other kids - 'sometimes ignore' - yes absolutely! Thanks for reading and feeding back - makes the blog worthwhile. Matt

      Delete
  9. My Name is Stacy Leo from usa, I wish to share my testimonies with the general public about what this same man i once saw on this forum called Dr.Agbazara of AGBAZARA TEMPLE has just done for me , this man has just brought back my lost Ex husband to me with his great spell within 72 hours. I was married to my husband Alana Evans, we were together for a long time and we loved our self’s but when I was unable to give him a child for 4 years he left me and told me he can’t continue anymore then I was now looking for ways to get him back until i saw Dr.Agbazara contact on this site about his powers. Please do also contact him in any problem you are passing and see for your self on:
    (agbazara@gmail.com) OR call him on (+2348104102662.)

    ReplyDelete