Some Terms Stick

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Speak for yourself – I am not a conduit

I understand some of it.

Part of it is woolly terminology.

How can it be a bathroom if it only has a shower? Why is it called a sitting room when no-one sits there? Dining room is meaningless if ‘dining’ isn’t in your vocabulary. The situation is made worse by parents who do not use language consistently – where ‘corridor’ and ‘hall’ are used interchangeably, at random. How can it be a corri’door’ when there are no doors?

Then there’s the practical matter – we live in an open plan house, where a ‘room’ may have two and a bit walls, undefined, not delineated by any visual boundary, no doors bar entry.

Part of the problem is that the name of any room is unimportant anyway – off radar.
Why is the garage a garage, when it houses a car not a gar? What about the kitch, what is it? When you leave, does it become a kitchout? Isn’t every room a family room? If you share bunks why isn’t it a bedsroom? It can’t be a spare room or guest room, and a day bed is a contradiction in terms. Only the garden is easy – out-side, enclosed by a ten-foot fence, with locked gates.

When they were little they didn’t have the words to explain the confusion. Now they do, and I’m the one that’s confused. We need a map for our own home, but we keep plodding onwards and upwards.

***

I sit on the floor with my youngest son, a pair, while the respite worker, Ms. G, sits at the table in the dining room – she’s six, stride-lengths away. Conversation is encouraged by not obligatory. I start:-
“Why don’t you tell Ms. G what happened to your sister yesterday?”
“Can’t remember.”
“Can’t remember?”
“No. You tell er.”
“I think she’d rather it about it from you. It was only yesterday.”
“Yesterday is being a very long time ago for my type of peoples.”
“What about all that drama? Tell Ms. G. She’s listening.”
“Don’t know drama.”
“Yes you do – when I had to rush off to collect her from school and take her to the doctor and you stayed at home and were very good because you used your emergency crisis behavior.”
“Oh yeah.”
“So? Tell Ms. G what happened, how she hurt her finger?”
“I don’t know. I weren’t there.”
“But we told you all about it when we got home again. Ms. G wants to hear all about it, from you.”
I look at his dead pan face.
“SIGH..Basketball is a blood sport?”
“Not that bit, anyway, don’t tell me. Tell Ms. G. Remember what we talked about? Being polite. When someone’s in the same room, include them, address them directly.”
“But she ain’t in the same room.”

I look across expanse, from the open plan sitting room, to the open plan dining room where a silent Ms. G observes and grins at me.

Sometimes I’m tempted to run away and hide amongst the filing cabinets in dad’s home off’ence.’

Quite a long time ago, we used a lot of PEC’s. We still use them as scaffolding. You can buy them from lots of different place and make your own to be more carefully taylored to your own child’s specific needs, however, I can across a new place where you can buy them over here as part of the Autism Network – especially handy if you happen to be UK side.


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Drug Barons and Corporal Punishment

We continue along the medication super highway with one of our sons. The matter is a huge issue for many families autistic and otherwise, but we reach a fork in the road, an unexpected hic-cup. As always in such situations we are caught out and ill equipped to deal with the rapid fire fall out. The best policy at such times is to deal with each child individually, each according to their own unique needs. The carefully tailored answer by an adult can prove that the road can only lead onwards and upwards.
“You are not hug me?”
“Sure I'll hug you.”
“No, no, no you can not be hug now.”
“I thought….you want a hug later?”
“No. No hugs not more.”
“Oh are you too old for hugs all of a sudden?”
“No.”
“?” He helps me out as it's only 5:25 in the morning.
“It's dah rule?”
“It is? Whose rule?”
“Dah school's rule.”
“No hugging allowed in school?”
“No.”
“?” We have already had two false starts and I don't want to push my luck by asking a stupid question, or alternatively another cumulative silly question. His little brother steps forward to offer his assistance. “No be hug him!”
“Why?”
“School rule.” Oh dear, we don't appear to be making any progress.
“They have a new rule in school?”
“Yes dis week it is being 'SAY NO TO DRUGS!'” he bellows at a force ten gale.
“Ah yes, and rightly so. You wore red shirts yesterday, today is crazy sock day…….what has that got to do with hugs?”
“It be dah sign.”
“There's a sign at school that says no hugging?”
“No! Dah sign it be say 'HUGS NOT DRUGS.'” I'm not one to criticize a catchy phrase but I'm still no further forward. They look at each other, as if determining who shall be the bearer of bad news. There is a mental coin toss between them, before the little one speaks on behalf of the elder. “Well he be dah drug kid……dah pill….he is eat drugs…….so we cant be hug him no more.”
“Oh no, that's not drugs…..a drug……..it's…….medicine, of course, yes, that's what it is, the pill isn't a drug it's a medication. Medication is great, just like the asthma inhaler.”
“Dey are be two drugs in him!”
“Medication!” I hear spouse bumble down the stairs.
“Two?”
“Yes two, but they're medications not drugs.” They look at me, liar that I am. I can feel myself crack under the pressure of their disapproving silence. Their Dad ruffles their hair and picks up the dregs of the conversation, or rather, interrogation.
“Are you be lie?”
“Are you be dah porky pie?” Deny, deny, deny! He looks on, bemused, the other responsible adult in the household, unshaven with only 4 hours sleep under his belt.
“No, I am telling almost the exact truth.” What is an acceptable definition of 'drug' in this context for 6 and 8 year olds? I glare at their father willing him to bail me out, but there is only a sleepy vacant smile on his bristly face. I clutch at straws, “you know, if you buy it at the Chemist…er…the Drugstore even, then it's medication and that's good. Right?” I should have kept that rhetorical.
“If you not buy it at dah drugstore it is bad?”
“Yes.”
“Who what……..where else you are buy dah drugs?”
The sleeping adult wakes up to add his contribution, “just don't buy them on a street corner off some dodgy….ouch!


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Clueless

We sit at the table on the last spot of homework, a cross-word for the first grader. Rather than written clues, it has pictures. The last slot is blank. The icon depicts a bowl filled with some kind of liquid and a spoon. It begins with s and ends in p. It is a foodstuff that junior has never consumed. [nor likely to in the near future] I think that he is being awkward.

You would think after all this time, I would be more ‘with it,’ in the autism department. My learning curve in other areas of my life, is advancing, as evidenced by my ability to understand the humor in “my pal’s posting.” This is fun, this is progress. In theory it is evidence that despite my advancing years, you can teach an old dog new tricks. At the same time, when it comes to autism, I always feel that I am several step, if not leagues, behind.

His aversion to food [“neophobia”] often leads to difficulties. A long time back, when he was first evaluated, whenever a food item came up in the pictures, he refused to answer, would not say the word aloud. Due to his tactile defensiveness, he also refused to point to the correct answer because then his fingertip would come into contact with paper. It took a wee while to get over that particularly difficulty, until we rephrased the question from 'which one of these do you eat?' to 'which one of these would your sister eat?'

I think we are experiencing the same issue with the homework.

For myself, following jaw surgery, I am so heartily sick of Cock-a-Leekie, Mullagatawny, split pea, puree etc., that I find my sense of humor is under strain.
“Lets think about it shall we? What did I have earlier today for a snack?”
“Er, you are having dah chocolate milk,” he drools in a breathy tone.
“Yes, but not that snack, that is a snack that you drink, this is a snack that you eat.”
“Oh.”
“Can you think of anything else perhaps? What did I have later, the thing that smelt bad?”
“Everyfink dat you eat is smelling bad except dah chocolate milk!” I seem to have mislaid my 'thinking out of the box' skills, and a small sigh escapes.
“How about I show you a tin of it?”
“You have some in a tin?”
“I do. I have lots of tins of it!” I nip out to the garage and return with an armful of tins to park in front of him on the table. “There you go. What are these?”
“Dey are cans. Cans is beginning wiv dah 'c' and is ending in dah 's'. Dat is bad. Dat is not dah right answer. I am a bad student. Mrs. Ko will be giving me dah bad grades because my brain is too tiny today!” He weeps and his head drops to his arms on the table. It's frightening how quickly he can spiral down into despair. They are real tears.
“Not at all, you are very clever and a great student. Now how about we read the words on the can? Look!” He raises his heavy head and dewy eye lashes, “it is saying ‘soup,’ I already am knowing dat but it dah wrong answer.”
“No! It's not, it's the right answer, you knew it all the time, how clever you are.”
“What! What? What! 'Soup' is being dah right answer?”
“Yes dear! You're right!”
He spits and stutters, bristles and sputters, “but, but, but ….you said it wuz for dah eating kind of food! You are dah idiot! Soup is dah liquid, so you are drinking it not eating!”


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What I am?

I appear on the scene with my limited powers of speech and a wipe board as back, up in case I get out of my depth. A heated debate has ensued, but no umpire is near to hand. Actually there are a couple of umpires handy but both of them are busy with 101 domestic responsibilities.

“I am a vegetarian because I don eat meat!” he squalks at his sister with venom.
“Tell him mom, tell him he's a big fat liar. Tell him that to be a vegetarian you need to eat vegetables.”
“Yuk, I am hating dah vegetables. What I am then?” I try and write sweet potatoes and fries on my board as evidence to the contrary but my hand writing is too squiggly, they're already several sentences and topics ahead of me and no-one will look at the board anyway.
“I don't know what you are? What is he mom?” Senior son comes to my rescue as I start to scribble on my wipe board.
“Hey mom, I know. He is an omnivore coz he is eating dah meat but he is not eating dah vegetables.” The last word has four very distinct syllables when spoken in this deliberate tone. He beams at me with the satisfaction of knowing that answering before anything has been written on the board, absolves him from a duty to read anything. His diction is so pronounced and evuncular, his eyes are so large and his face so close to mine. I have a strange vision of Mr. Bean and an ulterior motive. Junior protests, “dat is stoopid, I am not eating dah 'oms' either. What is an 'om' anyways?”
“It's from the Latin! 'stoopid yourself'!” I wonder if it is from the Latin? It sound's convincing to me, but my brain capacity is incapacitated and I’m easily swayed if someone sounds like they ought to know what they’re talking about.
“Maybe he is a herbivore,” his brother offers with exaggerated helpfulness and three crisp syllables, whilst his hand rests on mine, that rests on the wipe board that is holding the pen. He beams at me, guileless and engaging. I could swear he fluttered his eye lids at me! I wipe my board trying to get three sentences ahead, or two questions ahead, or simply ahead. I resist the temptation to tell him that he is in fact a neophobe, as not only is that not terribly helpful, it will only further confuse the issue between omnivores, herbivores and carnivores.
Spouse and the spare umpire arrive at my side and remove the wipe board, “Mum needs a rest now, but I know one thing that you all are!”

Three little faces turn towards him with anticipation,
everyone's eyes drift towards his mouth and wait,
little sparks emit from junior's fingertips……
”you're all choccivores,” he announces with a flourish
and a bowl of chocolate mousse.

He should come home more often.


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Giving Thanks [translation = Indeed we do]


Is it autism or dyslexia that causes that? ‘Thanksgiving’ indeed! They have it the wrong way around of course. After a decade here, no-one can give me a satisfactory explanation as to why it's 'Thanks Giving' rather than the other way around? It makes no sense? Over the years I have managed to acquire a few genuine American pals. [translation = citizens who permit supervised visitation rights] These are persons who tolerate my inane interrogations. [translation = 'but why is it called bleachers?'] They dismiss my rational queries and tell me to get a new hobby. [translation = go away]
I stab at another chestnut with my inadequate tools.
“What it is?” he asks, concerned at my violent technique. [translation = Horray that he noticed, horray that he honoured me with a few words]
“It's a chestnut.”
“It is a nut?”
“Er, sort of, yes, it's a nut.”
“Why it hot?”
“So I can get the skin off.”
“Nuts have shells, not skin, why it skin? What is skin? It not nut?” I take out the unused grapefruit knife with the serrated curved tip in the hopes of removing more chestnut flesh.
“It's a 'chest' nut, it's a different kind of a nut.”
“I have a chest. It has skin too. My chest no have a shell but I am not a nut.” You may not be, but I will be soon! I delve into the kitchen drawer and find the melon baler and start digging.
“Why we have the nuts of the chest today?”
“Because it's Thanks Giving.”
“We have the nuts of the chest at Thanksgiving?” Stab! Stab! Save me someone!
“Well, we actually have them at Christmas.” [translation = the holidays]
“It is Christmas!? It is not Thanks Giving afterall? I have missed it?” Help.
“No, it's Thanksgiving today and Christmas in a month, ish.”
“Why for we are having the Christmas nuts now at Thanksgiving?” I've lost the thread, and accidentally mix the flesh of the chestnuts with the shells and skin. I sigh and turn to look at him, searching for words, words that will make sense.

Spouse appears and looks over my shoulder. A glimmer of a frown. “What is it?” he asks. I pick bits of shell out from under my fingernails poised to answer, but Senior son intervenes on my behalf;
“It is nuts of the chest!” he says gleefully, nearly managing to clap his hands.
“I just thought we were going to have them whole, with brussel sprouts, that's all.”
“Whole?” I query.
“Where is hole?” pipes up senior son. “We are having holes too?”
“Marrons, those French things in a tin,” proffers spouse. My mother would have heart failure if she thought I would purchase such an item, let alone permit it to enter the household. I correct his pronunciation. Senior pipes up again, “they are not maroon, they are brown, why you say maroon?”
“I didn't, I said marron, it's French for Chestnut.”
“French nuts of the chest are maroon?” he gasps.

I pass the bag of rogue chestnuts to spouse. “Here, you two can do the rest and see how many holes you can find whilst you're at it.” [translation = miffed]

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