Early days 9 – Please explain what you are doing and why?

I consider myself to be a logical and efficient person. All too often I find myself in an odd spot. This spot and it's oddness, are usually revealed to me by an independent third party, the really logical and efficient one.

Like most parents, I adapt my own behaviour to cater for my children's needs. These behaviour patterns build up over a very long period of time, especially if your children happen to be autistic. What seemed like a jolly good idea at the time, [translation = step in the right direction] can end up being a straight jacket. [translation = the need for sameness, routine and predictability]

I open the door to my chum in my dressing gown. [translation = good friend and robe] My pal visits for coffee when my three youngest children are at home with me. We are in the family room attempting play, without coffee. [translation = we don't want any accidents and anyway coffee 'stinks']
“I want it!” screams Junior.
“What do you want dear?”
“Dah Bingo game.”
“Great! I'll just nip up and get it. Back in a minute!” I dash upstairs leaving my chum and my children. I am back in the blink of an eye and deposit the Bingo box in front of him. He pats the lid and reads all the writing on the box.
“I want it!” screams Junior.
“What do you want dear?”
“Dah Marbles game.” I excuse myself and go to retrieve that game from his bedroom. I return with accompanying cheesy grin, because I am so proud of him.
“What are you doing?” asks my friend as Junior starts to verbalize his next request.
“Oh just getting the toys that he wants. Isn't it great!”
“Which bit of that is great?”
“That he asking, using his words, that he wants toys, that he's not having a meltdown because I'm too slow, that all hell doesn't break loose whilst I'm upstairs, that they can hold it together long enough for me to get back down….delayed gratification isn't it? Great! Great! All great!” She looks at me with a withering stare.
“What?” I squeak.
“How many times have you done that?”
“Done what?”
“Gone and got what he wanted?”
“Today or over the last month? This is such a break through.”
She sighs and mangles her hands, “let's say today?”
“Hmm, let me see. He's been up since about 5, it's nearly 11 now, er……I'm not sure, but lots. Lots and lots.”
She looks around the family room where every available space has a toy, a toy brought downstairs by me for my son because he asked me to.
“You've not had time to get dressed then?” she asks innocently.
“Not quite, but I knew it was only you. I knew you wouldn't mind.”
“Would you like me to watch them so you can have a shower?”
“Oh no, that's o.k.” She looks at me again. I am not sure what that look is saying?
“Was it tough getting them all dressed this morning?”
“We were done by nine thank goodness, but breakfast was a bit of a disaster.” She looks across to the table with the detritus of 'breakfast' remains.
“Have you thought that maybe he could go upstairs and get the toy himself?” she offers, ever so gently.
“Oh no. You know that none of them will go upstairs, much too scary. That's probably one of the next steps I should be working on 'de-sensitizing' upstairs.”
“Maybe we could help him 'play' with some of the toys that you've already brought down?”
“What rather than reading the words and patting the boxes?”
“It's a thought, although I know you're very pleased that he's able to touch the paper!” she acknowledges warmly. [translation = tactile defensiveness]
“Oh you're so clever to remember! Isn't it wonderful!”
“Yes.” She mangles her hands again. “The words are great, but he's still …….quite loud.”
“I'll be working on that next, modulation and regulation, using an inside voice, saying please, all that kind of stuff.”
“I can see that you've thought it all through,” she says hesitantly, slowly. I beam and bask back at her, my true friend, one of the few people on the planet who understands.
“Maybe he could choose his own toys by himself?” she repeats.
“Well the toy cupboard's locked anyway, so I'd have to do the de-sensitization to upstairs at the same time.”
“Why is the toy closet locked?”
“Because every morning they wake up at about 5 and empty it. Take everything out, dump out everything on the floor and then run downstairs. It's more of a cupboard emptying exercise. They don't play with anything once they've emptied it. I'm not really sure why they do it apart from to drive me completely batty. I couldn't think what else to do so we just put a lock on it. I'm not at my best at 5. Am I ‘fading’ or ‘extinguishing,’ I get in such a muddle?” I suppress a yawn.
“Neither at the moment, but don’t worry about it. No time for the gym I suppose?”
“Gym! Are you mad, you know I'm allergic to exercise.”
“It would give you a change of scene.”
“The child care won't have them, we were banned, oooo 18 months ago.”
“Have you made any progress with the Respite Care application?”
“I'll try and do it later. Would you like some lunch?”
“Thanks but no, I need to be off.”
“Er, what are you having for lunch?”
“Oh I won't bother if you're not staying, I'll just make a start on theirs.”
Our entire conversation is punctuated by weeping and wailing from various parties. The meltdowns are frequent but also low frequency. I am outnumbered, and even with the help of my Muse, we are hard pressed to keep everyone occupied. [translation = for the 40 minutes of her visit.] She is probably the only adult person I will converse with in a week. [translation = spouse works for a Start up]

A good teacher has a lesson plan that has been carefully devised after school hours. The good teacher also has qualifications in her chosen profession. A good teacher then puts that lesson plan into practice with her charges. If there is not time to devise a plan, then the weak teacher finds that she falls into bad habits, unless there is someone else around to guide and highlight the mistakes. Unfortunately, 'on the job training' and irrelevant qualifications, are the norm for parents of autistic children.

My worthless piece of advice for the day? Find your Muse or become one yourself, they are invaluable for your sanity, and we all need a good chum.

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