The Ethereality of Independence

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With a growing autistic child, the ins and outs of daily life do eventually settle. There aren’t any landmark breakthroughs to celebrate, and when he reaches 20 – as our Ian has – there are no great traumas either. It’s all pretty mundane. He is who he is, and that’s okay. I’ve come to accept that now. It took me years, but I’m pretty much there. I don’t like it, but it’s okay. Changes are few these days; the routine is rock-solid and we’re all doing well.

And then we meet another hurdle, our final one perhaps:

Independence.

The word twists in my head.

What do you mean, independence? Ian will never be independent! He’s a runner; he will disappear at the drop of a hat; he can never be independent…

I am reassured: Not full independence, of course not, that would never work. Independence only insofar as Ian can possibly be independent. We want to help Ian to be as independent as he can.

Hmmmm. My mind works over this one.

If a person craves independence, certainly that must be afforded, as much as is possible. If a person shows signs of wanting it, grant it where you can. But here’s the rub: the person has to want it. The impetus for independence has to come from inside.

And if it doesn’t, what then? If you are plugging away, day after day, guiding, assisting, facilitating, when there is no push from within to achieve independence, aren’t you eventually just pissing in the wind?

I have been asked more than once: ‘Does Ian brush his own teeth?’ It seems such a small matter in the greater scheme of things, but surely that’s something he ought to be able to do, isn’t it? Brush his teeth?

Well, yes, he could. He used to. I taught him well, supervised him regularly, and let the lad get on with it. But when he was six and we first arrived in Ireland, something went wrong. It became obvious that Ian had toothache. Bad toothache. He would wake up in the morning, crying with the pain of it. It was awful to see. I tried to get him a dental appointment, but there was no Health Service dentist who had a waiting list of less than three months. I even ended up speaking to the man in charge of Dental Services, begging for his help, and while he absolutely understood my plight and sympathised, even on the emergency list, Ian couldn’t be seen sooner than a month.

“But my child wakes up crying!” I said to him, almost in tears myself. “He has autism. I can’t wait a month… it just can’t ….”

He gave me the name of a private dentist who, good man that he is, saw Ian the very next day and after a brief examination, booked him into hospital to have proper treatment under general anaesthetic.

And there occurred the worst day of my life.

Not only did I witness my child being gassed prior to anaesthetic – and nothing will ever take away the sound of his voice clearly, desperately, calling to me from behind the mask – but I was utterly unprepared for the sight of him when he was wheeled back into the ward afterwards. It was like something out of a horror movie; my beautiful perfect child, with blood pouring from his mouth. Only it was real, and I was there.

Ian had to have six teeth pulled that day. Thankfully he was young and they were only his baby teeth, and they would be replaced in due course by their elder, permanent cousins. But oh-oh-oh, it was awful.

And more awful still, because Ian blamed me.

I had been there when he went under; I hadn’t stopped this horrible thing happening to him. He had called to me, and I hadn’t rescued him.

He turned away from me in the hospital bed. He wouldn’t let me touch him, my soft huggable child…..

And then and there, I vowed to brush Ian’s teeth myself. Always. He would never have to experience anything like this again.

And still I get asked: ‘Can Ian brush his own teeth?’

A step towards independence, yes, but at a cost I’m no longer prepared to pay.

So there’s the teeth issue.

‘And how independent is Ian with regard to toileting?’

Ah. Yes.

I apologise in advance, and hold onto your hats, folks, because this is going to get mucky… No, seriously, I’ll save you the worst of it. There won’t be any details; I’ll generalise as much as I can and save your sensibilities.

Ian was toilet trained – and properly so – when he was around four and a half. We considered it a tiny miracle. I had read that if he were toilet trained before the age of six, it would be unusual. Well, he was.

I had also read that if he was toilet trained too soon, this might have consequences later in life. I chose to ignore that bit.

Shouldn’t have, though. Coz that bit came true.

I don’t know when it actually started. Perhaps when Ian was about fourteen or fifteen, maybe before. He took against the toilet. Not for peeing. That was okay. But for all that other stuff. And it’s kind of slowly gone downhill since then. He’s 20 now, remember? A certain strength of character is required to daily clean the a**e of a twenty-year-old, that’s for sure, no matter how much you love him. A task shared between husband and wife, and entirely understood and hugs freely offered when a spouse returns from the bathroom with the kind of wide-eyed, blank, 1000-yard stare you might expect to find on an infantryman who’s just survived a bombardment…

When it comes to independence, with regard to Ian’s toileting habits I have realised that, God love him, there is no way on earth that Ian – no matter how cleverly taught – would be able to keep himself adequately clean on a daily basis, the way we have to, up to our elbows in sh*t…  Wet wipes, latex gloves, the works. It just wouldn’t happen. And then he would smell, and be unclean and unpleasant to be near, and require Lord knows what intervention, and it would all be undignified and more difficult, both for us and for him.

And all for what? Just a little more independence?

I taught Ian to bath himself ages ago, but what if he’s happy for me to bath him, over and over again, every single night, as the years tumble into each other? Oh, I have taught him most thoroughly, and the techniques we use are straightforward and easy to replicate, but does he actually bath himself without constant active supervision?

No.

He goes through the motions, wafting the facecloth over his face but never quite making contact, and soaping his hands and never actually cleaning anything. It’s all too haphazard.

The same with drying. He dries his hair and his ‘bits’, and then hands me the towel while he stands shivering and dripping wet, ready – in his mind – to step into his pyjamas. No, sweetie, you’re not quite done yet…

Independence for Ian is an ethereal thing, sort of ‘out there’, and not entirely solid. The truth is, he likes being looked after. He likes having things done for him. That being the case, should I stop?

The day he decides he wants to take control and he does so properly and with true intent, I’m outta there! Until then, we make a good team. And I will continue to brush his teeth just as long as the dentist – the same one that pulled Ian’s teeth so many years ago – praises me on how very clean they are. And every time I am pushed to give Ian more ‘independence’, I will smile and say ‘sure’ and make certain that we carry on just as we have been.

Because the dentist is happy with it.

We are happy with it.

And most importantly of all, Ian is happy with it.

 

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Book available at Amazon.co.uk, Amazon.com, and directly from the publishers, Emu Ink, at emuink.ie.

2 thoughts on “The Ethereality of Independence

  1. Hello, Fiona.
    Everything you write blasts through walls, leaving behind windows into entirely new aspects of what I thought was completely familiar. I read your fantastic new post yesterday morning. In the afternoon I heard the tail end of a radio interview with Caren Zucker about her new book, In A Different Key. Then tonight I saw Caren Zucker and her co-author on PBS NewsHour. But that’s not all. Sometime over the weekend I watched a documentary about autistic adults telling about the people they love. It’s exquisite.  So, I don’t know what’s happening out there in the world but apparently it’s all about Ian, Rory, Neil, you, and others. 
    Don’t stop writing. Every time I finish reading what you post online I’m immediately desperate to know more. Keep telling me, please. Keep telling all of us, please.

    Like

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