Tenacity

When I mention that my son has a limited diet, many people are sympathetic. Many people experience the child who only eats a diet of pizza, chicken nuggets and other fast food items. My son eats "none of these" things, with the exception of fries. [translation = chips] Currently he enjoys a diet of some 17 exclusive items. Whilst I take many opportunities to widen his diet, I’m not in the least averse to a little help from any quarter. [translation = I have no shame]

I am up a ladder in the kitchen replacing the camping items. It is a galley kitchen. [translation = major thoroughfare with the family room and garage at one end, and access to the rest of the house at the other end.] My daughter pursues her little brother with a vengeance. I stand back and let her do her stuff. I have no idea why she has suddenly got a bee in her bonnet, but I’m more than happy to give her free reign, if only for my own amusement. The bag of salty pistachio nuts was a treat for the camping trip. My eldest son is the nut aficionado, like his Dad. My daughters like nuts, but they can more or less take them or leave them. Junior has yet to eat a nut, any nut. Even the universal peanut butter is poison to him.

Junior now likes salt, preferably from the salt cellar in a continuous stream. [translation = the consequence of permitting ordinary household items to exist without being bolted down or locked up]

She grasps a handful of pistachio nut shells, not the nuts. She’s eaten the nuts herself. She figures that the shell without the nut, salt covered, would be a great preliminary step, shell licking, prior to nut licking. I’m with her. It’s a sound theory. A shell is an inert thing, not a nut, a mere casing and not food.

“Lick it!” she commands. Junior makes rooster noises in response and legs it. translation = runs away very fast] She is nine and a half, and fit. He is six and a half but he has greater motivation on his side. [She stomps after him, “Come here you! You’ll like it, it’s salty, hmmm yummy, I just love it, you’ll like it too, give it a go.” Jumping Jack flash is still careening all over the house, utilizing a zig zag running approach to throw her off the scent. “Stop it! Stop it now! Stand still or I’ll sit on yah!” she bellows. Still shriller shrieks are emitted from Sparky as she hunts him down, a squib on the loose. “Just lick it. You love salt, you’ll love this, it’s great,” she persuades.
“Come here you little monkey!” she squalks, getting breathless. Junior responds with monkey noises and swings his body around the newel post of the staircase with aplomb. His agility is startling and his tippy toe escape sounds like a machine gun on the wooden floor.

They traverse through the kitchen, back and forth on switch backs. “I’m gonna get you!” she taunts, more positive than practical. Squeaky now has springs under his feet and wings for arms, so light on his feet, as fleet as a hummingbird. [translation = but a lot noisier] “They’re just shells darn it! There’s no nut, just the shell, the salty shell, it’s not even food!” she barks with frustration. “They’re only……er……..made of….? What are nut shells made of mum?” she asks, leaning against the ladder for a breather whilst junior sputs and spurts.
“Well, they’re er. … made of……woody….” I’m saved from declaring my ignorance as she hares off after her prey. “Stop it. Stop running. You know I’m gonna win,” she declares without any corroborative evidence. They dodge around the sofa, each vying for position. “Listen, sea shells aren’t food right? So nut shells aren’t food either. You’d lick a salty sea shell wouldn’t ya? This is no different it’s just a shell!” She launches herself over the body of the sofa, but he’s off like a whippet at the starter gate, miles ahead. They streak back through the kitchen. She pauses. “Why won’t he lick em Mom? Aren’t they just like sea shells? What are sea shells made of?”
“Well….they’re er…..made of……” Junior skates past again darting hither and thither like a beserk clockwork mouse. She plops herself down on the floor, “I just don’t get it. What is his problem?” I step down from the ladder and hunker down next to her, beads of sweat forming on her brow.


“Thanks for trying lovie, but maybe we can find better ways?”
“I thought that was a better way.”
“I know you did dear, very logical, and I think he was having fun really. I think you’re right, that making food more fun is a good way to go.”
“Do you remember when we made things out of mini marshmallows and cocktail sticks?” she beams.
“I do.”
“Didn’t work though huh!”
“Well he "touched" them and after a few days, he would join in and make them too.”
“Do you remember when we played finger soccer with peas? That was fun too.”
“I do.”
“Do you remember when we made faces outta fruit?” I listen to her list the many ways in which we have attempted to entice her brother to at least be on touching terms with food stuffs. It is a very long list. I’m surprised that she remembers so many of them.
“Do you know what?”
“What dear?”
“I told my friend about the funny things we do with him.”
“Oh yes.” I wait, her shoulders curl inwards, her chin drops ever so slightly, her fringe languishes over her eye lashes.
“They said that he was weird.”
"Indeed!"
"I know," she sighs, "everyone is different, it's o.k. to like different things," she parrots back at me. There's nothing like a direct quote to make your appreciate the full banality of your own words. [translation = tolerance sounds so feeble]
“Ah! Well…..did you have fun doing those things? He started to have fun too. As long as we’re happy doing the things that we’re doing, and not hurting anyone else, then I don’t think it matters what "other people think?” Now there's fighting talk!

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.”
“Sure.”
“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.