Prosody is contagious?

[Ref 1 Prosody = the pitch and cadence of speech, also tone or volume for current purposes. Many autistic children, including mine, have speech patterns that distinguish them from other disabilities.]

It is my nature to be annoyed. The list of petty annoyances is long and continues to grow. One ongoing annoyance is when someone telephones and begins gabbling away with a thick incomprehensible American accent. They do this because they have mistaken me for my daughter. These youthful chums are taken aback to learn that I am 'the mother' because we 'sound the same.' Whilst I would like to 'spit blood' in response, I am incapable at the moment, due to the jaw surgery. There again I can't answer the phone either, which is equally as annoying.

Very occasionally I will hear my own voice, perhaps after we have used the videotape on the children. I find it disconcerting, as it doesn't sound like me at all. I wonder how many people are familiar with how their own voice sound, as if one were an external listener? But I digress.

I attempt to speak the Queen's English with a huge plastic splint in my mouth. I sound…..weird , even to my own ears. My BBC accent has morphed into a slurred, drunken dialect of unknown origin.

I have a stack of library books on the dining room table, in an attempt to resume 'business as usual.' Because the cuisine on offer is not to my children's taste, I lure them to the dining room table with the bribe of stories. I ignore the little voice pricking my rules of decorum, because everyone knows that to read at the dining table, is the very height of bad manners.

I attempt careful articulation with lips that are numb and pins and needles fluttering over my face. Clarity of speech is essential or I will have to repeat myself, which may be more than I can currently endure.

I avoid the tactile books as there are only so many issues that I can deal with at one time. [translation = the books that have texture, are part of junior’s ‘sensory diet’ but generally provoke meltdowns unless carefully choreographed.]

It is more of a picture book, which means fewer words and lots of attractive illustrations. I read slowly, with careful annunciation, which still sounds as if I have a mouthful of marbles. I keep each word distinct and try not to spit all over 'Voices in the Park.' [Ref 2] I draw their attention to the anomalies and visual jokes, which further distracts them from the torture of dinner.

As I close the book and reach for the next one, junior asks, “mummy, why are you dah sound of dah robot?” Oooo the life of a marble mouth.

Ref 1 = from Pervasive Developmental Disorder, An Altered Perspective by Barbara Quinn and Anthony Malone [The best introductory book.]


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[Un]Favourable Peer Review?

mcewen.minti.com [test]
Presidents week means that the children are at home on holiday. With a brief preamble and a schedule board to hand, I suggest a bike ride in the park.
“Do you think that's such a good idea Mom?” she asks politely. I am pleased that she is aware of the many pitfalls of such a venture, all the possible meltdowns and squirmishes that we may need to deflect or endure. The boys are close by. They do not 'attend.' They are not 'included' in this exchange. I am fairly confident that the content of the conversation is being processed.

“Oh, I'm sure it will all be just fine dear, don't you worry, we have all day to manage it.” What a nice young woman she’s developing into. We women of the world need to rise up and unite.jaw surgery.” Oh gosh, such thoughtfulness shows her ever growing empathy and maturity. I attempt a sweet smile, although it's a bit lop sided. “That's so kind of you dear, but my body is fine, I'll just need to be careful about my face that's all.” Why isn’t the world populated only by womankind? I can feel my feminist banner on the rise above my head.
“That's what I mean!” Enough spunk and spice to tell it how it is. The banner flutters against the ceiling.
“What do you mean?”
“Well, your face is going to scare little children!” Ah. Such consideration for her fellow 'man.'
“Oh it will be fine, I'll be cycling so fast I'll just be a blur.”
“But you'll have to stop sometimes and then people will see you,” she squirms with a tone of alarm. Such sensitivity delights my heart.
“I don't think that there will be many people in the park, most people go away for the week on holiday.”
“Some of my friends aren't going away on vacation!” she translates unnecessarily. “Some of my friends might see you and then what?” I had no idea that her pals were of such a delicate disposition.
“What?”
“It'll be soooooo embarrassing to have a mom who looks like a …..a…….well, not very nice.” Ah. Don’t sugar coat it dearie. My banner crashes down on my head, causing only psychological damage.
Junior jumps to attention and skitters over to us, scatters a pile of Pokemon and shouts, “but mummy has dah beautiful knees, so dah little kids can look at her kneeses!”
“Oh you're so dumb, my friends aren't little kids, they won't be looking at her knees.” Senior son snails his way over to the table where he collapses slug like, with a sigh to add, “it's o.k. I had dah big friends in my class too. My friends like mom's talkin.”

Rats to puppy dog tails! Such a shame that I still sound like a marble mouth.
mcewen.minti.com


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Time to clean up your act

Around this neck of the woods where fine motor skills are in short supply, the management relies upon the use of liquid soap to keep hygiene at acceptable levels. Cleanliness for one of my boys, is a high priority, falling into the OCD category. My other chap is indifferent. I sometimes consider allowing the dirt to build up to the level where I can simply chip it off like a crust with a chisel, to save time.
Liquid soap of course is one of those new fangled extravagances of modern life, but I hadn't realized quite how insidious such shopping preferences can become, especially for one such as myself, someone “allergic to shopping.”

I decide to indulge my family. I ponder if I really want to squander this gift upon my unappreciative herd, but the thought of those beautiful bars of soap spending another year on the top shelf of my closet, makes me wince. It smacks of the 'best china' or 'parlour,' things that are only used on High days and Holidays, imposing an unnecessary paucity on daily life. I pull off the lid to be enveloped in wafts of lemon scent. It even smells clean, which is just how a cake of soap should be.
I am apprehensive in view of junior violent objection to cleaning solutions that involve fruit. I determine to choose my words carefully.

“What it is?”
“It is soap”
“Soap! Soap? It is not soap!”
“It is really. You use it to wash and get clean.”
“Er, no, I am finking dat you are making an accident, not a deliberately.”
“Why?”
“Because dah soap is er…..I dont know er……dis is not soap because it is being hard.” Oh of course, why didn't I think of that?
“I see. Well this is an old fashioned cake of soap, this is what people used before liquid soap was invented.”
“Cake! Cake? I am never eating it, it is terrible for me!”
“Ah, no, you don't eat it, you wash with it, just like liquid soap.”
“Not cake?”
“No that's just the descriptive noun, like 'pod' of whales.”

I demonstrate usage of the strange item to my kinesthetic learner. He makes no comment upon the lemon fumes, merely wrinkles his nose. “Here, you have a try.” I realize immediately that it's a large item to hold for small hands. I also realize seconds later, that it has a hitherto forgotten flaw as it shoots out of his grasp and skids into the other room, an erratic spinning top. He squeals with glee and chases after it. His delight alerts the others that something is afoot. I observe three children gamboling in my kitchen, as smears of soap begin to adorn every surface.

Junior has his own light bulb moment, stops abruptly and takes a marching step towards me. “You know, I fink dat it is fun to be playing wiv cake. We should be having dah chocolate soap because it is smelling nicer than lemon fruit stuff.”

Those moments of self generated problem serving reward us both – isn't that killing two birds with one stone?


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Count 'down' for meltdowns

At breakfast he screams at me in a rage of frustration. We have progressed to the stage of ‘bowl and spoon acquisition,’ a precusor to cereal consumption. The bowl is empty, the spoon close to hand. He yells at me again, “what about the milk?”
I give in and give, fetch the milk and pour it into his empty bowl, as I don't have enough voice volume to compete after jaw surgery. This act provokes a full meltdown of even greater frustration and rage. Although he has a rule about cereal first then milk, he missed that step in the sequence.

Simultaneously, junior is having a horizontal meltdown on the kitchen floorboards, caused by an absence of his preferred bowl, without which, he is incapable of eating his breakfast. The combined level of screaming is impressive.

Why? To the casual observer these meltdowns seems unreasonable, because the underlying logic is hidden. As adults we have preferences. If the favourite blend of coffee, made in just the right manner is unavailable, we might be miffed, put out, it could ruin the start to the day, but we have learned coping mechanisms to deal with the frustration. For some autistic children, not only have they yet to acquire coping strategies, often they are not able to articulate the source of frustration in the first place. Even if they are verbal, their emotions are so volatile and overwhelming, that this may override the ability to communicate effectively.

The preferred bowl is the easier of the two to explain. Many children have a special something or other. The problem for the autistic child, or rather the parent of that child, is that the special something or other category, applies to just about everything.

As with typical children, generally, this development doesn't happen all at once, but creeps up on you by stealth. First it's just a couple of things of no great significance, all perfectly harmless, makes the child more content and everyone's life more peaceful. Gradually, the list of special items applies to just about everything in that particular child's life. If you align this principle to both children, before you know it, you have effectively trapped yourself and your children into a rigid cage. Rigidity or what I prefer to term 'predictability,' becomes the new 'norm.' Deviation from the norm invokes meltdowns.

Whilst there are often complicating factors, depending upon the make-up of your child, the theme is the same; safety, comfort and security are provided by the availability of these props, even if sometimes they serve no practical use, as with the many tiny or particular talismen that accompany every waking, and sometimes sleeping, moments. Preferences for colour, texture, smell, sound when touched, and so on, all can all play a part in the choice, due in part to the sensory make up of the individual.

I know that it is a mistake to slide into this situation in the first place, but it is hard to resist. Once you find that you have buried yourself in this pit, is it a long climb out again. The temptation is to maintain the status quo, to transform yourself into the most efficient air steward in existence, so that they are never 'without' whatever it is. [times two] This was the path that I initially chose, although I can't say that I actively chose it. It was more the line of least resistance, because I was out numbered.

The child that 'tantrums' at two for the big yellow duck or die, brings an indulgent smile to the parents. The same behaviour, when the child is 5, 6 or older, is quite another matter. It would be handy for the parent, to cut these ties and free themselves from the yoke. It might also be of some relief to the child, if some of these rigidities could be softened, to relieve them of the agony that they experience each and every time that perfection cannot practically be achieved. It is likely, that as they get older, greater degrees of control will need to be relinquished, because whilst it may be possible to control your own home environment, the world at large has more variables.

18 months ago, junior had 6, level 10 major [translation = severe] meltdowns in the same 40 minute morning period. His older brother varied upon that average. Both could sometimes squeeze in a few more meltdowns into those time period.

Eighteen months prior to that, there were so many meltdowns from both of them, within the same time frame that there were too many to count.

Then and now, it's a great ratio.

A note [possible solution for some children]
This is a 'do as I say' note, not a 'do as I do,' note.

The primary commodities required for success are patience and calm in the parent, which are also two attributes that are a bit thin on the ground around here. All children pick up on their parent's frustration and agitation. Neither assists either individual.

First determine the cause of the frustration. This is the greatest difficulty with my children due to their emotional state causing an inability to communicate. To help find out what it is that's causing the bother, PECS may help. Even those, or other clues won't help, unless your child is calm enough to be willing to attempt communication. There are a great number of calming strategies available. For mine, breath control via example [doing it together] and massage, help considerably. Taking the one that is having the 'problem' away from the situation that is causing the 'problem,' also helps. [I think this is because the visual reminder of the 'problem' glaring at him, only makes matters worse, although this is tricky if there are other children around]

The super crush bear hug works for the other. It calms him and lets him know that it's o.k. to feel this way.
Once you can tease out clues, you then have an opportunity to find a variety of different solutions. This may also be tortuous because many of my 'adult' solutions, don't hit the mark. E.g. he wants a blue bowl, several are available, but none are the right shade of blue. This may be a long exercise to teach the concept of 'compromise.'

These strategies help at the moment, now. They may not be effective next week, or tomorrow for that matter. Previously, other skills helped, but they don't now. As your child grows, different things will work or fail, but fortunately this is positive proof of 'change' and development. Life would be so boring if it remained the same.


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Sparks and spikes

First thing most mornings, senior son has his full repetoire of words and more importantly, he is willing to demonstrate their use. This child's speech delay has transformed him from non-verbal for semi verbal, although an expert has yet to confirm this. He can struggle to retrieve the word 'green,' [translation = expressive language, what he can actually say] and yet in the alternative, use the preferred world of 'chartreuse.' [translation = receptive language, the words that he understands as they come in.]

This is in part why it is so difficult to accurately assess language use. I would liken it to being unable to remember the name of a film, an actor, that woman who used to live at the house at the end of the road; it's on the tip of your tongue but you just can't hook it. The frustration this causes, often means that it preferable not to speak at all but it is debatable whether a meltdown in the alternative is better? I need him to practice using words. The meltdowns are a by-product of his effort.


Although breakfast and the morning routine is fraught with stumbling blocks for the unwary, his ability to talk coherently often leaves me breathless with amazement and unadulterated joy. In a home full of rigid narrow rules I gasp at his expertise. Breakfast cereal follows fruit consumption. The fruit is compulsory as this is when they are at their most hungry. The reward, is a choice of about half a dozen types of cereal, some more preferred than others. The choice is limited by cupboard space. Until one box of cereal is empty, when there is room for a replacement, they are denied additional choices.

He skips to the cupboard and clambers up on the counter for a better view as I start my verbal protest. He waves a hand in my general direction saying sotto voce, “now just calm down now, it's gonna be o.k.” He says it to [me], not to himself as he usually does. The cupboard is stuffed to overflowing, “now let me see,” he pauses, his eyes flicking between the cupboard and my face as he calculated. He jumps down with alacrity and heads off to the garage and additional cereal packets, but now before calling over his shoulder to advise me, “I be right back, you just wait there nicely.” Not only at the phrases appropriate and delivered in a fluid flow, but he turned his head towards me whilst running in the opposite direction. Although this increases his chances of an accident, the very act of turning his head to send his message is striking.

When he reappears with a new packet, leaps onto the counter and jams the box between the others, he announces in triumph, “you see! It fits! I was right, you were wrong, but that's o.k. I forgive you.”

He tumbles back onto the floor. He visually checks that I am in the correct position before he turns his body forward again, so that he can gently reverse into my body, so that we curve together like spoons. His hands reach back to hold my thighs before he does a little jig, a backwards cuddle. To you it is disconcerting with sexual undercurrents. To me it is the demonstrative child exhausted by his speech efforts, yet wanting to communicate affection.


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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.


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Visual cues – are you guilty?

He trips over laundry soaking in a bucket as he comes in from the garage.
“Sorry dear, I left it there to remind me to put it on to wash.” He shakes the water off his sock and steps into the kitchen where I'm standing at the sink. He leans on the counter and hastily removes his hand, “oh sorry dear, I'm just leaving their paintings to dry there so that I don't forget to pin them up before we go to bed.” He stretches past me to reach the soap but tips over the upside down bottles, “don't tell me, you're just trying to get the last few drops out, right?” He knows me so well.

The floor is strewn with piles, socks to match, paperwork to be completed, junior's collection of oral desensitizers to be sterilized, backpacks to be filled, library books to be returned, each an indication of my diminished brain capacity as the years advance. He taps the sack of slug pellets with the tip of his toe, “yet another job?”
“No, I did manage to get out into the garden but the sacks there to remind me to put it away somewhere safe.”
“Great, so of all these things that you want to do, productivity today has been limited to the annihilation of the gastropod population!”
“World peace would have been a better option.”


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Learn by observation

Many autistic children are reluctant to make eye contact and mine are no exception. Additionally, they do not naturally orientate their bodies or faces to the person that they speak to. The average person, even when they leave mid conversation, is likely to talk over their shoulder as they depart. To have a conversation with someone who is in a constant state of movement is disconcerting. Generally speaking, it is my habit to attempt to reduce those movements, as it is supposed to help them concentrate on their speech, although I’m not entirely convinced. Occasionally, they manage it all by themselves.

I hang over the sink sputtering ineffectually as junior appears at my side. He lies his head on the counter for a better view, pillowed and protected from the cold surface by his long sleeved arm. “You are a spitter now? We can be doing the spitting togever? You are all better now?” I turn to face him, bespattered by toothpaste, grab a wash cloth and hold it close to my face.

“Do you get dirty when you spit dear?” He cogitates as white foam dribbles down my chin and drops onto the waiting cloth. He puts his index finger to his lips, an affectation that indicates that thought processing is in progress. His pupils sweep my face in assessment. His nose crinkles and eyes narrow.

“Er……you know I am finking dat you need to do the practicing more.”


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A fate worse than death

I busy myself in the garden whilst spouse supervises inside. It may be only February but Spring has sprung. Tender shoots have shot. I pause to admire a ladybird.  Oh the delight of living in California! Then I step on a snail. Tender shoots and gastropods at the same time. I drop the secateurs and dash inside to execute plan B.

Spouse has plans for two children, so I am left with the short straw. I explain the situation to junior, but he is not impressed with his options; “not dah garden center,” he wails as he runs away at the speed of light. I do not punish merely torture him with this trip. It's not deliberate but necessary, before the slugs and snails consume all green matter that emerges in the garden.

I make sure that he is appropriately attired for such an expedition; shoes not sandals, long trousers, long sleeved jacket, hat and gloves to ensure minimal skin exposure. I throw the umbrella in the car for good measure, as they have hoses in the garden centre and he mistakenly believes that an umbrella will ward off the evils of wetness.

We set off to the garden of Eden which holds more therapeutic power for me than any spa. Junior does not share this view. For him, there are so many things wrong with the garden center that it would be hard to list them all. The potential for becoming dirty or wet is high on the list objections. Because it is outside, there is also the chance that a breeze may ruffle his hair. Plants and soil may smell disagreeable. Flowers, not that there will be many at this time of year, may have perfume. Even if the fragrance is pleasant for most people, for him it is often too powerful.

The ground is uneven with channels to remove excess water, so that little rivers criss cross the pathways. The shelves drip. The hoses and taps drip. There can be beeping fork lift trucks moving palettes around. They move in unpredictable directions. They jerk and spout plumes of black sooty smoke.

I determine to make the exercise as swift and painless as possible.

I stand at the check out queue clutching a sack of slug pellets under one arm, my other hand securely grasps junior’s, as he jitters and skitters in a two foot radius. All of a sudden he stops. A gasp of true awe matches his eyes out on stalks. He cannot talk, but he does point. I look but I do not see. His hands cover his mouth as he tried to contain his excitement. I look again but I cannot see whatever it is that has transformed the torture trip into a treat. A little rain dance of joy starts in his tippy tapping toes and then convulses up his body. He's off at a gallop. I drop the sack and run after him but he stops just as abruptly so that I nearly fall flat on my face. Before him is a big golden coloured ball, a garden decoration I believe.

He admires his warped reflection and grins from ear to ear, “it is dah golden one!” he whispers. I peek at the bottom to find the price and gasp myself. I am about to splutter about the value of a dollar to my six year old as I watch him squeeze his eyes shut, cover them with his hands and then explode in delight again. I put the ball under my arm and return  to the check out and the sack of slug pellets.

The ball is strapped into the spare toddler seat next to him. He lays a palm on the smooth surface to keep it safe on the journey home. He spends the seven minute drive giggling and sighing with adoration. I spend the same seven minutes trying to work out how too explain how a bag of slug pellets could be so expensive to my better half?

I wonder if I could sell him on the idea of it being a lure to get junior to go outside, therapy, but not retail?


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Do we have to?

If my mum had suggested that we play a board game when I was a child I think I would have died of joy on the spot. That's not to say that we never played games, it more that the occasions when we did, were few and far between. Generally we played card games when we went on caravan holidays and other games during the Christmas holidays. Other than that, it would be a real red letter day for such a thing to occur. Perhaps it’s something to do with being an older parent?

It is with this mind set that I approach my own children, “older” but not necessarily wiser.
My daughters are always eager, willing and enthusiastic. Not so the boys.

The suggestion of playing a game is always greeted similarly. It is a predictable as night follows day, which is why you need to be mentally prepared prior to commencement. You can pick a game, any game and make the suggestion. The suggestion is made verbally, with enthusiasm, the visual clue of the game box in your hand on bended knee. Assuming that the message penetrates in the first place the response is always 'why?' I know this is what they will say, and whilst I thank the speech gods that they are able to tell me this, at the same time, it reminds me that it is often the most simple concepts that are the most difficult to explain – because it will be fun, because we will enjoy ourselves, laugh together…………. Whatever the magic words are, I have yet to find them.

I know that I will have to herd and bribe the boys to come to the table – play this game with me and as a reward you can………… [fill in the current obsession]
Bizarre! The game should be the reward in my book, but that is of course because I have the wrong book and I'm definitely on the wrong page.

So saying, after all these years I have finally worn them down. They will play the game, sometimes perfunctorily and occasionally with a modicum of enjoyment, but I suspect that they're doing it for me, rather than as a pleasurable form of entertainment for themselves. There again, such selflessness on their part, as well as this additional nugget of evidence to thwart the theory of mind, gives me considerable delight.

Now they will come to the table, muttering the kind of phrases that you get from teenagers when they finally capitulate and agree to do their chores; “Alright, I'm coming,” they sigh, dragging their little bodies over in slow motion, deflated and drained.

Hey, it's compliance! No complaints from me, and I get to ‘practice’ teenagers a decade in advance.

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