“Can we watch dah ceptions?”
“Deceptions? What’s that about? I don’t’ think I’ve ever heard of that before?”
“Yes you know.”
“I don’t, honest. Do you mean Deceptocons, from the Transformer thingummy do dah?”
“He’s right mom. You let us watch it yesterday.”
“I did? I don’t remember.”
“Sure you do. You remember.”
“I don’t, honest.”
“It’s dah cartoon with dah yellow people.”
“Yeah. We watched it with Dad.”
“Really? Hey Mike?”
“What did you watch yesterday with the children?”
“Yes, I know, but which programme?”
“It had yellow people in it. Something from Animal Planet or National Geographic?”
“Something medical maybe…..jaundice?”
“You didn’t let them watch House did you?”
“No! Never. Ooo! I know!”
“Can we watch dah ceptions?”
It’s the usual rigmarole, or rather it isn’t – a variation on a theme. I’ve not visited the Bird shop for a couple of years, so I am quite delighted on Christmas Day. The boys went there, with their Dad. It was as much an exercise in perspective taking as gift buying, more or less one and the same, although Dad footed the bill – the value of money is still a work in progress.
It’s a whole 24 hours later and there they all are, the most extraordinary collection of peculiar shaped items – gift wrapped. I’d understand if each one was the same as it’s fellows, uniform in shape, or size, but they’re not. If I had chosen something three foot long, the shape of a lollipop, I’d remember what was inside. Nor could I forget something heavy, like an upside down umbrella. There aren’t many things that are shaped like a triangle, metallic – but that’s just me. Me? I’m an expert at recognizing objects, just by the feel, renowned for my x-ray vision. It’s a big event, a huge step forward, so I make the most of it. The genuine surprise and delight is easy – the joy of giving and receiving – but the first niggles of distress are present. My ‘what could it possibly be?’ as I squeeze the package, provokes anguish. I’ve not had the practice. A rhetorical question translates to the third degree – the stress of forgetfulness. I back off but it’s already too late – set the ball in motion. Body squirms and hair wrenching are only the beginning.
I was taught the social norms until they became effortless, the gracious words of thanks, the smile that didn’t travel to the eyes. The drill – easy. Since then I’ve learned compassion – the crow’s feet don’t lie.
Its like a blip that doesn’t fit. If you show me the toe nail of Pachyderm, I can visualize the whole elephant. If I show my boys a minute fraction of an obscure Pokemon, a barely visible fragment of the Lego logo, their response is immediate and 100% accurate – visual acuity at it’s finest, but other things are quite baffling. If its excruciating for the outsider, how much worse for the insider? But I remember how much I’ve always hated game shows and quiz nights – finger on the buzzer – hide under the table. It’s the pressure, the need to perform, but within a given time frame.
It’s a complex tangle, as with many children, where different issues compete but it’s difficult to determine which one[s] dominate. I could mention specifics but they’d be different for every child. Here, there’s the fingers that don’t function as he would wish, an irritation that escalates frustration, difficult to ignore. He knows that he should remember, but it’s just out of reach. Everyone is looking, waiting, expectant. The position of power should help – he’s above me – but that only helps with conventional people.
He’s also acquired some notions, nebulous little hazy things, on the periphery, slightly out of focus. Social conventions that have been off radar until recently, things that most of us take for granted as – so ingrained. Deconstruction and translation of the conventions – explain and demonstrate in a meaningful manner – impossible in these few minutes.
It’s what my chum calls the ‘disproportionality’ of the incident. Her ledger would illustrate the imbalance – on one side there would be ‘the subject gives a gift to his mother for the first time, voluntarily’ – on the other side of the ledger would be a very long list of ‘issues’ that might interfere or affect the experiment. She would weight or rank each issue, but no matter their number or severity, none, singularly or collectively should result in an outburst. An outburst would be deemed disproportional. It makes me a little sad that she can sum it up so dispassionately, so dismissive.
So we compromise – a little paper rip so that he can peek inside while my eyes are averted, so he can capture recall, but it’s not enough; only when he can see the whole thing does the penny drop – failure stares him in the face.
We are both exhausted by the emotional explosion. Only a few minutes, but super charged. If we were ‘out,’ the situation would be exacerbated – socially inappropriate always requires public comment – but what do they know? But we’re not ‘out,’ we’re ‘in,’ and what do I know? Probably even less. All I do know is that this simple common place event should bring pleasure. Instead he’s robbed of the moment, the joy stolen, replaced with a slew of stress. Hobbled by the miniscule hic-cups of the every day.
We should expect them, we should be able to deal with them but so often we fall short – always expect the unexpected – which is why we’re off guard on down time. It’s home, it’s safe, or it should be.
I take him and the bird feeder out into the garden – change of scene, change of pace, chance to breathe – on a chilly bright day with a clear blue sky. Barely have I shut the door when he’s off, “look mom!” He bounds across the asphalt, over 50 yards away on a quest as he hurls himself down on the concrete, bare chested. I gallop after him, “what is it dear?”
“S’on it’s back. See dah legs? Its a lady bug.”
I’m not a great fan of ‘teachable moments,’ or rather I am in theory, it’s just the practice that’s time consuming and such hard work.
I learned my lesson a very long time ago. I think it’s basically a male thing, but I could be wrong. One wrong thing you can do, especially if you happen to be female, is to bounce into the room and sing “Ta dah! What do you think?” This is a universal invitation to disappointment. The response could be any one of the following: ‘I didn’t know you could sing / are you going to finish the rest of the song now / you really shouldn’t bounce like that wearing high heels.’
To flounce out in a huff is childish. Far better to give a hint, or a clue, or better still, a plain explanation. “Hi! Do you like my new frock, the one that I’m wearing right now?” Care should also be taken in other more vague areas. Instead of asking ‘do you like my hair this way’ it’s better to ask ‘do you like my new hair cut / dye job / hair style.’ In effect, there should be as little wriggle room as possible. In fact, in some cases, it’s better to feed the line, “I’m sure you like my new shoes as much as I do.”
Some may feel that this kind of extracted and contrived compliment isn’t worth the spittle of production, and I would be inclined to agree with you. Part of the problem is that in ordinary every day life, this kind of thing crops up all the time. Far better to equip our children with a rudimentary arsenal, for protection.
That of course, takes practice.[*]
One of the many funny things about autism, if you don’t happen to be autistic yourself, is that some fundamentals remain the same. I’m not saying that they don’t grow and change, more that some major underpinnings are always present. You would think that most people with half a wit, parents such as myself, would know this. And yet over and over again, I forget. While my children have a good vocabulary, [now] there are little holes in the lexicon, bits and bobs that just aren’t important enough to file away for future reference.
“Hey guys! What do you think of my new ear-rings? See here….my ears?”
“Yes, look at my ears. See these things hanging from the little hole?”
“Dey are not rings. Dey are being fish….fish……hooks with dangly bits.”
“Do you like the dangly bits?”
“Is is an ellipse.”
“Yes I suppose they, are sort of.”
“It is browny beetle colored.”
“I thought they were honey colored?”
“No honey is being golden. Dat is not being golden.”
“Right. So do you like them then?”
“I fink it is sight pleasing but are brain hurting.”
“I fink it is bad to put sharp things in your body parts.”
“Hmm. Right. Fair enough.”
“But it’s o.k. mum!”
“Is it? Why?”
“Coz peoples are likin and dislikin different things.”
“!” There’s nothing like having your inadequate ditties quoted back at you.
“Dey are not be rings.”
“Yes you already said that…..you explained that they’re really hooks.”
“But what dear?”
“It is only being singular.”
“Dang! Where’s the other one gone then!”
[*] for future reference, for anyone that doesn’t already know, when you’re presented with the new thing for comment, the response ‘how much did it cost?’ it’s always wrong.
Children come in all shapes and sizes, as do parenting guides. One of the cardinal rules of parenting is to praise a child for a job well done. Fortunately this is a natural instinctive rule that matches the facial expression of delight and possibly a hand flourish or a hug. It all fits together perfectly, or rather it does for many parents.
Other parents need to learn to suppress the facial flicker, so that no hint of pleasure registers. Dead pan is hard to achieve and takes a great deal of practice. Sitting on hands is highly recommended to stop them from leaping out and behaving in a completely predictable yet thoroughly inappropriate manner.
Perhaps you have experienced this too with your child?
Perhaps you haven’t?
For this particular kind of a child, acknowlegement of a job well done is a trigger to destruction. Before the first word has left my lips the picture is trashed, the Lego is hurled, the Magnetix are squished.
Initially it’s counter intuitive.
There can be many reasons for such behavior and sometimes knowing why can help. For some children it’s a question of realizing that they are growing in competence, which also means less reliance on a parent. This realization is scary. Often it is more complex or more simple. If you are unable to fathom the true reasons for their abhorrence of praise then it is wise to keep our own counsel. Here, we admitted defeat a long, long time ago but to praise two children and effectively ignore another, is extremely difficult.
I appreciate that this is a bit of a niche issue.
Somehow it just doesn’t seem right to force a child, or anyone for that matter, to accept unwelcome praise but looking ahead I knew that a time would come when someone would praise him. He’d be at work, in one of those little cubbies when the boss would walk in: “great job on that report Mac!” And what would follow? A tirade? I didn’t like to imagine any further; rightly or not I decided to plow ahead anyway.
I picked my attack time with care.
The best time to attack children is when their defenses are low. Mine are usually most malleable just before sleep, at bed time. My first attempts were miserable failures and effectively destroyed the peaceful night time routine I’d been engineering since their birth. Gradually, almost imperceptibly, he allowed me to sow a few seeds of praise. Three small descriptive words about his character which were not false but not self acknowledged. That shaky start was over seven years ago. Gradually the list of words has grown, as has he. It’s quite a lengthy list now. I take care to keep it in the right order as the wrong order also provokes meltdowns. Every once in a while I make a proposal for a new candidate to be added to the list but it has to be appropriate.
Like many autistic people, their receptive language, [what they understand,] is so much greater than their expressive language, [what they’re able to spit out.] Over the summer months we had so many visitors, guests and bodies around the place that my son began to shine. The ‘meet and greet’ was less prompted and stilted. He delighted in sharing his toys, showing off and generally engaging everyone with his antics.
So I wait until darkness because eye contact is often the kiss of death to anything new.
“I was thinking…..”
“I was thinking…….”
“I was thinking maybe we could add a new word to our special time?”
“It begins with E.”
“Ah well yes you are getting big but I wouldn’t describe you as enormous just yet.”
“Hmm also true. I didn’t think of that one either but have another go.”
“How about we steer away from the physical and move into personal qualities, like kindness?”
“Kindness don’t begin wiv an E.”
“So true, so true, but I can’t think of anything beginning with E that isn’t the word I’ve already thought of without giving the game away.”
“Aquatic starts with an A, but close.”
“How about……ENTERTAINING! What do you think? You’ve been so great with all of the playdates and so friendly and helpful……all the people who have been coming and going……”
“Yeah………I love havin company over.”
“How about a C word?”
“Which C word would you like?”
And that’s the first time he’s come up with his own label – self taught, self initialized and possibly selfless.
Works for me.
The ‘e’ will only hang from the branch of the ‘W’ as the ‘i’ would fall off because seeing is believing around here.
……..well for some people at least.
I think it’s time for a good old moan; a grumble on the topic of impairment to joint attention, one of the hallmarks of autism, a pivotal skill that’s adrift, so the experts tell me. The trouble is, when it comes to parenting an autistic child we are often advised to ‘trust our instincts.’ It is my experience that this is basically wrong, or perhaps more accurately, that my instincts are wrong. Lets just look at three of the basics. They’re universal, so I’m told. The power of speech is helpful but not essential.
I am the parent. You are the child and we gave you a name. You have learned your name, so I call you, either because you’re hiding or you’re busy doing something, “Freddy, where are you?” You, Freddy, do not reply. It may be that you’re replying in your head but no words are coming out of your mouth. If you, Freddy, have no words, you could always just pop your head out of your room and wave, acknowledge that you heard me, aware that I’m searching for you – but of course you don’t. I don’t know what you do about this, but I take on both roles, my own as parent, and yours, as Freddy. I have an entire conversation with myself, speaking both roles:-
“Freddy, where are you?” “I’m here mum!” I wander round the house calling out these two lines until eventually, if I’m lucky, I’ll trip over Freddy and hopefully not hurt him in the process. It’s been like that for years.
Pointing. Yes, I know it’s rude, but everyone does it when they’re little. Parents do it too, we actually teach our little ones to point, to be rude, because we’re a bit short sighted. Teach them how to point and then scrap that, it’s rude, un-teach pointing. What a pointless exercise, unless of course they don’t point in the first place. An expert will draw a parents attention to this deficit:- “he doesn’t point, had you noticed?”
“Of course I’ve noticed, it’s just that he’s an exceptionally polite child, must come from having British parents.”
But of course it wasn’t.
Why is pointing important anyway? Because it smacks of joint attention, a shared experience; it’s absence is a red flag.
Third and last, my personal favorite:-
Hand leading. Again we don’t need words. I am not a big scary bear, I’m just a big lumpy parent, hand extended, soft and warm and inviting. It translates to ‘come with me.’ When a child makes this gesture to someone else, it has the same meaning. The underlying message is the key, again, it’s that element of joint attention, a skill that we are all supposed to have, innately, and yet it’s not there. It has to be taught. Each one of them has to be taught each skill, discretely, practiced and then generalized into all given or possible situations.
It is the absence of these three, amongst other things, that still catches me out even after all this time. I forget that they’re not there. I forget to remind them and to practice because if they’re not practiced, they’re lost. It’s not just like riding a bicycle, but much more difficult.
Too much of a tirade?
Why mention it then?
I suppose because it’s IEP time, triennial in fact. Suddenly we’re presented with another whole host of deficits, negatives, holes, and shortcomings, all in black and white, with graphs and statistics as back up.
We’re reminded because we need to stay on track, not become complacent – yes we’re parents but we’re supposed to be dragoons, always forging ahead. I become swept up with the urgency as the grains in the timer escape and drift away. Wipe out those negatives, re-train, re-teach, reinforce, so much so that I’m apt to forget the bonuses, those freebies that are of no great import, except to us. It reminds me of “John Elder Robinson,” how he learned to conform and yet lost so many of the superb abilities he had as a child, an alternative view that he’s been unable to recapture.
Yet it happened again today.
It happens most days one way or another, something that pulls me up short because I forget that they think so differently from me. Today as I reached over the sofa towards him, hand extended, called his name, beckoned with the other arm, he responded. He leapt onto the sofa and hung upside down over the back to examine my hand from underneath; an upside down aerial view. Silent. He moved each digit, an engineer checking the joints, fully functional, no creaks. He traced the lines on my palms and whorls on my fingertips, “mom?”
“I cun see yur DNA.”