The crazy world of a parent of a neurodiverse child

‘The best teaching is one that reveals our hidden faults.’  Tibetan saying

Around mid-August I get itchy feet.  This is not a medical condition, but a calling, an urge.  As festival season kicks in, the call of the tent-filled vale is heard, along with the flutter of improvised flags and the smell of ‘herbal’ roll-ups.  Normally my son and I would be off like bison joining the herd, wildebeests in search of pasture, tousle-haired musos scouting out leftfield beats.

Often it’s the Green Man in Wales, sometimes a rave, last year we tried Moovin’ in Derbyshire.  This year, nothing.  The Welsh mountains are silent, the Derbyshire peaks as still as a cathedral after a service.  A festival, after all, would be ideal for spreading a pandemic.  Think of the porta-loos.

So this got me thinking, winding my mind back through all those years, all those festivals, and our parallel journey through neurodiversity.  This particular story begins with him aged four.  At the main stage at midnight, under a sky of receding rainclouds, I lifted him onto my shoulders, we fought our way to the stage, and rocked at the feet of Robert Plant as he performed half of Led Zeppelin IV.

A few days later, as school approached, or loomed, he didn’t want to go.  Not like most children, apprehensive, nervous, but emphatically, coolly, rationally.  But he did go.  Primary Schools – at least the small ones at the end of the road – are reasonably welcoming, even for the neurodiverse, and feel close enough to the safety of home.

His dyslexia was always an issue.  His school’s literacy hour obsession ensured that he would never, ever enjoy writing.  We had various meetings about support, interventions, but nothing much happened, and he survived.

The festivals came and went.  We bivvy-ed in the wilds, learning how to leave a place as you find it.  He played out every evening with his friends on the street, on his BMX and skateboard.

When secondary school reared up like an ominous rumble of storm clouds, we weathered the first few transition challenges.  But the sheer scale of the place, the noise, the timetable, the endless writing from text books, the great exam conveyer belt (taking GCSEs in year 9) left him dazed, baffled, like a leaf caught in an eddy.

The school was mildly sympathetic, but with 75% A-Cs to maintain my son was never going to be more than an irritation, like a stone in an espadrille.

The holidays were glorious.  Fresh air.  Cycle rides.  Camping.  He beat me up Winatt’s Pass, for heaven’s sake!  He occupied the local streets, learning to do an Olly, honing his particular skills.  But term time was hell.  For him, mostly.

He dropped out of school.

Somehow, as his mental health deteriorated, as our fears turned to despair, no mention was made of his amazing mental maths proficiency and all his other strengths.  School became about what he couldn’t do, what he did wrong.

The summers were still a release, but school was a big fail.  And so he felt he was the failure.  That feeling of failure sunk down into his very being, into the fibre of his cells, as though his DNA spelled FAIL.

And the thing about failure, when it seeps in that deep, is that it permeates everything, because everything is worthless.  The value, the vivacity, the beauty in everything pales, withers, dies.

Eventually I gave up work.  Something had to give.  Long hours taking a school out of special measures was doing nothing for the family.  Except pay the bills.

People ask me why I didn’t have the answers all along.  As a SEND specialist, with a Masters in Inclusion.  All those training sessions I delivered…

It could be I’m incompetent.  It felt that way at times.  No words or actions seemed to relieve the pain, no theories permeated the sheer sense of anger and ennui.

But I did develop a kind of programme in the end, which I’ll share with you:

  • If there are no words, no actions, wait.  Be patient.  They will come.
  • Stay around, stay close to the eye of the storm, show you are always there.
  • Each day is not the previous day.
  • A bowl of fruit doesn’t matter.
  • Accept that most quick solutions will fail.
  • NHS and online helplines are not always that much use.  Sorry.  In the moment, it turns out they are just as stumped.
  • But try anyway, be prepared for setbacks.
  • Don’t even think about CAMHS…
  • Keep feeling around for solutions, get to know the real person, remember their strengths and interests, see them holistically, even in the moment.  These will eventually become keys.

So, out of work, at a loose end, I figured that perhaps we needed to do something that involved making without talking.  He had enjoyed a placement at a skateboard park, taking apart and building ramps.  He loved the outdoors.  He has excellent maths and special skills.  We owned a wood-burning stove and had built logstores out of found wood and slate in the garden, much admired by the neighbours.

I made some notes, pondered, shrugged, and announced that we were going into business.

You might think that this is the movie-style turning point – a quick jump through time to the high-fives and sunny smiles. Not quite.  At first it was mostly me developing a rough business plan, cadging materials from builders, raiding skips.  I made flyers, a website and business cards.  One day I enticed him out of the bedroom with the promise of a bacon sandwich and we cycled to every stove shop in South Yorkshire with our flyers.  He wouldn’t go into any of them, but he came along.  And business came in.  At the first job, both of us were nervous, unsure.  But we smashed it! We did it together.  We worried too long about the details, we prevaricated about the price until the customer told us to put up our prices if we wanted to value our business, and paid us more than we asked!  Quick lessons.

Over time we got a production line going, the end sections cut to size, pallet bases, roof slats, tiles, all treated and packed for assembly at the venue.  We branched out into smoking shelters, bike storage.  When the University chopped down its mature trees we collected the slices, chopped them, and sold them for £100 a Padget’s bag.  My son went from begrudging, silent partner providing occasional help to project leader, correcting my carpentry skills, questioning my precious designs.  I couldn’t have been prouder.

Looking back, I realise these were golden times.  We hardly ever talked about ‘stuff’, but when he volunteered information, reflected, searched for answers, I was there, prompting gently while cutting a roof support to shape.

One day he went to the doctor’s and asked for help.

Another day, he asked us to find his some therapy.

Last year we went to a festival together.  We had a whole weekend of blue skies, and the main bar ran out of plastic cups, so we went around the campsite and collected hundreds of them and sold them back to the bar.  We made a profit.  It felt like some kind of divine rebalancing.

Last month he completed his apprenticeship as a landscape gardener.

Last week, after a long gap, we worked on a logstore together.  He has his own van, he made all the decisions, where to attach, where to cut, and I assisted in my ham-fisted way.  I could’ve cried for the sheer wonderful, delightful pleasure of it.  Perhaps I did cry.

Published on:
October 13, 2023

Get regular updates and insights from the PAGS Team.


The crazy world of a parent of a neurodiverse child

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Published on:
October 13, 2023

Get regular updates and insights from the PAGS Team.


The crazy world of a parent of a neurodiverse child

Published on:
October 13, 2023

Get regular updates and insights from the PAGS Team.