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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Autism: Coming to terms with the changes

A couple of years ago, I had an adjustment to make.  My son was no longer in school, he had moved into Adult Services. The time for learning, it seemed, was past.

I didn’t take it well.  The frustration seethed inside me, and in true INFJ fashion, I vented in written form.  I post this today just to show that being the parent of a child with special needs is hard in ways you cannot anticipate.

I have moved on now.  I have accepted.  But back then, acceptance was the last thing on my mind ….

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It’s MY problem. Not theirs. Not even Ian’s. Mine.

I just feel they are selling him short. Dumbing him down. Doing him and his extraordinary abilities a disservice.

I can’t read these notes any more. They make me too angry. Really hit-someone angry. I can’t take it. I have to raise my hands and surrender to them. Completely. It’s their show now.

I had my turn.

Just let them not forget that everything he knows, everything he can do, is because of me.

Me.

Not them, and their quaint little ways. Not them, with their puzzles and ‘table time’ and ‘helping Ian get over’ an anxiety he never had.

Me.

And now I have to swallow it, all this anger and hurt. I feel let down in ways I didn’t even know existed. I feel belittled by it. Made worthless. All that work, all those years of dedication and persistence, worth nothing in the eyes of these people.  They take Ian back and back yet further, and I remember…

I remember the joy I felt when I taught Ian that, all those years ago. When it was new to him, and his eyes shone with understanding, and his mouth curved when I praised him. And we mastered it together and moved on, and he was happy, and I was happy, and the joy we shared was our private wonderland.

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Am I so utterly wrong in all this? Should I really just be able to step back and say ‘It doesn’t matter any more’?

I poured my heart into teaching my son. Everything I had. It took over my life, and perhaps for the first time ever, I felt as though I had a purpose.

Now, who am I?

What am I?

I feel utterly betrayed.

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Sometimes, lessons are hard but the pain teaches us, if we let it.

Now, I am just the mother of an autistic man who – if he’s properly reminded – can still do amazing things.

Our journey continues…

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