Autism – back to basics

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.

First up:-

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.

Second:-

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?

Possibly.

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?”
“Yes dear?”
“I cun see yur DNA.”

One time Rule

Hosted by "Tracy" at "Mother May I," but the photo-picture below will whizz you right there with one click.

Just call me snap happy.

Yes the holiday is upon us. Mayhem ensues. Entertain, play and fun are the order of the day but pretty soon that can dissolve into chaos, at least around here in any case. I am actually writing this a week ahead of time so that I am prepared for the onslaught, especially after this evening,s excitement. Excitement comes in many forms, be that a general over stimulation or the frenzy of anticipation. Whatever it is, we experienced it tonight, a collection of whirling Dervishes.

I knew matters had reached the pinnacle when I said goodnight to them. We have a little night time ritual, different for each one. I won’t bore you with the mushy details but suffice to say that once I had finished my little luvvies and stood to leave, my son asked why we hadn’t had the long version of the luvvies? As we had just finished the long version of the luvvies, I was less than impressed. My words hadn’t registered at all. Not one of them. It brings a whole new meaning to the phrase ‘whispering sweet nothings.’

It made me think, think hard. It made me think that if I am to single handedly survive 11 glorious days with my children, 24/7, I need a little more ammunition to guarantee survival, if not sanity. Hence this is what I came up with. It’s a deal. A deal between me and them. I ask once, they respond. Yes, I can hear you cackling from all the way over there. You know I am a rule obsessed goal freak, but in this particular instance I have an ulterior motive. The motive is to remind myself to first obtain the attention of the child to whom I wish to speak, before I speak. Yes I know it’s step 101 but all too often I find that I slip up on the basics and am thoroughly surprised when I’m haring around the house nagging three smallish individuals many multitudes of times. It’s exhausting, for them and for me, as well as being completely pointless. Far better to do it once, properly, for everyone’s sake.

I’m sure that many of you have already survived the Spring Break but if you have any tips, I’m all ears. Interestingly, the circle still stinks of permanent marker four hours later after I’ve tidied up. Smell-aversion should certainly grab everyone’s attention!



So here I am with my reminder. As yet I haven’t decided whether to make it into a pendant, a mask or a head band, but I’ll keep you posted.


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Joined at the hip

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We bimble home from school with our pal, a mutual pal of both my boys. This is one of the great advantages of combined grades of some special education classes, the overlap of friendships and oodles of common ground amongst different age groups and abilities. They all grow older, better able to articulate their preferences, which run the gamut. A combination of sweet innocence and advanced sophistication.

My sons sit either side of their pal, three in a line. They both mimic their pal’s distinctive voice, intonation, emphasis and terminology, with perfection. The phrase ‘oh my god’ has recently slipped into his vocabulary, as it does with so many children. Whilst we also had this for a while too, careful actions by school and home alike, has caused extinction. I would prefer it not to return. They paw over the book and discuss favourites, their first favourite, their second favourite ad infinitum. Amused, delighted and engaged during the journey. My daughter points out the snow on the mountains. My daughter points out the child with a bunny ear head band. My daughter points out the skate boarder pulled by a dog. There is no end to the list of entertainment outside the car but the boys concentrate upon their indoor choice, as three pairs of feet kick to the same rhythm.
“Oh my god. That Coral snake bit off her finger.”
“Oh my goodness!” I squawk from the driver’s seat.
“Oh my god. That Asian cobra bit his arm.”
“Oh my goodness!” I repeat in the hope of penetration as my driving concentration dwindles. With each remark my boys howl with laughter.
“Look over there guys! D’ya see that kid has a heart balloon,” offers my daughter in a loud and enthusiastic tone.
No-one else looks. I give her a quick beam.
“Oh my god! That Fierce snake bit his finger.”
“Oh my goodness!” I need to think of another strategy. This is pointless but at least the car remains in the correct lane.
“Hey guys! Look over there! It’s an aeroplane with a message banner.” She’s relentless in her attempts to distract whilst I concentrate on the road.
“Maybe you could be a teacher or a therapist when you’re older dear?”
“No way mom! I’m gonna be a dog walker.”
“!”
“I spose we can’t make em stop kickin either,” she adds wanely.
“At least they’re all happy as clams.”
“Oh my god! That Reticulated Python bit his face.”
“Oh my goodness!”
“I can’t quite make it out…….it’s too far away…..can you drive a bit faster mom so I can try and read it?”
“Oh my god! That Massassauga snake bit his horse.”
“Oh my goodness! Too much traffic dear and I think it’s going the wrong way.”
“Oh my god! That Asian Pit viper bit her wrist.”
“Oh my goodness! You certainly know your body parts young man.”
“Hey guys. Look over there. That guy’s sellin roses. Hundred of em.”
“Oh my god. That Bushmaster bit that girl.”
“Oh my goodness! How can you tell it’s a girl?”
“Coz…………. of the sexy legs.”
My daughter and I lock eye balls before she splutters, “he sure told you!”

SOOC

Opinions differ but there is a common misconception that autistic people do not enjoy a sense of humour, or alternatively that their sense of humour is hybrid. Personally, I think it's a little more complicated than that. Slapstick is easy. Words and their nuances can be a little more tricky.

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They might not be the words I would have chosen but I certainly recognize the feeling of debilitating exhaustion, well spent.

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Happy Holidays from the Aliens

Grumpy is as grumpy does

I drink coffee through as straw as instructed by the Dental Devils and sulk. Another visit to the dentist brings more bad news. Ten months after surgery we are still struggling. I am sorely tempted to clamp a bag of espresso to my hip and drink it intravenously, just to avoid all possible current and future mouth issues. However, I don’t want to tempt fate. It seems only a tiny step until I’ll be old enough to wear a colostomy bag instead, an area of fashion as yet untouched by Calvin Klein.

The word ‘dentist’ and all derivatives have been banned from the household. I refuse to allow my children to pick up negative vibes. They will have American attitudes towards dentistry if it kills me. Spouse and I will not whisper about the subject either, because our offspring have more finely attenuated hearing that the average owl. They absorb our body language and the instinctive shivers that pass between us. Their father’s facial expression needs no interpretation. When he clamps his hands over his mouth and screws up his eyes, all three small people wince in response.

I tried so hard to be jolly with the new pharmacist but we do not appear to enjoy the same sense of humour. This is probably just as well for other patients patronizing this establishment.



I toss back another couple of antibiotics as instructed by the dentist. This is a preamble to another fishing expedition for various assorted hardware, to include but not limited to, loose screws and lumps of cement. I am sadly disappointed with the dental community, not for their lack of dentistry skills but for their complete failure to comprehend Elephant jokes. What manner of medical professional is unfamiliar with such hilarity? Are they all childless or are they just foreign?
“Don’t worry,” he soothed, as I submitted to yet another x-ray to ensure that I am totally radioactive, if not magnetic.
“So you’re just looking for just those two things then?” I ask, an unnecessarily.
“Yes.”
“Just allow ten days for the infection to calm down?”
“That’s right. Everything will be just fine.”

For two pins I would just curl up under the desk and admit defeat. Take up permanent residence. In fact I would, but they don't have an espresso machine.
“I’m sure we’ll find whatever they are, when we open you up. Very tiny.” I should probably ask an intelligent question, or maybe two? I should probably ask an intelligent medically question, but I can't think of any, apart from 'does it hurt?' but I already know the answer. I am heartily sick of being the tiniest percentage of dental patients, I want a different spot on the bell curve.
“I didn’t do anything wrong, it’s just bad luck?” I beg.
“Good luck that we found it just in time!” It doesn’t feel lucky to me.
“Right. Let’s hope you just find those two then, and not any elephants?” I offer, as a means of dispersing the tension, although it may only be my own. The radiologist and the surgeon exchange meaningful glances. The radiologist steps closer. She has more qualifications after her name than would fit on the average business class envelope. She smiles to expose her birthright, a perfect line of pearly enamel tombstones. “You know,” she says tapping the x-ray, “an elephant would show up on this.” I examine her face to locate a smirk, spot a wink or some other tiny clue that we are on the same wavelength, as I don’t want to keep making the same mistake over and over again. Blank. I give up. I go home.

What is commonly referred to as ‘dry mouth’ in the States, would more accurately be described as glue mouth. I pout at my son as he demonstrates his vastly superior lip closure, him of the speech delayed camp.
“You are dah suck again?”
“I am.”
“I am dah suck too. See?” he slurps, just to show off. “You can be do dat too?” he taunts. I temper my reply, “well no actually. As it happens I’m having a hard time getting to the bottom of the mug.” I try and remove the sneary tone from my voice.
“Ooo, you are dah dribble.” I dab my chin and demonstrate my perfect mastery of etiquette and table manners.
“Ooo, not dah mouth. Dah mouth is being clean.” I examine the napkin. It is clean, not a coffee stain of dampness. I suppress swear words and dash off to the mirror in the bathroom because my nose is still numb and lies to me frequently. Footfalls follow me at high speed. Oh for a bit of privacy! I peer into the mirror. My son inserts himself between me and the mirror, so that we can both look at my reflection, although not admiringly. Oh the joy of joint attention!
“See! You are dah snot!” I grab a handful of toilet paper and dab gently, as nerve endings are thoroughly unreliable around here.
“Don be sad.”
“I’m not sad,” I respond far to quickly and in the wrong tone.
“Soon you are not dah snot. Soon you are dah big sucker.”
Whilst it sounds like an insult, it's really a rallying cry, a supportive gesture. Yet another demonstration of the heartless, soulless autism that we know and love so well. Rats to the "Theory of Mind."

Ain’t that the truth.

Engineering perfection

Two of my four children to not like the ‘great outdoors.’ [translation = my autistic boys] In order to overcome, or at least ameliorate this obstacle, we have been working on a campaign to desensitize them. [translation = since each was able to walk]

Timing is crucial, but that aside there are many other temptations available to the wily parent. [translation = deviant] I select my lures with great care, ensure that everyone has protective clothing on, [translation = sunglasses, baseball caps, clothing to the wrist and ankle] add preferred snacks in a shady corner and I’m just about ready.


I run through my check list. What might I have either forgotten or overlooked? Nothing. Perfection has been achieved. [translation = everything is in my favour] I gather the troops and advice of forthcoming proceedings. Two faces scowl back at me. [translation = it’s still a transition and we hate transitions] My daughter skips out into the garden and calls to her brother’s with glee. [translation = an added bonus] “Hey, come and look at THIS guys! It’s awesome!” The boys step out in the garden with caution, I lag behind a second or two to grab a couple of extra, extra towels for security. I hear them through the open window.

“ooo, what is it being?”
“I fink dey are dancing!”
“Squirming more like!”
“No, no, no, dey are makin dah babies! Look dere bodies, dey are wriggling, wriggling, wriggling!”

I dash out into the garden, tripping over towels, to see all three of them in the glaring sunshine, not in the shade. Not in the carefully designed spot that I have been perseverating upon all day.

They peer into the open bag of Bonemeal, that I accidentally left out in the garden a couple of days ago during my latest planting spree. I take a step towards them, gingerly.

“ooo, looky, looky, looky! Dey are all whitey!”
“No, no, no! Dey are not white dey are creamy translucent.”
“They’re pretty slimey!” [translation = reciprocal speech is when you respond appropriately and on topic in response to what someone else has said rather than going off on a tangent of your own e.g. Pokemon are winners]

I take another step closer, jam my sunglasses onto my nose and take a deep breath. I peer, with half closed eyes at the contents of the bag. I can hardly bear to look. I know I should have put it back in the garage. I should have been more careful watering. I should have closed the bag, sealed the bag, put the bag in another plastic bag to avoid sogginess. I can feel my stomach heave.

“I’m gonna be calling mine ‘Jiggle’ and I’m gonna be writing his name wiv curly wurly ‘G’s.”
“I’m gonna…..name him…….trans, trans, trans,….George cos he’s a very curious one.”
“They’re too many to give them all names guys!”

I watch the surface of the bag ripple. What is the conversion rate of one 10 pound bag of organic Bonemeal to wildlife?

“ooo, I love dah little guys!” he guffaws with laughter and slaps his knees.
“I fink we could, we should, we might …..be putting dem in the bo, box, er……aquarium so dat dey can be our new pets!”
“That’s a great idea! Good job! I hope Rascal and Unis like em too! I hope they won’t eat em like the lizards. Perhaps we ought to put a top on this time. What do you think Mom?” she looks at me expectantly.

If they think I’m going to have a tank full of maggots on the dining room table, then think "again."

Tie yourself up in knots

We concentrate on homework, at least I concentrate on their homework, but they appear to be singularly distracted. Whislt children sit at the table not doing homework, two cats hurtle around the house chasing each other’s tails as well as their own. I drag his attention back to the number of horses in the math problem, or more particularly the number of legs that they collectively own. It is a poorly designed question leading us up blind alleys regarding animal welfare.
“Why they are gallop? Er no, er canter or maybe it is trot?” His fingers tap on the box of snack bars, a visual reminder of the reward to come.
“Why is who, er what dear?”
“Dey! Dey! Why dey are do dat?” His fingers tear at the corner of the box as this child is not averse to the texture of paper.
“Who is doing what dear?”
“Dah cats?” He continues to tap, twiddle and tear, whilst his legs swing and pump under the table.
“Oh! Why are they all crazy dashing about the place?”
“Yes, why dey are dash?”
“Spring fever I suspect.” Giggles and wriggles are contagious.
“No. Spring is on March 21. Today we are March 12.” I examine his face for a hint of humor or sarcasm. None. The fig bars fall out of the box and his hands are all over them.
“You’re right dear! But they certainly are very frisky for this time of the day.” They are all infected with fidgets.
“You’re right! Dat is because day are nocturnal.” I check again. His face is dead pan. Soon those fig bars will be crumbs.
“You’re right dear! They are generally nocturnal. Now, back to the question. How many legs to the horses have?”
“Horses, dey are not nocturnal.” His body is revving up, a pile of wriggling worms, something is on it’s way.
“You’re right dear. Now. Horses. Legs. How many?”
“My homework is finished?”
“Nope, not yet. Here, I’ll give you a clue, it’s an even number because each horse has four legs.”


“Hey! I know! Dis horse walked into a bar,” he explodes with uproarious laughter and tumbles off his chair, as do the other two. I peek under the table, lifting the cloth. Three children roll on the floor together beneath their unfinished homework. So much for neural pathways. "Autism Schmatism," I’m with Granny on this one.

Numb, from the neck up?

I park him the throne to do the business. I leave him there on the toilet unsupervised contemplating his knee caps and scabs to return to domestic chores back in the kitchen. The other two lie on the carpet surrounded by enough Pokemon to take over the world. I run my hands over my face, to check how many nerve endings I will enjoy today after jaw surgery? I appear to still be numb from below the bifocals, but my furrowed brow is fully functioning.

Some time later, amidst truck loads of laundry, I realize that I am still a child short. The ‘thought’ chimes with his appearance in the kitchen together with his excuse, “I didn’t pick it! It was an accident!” I look at him, his leg, drenched in blood and the trail of bloody footsteps in his wake. As I wipe him down I glare at his father, the idiot who chose the cream coloured carpet.

The flow of blood from the gaping hole in his knee, where the huge scab once was, is unstoppable. He didn’t cry or notice when he hurt himself in the first instance, nor does he now. It is merely a minor inconvenience in his day. The child is a walking disaster zone, immune to pain. Does he have any nerve endings at all? Rarely have I ever witnessed such a chaotic wiring system.

I hand over the responsibility of Band Aid application to his father and stomp off for carpet triage. All carpets should be sludge coloured, patterned, with texture to forestall the inevitable. I set to work, scrubbing arm all ready for a dose of tennis elbow, or maybe housemaid’s knee. I scrub rhythmically until I notice a tingling sensation in my forearm. I sit back on my heels to evaluate the damage. Difficult to tell at this stage, I will have to wait for it to dry.

“I’m going for a shower now!” I bellow to the chooser of carpets, a warning of impending thunder and a command to supervise small people; pre-empt leakage from anyone. Once the water starts to flow over me, I cheer up considerably. No-one hurt. No real harm done. Time for some mummy therapy. I grab the buff puff, for my version of ‘beauty’ maintenance. I blow out my cheeks like a puffer fish so that there is no risk of impaling myself on my braces and scrub away. I’m sure that exfoliation will reveal a youthful complexion underneath the Rhino hide. Two minutes with the tooth brush and I’m ready to emerge, cleansed, renewed and refreshed.

I bounce down the stairs pulling on a T-shirt. I bounce John Wayne style to avoid tripping over a couple of cats, determined to attach themselves to my ankles. My family are in the family room, parked in front of the telly for Saturday morning cartoons, mesmerized. I park myself in front of the screen to ask, “So what are we going to do today then?” Four people lift their hands to their faces, a rare incident of joint attention:
“What happened?”
“What you did?”
“Mooooooom!”
“Why, why, why you are er,………. what she said?”

The ‘chooser of carpets’ guides me to the loo, where there is a mirror,
“so is red still your favourite colour?
Looks like a serious case of road rash to me!”


Or maybe I’m just shamed face
with a little carpet burn.