Today I want to talk about Ian. Not Ian as he grew up, or Ian in therapy, or Ian in distress, or how Ian has changed over the past few years.
As he is today.
Recently, Ian celebrated his twenty-first birthday. It doesn’t seem possible! Where did all those years go? But here autism smacks you in the face and you meet, head on, the first true anomaly:
Ian has no idea how old he is.
Age means nothing to him.
We have made a point, over the years, of giving him cards which show a number – Now you’re 5! – Welcome to your Teens! – 18 years today! – all of which might have had some meaning if Ian had had any interest in looking at his birthday cards, which he didn’t. So despite our best efforts, Ian doesn’t know his age and, perhaps surprisingly, doesn’t care to.
For a while, I tried to teach him. But ‘How old are you?’ sounds – to Ian – exactly the same as ‘How are you?’, and it’s a bit odd to ask the former question and be told determinedly “I’m fine”. I tried changing the language – what is your age? – what age are you? – but he didn’t get it and wasn’t interested. It was just a number; it didn’t mean anything. So in the end I gave it up as a bad job. Did it really matter? Maybe not. As long as he could give his name, his address, and his telephone number. Those were the things that mattered more.
But all those years slid by, and now Ian is fully a man.
He’s tall, five feet ten inches when he stands up straight, which admittedly isn’t often. He’s sporting a beard for the winter to keep his chin warm. His hair still lies flat on top of his head, and he retains the ‘cow’s lick’ which appeared when he was a toddler. He still has long eyelashes and the most beautiful eyes, and pale skin, and hairy legs.
And yet, not a man. An ageless human being who straddles parallel paths of childhood and adulthood, and belongs to neither.
As beautiful and strange and funny and otherworldly as he always was.
Our angel child.
Our constant source of entertainment.
Every bath time, Ian screws his face up tight and ducks backwards under the water, almost – but not quite – completely covering his face. He loves being in water. And here’s another one of autisms strangenesses: he loves playing in water, drinking water, watching water, and has no trouble at all with the sound of the bath being filled or emptied, but water running into his drinking cup, wow! that is a problem. Then the fingers go into his ears, as if I were scraping my nails down a blackboard …
Oh yes, he has a book he loves to have nearby into which he has written many of his words. And then, when he wants something, he will point to the word and I sigh inwardly, thinking of all those hundreds of hours I spent helping him to speak – and knowing that he can speak beautifully when he wants to. And then he silently points, and expects me to read, and provide…
I don’t, of course.
I’m not that kind of mother.
“What do you want, Ian?” I ask him, determinedly not looking at the book. “Talk to me.”
And when he accepts that I’m not going to follow his pointing finger and that I won’t accept his silence, he will push himself and verbally ask.
A daily battle of wills that shouldn’t be necessary, but is.
He loves his books, but loves his iPad more. He enjoys going for walks. He likes Disney music – but heaven forbid you sing a Disney song uninvited! He still loves his Teletubbies which, I suspect, provide some sense of solidity in their unchanging facial expressions, their bright colours, and their uniformity.
He is sweet, and gentle, and lazy, and sometimes stubborn.
His latest habit is pulling threads and deconstructing things. It started with his t-shirts, then moved on to his trousers and jackets, and then spread from there. Now, it’s pillowcases. It only takes him half an hour – or less, even – to rip a pillow case to shreds. Sometimes it’s fixable; sometimes not, when he tears not just the seams but the fabric too, and a usable or wearable item lands in shreds on his bedroom floor.
I didn’t know it was possible to have more rags that I might ever need to use…
Mostly, Ian is quiet. Except at night, when he will lie in the dark and sing and talk to himself most of the night through. He often looks tired. Perhaps he got so involved following the story line in his head that he forgot to sleep. Perhaps his thoughts were so interesting that sleep seemed an unnecessary interruption. Who knows?
He is happy, mostly. In his head, with his stories and songs and patterns and thoughts.
I cut his nails, and I cut his hair, and I trim his beard, and I shave his cheeks.
I cook separate meals for him when he doesn’t eat what his brother wants, and bake bread for his morning toast.
I pack his lunch each day, and write in his notebook so his carers know what kind of mood he’s in, whether he slept at all the night before, and whether anything noteworthy happened since they saw him the previous day.
His place in the world isn’t clear yet. Maybe it never will be. For now, he’s home with us, and seems happy so. We have never needed to avail of respite care or take a break from him – who would need a break from a child so even-tempered and easily managed?
Our home is as it should be: A quiet restful place where Ian feels safe and knows his boundaries.
And so the days tick by ….
Twenty-one. Gosh. How did that happen?
11 thoughts on “Autism: Know thyself”
Thank you Fiona for writing this beautiful description of Ian. It remind me in many ways of Josie. It is always interesting to read your blog. Please keep your writing coming. It makes me laugh and cry at different times. Maria
Thank you so much, Maria. I’m almost feeling ‘written out’ about Ian, especially as so little changes these days. But I will do what I can. 😊
That’s a lovely tribute to your relationship with Ian, Fiona a relationship based on unconditional love.
Thanks, Deirdre. 😊
Thanks Janice. That pretty much sums up how it feels : bittersweet. 😉
That’s really beautifully written. A glimpse in to the life of Ian. Such a unique story for him, and such a common journey in the life of autism.
Thank you, Aoife.
I enjoyed this “little slice of a day in the life”…..it just shows me again of the universal experience of mothering, regardless of the challenges…and the commonality of us ” human beans” as we grow.
Utterly stunning….words painting a special picture of love, kindness and empathy. Nice young fella too – god, minus the beard it could be ME but 32 years ago. He is such a lucky man to have you and Neil and your devotion to him. A unique personification of real love in a world gone mad with so much hatred. Well done….stuck for words after reading that….