Putting a Sock in it...

One of the best things I never did was go to Diana's funeral.

Quite extraordinary when you think about it. Imagine, a front row seat (kind of ) at one of the biggest events the world has ever seen..and I said no.

And people look at me with incredulity when I tell them. When I say that, instead, you and I sat at home, watching it on TV, and you took off your sock during the minute's silence and put it in your mouth. As if you knew there was no way you could keep quiet without it.

You were five then - though not five, not really. Still a baby who needed feeding, changing, pushing about in a push chair, prone to temper tantrums...and 5am waking.

I remember us in the front room of our little home, me on the floor, nose pretty much pressed to the TV, you on the couch in the sunshine surrounded by toys (you didn't move about much then - I could vac the whole house and mow the lawn and you'd still be there, an hour later, merrily beating up a playgym).

I remember sitting there and glancing at you as the Westminster Abbey choir reached its agonising, unbearable heart-rending crescendo. And you put one finger in your ear, shouted with what sounded like joy, and glugged from your juice cup. And as the world wept I knew, right then, that this would be one our most precious moments together.

A moment in time printed as if in tableau, as if painted, like a Leonardo fresco, on some deep part of the mind, but never losing colour, never losing light, no cracks appearing over long, interminable years without you.

The world fell silent and you put a sock in it. Worth all the tales I might have been able to tell about rubbing shoulders with the great and good, about being a player on this world stage... 

Why did I decline? Because I had been away from you without you for two weeks, because Diana's death meant I'd spent another weekend in the office, another weekend away from you and I needed you with me. Does that make sense?

Precious hours. 

I think I knew, you see. I think I always knew that we wouldn't have you forever. Don't tell me how I knew? I'm not even sure if I acknowledged it to myself. No doctor ever said your time on earth was limited. You were rarely ill, you were as strong as an ox..... 

But sometimes in the quiet of an early morning, I would lie in bed, waiting, listening.

 This is how it would go: first the thud as you negotiated yourself out of the bed and on to the floor, seconds of silence as you bottom-shuffled your way across the carpet and then the crash-bang-wallop as you started on your toy box. Emptying it all , picking out your favourite, and giving it hell for leather. 

This until you got bored. Then you'd fumble your way round the bedroom door, bottom shuffle along the hallway to the kitchen, dragging along your best toy to the washing machine and bang it around inside.

But sometimes, this didn't happen. You would sleep in and I would lie there thinking...not today Thomas, not today. And it never was. Until it was. 

Do you know how many times that happened? More than I can say. Do you know how many times I played over in my head while sitting at my desk, scenarios of how it might be...and what if I were far away? 

Do all parents carry such dark morbid thoughts with them or was it my subconscious preparing me for something it knew would come? 

I took so many videos of you, as other parents will do...but I took them thinking, I need to make sure I always have you....just in case. 

So when I was asked to cover the funeral, that we had tickets to get into the Abbey, I think they were surprised. I surprised myself to be honest. But I never regretted it, sacrificing the chance of pomp and circumstance, to watch you putting a sock in it..

xxx

On Public View

You were always happily oblivious to the stares of strangers. The attention you drew when we were out and about, it passed right over your head. More important things to contemplate, like where the next cafe stop was coming from.

I wasn't though, I felt their eyes on us even when our backs were turned.

I didn't mind the brief glances. Humans are designed to be nosey, born survivors because of our natural curiosity. We can't help but look at a toddler throwing a tantrum, we all turn to trace the source of a sudden, unexpected noise.

Your little quirks and eccentricities, your shoutiness, your puppet-like gait, your habit of picking things out of other people's shopping trolleys, they were my joy. They'd told me you would never walk and yet there you were, striding on thin legs through Tesco's..shouting in that language only you could understand...

But to 'the general public' you were different, a heartbreaker certainly, but not as other children - and so people would look, of course they would.

And sometimes they would catch my eye and smile, even say hello to you.

Strangers at their loveliest? The couple who came to help after you, in a temper, accidentally knocked to the floor with a sweep of your arm most of the contents of a restaurant table - plates, cutlery, sugar bowl, teacups - because your fish and chips hadn't arrived quickly enough.

They got the waitress to pick up the bits and pieces and then, when the chaos was under control, the old man took your hand as if in a handshake and said 'well well young man, what will you do for your next trick?' and his wife said how bonny you were and you looked as if butter wouldn't melt and I was so relieved and grateful.

People got to recognise you and your ways. 'Hiya Thomas' the fish and chip shop man would shout at us ever after, when we walked past.

There were many acts of kindness - but there was the other stuff too.

And I don't know which was worse; the starers for whom a look simply wasn't enough, who wanted to absorb and gawp and stare and stare and stare, only looking away when they realised they'd been rumbled?

Was it them...or was it those who opened their mouths and stuck their size 10s right in?

'We never used to see them out and about in my day'
'It must be awful for you'
And, of course, the one heard more than anything else: 'Isn't it a shame'.

The starers I would deal with differently depending on my mood. Mostly I ignored them, sometimes I deliberately about-turned and started towards them, on a collision course, just to watch them scurry away, scared of confrontation.
I'm imagining a sandwich board we could have worn that would have solved the problem: "Yes, we're interesting aren't we? Come say hello. We don't bite - mostly. *winking smiley* ".

Sometimes I would speak to them, 'can I help?', I'd say. And sometimes I would meet their eye and stare back hoping they'd got the message, hoping they'd registered every ounce of venom I was daggering their way.
And then I'd get in the car, belt you in and drive home. Hot tears and guilt. A sense that I'd somehow made it worse. They were ignorant, rude without meaning to be and yet awkward, not knowing the right thing to do. After all, how might I have once reacted?

Funnily enough I found the other ones, the ones who opened mouth without engaging brain, easier to cope with, hurtful as their comments were. These were mainly elderly folk, of the generations when the 'handicapped' were hidden away by their families or left in 'institutions'.

I would become the journalist, relentless but gentle: 'What do you mean?', 'Explain yourself?', 'Sorry?...'them'??' and then, when they were blushing and spluttering, we'd chat. I'd tell them about you, your happy life, and I think that most of the time we parted with them feeling it wasn't such a shame after all. One of them even gave you a pound to 'for your piggy bank'.

It was exhausting though, always being 'on duty' as your champion, as your defender. When all I wanted was a loaf and something for tea.

A mum* posted on Twitter today about going to the shops, taking her autistic daughter with her in a special needs buggy. 'Why do people have to stare and then look away as soon as I look at them?' she wrote on her timeline.
Why indeed.

I have a friend whose child needed 24-hour care due to her hugely complex needs. The child was a twin, her sister died in the womb. My friend absorbed all her grief, her agony, and converted it into loving her little girl, giving her the best life she could. She adored her beyond words.
What broke her? What reduced this defiant, courageous woman who never gave in, who never gave up, finally, to tears?

A middle-aged woman who glanced into the pram as she was in a  supermarket queue one day and said: 'probably best if she hadn't been born love'. The queue was long, those around heard, no-one intervened.

My friend left the trolley where it was.
People have such power to change another person's world for the better Thomas. But they can destroy it in an instant too.
If only they would think...
It doesn't take much..


*Jeannette, a Twitter friend, can be found at Twitter.com/@AutismMumma