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Thursday, February 15, 2007

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.


chrisd said...

It's so hard when you're sick. You're doing a great job!

KAL said...

Oh I feel your pain. I'm sure they'll remember soon enough. It's got to be so tough when you're ill.

Jerry Grasso said...

First - you need your strength, and you are no good to anyone when you aren't well (yourself, your children, your spouse)....so first, take care of you at this time.

Second - I have found even my autistic ones fall back into routine, while hard transitioning back, they like structure, and will fall back in line when you force them to...seems to me, that they being what any normal kid wants to be when his/her parent ain't around - a lazy blob!

Hang in there - hopefully the transition back will have only a small number of bumps in the road.

I assume you are as passioniate in the real world as you are in the virtual one, so I expect this to be no problem for you....

When you are healthy enough! :-)

Have a good weekend.


your home help sounds like a treasure, I hope you are feeling better soon.

Anonymous said...

can you send me the link to on crossing the midline , i thought it was well written and I wanted to share it with an ot. I couldnt find your email...

kristina said...

It's not 2 1/2 years of work lost---they can adapt, be flexible, more than we think. I always worry the same with Charlie ("oh no he's gotten into X and ALL IS LOST......") but he can learn that sometimes things are different under differing circumstances.

Rest up!

by Joanna DeVoe said...

You're very poetic when you get going. Is this on purpose or a product of exhaustion? None the less... it works for me. Wish I had home help too. The packed lunches... brushed teeth... clean counter tops... Sounds divine!

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