The lowest common denominator [translation = use it or lose it]

[from a couple of weeks back]
Whilst I am allergic to exercise in any shape, form or description, if forced, I would come down on the side of the sprinter. Short bursts of energy and enthusiasm. If such a strategy doesn't work, then give up. This is not a good parenting style for the autistic child, where consistency and persistence are required over long periods of time.

I emerge from my steaming pit [translation = bed] after surgery. I adopt a vertical position and stumble downstairs. I find my three youngest children draped across various pieces of furniture clutching electronic devices, semi naked. I attempt a verbal greeting but it's not loud enough and has no impact. As they are content, I make do with bodily contact, a hug that is shrugged off as interference, a stroke of the hair which is flicked off like a wasp and a caress for the one with no nerve endings.

The home help has been hard at work. Almaz has ensured that the house is clean and tidy. Three lunch packs are stacked neatly on the counter. She is a gem, tireless, dedicated and hard working. She dresses them, cleans their teeth, picks up after them, feeds them with a spoon. They have no responsibilities, no chores and no input into their own lives. She is their slave – they adore her.

I consider the time of day. I suspect that my inert children have been engaged in this activity for hours. [translation = plural] I recall that it has also been peaceful enough for me to sleep, which confirms my worst fears.


The Gameboy, Gamecube and telly, are used specifically to elicit compliance. They are motivators, powerful ones. Over a long period of time, you can use these 'bribes' to achieve extraordinary things, such as toilet training, eating, or trying to eat a new food, wearing clothes, or maybe keeping your clothes on. As long as you pick something specific [we'll do this homework sheet /homework question together and then….] the results can be miraculous. As with most matters, it is not a quick fix. You have to start with a small, discrete task that is within their capabilities, with the rigid application of the rules that you have determined to be equitable in advance. If you bend the rules once, the whole matter quickly unravels and you're back to square one.

It is therefore with some alarm, that I realize that two and a half years worth [?] of painstaking progress has dissolved into a cats cradle. I would like to describe these tasks as 'my winnings,' but to be more accurate, they are 'triumphs of achievement, the culmination of the acquisition of specific skills, and a demonstration of the remarkable accomplishments' of my children. Or they were.
I can feel my fat lip quiver and my piggy eyes sunk in my swollen face, begin to leak at the thought of square one. I do not like square one, the square of several years ago, I much prefer square 7, where we were three weeks ago, prior to surgery.
I remind myself to 'pull myself together' for fear of betraying myself to my children.

Then I remember that I am invisible again, out on the periphery, that I have inadvertently renewed my membership to the irrelevant, relegated and forgotten. A selfish viewpoint. My children are tuned out, turned off and internalized. An even more selfish viewpoint.

I must quickly transform myself from invalid, to taskmaster. I have no option but to take up the reigns and become 'the enemy' again. It is not a role that I relish. I would much prefer to lounge around and just let them be. I would be happy to let them exist in their electronic wordless world. A life free from school, therapy, people and verbal communication. A world with French toilets, the 'hole in the floor' kind. A monastic silent nudist colony, in an video arcade, where junk food snacks are freely available for refueling purposes only.


The strains of Frankie Laine’s ‘Rawhide’ whisper through my brain ad I start hunting for my dusty whip, ready to renew the marathon.


Bookmark and Share

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


Bookmark and Share

Fixations

No-one is immune. Or more especially, people who believe that they are normal, may find that they drift up a blind alley unwittingly. Not me of course. I don’t hold with such wayward manners. British people don’t because of the ‘will of iron.’

Thus today, I was busy making cakes, corraling children with a bit of tidying thrown in before senior daughter returns, when I came across an old gift I was given. It is a little tube holding a very thin roll-on of essential oils. The label reads 'anti-stress.' The fine print, even with dodgy bifocals, tells me that it contains ‘lavandin.’ I wonder if that's a misprint? ‘Sweet orange, red tangerine and ylang-ylang’ essentials oils, whatever they might be when they’re at home? I roll it up and down the inside of my forearms and sniff it. Quite pleasant! I wait for my stress to dissipate. I take in a deep breath. Demands for ‘goldfish / find lost lego piece /when will my birthday cake be finished?’ also waft over me.

The smell is changing because of the warmth of my skin. I'm hot, I'm stressed, I'm pooped. It isn't even eight o'clock in the morning and I'm already exhausted. The 40 minute marathon to get them up and running, has been abandoned during the holidays, but we try to stay vaguely on track. We pretend that there is still a routine but no-one believes me. I'm like a wrung out dish towel. I'm ready to go back to bed. Perish the thought!

Because spouse was here this morning too, we divided our time between the children.. I spent half of those 40 minutes with senior son and his socks. He put each sock on and off 21 times. Each time he put one on I congratulated him, my performance was a tour de force. Each time I praised him he immediately ripped one off and threw it across the room. I would say 'oh well, try, try, try again,” with my best sunny face expression glued to the front of my head.

Some autistic children are not motivated to act for praise or to please someone else. The 'theory of mind,' or the ability to step into someone else's shoes just doesn't feature for many. This is a change of catastrophic impact on his young life.
He wants to fit in but it's tough. I remain calm. I make sure that my body is positioned in an open stance, close enough but not too close. I keep my hands soft and my face soft, so he can see that I am not affected by his behaviour. I'm here to support him, but I am not going to physically help him. “Too bad,” I say in sympathy with his frustration. I think I sound convincing. I hope I sound convincing. Then the upbeat 'You can do it, I know you can.” I flip flop between cheerleader and sympathy mode. I need a coach, so that I can be his coach.

Each minute passes slowly. I think Zen thoughts. I sniff. The sock pings past my nose again. I feign disappointment, I sympathise, and encourage. Each minute idles by. I'm ignoring everyone else leaving spouse to cope. One on one time, they tell me. Quality not quantity.

I let my shoulders sink and my brow unfurrow. I sniff orangey smells that waft around us.
“Why for you are sniff?”
“Pardon?”
“You are dah sniff!”
“I am?”
“Yes, you are needing dah tissue?”
“No thanks, I’m just smelling my arms. Here have a nif, they smell of oranges.”
“But I am hating oranges!”
“I know but these are nice ones, you’ll like it, really!” He sniffs, doubtfully. He sinks back into a seated position. Our eyes make true contact. He leans forward and sniffs again only to sink back. He sighs without words, picks up a sock, then the other. Finished! A pair!
“Well done!”[translation = great job] I hug him, deep proprioceptive input. His fingers gouge into my shoulder blades. I hear him sniff.

For another adult perspective on OCD and medications that might help, please visit my pal “Lotta” at “Mom O Matic” for a breathtakingly frank opinion.


Bookmark and Share

Transitions

It's an innocuous enough word. There again, it is a ubiquitous word here in America. In every other country, 'transition' merely means change, they're pretty much interchangeable. Out here, 'transition,' is used most commonly with reference to children, as in 'he doesn't transition well.' [translation = he has a meltdown] And yes, it's nearly always 'he.' More simply, it means he finds it difficult to stop doing that, and start doing this.

I came face to face with this word several years ago. I was trying to leave the YMCA with my three littlest ones. Junior was strapped to my chest, his fingers entwined in my hair and screaming. The other two were in the double stroller. They were also both screaming. The front one held the wheels, the second one gripped the door jam preventing our departure. A kindly woman remarked “my! they sure do have a little trouble transitioning!” She might as well have been speaking Swahili to me for all I understood.

Many children, and some adults I can think of, have trouble transitioning. However, if you are autistic, transitions always result in a meltdown. You may not think that is so very treadful, until you examine how many transitions there are in the average day.

Lets take the first five minutes of your typical day; you wake up, you fall or bounce out of bed, visit the bathroom, clean your teeth, stagger down stairs, put the coffee on and reach for the newspaper. Sounds about right? Approximately? Give or take? Right. Each one of those is a transition. 7 transitions, seven changes, seven meltdowns, and that's just the first five minutes.

So lets just imagine that we can fast forward and skip the first 7 meltdowns of the day. Pick another time of the day. Pick another time of the day when you were a child. Remember being a child? So the end of the school day approaches. Horray! Gather books and belonging, leave class room, find parent, get in car and drive home, into the garage, skip into the house for snack and T.V., oh no, perhaps not T.V., more likely homework. Were you counting? Right, 8 transitions, 8 meltdowns. Beginning to make some sense?

This is why autistic parents and their children are so inefficient. This is why every tiny thing takes 8 times longer than it would for a 'typical' [translation = normal] person.

Still dubious? One more example then. Say you've decided that since it's the weekend, it might be an idea to take a little trip. Scratch that, the schedule is still pretty full with three small children at home, how about, instead, we go for just a couple of hours to the park? Deal? Great. Use the toilet, wash hands, gather bikes or sand toys, put on your shoes and socks, or other footwear, leap into the car and you're off. Only five transitions, only five meltdowns, although of course two of them are autistic, not just one, so that's two times 5, which would be ten meltdowns. You think I'm exaggerating? Lets tear it apart a bit.

Firstly, no-one wants to go to the park, going to the park is not fun. Going to the park means being 'outside' and 'outside' is always bad. In addition, even if the 'park' were an 'indoor' or covered park, it would still count as outside, because it's not home. Everything that isn't home, school or therapy, is 'outside.' Perhaps you could pick one of those real indoor places, like bowling, jungle gyms or other children's entertainment places. For now we will ignore the fundamental difference, that the park is free and all these other places involve hard cash times 3. You'd still have the same fundamental problem; it is unknown, it is not preferred, it is not home and involves a transition.

So far so good. Next. Use the toilet before departure. No-one wants to, they need to stop what they're doing, even if it's something that they're not actively enjoying, like homework, and do something else, namely go to the toilet, which means that it is a transition. We hate transitions, no-one is going to use the toilet willingly. Added to this, everyone has to remove every item of clothing in order to use the bathroom. The two activities are connected; toilet = naked. It's unfortunate that these two are connected, they shouldn't be, that's my fault for being a lax mother, but that aside, for the moment, the reality is, that they are connected.

Once everyone is naked, they need to get dressed again in order to go out to the park. Getting dressed is a transition, no-one wants to get dressed, even if they didn't have poor fine motor skills which makes buttons, Velcro and zips a form of torture.

This skips over the issue of sequencing; knowing that you need to put your clothes on in a certain order, unless you want to end up looking like superman with your underwear on the outside. It also ignores the problem that scattered clothes, even once they are gathered together, in fact probably because they are gathered together, become an amorphous heap, unrecognizable as clothing. Now they are a lump and possibly a tangle. The tangle of a puzzle that cannot be unraveled by those who only see 'parts' and do not recognize 'wholes.'

We skipped 'washing hands,' I only wish we could. No-one wants to wash. If they have to wash, one needs cold water, the other doesn't care about the temperature or being wet. One will have an apopleptic fit if so much as a drop of water touches any part of his anatomy or clothes, other than his hands. The other could be drenched, would prefer to be drenched, but that would mean another session of dressing.

It probably will involve another session of dressing anyway, because the other one experienced a droplet of water on his knee, during the washing hands session and will therefore be naked again. You need to bear in mind, that whilst it make take them 45 minutes to dress themselves, they can be naked in less than one second, some kind of inverse relationship there.

Ignoring the issue of dressing and washing, we move swiftly on to choosing items to accompany us to the park. Bikes or sand toys? Neither actually, because no-one wants to go to the park, so why should anyone choose something to take with them? This is apart from the fact that choosing, the act of making a positive decision about anything, is also impossible. Not only is it impossible, it is also aversive. Aversive means a guaranteed meltdown, times 2.

Where are we now? Oh yes, shoes and socks or other footwear. Lets ignore the issue of choosing the footwear, you the parent, intervene and choose the lesser of two evils, namely sandals. Sandals are great because this obviates the need to put socks on, that makes the exercise speedier, that's four socks that don't have to be put on four feet, in addition to the shoes. Half the time. There again, all footwear is aversive, contemptible. Not only does no-one want to put shoes on, they also don't want to put them on because it is a precursor to being able to leave for the park, which they also don't want to do. So there is no motivation to put hateful shoes on delicate feet.

This issue can be overcome by a bribe. The only kind of bribe that will work in this situation is candy [translation = sweeties] This is the lowest common denominator, a quick fix. You think I should use some other kind of motivator, I can see that. How about they put them on to please me, to make me proud of them? Nope. They don't care what I think or feel and they certainly don't want to please me. Perhaps I could appeal to another element of their nature, something along the lines of “Wow, let me see what big [independent] boys you can be, show me you can do it, I'm going to be so proud of you if you can do this?” Sound good? Sounds like a step in the right direction? Sounds like it should be, but of course it isn't. They don't want to be grown up, they're quite happy as they are thank you very much. They don't want to make me proud, they don't want to demonstrate skills of independence. They don't want to go to the park.

Any other ideas? The sooner you get your shoes on, the sooner we can go to the park? Obviously wrong for the reasons above. The most natural encouragements are actually the worst choices for these boys, it's all counter intuitive, you need to think backwards, you need to think inside out.

O.k.. Last step. Get into the car. The last step is actually the hardest step. You may be familiar with the nightmare of abductions, where the kidnapper grabs the victim from the street and tries to stuff them in the car. The victim knows that they must resist, they must avoid, at all costs being taken to the next destination, the second location. This is the final crunch they must resist, failure now, will mean certain death. It's the same here, resist getting in the car, because if you don't succeed now, you will be transported to the park against your will.

You doubt my veracity? You think I'm exaggerating? 'But it's only a quick trip to the park!' you sigh. 'How can that be such a drama?' you ask. I know, it's sound unlikely, I find it surreal as well, but the bottom line is, it's not the park, although that doesn't help, it's the 'getting in the car.' Getting in the car is the biggest baddest transition, always.

Is there something sub-standard about my car? Do they get car sick? What is the problem with the car? I don't have a notion what is wrong with my brand new car, nor it's predecessor, nor it's predecessor. It's not the car itself. It's not the school bus itself, it's not spouse's car either. It also applies to any other type of vehicle that we have experienced thus far; buses British and American, aeroplanes, taxis, here and in Mexico.

So what do you do as the rational parent? O.k. scrub round the park. [translation = scratch that] No park then, no park is a punishment. You were only trying to give them a nice time anyway, so no park, park privileges are withdrawn, you can stay at home instead as a punishment. Right? Trick question, very unfair. No, wrong answer. It's the wrong way around, you need to think 'inside out.' Apart from the issue of persistence and consistency, letting them stay at home is a reward, you are reinforcing the behaviour that you're trying [very hard] to eradicate. No, you're going to the park come hell or high water. You will all go to the park, no matter what they do, you will go to the park and follow through.

What will happen at the park? You have a fifty fifty chance of it being a disaster/a success. Who knows? Certainly not me, but the point is to go anyway, and endure whatever they throw at you.

Related Posts with Thumbnails

Bookmark and Share