Holiday love and the preface

A speech delay can be a curious thing, for both the speaker and the listener. Around here, for the longest time, my youngest son has prefaced most of his remarks with the warm up phrase –‘I am be.’ It’s the verbal equivalent of ‘um, er, well, actually.’ It’s a kind of precursor we’ve learned to live with, hardly notice. Just when we think it’s disappeared, it pops back.

After many tortuous years, our annual holiday to England, becomes easier. We have finally reached the point where my country of birth is not longer ridiculed, mocked and loathed – or at least somewhat less so. They have been won over by a few of the finer features of British life, some resurrected from the mists of time for purely artificial purposes. Archaic practices such as ‘afternoon tea,’ are welcomed. Without the actual tea, it’s a winner. A box of indulgent shop bought cakes and other nefarious dalliances. No more hand-made, wafer thin cut slices of cucumber, pre-soaked in wine vinegar with the lightest dusting of white ground peppercorns and crust-less bread, cut into triangles. I know I’m beat, primarily due to their fake, but very realistic, vomit noises – gems before minors. But we’ve made progress in other areas:-

“Tell me one new thing that you like about England?”
“I am be love dah pink meringues.”
“Great! Anything else?”
“England respects lions.”
“Oh the joys of Longleat Safari Park!” But that’s the thing about a speech delay—we bimble along the usual pathways, only to be pounced on and decimated by one perfect sentence. Frosting, glitter and sprinkles on an otherwise quite ordinary existence.
“And? Can you think of anything else? A third?”
“I am be love dah chutz.”
“Chutz? What’s a chutz? I don’t think I remember anything called a chutz?”
“They be chutz are wooden things.”
“What kind of a wooden thing?”
“Large… no small wooden things with painted.”
“Hmm. Give me another clue?”
“They are be big enough for a body to be inside.”
“A box. A coffin? Do you mean coffin? No you can’t mean that. I’d remember if we’d seen a coffin. Another clue please.”
“Sigh…No. Dey are be on the sand.”
“Shell? Rock?”
“No. No.”
“I give up.”
“It is be…for peoples.”
“Ice-cream cones, hampers, coolers?”
“No. No. No. It is be…for peoples who are be on dah beach.”
“A wooden…spade? Deck chair? Parasol? Windbreak?”
“No. No. No. No. Dey are be in dah wooden thing with paint.”
“People in wooden painted things on the beach?”
“Yes… you sayed they were be for peoples to be out of the rains.”
“I did? The rains? Ooo, you mean beach huts.”

Clearly my diction needs brushing up.

Quotes – speech delays and diction

“Can we watch dah ceptions?”
“Deceptions? What’s that about? I don’t’ think I’ve ever heard of that before?”
“Yes you know.”
“I don’t, honest. Do you mean Deceptocons, from the Transformer thingummy do dah?”
“Nope.”
“He’s right mom. You let us watch it yesterday.”
“I did? I don’t remember.”
“Sure you do. You remember.”
“I don’t, honest.”
“It’s dah cartoon with dah yellow people.”
“Yellow people?”
“Yeah. We watched it with Dad.”
“Really? Hey Mike?”
“Hmm?”
“What did you watch yesterday with the children?”
“Telly.”
“Yes, I know, but which programme?”
“Er…?”
“It had yellow people in it. Something from Animal Planet or National Geographic?”
“Er….”
“Something medical maybe…..jaundice?”
“Er….”
“You didn’t let them watch House did you?”
“No! Never. Ooo! I know!”
“Hmm?”
“The Simpsons.”
“!”

Intolerance - a snippet

We conclude that there are 4 potential restaurants that may earn our patronage today. Prior to any final decision making, I call one in particular, just to check.


“Hi, this is San Jose’s most premiere restaurant in the Bay Area serving find food to the discerning public, specializing in pasta and seafood in a family style, how may I be of service to you today?”

It’s hard to process the message, delivered at speed with a gasp for breath at the end.


“Good morning. I was wondering if you served fries please?”

I am careful not to allow the word ‘chips’ escape from my lips as it is unfair to confuse the foreigners. I keep it brief, as American’s dislike waffle and time wasters. I stop myself from havering over the use of ‘premiere.’ The pronunciation is so mangled it cannot be French, but I have started a new personal campaign, I shall not be picky about individual words. I shall be tolerant.


“Fries? D’ya mean French Fries?” she asks in a tone of American incredulity.
“Mais oui!”

My bad!

Exclusive and Elusive

One of the strangest things about a speech delay is the effect it has on a parent.

Lucky parents like me, notice that ever so gradually over time, the delay has diminished. They are less non-verbal. They have oodles of words. They can stick a whole stack of them together to form what resembles a first class sentence.

The stutters and stammers are less frequent. The diction is poor but comprehensible to anyone who is sufficiently motivated and interested. Yet their meaning……….is so often mysterious.

This could be a fatal flaw for a parent, but I say, if in doubt, just jump in with both feet.

“I wanna go mushroom surfing!”
“Uh, uh, uh, finish getting dressed first and then you can go mushroom surfing.”


“Mom?”
“Yes dear?”
“Now you are beed dah Super A Plus!”
“I am? Really! I don’t think I’ve ever had an ‘A’ for anything, let alone a Super or a Plus, for that matter.”
“Well…..now you are be!”
“B! I’ve been demoted already? I only just had the A. What did I do wrong?”
“Not ‘B’……’be’”

“D’ya know……ya can git…….. hedgehog pants?”
“Um…..no…..actually I didn’t know that. Do you want hedgehog pants?” I can think of few things more painful than knickers full of prickles.
“Japan.”
“Japanese hedgehogs? I didn’t know Japan had any hedgehogs? Porcupines perhaps?”
“No. Japan is have sonic.”
“Er……sonic…….sound……um…..”
“Sonic, he is be from Japan.”
“Oh, I don’t think I knew that either. Oh! Sonic the Hedgehog is Japanese!”
“Yes! I am be want pants like dat.”


“Dad?”
“Yes.”
“Where it is be?”
“Where is what?”
“My……DNA is be?”
“Oh, your DNA is in every cell in your body.”
“In my hairs?”
“Yes.”
“In my nail?”
“Everywhere, every single cell has your own unique DNA.”
“I am like.”
“What do you like?”
“Unique.”

Slap on the head for the hand maiden

I trundle through the day with all the usual hic-cups, the known and the familiar.

“I am done.”
“Oh good. I’m glad you’re finished.”
“No! I am not done done, I am done.”

I look at him covered in dot to dot paint spots, a rare achievement for those battling with tactile defensiveness. I doubt if his tolerance will last much longer, especially as the paint begins to dry and flake and itch. For the moment he is still at the soggy stage of body painting, but it’s none the less impressive for that. The paints are easier to manage in this format, where fine motor skills are thin on the ground.

“Well are you finished or are you not finished.”
“I am not finished I am done.”

Well really! This pernicketiness over words is beyond the pale! Must he always be so American! I remind myself, again, how lucky I am to have ‘non-verbal,' autistic children, who choose to communicate with me verbally.

“Alright, fair enough. So you’re done. Shall I clear away and help you get cleaned up?” Tis truly a foolish woman, who offers a child a choice. This tenacious adherence to ‘done’ rather than ‘finish’ is so tedious. How can I take them all back home to England in December, if they insist on bellowing “I’m done” every five minutes? It will give my mother a fit of the vapours!



“No! I wan you to look at my done.”
“?” I am unaware what ‘done’ might look like. “Er which…..what ‘done’ do you want me to look at?”
“Dis done.”
“Which done?”
“Dis done on my tum…yes, on my tum. It be rhyme like dat.”

I look at his tummy. He extends it to it’s maximum capacity, no doubt to aid my bifocaled vision.

“See?” I look. I see brown paint on pallid skin.
“Um….?”
“It be done. I be mix.”
“What did you mix?”
“I mix dah red and dah blue and dah yellow and I bin done make done!”
“That’s called brown dear, not done.”
“Nooo. Not brown. Brown be dark like chocolate. Dis be light brown, dah tan or dah done which it dah light.”



“Oooo you mean ‘dun’!”
“Dun?”
“Yes, you’re absolutely right, it is dun coloured.”

I hear his father stumble in from the garage and turn to advise him of the turn in his son’s tertiary colour wheel, but he trips over something in the utility room and curses, “damn! I stepped on a lance!” My immediate thought, is the vision of several gallons of blood. My knight in shining armour has just fallen off his horse and impaled himself.

But of course I so rarely get these things right.

Whimsical investment

Parents of autistic children are vulnerable both to the hype of those who promote snake oil as a cure, as well as the demands of the children themselves. Some parents of autistic children have more money than sense, or certainly little sense, when it comes to money. In their favour, parents of autistic children readily admit their shortcomings – encyclopedic knowledge of dinosaurs, [C +] time table details of Thomas and his rabble, [D-] plot graph of the powers of Pokemon, [E for effort] Yukio qualities, [F--] just let me die now! This is how parental bias sneaks into the equation.

I grind the sleepy sand out of my eyes as I shuffle around the kitchen in my black fluff muffs, willing the life blood to flow back to my toes that I can avoid gangrene and digit removal. A small, bouncy fast moving person comes into focus. “What it is?’
“What is what dear?”
“What is what be rhyme?”
“Er what word do you want to rhyme?”
“Chocolate.” I knew that! I really knew that, or I could have guessed it. I think. What rhymes with chocolate? Anything that ends with ‘ate’ with two syllables before it.
“Perambulate!”
“Dat is not a word!” he bellows. Suddenly I am back in school and still failing.
“Dat is four! I am need two!”
“Well it's not four syllables, that's because your enunciation is ……..” I eliminate ‘crap’ and substitute ‘in need of assistance.’ “Chocolate has three syllables. Choc o late, just like Nonna says. It’s not ‘choc’ ‘late,’ two syllables as Americans say, nor ‘choc’ ‘lit’ as Brits say. Both of them are wrong. Nonnna is write, I mean right. Nonna knows best.”

He pouts, doubtful but drawn by the inevitable truth of a superlative and peerless grandmother.

“Nonna say it be three?’
“She does.” I lie without thought, as Nonna and I have never discussed syllables in detail.
“What it is?”
“What is what?” Are we really still here?
“Perambulate?”
“Ah well, 'ambulate' comes from the Latin, which means walk or movement forward and ‘per’ means before……. so you, push the ‘thing’ before you as you walk and the ‘thing’ is the pram which is…….like a pushchair….um...a stroller.” Beam me up now. I know not what I do or say and Latin is old and mold and I am being dumbfounded by a six year old!
“You are being dah dumbass!” I know! Don’t you think I already know that? How come your tiny brain is so huge? Why do you care? Do not taunt me with your speech delay! What I wouldn’t do with a mere fraction of your brain capacity!
“Where it is?” Please, please, please!
“Where is what dear?”
“Fing?”
“Fing? Er thing? What thing?”
“Dah fing dat you said in dah perambulate?”
“Um?” He summarizes for me, so I can get back on track, pick up the thread and hang myself with it.
“You have dah ‘per,’ you have dah ‘ambulate’ but you have lost dah ‘fing’” I have lost more than a thing dear. I decide that surrender is my best option, that or deflection, “hang on a minute, I have something to show you!”


I run off to the spare room to retrieve the Rhyming Dictionary that I bought as a present for a pal. I kept it because I discovered that she already had several vastly superior volumes. My paltry offering was an embarrassment. I dash back.

“Do you know what this is lovey?” He reads the title. He knows the first word but not the second. Is it a good idea for a child such as him, to become familiar with the second word? I hesitate. I am already out of my depth, maybe I am giving him the opportunity to drown me? Do I give him the Keys to the Kingdom or open Pandora’s Box?



I glance at the clock, 6:03 a.m. It is far too early in the morning for me to be able to calculate the odds. I quickly run cons through my mind. He will be frustrated and overwhelmed. There will be a slew of negatives associated with failure. He’ll kick it, rip it, chuck it or bite it. There will be snot and tears and meltdowns. We will start a new day under a big black thundercloud that will haunt us all day.

This perspective has to be balanced against the potential for……fun? It will not be fun, it will be a disaster, a disaster that I will have engineered myself. Take any 100 opportunities for fun and 99% of them are sure to induce misery due to faulty miscalculation by the parent.

I must acknowledge that I am habituated to the negative. No matter how many times I push the enveloppe it always results in a stamp. I need to get up at 5 so I can be awake at 6 and stop these knee jerk reactions. I need to function as an adult and make better calculated positive decisions. Spontaneity has died as I am too scared to deal with the fall out, I merely respond. I am the B actor. I wait for the star to initiate and follow my best guess. Even my best guess is usually several miles off from the true target.

He is nearly 7. How would the average 7 year old react? Is there an average 7 year old on the planet?

I err on the side of self help, keep the faith and begin to explain. His eyes widen. Hyperlexia is often the heightened ability to read words. It does not always carry the ability to understand them.


The print is tiny, but that could be the dusty bifocals. The average book that he’s familiar with, is printed in font size 24, this on the other hand, is minute. I watch his sliver of filthy fingernail guide his eyes along the list, his feeble lip closure sounds out the syllables. “What it is?”
“What is what dear?”
“What be dah rhyme wiv ‘gold’?” All my children shout out the usual offerings. Collectively we cover most of the bases.

“Let’s check. Let’s see what the dictionary says?” I cross reference and leaf through the delicate pages. I read them all out to him. He is especially taken with ‘twofold, threefold, fourfold,’ and their ilk, but I’m inclined to favour the release of the stranglehold and relinquish my toehold of control.


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Clarity of Speech

Small bodies are draped around my house during the Spring break after another busy night. Since their bodies are covered in clothes and we have achieved ‘dressed’ status, I am more than satisfied with progress under the circumstances. Although it’s difficult to pin point when ‘night time’ ended and ‘day’ started, I would guesstimate that it has taken us three hours to eat breakfast and dress. I contemplate the day ahead and our free social skills training. [translation = playdates] It is possible to transform the house into an image of respectability in a few intervening minutes, to present an acceptable front? I debate whether I can hold myself out as a responsible adult supervisor of a play date when I am semi comotose? My mind percolates upon the subject of liability waivers? Whether or not a child's signature is valid without parental input, when junior starts up.
“Mom! Mom! Mom!” he squalks.
“Yes! Yes! Yes!” I mimic, in the hope that he will be able to tune into the concept of volume control.
“Don copy me!” he commands with indignation. “Dat iz not a nice fing to be doing to a lickle guy like me.”
“You are right. Now what did you want to ask me?”
“Oh er, yes, um, we are not turtles?”
“You’re right, we are not turtles.”
“No. Er are we not turtles?”
“No, we are not turtles.” I re-run that line trying to work out where my double negatives are taking me. It seems like an exercise in existentialism to my tiny brain capacity.
“No I am not sayin dat. I am sayin, I am askin, what it is ‘not turtles.’?”
He has gone to all this trouble to clarify his enquiry verbally, with a smidge of eye contact, a bucket load of patience and what do I have to offer in return to positively reinforce this effort?
“Um, well, er….”
My daughter helps me, “you shouldn’t be coz yur human, but yes, you are nocturnal.”

Just typical! Nothing to do with a "speech delay," everything to do with an American accent. There is a ‘C’ in nocturnal! It is the third letter! Why don’t you pronounce it? Say it out loud. I dare you! Again. Louder. Faster.

I'm lucky to have a local to "translate."

Prosody is contagious?

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[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.]

How do I love thee?

Junior is going through a negative phase. It runs along the lines of ‘Nobody loves me /I have no friends/ everybody hates me.’ Our current campaign is to turn this around, accentuate the positive and eliminate this kind of spiral thought process. The tendency of many autistic children to drift towards depression is marked in statistical analysis.

I leave spouse in charge and dash to the shower. I’m not able to hear much because of the water, but as I stand on the toweling mat to dry myself off, I can hear voices outside in the hall: ‘d’ya luf me?’ Is that what he asked? Bless his little fragile ego! His speech delay makes him sound as if he has a mouth full of marbles. He is difficult to understand unless you’re familiar with his tone and phraseology, which I am.

I can also make out his sister's voice, mumbling something or other. His phrase is repeated at ten second intervals as I pull on socks and a cardi. I don’t bother to brush my hair, just run my fingers through as I’m in a hurry. If I speed up I might just be in time to prompt her to make an appropriate verbal response, something to help repel his inner voice of doubt.

She is of such a kindly disposition towards her brothers, that I’m confident that she’ll manage it on her own. Nonetheless I’d like to witness it. I poke the corner of the towel in my ear to dislodge the water and clarify my auditory channels.
I step towards the door and swing it open. I see her sitting astride his back make making small growling noises. Her little brother’s words are suddenly clearer, easier to distinguish = ‘geroff me!’ he squalks.