The weight of the world on tiny shoulders

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.

Isaac loads his days, and quite possibly nights, with an assortment of cares, frets and stresses – too many to numerate – that take counter intuition and patience to even begin to quell. Many of them, of course, centre on his desperate, pathological need to manage and compose his days with strict, sequential events he’s familiar with. And he will prowl after my wife and me seeking clarification and confirmation and minute by minute commentary. Over and over and over again.

“Mummy, who’s looking after Tabitha after her sleep number one?”

“Is daddy going to work now or very soon?”

“Can we go to Costa Coffee on Finchley Road before the clock clicks to PM?”
“Daddy, where are your friends? Are they at home or going to work?”

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 no let up. No respite from a need to balance his ever computing mind, the oxygen of literal information his survival. Survival, not satisfaction. Or contentment really. Answers provide transient reassurance, ephemeral composure, as opposed to any overt happiness on his part. These cares of his, these things he really, really, really worries about with their terrifying capacity to dominate him and therefore us.

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.

“Daddy when you go to your office near Oxford Street, will you touch Oyster at Dollis hill and Piccadilly? Why?”

“Why has Tabitha got no clothes on?”

“On the Jubilee line, why does the man say stand clear of the doors? Why ,Why?”

“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.

Despite all this, I can’t make as bold a statement as Isaac is not a happy child. He implores happiness in us after any distress. Or even randomly. He will flood with delight at unexpected moments, demanding ‘cuddles’. But authentic joy has a manic, frenzied edge; a kind of chemically induced hysteria if we comply consistently with his commands. And within seconds, he could be grasping his ears, full of tears, punching or pushing, screaming.

(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.)

It’s as if he has a different setting or temperature to us. Swinging in seconds from radiating elation to reaching boiling point. Acclimatising to his meandering mental state can be unachievable.

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.

Here, perhaps happiness for Isaac can be attained. A place made up of people who will discover him – and him, himself – in a way no one has before. Because a condition as perplexing and otherworldly as autism needs professionals and carers to lay the groundwork for others to tread carefully.

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.

There’s psychotherapy too – a potentially unsettling idea for a parent. However, when aligned with strategies emanating from the school, the thought becomes bracing.

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.

And making the world work for him will be painstaking and harsh and challenging. Just assessing the sensory processing hell he clearly experiences (beyond the straightforward autistic ones of routine, order, self-stimulation) makes me realise the urgent intervention needed. Streaking through his body and mind are sensitivities that need dealing with. Wanting to be squeezed, demanding pressure. Aversion to so much clothing and all labels. Needing to smell people. His many food phobias. Freaked by dirt. Terrorised by the irrational movements of animals. Pigeons in particular and therefore anywhere associated with them. His clumsy and poor motor skills and lack of body awareness work against him in ways I can only imagine. The torment he gets from certain noise and smells. All unpredictable, all potentially everywhere.

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.

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16 thoughts on “The weight of the world on tiny shoulders”

  1. So much of this is familiar, particularly the hope that a new school will have methods and answers that make a positive difference. How much of that hope – in our case – is realistic? Only time will tell.

  2. When I was told that I needed to see the child psychiatrist to discuss my youngest son`s mental health when he was five i went to the library beforehand to read up on all the possibilities for his `slow progress` and when the appointment came i immediately asked the `man in the chair`…."well, do you think that my son is ."…and I rolled off as many names as I could remember from `the` book`. "Well, Mrs G we don`t actually differentiate between the possible causes of slow learning in children but we will be giving him a helper in class." My son is now middle aged, is completely computer literate and is loved and appreciated by all who meet him. He IS frustrated not to have a wife and family but who knows…what might happen. The MOST important thing is for us ALL to do what we can to help all folk to be as independent as possible and see the world through THEIR eyes….not to expect or feel too disappointed if that doesn`t match ours. Good luck and laughter to ALL those affected including parents…..try to look upon your young ones as REAL blessings………………`gladandwell`

  3. I'm a father of a daughter with Aspergers – and I wish I had your sense of determination, and hope. My current sense is of overwhelming despair and sadness – her anxiety high, combined with her awareness of self and realisation that this isn't going away has broken my heart.

  4. My daughter is fighting the school system at present but they wont statement my grandson to allow him to go to a special school. Every day he is kicking and screaming saying he wants to kill himself but they won't even allow him to take a small bag of his things to school to help get him there. Dont know what to do !!!

  5. With each blog you draw us closer to the experience of being Isaac and the day-to-day joys and tribulations of caring for this extraordinary person, who exists straddling the gulf between the comfortably predictable and the familiar (the fixed linearity of an underground train) and the frighteningly anarchic (any movement of a pigeon!).

    We who are close to him – and to you two – know how difficult the unpredictable is for him. You are guiding us to a better understanding of Isaac and what a joy it is to see Isaac's increasing ability to take the burden of a largely disorientating world upon his 'tiny shoulders'. So wonderful to read of an 'aura of delight' – however 'subtle' that marks just the first weeks of his new school.

    Eliza and you have made so many tough decisions, but each has turned out to be wise and always with Isaac's interests foremost. The proof is in the honesty of your blogs, shared evidence of the journey travelled thus far, and the signs of optimism that raise all of our hopes for this special boy and his equally special family. Papup xx

  6. I'm so sorry to hear of your struggles and how upset you all must be. Maybe go to the Ambitious about Autism website and link from there to Talk about Autism… They have an excellent forum where people can give great advice and maybe offer you some help. I really hope things improve for you all and your grandson gets the schooling he deserves. Matt

  7. Wow, I am in tears. My daughter also has crippling anxiety and your words reach me and find a familiar place. The school sounds an amazing place, my daughter is in mainstream school coping just about. But I wonder what a more holistic approach would mean for her. Thanks for sharing your life and touching others.

  8. Thanks so much, it does mean a lot to hear from people with shared experiences. I hope your daughter manages to cope as best she can at mainstream. And that whatever path you choose works best for you and her. Matt

  9. What an inspiring and uplifting message. 'Real blessings,' 'see the world through their eyes'… I think as parents you have done as fantastic a job as I can imagine. The very best to you and your son – may he continue to live a fulfilled and great life.
    Matt

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