Early Days 8 – cracking the code

That innocent word, ‘play’ can be huge hurdle for some autistic children. “Scheduling time” is a marathon and many of us, parents that is to say, have a hard time planning out what to do, how and when?

What we [parents] refer to when we say ‘play’ seems simple enough and doesn’t need any explanation, but ‘play’ when it comes to autistic children may not be quite so straightforward.

If you looked at my boys when they were little, you would have seen them playing, not just the typical autistic play of lining things up, moving toys in a mechanical and repetitive manner, examining some tiny feature on a toy but behaviour that would ‘pass’ as typical play. Teasing these elements apart, unless you are very observant or a play therapist, is not that easy for the novice. [translation = me]

The key element that experts often refer to is ‘lack or impairment of imaginative play.’ When I looked at my boys, I would see them pretending to be dinosaurs, or dinosaur eggs. To me that looked like imaginative play, there was no impairment that I could see. I knew what my eyes saw and yet I knew that I was missing something, but I didn’t know what it was?

A typical exchange at that time would be when I watched my son be an Allosaurus. I wasn’t allowed to join in, though I often tried. [translation = on each occasion that he pretended to be whichever dinosaur was in favour that day] He didn’t mind me watching by then. [translation = first he was unaware that I was watching, then when he did become aware that I was watching, he objected violently] This was something that he played alone. Since dinosaurs were his area of enthusiasm, this was my cue to engage with him. [translation = joint attention]

I had learned to be upbeat and use simple language. His mimicry was superb, his body and gestures matched those in the many, many books we had about dinosaurs. I knew that to praise him, would guarantee a level 10 meltdown. It also took me a long time to correct myself. [translation = not to ask a question that elicits a response, which would seem the most obvious step when you’re dealing with a speech delay, but instead, to make a statement which removes the pressure and stress of having to find a response]

At that time we were still trying to fathom out his rule matrix. [translation = the many triggers to meltdowns] One trigger was buried in this daily ‘pretend’ play, but I didn’t know what it was. The experts always ask you, ‘and what exactly preceded the outburst’? I knew that I was doing something wrong and provoking his meltdown. I changed ‘my script,’ my ‘approach,’ and everything else I could think of, to try and make it work, but the outcome was always the same. It remained the same until he was able to use enough words for me to be able to translate and interpret their meaning.

I watch. I have a pad of paper and pencil behind me listing in detail each exchange we have attempted over the last 27 days all of which have been unmitigated failures, each of which I’ve crossed off, eliminated. I am going to play dinosaurs with my son if it kills me. [translation = or the T-rex bites my head off first]

“You are a Lambiosaurus!” He rears up a little in response, bears his teeth a little more and claws the air in slow motion. I watch carefully, willing myself to see the trigger. Nothing. So far so good. He jumps onto the sofa a morphs into a different dinosaur. Which one? I watch. I watch until I am sure.
“You are a fantastic Stegosaurus!” He snaps a glare at me! I used a ‘praising adjective’ by accident! It just slipped out! I hold my breath waiting for the explosion. Nothing. I got away with it, but he did notice the word. Maybe I’ve made a mistake? Maybe all this time I’ve been assuming that he didn’t like praise but actually it’s something else that’s setting him off? What could it be?

He lumbers off the couch onto the floor and morphs into a, into a ? yes, into ….. “You’re pretending to be a fabulous Parasaurolophus!” I blurt with unsuppressed excitement. He arches back raging at the ceiling, screaming his lungs empty, not as any dinosaur but as a misunderstood child. He rolls on the floor crying and beating the carpet. What? What? What? Please help me understand.

I can’t believe that I’ve blown it again. I rub his back as he curls into a small hard ball, blocking me out. I wipe away the tears coursing down his cheek his body wrapped up like an egg. Why is there no manual? No book? No ‘how to?’ Can you plead with a four year old?

All I can say is ‘sorry’ quietly, again and again as I stroke his silky hair. He calms, slowly and lifts his head, “I not pretend,” he says crisply. These are probably the only three words he will utter during the next 24 hour period. 3 words. His eyes stare into mind. Eyes may be windows but I still can’t see. He says it again with emphasis on ‘pretend.’ 6 words in 24 hours! Does this mean they’ll be no words tomorrow, that he’s used up two days supply of words? I cringe at the thought of the future silence, wasted on a repetition because I am too stupid to understand him the first time. I stare at the surface of his glistening eyes willing myself to see.
“You’re not pretending you ARE a dinosaur!” I gasp. He dives at me, medicine ball head to sternum shouting “YES!”
We rock. 7 whole words! We rock back and forth clutching each other with all the force that can be mastered by a four year old.

He bursts away from me, “I am egg! You sit on me!” I am in a state of shock, too dumb to quibble, I simply obey. I sit on my son who is curled up like an egg. [translation = proprioceptive input on the sly] The egg starts to crack as I move off, to find that a baby Corythosaurus has hatched, tweets mewling noises and preens his crest for my wonderment. He had invented a game for us to play together, our first real pretend play. He has used 14 words in one day. We played it every day. I try hard to forget to count words. It was my all time favourite game ever.

Lastly, a lesson in imaginative play, brought to you by the ‘guy’ I love to hate, Spongebob et al in ‘The Idiot Box.’ [translation = television]

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Not just any child – play is children’s work

Maybe you are new to the concept of autism? We’re pretty new too. A couple of decades ago, my knowledge was limited to the film “Rainman,” which I enjoyed at the time as a piece of light entertainment on a Thursday evening. I had the odd deep thought at the time, mainly limited to the exploitation of people less fortunate than myself, but that was about it. It wasn’t that I had any more or less prejudice than the rest of the audience, it was merely that it was a subject off my radar as it had no direct impact on my life.

Things are different now. Two average girls and two autistic boys and a weekend. We are a couple of old crocks incapable of taking care of ourselves, let alone three active small children in need of entertainment, supervision and guidance. It is a helpful reminder that old people like us shouldn't breed, at least not unless each child comes with an emergency battery pack for the parent.

Perhaps you still have your inner child? I'm hunting mine down as we speak, but it's hard work. When I was a child, I just played, nobody taught me how to do it; I was a child therefore I played, that was the reason I was there, to play and grow up, not much else.

If you take the play part away from the equation, you are left with just the growing up bit. Whilst they do grow and get bigger they are merely getting larger not expanding their skill set and not getting any closer to being in the category of 'normal' or what might pass for 'normal' if you're not looking too closely. Afterall my expectations are realistic, we're aiming at blending in, that's all with a hefty dollop or two more of the happy quotient.

However, you can't blend in, if you can't play and have no sense or humour, or alternatively, a sense of humour that is unique and not enjoyed by anyone else. Your own jokes may make you happy, but if they don't match with anyone else on the planet, then there is not going to enjoy a resounding echo of laughter, and we'd like that reciprocation part of the puzzle, if we have the choice.

So lets take an everyday holiday kind of an example, a Labour Day kind of example. We will go out and play, not labour. A picnic in the wilds should be a doddle. [translation = easy] It would be easier on the beach, or by a river, any kind of water, but we're taking a more challenging example here.

So you arrive in the great out of doors. [translation = we skip over the hideous “transition” in the car] The boot of the car [translation = trunk] is over flowing with entertain as well as a whole slew of oddities to accommodation several small people’s special needs. The nail clippers are no dead weight, as long as I don’t forget to pack them, but the assorted tasilmen and plethora of clothing gives the appearance of a camping expedition.

What are you going to do? Well I'm going to sit back and read my book, whilst my children play before they come gamboling back for a picnic lunch. Or at least this would be my plan in my own personal ideal world. That’s what my mum did, that’s what all mums did in those days. Their job was to provide the treat, the opportunity to drive out into the countryside on a jaunt. Our job was to play. Unfortunately I am in a different world, a predominantly autistic one, so reading, either for myself or for them, isn't an option.

So what can we do? Well we could play tag. We could, but no-one wants to.
'Why?” is the universal response. The answer, because it is 'fun' doesn't translate either. O.k. so we dig for the inner child, put on our best happy face and start to play tag, but nobody runs anywhere, which makes it too easy to catch everybody, which doesn't model the reinforcing positive outcome of 'fun.'

Never mind, how about we climb a tree instead, sort of naughty but nice, and to hell with the environment. Again we reach the question 'why?” Indeed, why would one climb a tree? Because it's 'fun,' has the same doomed conclusion as before. We model tree climbing but no-one even observes our efforts. Making monkey noises from half way up the tree, merely draws the attention of strangers, who wonder why we are damaging a perfectly harmless tree and neglecting our children. Never mind, more fun to be had.

How about we roll down the hill and see who gets there first? “Why?” I'm so glad you asked me that, because it is 'fun.' We don't even have to race and avoid that whole nightmare of winning and losing, we’ll just do it for the proprioceptive input, go mad, why not? Apart from the obvious problem of having your body in close and personal contact with something as scratchy as the grass, there is a definite lack of enthusiasm from all quarters, apart from the adult population.

Never mind, there's a nice breeze, howabout we fly that kite, one of spouse's favourite occupations. “Why?” well yes we've done that bit and we've come to expect failure but we carry on regardless, even though jaws are beginning to ache from all the effort of this 'having fun' malarkey. Nevermind! Lets take the sedate option, afterall I'm beginning to flag a bit.

Lets throw caution to the wind, ignore Mother Nature and make daisy chains, no you don't have to make them yourself with your fine motor challenges, instead you can just pick the daisies and bring them to me. No? O.k. you can just sit and watch, whilst I make one before your eyes, it’s almost like magic. Yes I know that they're not daisies, I know that they’re California poppies, which is a bonus because orange is your favourite colour. Yes I already know that despite the speech delay you are able to pronounce 'protected species' but you're banned from saying it. You're bored to tears? This isn't doing it for you?

O.k. tell you what howabout we take reeds and blow through them to make whistling noises? No? O.k how about farting noises, you can make some great farting noises. All children think that farting noises are hilarious. Not you? Why? No? O.k. what else can we do?

Lets hunt for ants in the grass. Not ants? O.k howabout we look for any small insect life, any kind? How about you pretend to be interested just to make me happy? Sorry that one just slipped out. So, where are we?

Lets lie back, kick off our shoes, watch the clouds and see if there are any pictures in them? Of course, yes I was forgetting that you need your shoes to stay on. Can't see anything in the clouds? What about the train? Not into trains any more, sorry I was forgetting.

It begins to get to you after a while, you begin to doubt your sanity. Why do we do these particularly pointless things? Where exactly is the pleasure in doing them?

A huge chunk of them, is the enjoyment of sharing with someone else, the joint attention, not the actual activity itself, and that is why it is so futile and painful.

What about some of those mind boggling boring finger games, like round and round the garden, that you grew out of, at four perhaps five. Then you'd find that you'd go round to visit your grandparents, when you were much older and sophisticated. Your grandparents start to play finger games with you. You knew you were too old for such childish things, but you'd play along, just to see your grandparents smile and be happy, because you loved them, even if they were completely out touch with the reality of a nine year old. You'd be magnanimous, enjoy the physical contact, pretend to be a kid for a while.

It reminds me of a particularly shameful moment of my life when I was forced against my will and despite my better judgment, to buy a book which would tell me how to amuse children in small confined spaces, which at that time seemed to be largely waiting rooms. I was confident that if I could learn a hundred more games that I would be able to entertain them during the seemingly endless age, between first doubt and a diagnoses. Thereafter I would have no need to entertain copious numbers of children in small places. As it turned out, the book was a complete rip off, as I had already suspected. I already knew the majority of the 'games.' It was all a big con designed to pray on the vulnerable, the incompetent parent, oh shame on the publishing industry!

The real trouble was that I had bought the wrong book or the wrong category of book. I didn't need a book about what to play, what I needed, was a book to give me a key to access my children, something to help me break through. I could have all the games in the world but if I couldn't connect, they were useless. I needed a connection book. I didn't find a connection book until much later, but I acquired the principal tools needed, only one of which was perseverance.

I look across at spouse who has flagged, or more accurately, given up. He flies his kite, on his own personal hillock, alone. The Batman kites flutters way up high in the sky on a long, long, long piece of tatty string. Pity I didn’t pack the scissors? There again, there’s always those nail clippers!

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