Sequencing the autistic child

 


Whilst I have a tendency to exaggerate, the truth of the matter is that careful planning is often the key to success.

I decide that I will be successful.

To increase my chances of success, I know that the best thing to do is to plot a time line, a feasibility study, for a trip to the supermarket. I am an American. I have a huge positive attitude. Fortune favours the brave! Then I’ll check my energy reserves to see if we have a match?

Albertson’s is our nearest grocery store. I assume that we will spend the barest minimum of time within it’s confines, 10 minutes maximum, to include paying and bagging at the check out.

I determine which six items are most essential, in case we need to bail early, as well as an escape route, that doesn’t include carrying anyone.

Ten minutes drive there, and back again, with accompanying screams. That would be half an hour tops. I flick the corner of the on-line coupon I have been saving for an emergency. It would be so wonderful to have all of my groceries delivered to my door, but so extravagant. This is not an emergency, this is ‘normal.’ Anyway, it would take me far too long to fiddle about on the computer to complete the order.

I estimate the time involved prior to that particular evolution. It may take between 10 and twenty minutes to get both of the boys dressed. Since dressing is an aversive activity for them, I should also calculate the likelihood and duration of meltdowns? So that would be another 50 minutes, as a worst case scenario.

Of course we would need to visit the bathroom before leaving the house. That may take another ten minutes per child. This must include persuasion time. Maybe we should fulfill this step prior to dressing, to avoid the inevitable naked status again? So that's another 20 minutes, assuming we are meltdown free for this activity.

What else? How many minutes will it take to prompt two small people to attach sandals to their feet? Thank goodness we're not in sock season! It's another one of those conundrums that might take ten minutes but could potentially descend into a 50 minute wrangle. I err on the side of caution but do not wish to be overly pessimistic. I plump to split the difference with 25 minutes. What else?

At some stage, eventually, we will need to enter the car. Always the most difficult step. It might also take me quite a while to find them and or catch them too.

Once in the car, and later once they are all in their seats, I will prompt and wait and prompt and wait…… until they all have their seat belts on. This is a skill they both learned some months back. I must not do it for them. They will learn to be independent if it kills me.

I look at my children playing pretend Pokemon and debate whether it is a worthwhile exercise to disturb this peaceful scene at all? Conservatively, this little trip may take all morning, or rather, two hours and five minutes. Not for the first time, I wonder if I could just wait in the car, delegate the responsibility for all these steps to someone else, someone more capable and with more patience? I quite fancy sitting in the car in the garage for 125 minutes on my own. I recheck the fridge to see if it has magically filled itself whilst I wasn't paying attention?

It hasn't. My positive attitude wavers.

I check the freezer in the hope that the two year old bag of frozen peas might have become fertile, bountiful and multiplied.

It hasn't. My positive attitude dwindles.

I decide to be brave and make a start. Reboot.

Some time later, we arrive at the supermarket. My positive attitude has a severe dent in it. I remove my earplugs and tuck them back in their little box duct taped to the dashboard. I turn around to face them and give them careful verbal instructions as to what is expected. My eyes glance over their heads to the car parked behind us. There I see three children playing cards with the windows open. No adult appears to be present. For a few ragged moments, I contemplate going into the supermarket alone. My positive attitude experiences jealously. My green tinged gaze drops down, drawn by the rhythmical kicking of two little feet, naked feet. I scrabble around the floor to hunt for sandals. Did he throw them out whilst we were driving along or did he jettison them whilst we were still in the garage? I should go back and check. I dither. It’s taken us so long to get here! Just in time I remember that we are in America. It is all too common to find signs in California that state ‘shoes and shirt required.’ The supermarket doesn’t have one. Hooray! I push the buttons to open the doors and scramble out of the car to grab as many hands as I can gather.

We negotiate the parking lot. A car pauses in the thoroughfare as we wobble on the curbside. The angel driving the car waves us across, his biceps hang from the window and I see the tattoos flex. The angel continues to wait, stroking his beard, as we cavort across the road. One child emits sparks and the other threatens jelly legs. We reach the opposite curb and I glance back at the driver as he revs his pick-up truck, to nod my thanks and bestow sainthood upon him.

We approach the entrance and the electric doors. Strangely the doors are already half open. Standing in the half open doors, is one of the checkers. He tells us that the store is closed for the day. It will re-open at 6 a.m. tomorrow morning for the inaugural official name change to “Lucky.” My positive attitude shrivels to the size of a peanut. One child drops the ground in a heap and the other dashes off at warp speed. My daughter, the whippet, races after the hare, whilst I disentangle the heap from my ankles. I refuse to calculate the number of minutes we have wasted to get to this point in the day, nor convert them into seconds.

Moral – 125 minutes on the computer is not a waste of time if you can subsequently eat. Positive lesson learned.

And the next time you see the ballistic kid and the incompetent parent, just think ‘I am lucky,’  because some of  us are, lucky, that is to say.


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Sweet dreams

I arrive just as spouse is tucking them in to bed. “Right, so no pull-up then!” he announces in a booming tone. I stop dead and pout. No pull-up? Who is he to determine withdrawal of pull-up privileges? Is he responsible for the laundry? The inevitable carpet cleaning? Now there's a man who is totally out of line. I think about pulling rank. I decide to keep my own counsel instead, and content myself with thoughts of the following morning's 'I told you so scene.'

The nerve of the man!

I kiss my children good night, hide my pout and return downstairs to smolder. What could he have been thinking, to change the rules in such are arbitrary fashion? No preamble, no warning, no carefully implemented campaign. The man must be completely barmy? I can think of no rational reason why he should have chosen tonight to turn the bed time routine upside down. I froth, stew and steam. [translation = voodoo dolls] I won't have time to do an additional load of laundry tomorrow. The knock on effects could be earth shattering! No spare bed linen. Bare bed. More upset to bed time routine. No sleep for anyone. Curse the man!

In between fumes, I consider my own plan. It's not as if we haven't attempted this 'dry at night' campaign before, it's just that it has yet to be successful. There's no reason that we shouldn't implement a new campaign, we just need careful thought beforehand. How can I have 'beforehand' if we're already after? [translation = failure at the first fence is not a good reinforcer] All campaigns must be orchestrated with the finesse of a conductor. I suppress a growl. Spouse looks across at me. He is unable to detect the steam coming out of my ears, “are you alright love?”
“Fine!”
“Anything wrong?”
“No, nothing. I'm fine, just fine!” I do my best flounce and depart. [translation = high dudgeon] I swear he the most annoying person on the planet. Who does he think he is? Why is the other adult in the household such a complete nit wit. The venom and bile accumulate, but are well leashed.

I debate whether I should lift him later before we go to bed ourselves. Should I haul 56 pounds of sleeping boy onto the toilet? I decide to delete. I stomp back into the family room, because flouncing more than once in any one day, decreased it’s impact. “You’ll be o.k. lifting him later?” I announce rhetorically. He blinks in my direction, “er, sure, if that’s what you want?”
“Me? What I want? And how exactly do my ‘wants’ suddenly come into the equation now?”
“Hmm what?”
“You asked if that is what ‘I want,’ but you weren’t concerned with my wants when you pulled the pull-ups!” I snap with the perfect enunciation of the truly incensed.
“Pulled? Pull-ups? What are you on about?”
“You told him he didn’t have to wear a pull up, without us talking about it first!” I squeak. [translation = and inadvertently spit at the same time]
“Ah! I see.”
“Well?”
“Well what?”
“What do you have to say for yourself!” [translation = Lummy! I’ve turned into my husband’s mummy]
“Well, I er, didn’t have much choice really.” I wait. I wait a bit longer. I suppress a sigh. “Why did you have no choice?”
“Well, it was him wasn’t it.”
“What was him?”
“Him,… I mean…, he said it, he asked, er, he said he didn’t want to wear a pull up any more…… now that he was a big boy, although……those weren’t the words he used………but that’s what he meant,…….I think, yes, that’s what he meant, I’m quite sure.”
“Well why didn’t you tell me that in the first place! That changes everything!”

Moral – before you flounce, feel free to ferret around for the facts first.


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Early Days 4 – Autism and data collection [translation – ammunition]

I have a tendency to exaggerate. I think it’s the Irish genes, or maybe just our version of the Irish genes. Everything is ‘the most, the best, the superlative,’ or it is ‘the pits, most dire and worst,’ with not a lot of grey in between. As a result of this trait, when we first sought out expert help, I could tell that my version of events was open to question. Because you’re involved in the situation, it is difficult to be objective, especially since quite often, you are also that catalyst that sparks the meltdown in the first place.

I would sit in the experts office, with my two angelic boys on the floor, whilst I moaned [in code] about the meltdowns. They provided me with helpful strategies, all of which I had already tried and failed at abysmally. I could tell that my status as subjective, over protective and involved mum, was part of the problem. They just didn’t really take me seriously, as evidenced and reinforced by my perfect, if disengaged children.

Any text book that you read on the subject of autism [especially ABA ones] advises that if you want to bring about ‘improvements’ then first of all you need a ‘baseline’ from which to measure change. With this in mind, I laboured long and hard to try and come up with a workable system. I went for the lowest common denominator. I would pick a random hour of the day, every day, and count the number of meltdowns that they had, as well as the intensity, duration and recovery time. One form, one pencil and a few to boxes to tick. [translation = check] How hard could it be?

Well, much harder than I thought, of course, but over the following six weeks, I accumulated ‘data.’ It may not have been ‘hard’ data and was subject to a mass of flaws, but it was good enough for my purposes. I was not exaggerating, ergo my sanity was still within my grasp.

With my slips of paper in my hot little hand, I was then able to tackle the ABA guru. His initial scepticism dispersed. He had more tactics, as I knew he would, some old ones that were worth trying again, as well as a couple of new ones that I hadn’t come across before.

The meltdown crisis phase wasn’t over, but I felt more in control knowing that ‘things could only get better,’ as well as being in possession of another couple of techniques. In times of trouble, we do tend to percolate back to this base point, when the words disappear and frustrations reach their zenith, but there are always new tactics coming along, they are always growing and I know that we’re on the up.


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ABA and aversions

A few years back junior had a strong aversion to water. This was odd for someone who also had a compulsion to be squeaky clean. I might describe it as an aversion to being wet, but that would not be accurate. If a droplet of water fell on his clothing, he would not be 'wet,' but he would be naked in a nano second. Taking your clothes off regardless of your whereabouts, might be mildly amusing if you are very small, a toddler say. It is less funny, depending upon which continent you are on, when you are bigger, in a public forum and in a cold season.

When we moved to this house, junior had yet to be born. The one thing I wanted in a home was a big kitchen. The one thing I did not want was a swimming pool. At home only millionaires and movie stars have pools. My hormone filled, pregnant brain knew that a pool was a bad idea. How would I clean it? What if it leaked? What if somebody drowned?

Two or three summers ago we discovered that the pool was 'safe' for junior. He wouldn't go near it. This was consistent with his aversion to water. By chance, midway into the season, he discovered that when the water reached 98 degrees, the pool was fun. It was not the water itself, but the temperature that he objected to. This was confirmed when September came and the temperature dipped below the critical 98 degrees. That was it, he reverted to type and nothing would persuade him to put so much as a toe in it. During this time, swimming sessions were combined with a shower to clean off on completion. Dressing thereafter was pretty optional. All my children were extremely clean for several months.
At the end of the first week of September, it occurred to me, that junior hadn't been near a shower or bath for 7 days. He would not use the shower in the house and had forgotten that once upon a time, he enjoyed baths. By the end of the second week I was getting worried. He was getting smelly. I asked spouse to help, that perhaps they could have a shower together, as slippery small people require super human strength. It was not a successful exercise for anyone. After the 'shower' he did have a few damp bits but this merely served to redistribute the dirt and add a considerable quantity of snot to his person as he howled in rage and frustration.
At that time he was only at 'school' for two and a half hours a day, which gave me lots of time to strategize. We adopted a different approach. A very, very slow approach. This might be more accurately described as 'de-sensitization.' He was still 'Thomas' obsessed at the time. We made the unprecedented step of playing with Thomas upstairs, on the landing for 20 minute periods. Gradually we edged closer to the bathroom. Once in the bathroom at the furthest distance from the bath itself, we tip toed closer. When the other's were bathing, we would play with Thomas close by on the carpet, which meant that he observed the 'fun' they were having, and was occasionally splashed. Day after day, week after week.
We played Thomas in the empty bath, touched the taps, rolled the wheels along the side. We had other preferred activities in the bath; snacks, reading and drawing with markers. It took forever. Each progressive step caused meltdowns and genuine angst for everyone. He was so filthy you could have chipped off a crust of dirt with a chisel. By Christmas, we got there, toe by toe, inch by inch.

What did I learn from this experience? That I left it too long to start. I should have recognized the problem immediately, not let things lag for a week or two hoping that it would go away. My lack of action merely made the aversion become truly entrenched. Even now I need to remind myself that even though 'water' is part of the problem, it is coupled with the 'temperature problem.' I know that they do not have a 'will of iron,' instead they have an 'aversion.'

Aversions cannot be tricked, they are real. I also know that whilst we are in steady state as far as bathing is concerned at the moment, that the whole exercise is likely to be repeated, when we next experience change, although hopefully the transition will be swifter. That's why it's really called ABA; from A to B, and then back to A again six months later, or sooner if you're very unlucky or careless like me.


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Holiday Survival

OED Online Word of the Day
survival SECOND EDITION 1989
1. a. The continuing to live after some event (spec. of the soul after death); remaining alive, living on.

I am told that goldfish, the golden orange pet kind, have short memories. One circuit of the bowl and the 'seascape' is all new again.
One thing about holidays if you have autistic children, is that it is no holiday for the parents. If the parents permit the days to become holidays, either for their own benefit or that of their children, you can pretty quickly find that they regress a few months.

It is during dinner of spaghetti, meat balls, Marina sauce with a sprinkling of Parmesan that I remember, that in theory Junior 'eats' pasta. I look at him troughing down a bowlful of Goldfish. How could I have forgotten that he mastered grains of rice and blobs of pasta some months back? How can they have already slipped out of his repetoire when they were only there a few weeks ago? Seven months to acquire two new foods and a blink of an eye to lose them again.

The following day I determine to reintroduce pasta. At lunch I present him with three pasta shapes, tiny goldfish shapes at room temperature. Spouse follows the screamer as he hurtles upstairs at full volume, “no, no, no, no new food, it is dah holidays, no new food.” I can hear spouse trying to mollify him, remind him that 'pasta' is not a new food but an old one, but he'll have none of it.
We go back to first principals. [Ref 1] Firstly, he has to look at the item of food. This means that his eyes have to be open, not screwed up. The ceiling doesn't count, nor two inches to the left of the bowl that holds the food. Once your eyes at least glance at the food, you have to describe it in detail. 'Yucky' is not sufficiently descriptive, even if you have a speech delay.

The new food, is presented five times a day, at three meal times and two snacks. It doesn't have to be eaten, it just has to stay on the plate. [translation = exposure] Hurling it, with or without the plate, across the room, doesn't count.
We move swiftly on to stage two – sniff the food. Blowing your nose in the food's general direction doesn't count.


Next we touch the food, with a less preferred [translation = less sensitive finger tip] finger. Elbows are banned as they generally have insufficient nerve endings to have any impact on the sensory system. It is o.k. to wipe the contaminated finger tip on as many paper napkins and serviettes as may prove necessary. Washing your entire body, is off limits. As a precautionary measure, clothes are compulsory.
Next we attempt licking. This is usually a louder stage of the treatment. Ear plugs may be worn. Wash cloths for the cleansing of the tongue, should have been prepared in advance. So far, so good. We move into the final phase. The new food must go into the mouth whilst an adult counts to five. [slowly] In an ideal world the 'eater' should attempt to move the food item around in the mouth, although masticating is optional. An open mouth with a protruding tongue doesn't count. On the count of five, the spit bowl is ready for expulsion.

Fortunately this 27 minute operation only need be repeated two further times. Luckily, junior prefers his food at room temperature.
Moral – use your foods or you'll lose them.
[ref 1] Just Take a Bite – apologies to Lori Emsberger Ph.D the writer


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Plan A

Sometimes people get up in the morning and find that some part of their anatomy is failing to function as it should do. Sometimes the part in question may be the legs. For some unaccountable reason they're not working. This may be due to the party in question merely having got out of the wrong side of the bed.

This can be very tiresome for the parent and quite obviously for the child also. There are number of possible techniques available to the parent to overcome this difficulty. The first technique is to retreat to the bed room, lock the door and climb back into bed. This presupposes you are able to ignore the howling that comes under the crack of the door. If this is not a viable option for the parent, however tempting, then other strategies may come into play. The dish cloth bandages may assist depending upon which child is suffering from this syndrome.

As a general rule, junior members do not respond well to nappy pins, [translation = diaper pins] so be assured that this will probably worsen an already bad position. Alternatively you can use the psychological approach 'You can decide to have a grumpy day, and be sad all day, or you can decide to have a good day and be happy all day?

Your choice.” It is generally a good idea to start off with this in any case, in the hope that the meaning of the words may percolate through, given time.

At this juncture, it is in your own best interests to acknowledge that your plans for the next hour and fifteen minutes for the child before he goes to school, must be abandoned. You are now on plan B. If for some reason you have failed to formulate a plan B, then it would be a jolly good idea to come up with one quickly, since there is a high probability that failure so to do, will have you hurtling through the alphabet faster than you are able to keep up.

Sometimes it may be difficult to discern the exact nature of the problem. The legs may be 'wonky' or perhaps 'wobbly' but since these descriptions shed no light upon the source of the issue, the parent may still be struggling to offer assistance. Plans to work on the gross motor skills must be canceled. The possibility of using fine motor skills in a seated position to obviate the need for functioning legs, is optimistic. Generally speaking wobbly legs may be an indicator that the rest of the body is likely to rebel also, if challenged.


It is tempting to abandon B and opt for plan C, where the screaming child is placed in a locked sound proof box, preferably until the screaming stage of development has passed, regardless of the number of months that this might take.

I lift the non functioning legs together with their owner to the sofa. I reach for the first one on the stack of Thomas books and begin to read.

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