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!”

o 0 o

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

Autism: Grateful thoughts

Today I want to write a little bit about gratitude.

Not gratitude for autism.  No.  I couldn’t do that.  I think I summed up my feelings on that in my book – “… and inside lurks the secret truth that knows you’d change him in a heartbeat if you were given half a chance.”

Gratitude for a type of autism?

Yes, that I feel I can do.

It may seem a strange thing, but I can’t help thinking about how desperately hard it must be for those people who are a different kind of autistic to our Ian.  The ones who know they’re autistic, who know they’re different, and don’t want to be. The ones who just want to fit in, but can’t.

I’m thankful that our son doesn’t curl into a ball and rage against not being normal. I’m thankful that he isn’t high-functioning enough to attend mainstream school, where he might be picked on by his peers who see his differences as threatening. I’m thankful that we don’t have to sticky-tape his broken confidence together, day after day after day, as he struggles with his awareness of his condition.

Ian might have some inkling that he’s not quite cut from the same cloth as others, but does he care about that?  Not a bit!  To all outward appearances, Ian is happy being as he is.  Self-contained. Self-sufficient. Self-involved.

And for that, I am grateful – every day – that we have a child who is so mentally challenged, he doesn’t know how mentally challenged he is.

No difficult questions.

No angst.

No fighting against the condition.

No inner turmoil about something which cannot be changed.

Just a child with special needs who is who he is, but so extra special, he doesn’t know he’s special.

It’s strange what you can be grateful  for, but I’m grateful for that.

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Autism: On a lighter note …

Yesterday evening I shaved off the sides of Ian’s beard.  He’d been nagging for ‘Gillette’.

That’s the trouble, you see, when you teach an autistic child to read.

They read everything.

They notice everything.

I shave him regularly with soap, no problems; his dad shaved him once with shaving cream and he’s been nagging – admittedly intermittently – for ‘Gillette’. He read the bottle, and never forgot.

I thought he might be finding the full beard a bit warm in the humid summer weather we’ve been having, so last night I reduced it to a goatee. Easy peasy, no problems.

So far, so good.

Ian was particularly quiet today, which was a pleasure really and I didn’t think anything of it.  Oh silly me.  I went into the bathroom to find Gillette shaving cream everywhere.  And I mean everywhere – on the bath towels, on the wash basin, on the face cloth, on the hand towel, on the wall, on the floor, even a few spots on the toilet.

I started to laugh.

I just couldn’t wait to see what he’d done to himself.

I peeked in his bedroom.  There he was, lying in state in his bed, with half a moustache and a chunk missing out of his beard…

Still laughing, I called Neil and we went into Ian’s bedroom together and stood staring at Ian’s creative attempt at shaving.

“Gillette,” said Ian, with a satisfied smile on his face.

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Autism : abuse is abuse, no matter by whom

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The other evening when Ian got home from his day placement, he got out of the taxi with a frown on his face.  “Oo oo oo,” he said as he approached me, rubbing his right arm.  That’s his noise for sore. Oo oo oo.  And a frown.

I immediately checked under the sleeve of his t-shirt.  There was a redness on his upper arm, and when I ran the back of my finger down his skin, I could feel the beginnings of a lump.

This had just happened.  Not earlier in the day;  the bruise would have surfaced by the time he got home.  No. This had just happened.  In the taxi.

I gently rubbed Arnica on Ian’s arm and gave him some juice to drink.  After that, he was happy to rest up in bed and play on his iPad.  It was only later, at bathtime, that I looked at his arm again.  Sure enough, there they were, three distinct yellow bruises, one below the other.

He had either been grabbed roughly, or – more likely, given the lump under the skin which accompanied the bottom bruise – he had been knuckle-punched.  Three times.

More Arnica and a kiss to make it better, my heart squeezed at my sweet, precious, vulnerable child, and the unnecessary pain he had endured.  Time for sleep now …  and a deep sigh from me at the continuous unanswerables which get thrown up when you have a child with special needs.

The next morning, I wrote to day placement to inform them, and when the morning taxi arrived, I showed the driver Ian’s arm.  Mummy wolf was on the case.

The bruises were now ripe circles on his skin.

And we discussed the problem of having special needs with special needs together on the back seat, behind the driver’s back.

Mummy wolf growled softly, and promises were made for greater attention and a possible change in the seating arrangement.

But my blood still ran cold.

Ian doesn’t complain.  He doesn’t cry out.  He only said his “Oo oo oo” because I was there to meet him.

How open to abuse can one person be?

How can a person with special needs and a compromised sense of responsibility be made to understand that his actions are not appropriate, and that if he doesn’t like the behaviour of someone else, he cannot just lash out, when – or because – the person he’s lashing out at gives no reaction?

The middle bruise has faded quickly, but the others took their time, fading through the bruise colour-spectrum until they were finally gone.

But there is a bruise in my heart and a worry in my head.

 

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Autism: Listening to the people who matter

 

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Six weeks ago, we got an email from Ian’s principal carer notifying us that Ian had ‘soiled himself’ whilst at the centre.  It then went on to say that Ian had become violent.  Hitting out, banging his head off the wall, kicking out at staff.

… three staff [were] present due to his physicality…”

Our Ian.

The most gentle chap you could ever hope to meet.

Our Ian?

Three staff members holding him down, all because he needed to be changed…?

Our Ian?

WHAT THE HELL DID YOU DO???

 

 “We are MAPA (Management of Actual and Potential Aggression) trained …..”

 

Hmmmmmmmm…

Training is all very well, and in a generous moment I’m going to say I’m sure there’s a very real place for the ‘Management of Actual and Potential Aggression’.  Yes, I know there are parents who may not be able to adequately cope with their child’s behaviours, and yes, I know, some young people with autism can present very serious problems. I’m not stupid.  We have to accept these things. Sometimes frustration leads to violence; we all know this. Having a ritualised coping mechanism in place could certainly make staff members feel more secure in their ability to do their jobs.

BUT there are also parents out there who are well able to deal with their children.

Every single day.

Parents whose methods, bizarre or unconventional as they may seem, have stood the test of time.

Methods which work.

So why is it that when the situation demands an intervention – of ANY sort – the parents’ words are thrown to the four winds, and completely ignored?  Words of wisdom, collected over years of dealing, perhaps repeatedly, with exactly what you now face.  Words which might be gold dust, and which you are leaving scattered on the ground behind you…

Realistically, there comes a time when the training manual isn’t going to cut it.  If you are so rigidly stuck inside your box, so slavishly adhering to your instructions and methods, maybe, just  maybe, you are doing more harm than good.

I mean, when your method ignites World War III with a gentle soul like our Ian, surely you must realise that something in the system isn’t working?

In the carers’ heads, intervention might look neat and straight out of the manual, like this:- blog - conflict 5

But remember, in our heads it looks like this :-

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Upon completion of the programme, other benefits include the abilities to:

  • Establish emotional contact and bonding between staff and the service user through the use of verbal and physical interaction.
  • Allow the expression of anger, frustration, anxiety, and emotional turmoil in a safe and controlled environment.
  • Enable staff to explore issues of threat and confrontation with the service user.
  • Enable service users to recognise their feelings and to learn to express themselves in meaningful and constructive ways.
  • Help service users identify and adopt alternative coping strategies.  

(http://www.crisisprevention.com/en-ie/Specialties/MAPA-Management-of-Actual-or-Potential-Aggression)

Alternative coping strategies?  Okay, so where are you on that? What else do you have up your sleeve, once you’ve pressed all the wrong buttons and ignited a major conflict?

We know our son, and we have freely shared all of our knowledge.

We have explained, repeatedly and in some detail:

Don’t use these trigger words … 

Be firm.                      

No fuss.  No fight. No issue. No hysterics.  No violence.  No need for two other members of staff.  And best of all, no objection from Ian.

Perhaps instead of grimly holding on to your MAPA training and having to search for ‘alternate coping strategies’ when your own methods don’t work, you could START by doing what the parents told you – in the way they suggest , including body language and tone of voice – and see where things go from there … blog - curlicues

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From the Inside – Raising, teaching, loving an autistic child is available as an eBook on Amazon and in paperback directly from the publishers emuink.ie

Autism : Allowing the worst

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Ugh! Ugh! Ugh!!!

I went into Ian’s room first thing this morning and horror! He was standing in the middle of his bedroom floor with his head to one side, and his face held the most spastic expression you can imagine, and it was all twitching.  His face, his hands, his torso.  His body was practically vibrating with the speed of it all …..

Dear God, it was awful!

I took his face gently in my hands and tried to bring him back.

“Look at me,” I said to him, my heart twisting at the sight of this awfulness.

Look at me!” I had to insist.

He remembered himself and his body fell still as he gazed into my eyes.  But the damage was done.  I could not unsee what I had seen. My heart was bent out of shape, and it would take a lot more than one clear look to repair it …

When we first started Ian’s therapy programme, I don’t think it was ever our intention to cure Ian, as such, but we definitely went into it with a view to moulding his behaviour into something more socially acceptable.  Rightly or wrongly, that was our aim.  If it could be done, we would do it.  I had read that the less time Ian was allowed to behave in an autistic manner, the more it would become his habit to behave otherwise.  Perhaps if we worked hard enough, behaving in a non-autistic manner would become his life-habit.

The interesting thing was that with our Ian, the changes came about really quickly.  It was almost – when he was young – as though the autism was a thin veneer and we could penetrate it if we worked with enough determination.  And make no bones about it, we were determined.

It wasn’t that I was embarrassed by Ian’s behaviour in public.  Nothing like that.  After all, I had survived Rory;  by comparison, Ian was angelic!  It was more about wanting the best for him; wanting the most for him; and this, we felt, would be more likely without the worst of the more obvious side of autism; the hand-flapping, the face-pulling, the posturing or the high-pitched shrieking.

It worked.  In fact, it worked exceptionally well.  We could take Ian anywhere with us and he would be beautifully co-operative.  At home, he was responsive, bright, clever, learning, funny, and good company.  Don’t get me wrong, he was still profoundly autistic.  He was just more there than not, more interactive than shut off, more bright light than twenty watt bulb.

That was then.

You see, if you accept that someone is autistic, and allow them to behave as they please – because they’re autistic, aren’t they, and that’s how autistic people behave – then that’s what you’re going to get.  Despite everything.

Despite all the patience.

Despite all that dedication.

Despite all the hours and hours.

This is what has happened with our Ian.  With the expectation of good behaviour taken out of the equation, he indulges in the worst of the worst.  And today, the worst of the worst is even worse because he’s older, bigger, more determined, and much further away than he ever was.

His beautiful life-habit of connectedness and clear-eyed brightness-of-spirit and responsiveness has been swept away by people who mean well but who have entirely undone what we worked so hard to achieve.

Worst of it all, I don’t think Ian is happy.  I don’t think he’s even content.

Maybe it isn’t right to insist that someone do as you say, all day, every day. But what if that brings them to a place where they can obviously start to find joy in life? And what if taking that away from them – in the interests of giving them autonomy – actually does them more harm than good, and steals that joy away?

What I’ve learned about having an autistic child is that you can’t take anything for granted.  In the long run, your special-needs child, it seems, does not actually belong to you.  What you say, and the way you do things, are apparently not as important as someone else’s methodology. You can talk the hind legs off a donkey, explaining how things are done in your family, how to get the best out of Ian, but the past – that autistic child’s past, and with it all his learning and behaviour management – no longer belongs to him.  Now, other people know better, and no matter what you say or how often you say it, they will do things their way.

And that precious brightness will fade from his eyes, even as you watch.

And you will get notes about ‘behaviour problems’ and ‘anxiety’ and ‘misbehaviour at mealtimes’ which you’ve never encountered before, and which really, really surprise you, and you don’t say anything, because you know it’s not worth it.

You know what isn’t being done.

I’ve said it before, and I’ll say it again:

Put the child first, the diagnosis second

If you treat him like he’s autistic, that’s exactly what you’re going to get, no matter what he can do or who he used to be.

He will be autistic, because that’s all you see.

 

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“From the Inside – Raising, teaching, loving an autistic child” is available in eBook on Amazon.com, and in paperback directly from the publishers, Emuink.ie

The blog that bounced

Well, that was interesting.

Usually I try to write about the positive, the useful and the helpful, or at least something vaguely motivating. I try to keep my negative thoughts to myself, never sure if anyone really wants to read about the darkest side of having a child with special needs.

But this latest blog – self-indulgent, filled with angst and anger – has ricocheted around the world and given me my best readership figures ever.

Whaaaaat?

Do people really want raw emotion? Me at my worst?

It would seem so – although with so few comments, it’s hard to be sure.

And to my reader in Brazil who checks the blog every day to see if I have posted anything new:  Thank you. You make me feel appreciated, and motivate me to write more.

So, let’s see where this goes from here …

 

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