Autism: A Thank You Note

I want to thank all of you who sent me messages of love and support after my last blog. I really appreciated each and every one of them.

However, I think it is important for me to say that the blogs I write are simply ‘a moment in time’. I didn’t even expect this one to be so dark, it just happened that way – and perhaps it was meant to.

I do need to vent.

I do need to be heard.

But I don’t want you all thinking that it is always like that, because that wouldn’t be true.

Ian is a challenge. There is no getting away from that. However, I have never felt the need to ‘take a break’ from him. Not at all. For all the strange behaviours and irritating t-shirt- and underpant-ripping habits, he’s still a good kid.

Maybe I am more resilient than some, but you know what? You’d be surprised yourself at what you could do if my life were yours.

He’s my son, and for all his strangeness, I adore him.

Tonight, when I went into his room to point him in the direction of his bath, he spontaneously gave me a great big hug. And then he giggled, which made me giggle too. And for that small, perfect moment, all was right with my world.

So thank you, again, for your continued support.

We’re ok.

❤️

Autism: The future is ok.

It’s really been a roller coaster ride.  

For a span of years, everything was so good. Ian was the perfect child – happy, communicative, involved, connected, bright, and loving. 

The trouble is, this lasted long enough for it to seem permanent, and it has been anything but. 

This morning I find myself wondering why I haven’t written a blog in a while.  Is it because everything is ok? Or is it because it isn’t, and I don’t want to write about that?

It isn’t ok, of course, because my son is profoundly autistic.  

He ‘is autistic’, or he ‘has autism’?  I’ve lost track of which is the p.c. way of saying it.  

Whichever. Whether he is it or has it, it’s profound.  

It’s not one of those ‘has issues communicating’ or ‘might struggle with his schoolwork’ or ‘may be slow to make friends’ kind of autisms.  

This kind is far, far beyond that. 

To a place where the world and my son journey alongside each other on a strange parallel path, where neither connects with, reaches, or in any way marks the other. 

And because of that, I suppose I feel affected by it all over again, when I meet it head-on, every day.

When I walk into Ian’s bedroom, and he doesn’t acknowledge me. 

Or he’s just being odd, and it’s getting so hard to bring him back from that faraway place he loves to be.

Every day is different, and each day brings its own challenges. 

When he destroys a brand new jumper.

Or yet another pair of underpants, leaving himself with a waistband and hanging tatters of fabric which don’t cover anything at all, and which would be terribly funny, if it weren’t the fourth pair that week, and all I can feel is tired.

Or when he nags endlessly for the holiday we can no longer take because the premises have been sold and aren’t available any more as holiday apartments, and I feel so sad for him that no matter what I say, I cannot make him understand that we will never go there again.

Or when he dirties himself for the third time that day, and needs to be cared for with grace and kindness, and somehow with his own dignity intact. 

Some days are tough.

And some days Ian keeps to himself, and seems happy. 

Not the happiness of the bygone days when he was brighter than usual, or answered a question straight away, or worked out a problem for himself and grinned from ear to ear when he knew he’d got it right.

Not that kind of happy.  Not any more.

Just … quietly content.

And that’s enough, right?  

Isn’t it?

Autism: An alien in the house

Oh, my heart.

Ian is further away than he ever was.  Now, it’s like sharing the house with an alien.  No, really, an alien, like in the sci-fi movies.  Weird, and strangely non-human.

I feel like I don’t know him any more.  It’s like living with a stranger.

I miss my son.

Some days it’s really hard.  Normally, a strong sense of humour is enough to carry you through.  There’s plenty of weird to find funny.

But sometimes it’s just you and the stark reality, and you look at this strange, posturing, closed-off creature, and it crashes into your head before you can stop it :  Who IS that???

And you swallow hard and go through the motions, but the complete absence of any vestige of that treasured relationship that you once had, that bites deep …

Breathe, woman.

Breathe.

You can do this.

I had asked Ian to pick up the soap.  It was bath time.  Simple thing.  Every day, the same.  Ian, pick up the soap.  And he went dark.  Lights out.  Postured.  Made his hands into claws.  Tilted his head and held it, with a weird look on his face and a far away stare in his eyes.  All angles and strangeness.

It was like he was daring me  —  to what???

I stood by the bath and watched, horrified.

Dear God, the urge to shake him out of it was so strong!  I clenched my hands by my sides and forced myself to wait it out.

I couldn’t look at him.

Breathe, girl  …  it will pass.

He was an alien from War of the Worlds.  All angles and weirdness.

And he is my son.

 

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Autism: how do you explain …

Today I came across some notes I had written a couple of years ago, when Ian was due to spend two weeks with some people who didn’t know him.  Perhaps this would be a suitable adult centre for him to attend;  perhaps not.  How could I possibly sum up our complicated young adult in a way that would make sense?

I had no choice but to limit my notes to the few things I considered most important.  It was, after all, only a two week stint.

When I read them today, I laughed.  How terse I sound!  How anxious to impress upon them the rules we had instilled so many years ago!  And how impossible it was to encapsulate all that is Ian in less than two pages!

But I felt it was worth sharing.  It entertained me;  perhaps it will entertain you.  This is what I wrote —

 

“Please speak slowly and clearly to Ian.  If you speak too quickly, he will just switch off and not listen.  There is no excuse for him not listening, so please measure how you are speaking against how he is answering you.  If he’s ignoring you, try again.

If Ian repeats ANY activity or phrase more than three times, please tell him “Thank you.  That’s enough.”  For flapping his hands, picking his nose, rubbing his face, scratching his crotch, say “Hands down.” Repeat as often as is necessary.  Please do not ignore this behaviour.

Anything can be deferred with the words “Let’s do this first;  you can do that afterwards.”

Please put a cloth over Ian’s shoulder when Ian is eating – he wipes his hands on his shoulders and makes a terrible mess.  He knows and will use a cloth.  (One will be sent in with him.)

Please work on the assumption that everything Ian says has meaning in that moment, and that he understands everything.

Please do not let Ian get away with just reaching or pointing for something he wants.  He has the words!

Ian drinks a lot of water during the day.  He also uses this as a distractor, so look out for this.  As he only goes to the toilet in the morning and at night, he cannot drink all day.  Please limit him to half a cup – or less – at a time.  He uses a straw (provided).

Ian has impeccable manners.  He will say please, thank you, and excuse me (if he burps).  Please don’t give him anything without waiting for him to ask nicely or say thank you for it.

Ian MUST be given time to answer a question.

If Ian rubs his forehead and says “Oo-oo-oo”, please say “It’s okay, mummy kissed it better”.  Weird, but it works.

Ian LOVES a calculator and will bring one with him, from home.  He knows the alphabet in numbers – i.e. A=1, B=2, C=3 etc, and will type numbers into his calculator which actually spell words.  If he types in numbers, ask him “What word is that?” and he should tell you.  He can delete it really quickly, so opportunities get missed.

Ian has a delightful sense of humour.  I hope you get to see him smile, it’s a thing of beauty.  But please don’t ask him to smile – then he pulls the most awful face!”

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Ian didn’t stay there longer than his allotted two weeks, which was sad in a way because he loved it.  There was a swing seat in the garden, and they allowed him to play on the computer as long as he wanted.  Two of Ian’s favourite things, right there!  He was popular with the staff because he was verbal – and polite – and popular with the service users because he could ‘do stuff’.  In fact, they watched Ian constantly, almost in awe.  He was like a special needs deity walking among them!  Unfortunately, it was his abilities that set him too far removed from the others, and the centre was deemed not for him.

He is happy where he is now, but he has never forgotten this other place, this little heaven with endless computer time, and a swing seat in the garden …..

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Autism: Fiddle fingers ….

This is Ian’s grey hoodie –

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However, if you look closely, you see things are not quite as they should be —

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In fact, they are entirely NOT as they should be —

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The entire top has been deconstructed, thread by thread – including the zip!

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Quietly, in his room, Ian’s fiddle fingers got busy and now I’m left with a pile of pieces I have no intention of sewing back together.  Why should I, when he will only pull it apart again?

 

Not much gets me down, but this ….

this does.

 

I feel tired, defeated.

And distinctly annoyed.

 

Autism…

 

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“From the Inside – Raising, teaching, loving an autistic child” – available as an eBook on Amazon, or in Paperback directly from the publishers, EmuInk.ie

Autism: Know thyself

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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.

Just Ian.

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.

A man.

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 challenge.

Our constant source of entertainment.

Our head-scratcher…

 

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 …

What else?

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?

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– o 0 o –

 

For those who enjoy this blog, I thank you for your support and continued readership – and for those who have been moved to comment, a double helping of thanks.  I crave what any author craves: feedback!  … and it has been a pleasure to get some.

If you would like to know more about Ian and our work together, and do not yet have a copy of the book, it is still available as an eBook on Amazon –

“From the Inside – Raising, teaching, loving an autistic child”

 – or in paperback directly from the publishers, EmuInk at emuink.ie in their non-fiction section.

Thank you.

Autism: Going back in time

numbers

As young children learn to count the small numbers – 1 to 5 – they all learn to count these numbers backwards, too.  Everybody knows, good things happen when you count down. Races begin; rockets take off; that sort of thing.  Excitement, cheering, happiness…  We’ve all been there.  We’ve all felt it.

Ian always loved the pattern of numbers.  Once he had learned one to ten, he was away.  As a highly visual child, he immediately saw that the teens would be followed by the twenties, by the thirties, and so on.  One, followed by one to nine, two, followed by one to nine, three, four, five, six, etc.  That simple.

And if he knew numbers in one direction, so he also knew them in the other.

The smallest numbers 1 – 5 became part and parcel of his day, particularly at bath time.  You want Ian to do something for a longer period? Count him through it.  Ian’s version of getting soap onto his hands is a little casual.  So, to get him to properly soap his hands, it goes like this:

“Take the soap, Ian.  Rub.  One, two, three, four, five, turn (he turns the bar over), six, seven, eight, nine, ten.”

Now, at least, you can see there’s soap on his hands.

In Ian’s mind, a quick swipe is sufficient for washing under his arms.  No it isn’t!  You are a man now, with hairy armpits and a grown man smell.  You will wash properly!  One, two, three, four, five.  And he rubs under his arms in time to my counting.

I reckon people with special needs have enough problems on their hands, without adding ‘not nice to be near’ to the list, don’t you?

So we do our best to make sure Ian always smells pleasant.  Of course, he’s autistic, and it’s an uphill battle.  It’s almost like he goes out of his way to do the opposite.  But we do our best.  Truly, we do.

 

Many years ago, I discovered that if I counted backwards, I could get Ian to do things he didn’t want to do.

Because he knew that when I got to zero, it would end.

And it didn’t matter where you started – five, or forty – because when you got to zero, it stopped.

 

How useful is this ?!

 

In truth, there is never a better use for it than when we visit the dentist.  It takes a bit of persuasion to get a dentist to count down while he’s working, but we’re lucky.  Our man is one of the best, and he bought into this because he very quickly saw that it worked.  Ian happily opens his mouth when asked (thank you, ABA discreet trials) and as he approaches Ian’s mouth with his instruments, the dentist starts counting backwards from twenty.

It’s a bit awkward at times, because if the dentist needs more time, he changes pace, draws the numbers out – which in Ian’s mind is not acceptable; it should be almost metronomic, and if I see a slightly alarmed look in Ian’s eye, I have to step in – but he does okay, and Ian cooperates.

Watching the man’s mouth as he counts.

Waiting for the zero, when the instruments are withdrawn and he can close his jaw.

I don’t know how often I’ve used counting, either forwards or backwards, to motivate Ian. Daily? Oh, more than that.  For so many years.

Little numbers, so well used.

Thank heavens for little numbers.

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“From the Inside – Raising, teaching, loving an autistic child” –  available as an eBook on Amazon or in paperback directly from the publishers, EmuInk.ie