Ironing out the kinks

I swear that next time I buy a new hose to water the garden I shall purchase one that promotes itself thusly: 'guaranteed to kink all the time.' I am heartily sick of having a non-functioning sprinkler system. [translation = water garden by hand for an hour and a half very late at night or very early in the morning, with a kinky hose]

Junior stands cautiously in the door jam, not really in, but definitely not out. [translation = dislikes 'outside' with a passion] The large cardboard label from the new hose, together with it's plastic ties, lie nearby waiting to be recycled. I fight with the recalcitrant hose and ignore my son. [translation = whilst ignoring a child, let alone an autistic one, is not to be encouraged, if I attempt to llure him to adopt 'out of the house' status, I'll jinx my chances]
“What it is?”
“What is what dear?”
“Er, dah 'kink.'?”
“Ah. Very pertinent question. A 'kink' is a fold or a bend. See this lovely new hose?”
“Yes it is dah lovely red and red is being your favourite colour!” [translation = whoop de do, he knows what I like!]
“Yes, you're right again! But do you see this bit, the bent bit, that is a kink.”

He steps from side to side in agitation, much as small children do when they need to visit the bathroom.
“Kinky! Kinky! Kinky! I am liking dat word ever so much.”
“Ah yes, of course you do.” [Translation = a word with two 'k's is special]
“Why it is saying dat den?”
“Why is who saying what dear?”
“It say not.”
“What not?”
“No! Not what not, not kink!”
“Oh the label. Yes, you're right again, it does say 'no kinks, not ever, guaranteed.'”
“But you said dat dah hose is being having dah kink and dah label saying it not.”

I pause, not wishing to provoke a meltdown at the contradictory nature between advertising and real life.
“Well…….as you can see……..they lied!”
“Dey go to jail?” I sincerely hope so.
“No it's not bad enough for jail.”
“What is bad enough for jail?” Questions, questions, questions, all of which are little trip wires for the unwary, 'jail,' being just one of them. This of course, is why the Monopoly board ended up in the recycling, as well as the box, because both had a 'Go to Jail' notification, which haunted the poor child to a point of distraction. I am rapidly running out of ideas when another face appears at the door. A rescuer?
“There's a knot at the other end, that's why it's not working,” my daughter offers as a diagnoses.
“A not'?” he queries.
“No, not a 'not,' a 'knot', the 'k' kind of a knot,” she explains. I feel that I am slipping into a crossword, or is that just cross? I look from one to the other to check the invisible lines of communication. [translation = who is going to lose it first?]
“He is not a liar den,” he states boldly.
“Who is not a liar dear?”
“The hose makers. Dey say 'not kinks,' dey didn't say 'no knots.'”

Works for me. [translation = meltdown avoided, cognitive dissonance abated]

Would that things could always be so “smooth.”

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Capture and release

The comment, 'these children will never respect you,' has haunted me a while. I think of all the things that I want for all of my children. Quite a few of them begin with the letter 'R.'

There are a great many parents who have their children at the center of their tiny universe. [translation = I'm in that category too] It probably is unhealthy, but I am not qualified to address that matter. [translation = many Brits know little about health] I am reassured to know that there are a few things that I do know, that there are a few constants on the roller coaster of autism. The things that I know, that are constants, are few and far between. I know that these few constants may change at any time without warning, but I still relish the reassurance of the constants.

I hear the ruckus next door. [translation = early warning that they are awake] I roll out of bed and stagger downstairs in an effort to achieve 'awake' before they make their appearance. I know that my daughter will sleep in, because it is the weekend, but the boys are relentless.

Light on, coffee on, feed the cats.

I wait in the kitchen trying to force my brain to turn 'on.' [translation = as well as the powers of speech] Before too long I hear them emerge from their bedroom. One stomps along the corridor, irregular steps, contact with the wall several times, bumbles down the stairs. Although I can't see him from the kitchen, I know that half his body is supported by the banister, cheek to the wood, hands as guidance as his body is folded over, his superfluous legs are several steps behind, little tippy toes deep in the carpet pile. I know that when he reaches the newel post at the end, he will spin around 360 degrees by accident, before he steadies himself and renews his path towards the kitchen.

I stand there, in the centre of the kitchen as he makes the final few steps from newel post, en route to the family room. I bar the way, a large form in a brown dressing gown. I open my arms so that I am even larger, a net to ensure his capture. I am now so large that he cannot possibly miss me. He bimbles into the kitchen eyes cast down following his path. He stops dead, one step prior to collision. His eyes rove slowly up from my slippers to my face, before his head clonks into my ribcage so that I can enfold him. We do no exchange words, but I give him a few of my own anyway.

I let him go and resume my position for the next one. I hear his tippy toes machine gun down the hall. I know that the rate of his movement forward, may not necessarily be reflected by the rate of his rapping. [translation = he can 'rap' on the spot too, without moving] I know that his hands are holding something, although I don't know what it will be today. I know that since he is only just awake, that his mouth will be open. [translation = poor lip closure]

His transition from bedroom to kitchen is spectacularly speedy. He arrives clutching a box piled high, a pyramid of Pokemon. How he has managed to balance them is beyond my imagination. [translation = future conjuror or plate spinner] He whirls around 180 degrees, so that he can reverse into me for a hug and not dislodge his hold on the box. I curl my body around his for a second or two as he vibrates, sucks in a mouthful of drool and smiles. My arms unleash him and he spins away.

Like all children, they have a great deal to learn. I hope that they learn to respect themselves and others, all 'others.'

So today, I am another year older, and oh so much “wiser” as you can see demonstrated over “here.”

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Is it all a big lie?

One of the many failings of autistic people, from society's perspective, is their apparent lack of interest in people. They appear to lack many of the attributes of sociable behaviour. [translation = check out DSM IV] Part of the matter lies in some people's human nature, mine, for instance. For instance, when my children were evaluated for autism, I was not particularly surprised that they didn't know their own last names, address or telephone number. [translation = they only knew this information if they were prompted to sing it, and I don't think the 'experts' knew the right tune.] What did surprise me, was that they did not know MY first name, MY favourite colour, or MY favourite food. [translation = how outrageous!]

At the time, which seems several centuries ago, I assumed that they just couldn't find the right words, [translation = speech delay] or it was one of those touchy subjects that invoked a meltdown. [translation = triggers] The implication was, that I was off their radar, as were my personal preferences. [translation = of no interest] To have someone, an expert, explain that you do not exist in your child or children's world, is sobering.

So many clues had been available to me, such as when they had to draw their mother at school, but wouldn't. [translation = major meltdowns] I chose to see this as 'couldn't,' because I knew that holding a pencil and touching paper was abhorrent. [translation = tactile defensiveness and poor fine motor skills]

I am aware now, of the many excuses I made for my self, but at the same time, the clues had to be balanced against the other evidence, such as their ability to name every dinosaur that ever set foot on the planet. [translation = and pronounce it correctly] Their enthusiasm for their admittedly narrow interests, was all encompassing, and misleading to a dim witted parent. [translation = none required] How could I be off their radar when their constantly required me to carry them? [translation = both at the same time until the last two years] They couldn't be undemonstrative when the hugs were so often and demanded with such desperation?

The whole subject of autism was a locked box to me. [translation = steep learning curve]

I am prompted out of my reminiscing daze by my youngest autistic, speech delayed son.
“Do wimmins have wallets?” from the child who loves the letter 'w'.
“Some women do.”
“Do you have a wallet?” A personal question, directed at me, a social question.
“I do!”

Now he opens the box for me. I hereby declare that it is safe for me to drop off the planet and join the dinosaurs.

And on the subject of “lying.”

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England, my England! [one]


I find that I am so used to the political correctness of my adopted country that I completely forget that it is otherwise elsewhere. [translation = senility advances] I am reminded of what I take for granted, by visiting home. [translation = England for a fortnight]

We're on a tight schedule [translation = timetable] and visit friends for lunch. Because we are on a tight schedule, our friends also have other friends for lunch at the same time. [translation = three couples plus our children] This is a fortunate turn of events because we all know that our friends' friends, will be our friends too.

After lunch, I help my friends clear the table. The kitchen is awash with the dirties. I excuse myself for a moment and nip to the loo. [translation = restroom] The window is open as I wash my hands at the sink. [translation = ear wigging is one of my many more reprehensible habits.] I can hear my friends' friends talking on the patio outside. I idle. I listen. [translation = ear wig]…….

“Do you think his head has anything to do with it?”
“How do you mean?”
“Well it is unusually large, don't you think? You only have to look at the two of them side by side and it's obvious. He has a huge head. It’s like a medicine ball. I'm sure there was a study out about head size and other abnormalities.”
“Yes, now you come to mention it, I do remember hearing something like that too.”
“They're quite sweet though.”
“Quiet though.”
“Hmm, don't have much to say for themselves. Need to learn to speak up for themselves.”
“Do you think that's the speech delays or are they just shy?”
“Difficult to say.”
“She said they're ……..getting better or something or other.”
“Hmm, well that's a mother for you I suppose.”
“If that's better, then what do you suppose they were like before for goodness sake!”
“One hardly dares imagine.”
“There's that nice school down the road from where Frederick and Felicity live.”
“What one would that be then?”
“Oh you know. School for the deaf or something, but I think they take all disabled children.”
“Well that would be bound to help. Anything to get them to talk surely. They must be experts at helping speech, don't you think.”
“Well it's looking a gift horse in the mouth if you ask me.”
“Why does she keep banging on about occupational therapy though?”
“No idea! I mean really! They can walk. It’s not as if they’re really, properly disabled. They look perfectly normal to me!”
“Just ordinary children really. Mind you, the older one's a bit…well, er…how can I put it kindly? Er ….floppy.”
“They call that a Klutz in America. What a dreadful word!”
“Oh right! A bit of a butter fingers.”
“Hmm. The other one is so……….busy.”
“Oh yes, right. Busy. Busy as a little bee, buzzing around. The energy of the young.”
“I know.”
“She's quite a little madam.”
“The daughter.”
“I know! But parents do tend to over compensate when one, ….well two children are, er, abnormal.”
“Can't blame them really.”
“No………..I suppose not. They're not doing her any favours though, molly coddling her like that. They'll pay for it in the end, ultimately. Spare the rod and all that.”
“They'd be so much better off back here, with family support, friends and such.”
“Better to be amongst your own people.”
“Oh yes, definitely. Nothing like home when you're in trouble.”
“And are they ever in trouble!”
“Do you think they realize?”
“Must do, surely.”

………….. well we surely realize something! [translation = ain’t that the truth]

To be fair, these kinds of ‘friends’ exist in all countries. I prefer these kinds of “friends,” that Estee Klar-Wolfond over at the “Autism Acceptance Project,” but maybe that’s because they’re global.

Since bias against one’s country is reprehensible, I also speak from the other side, over “here.”

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Early days 3

After the boys had been diagnosed with autism, together with their respective speech delays, I looked forward to the commencement of ‘therapy’ in it’s many and various forms.  I went along armed with a notebook and pen, to sit in on the sessions so that I could learn what they were doing and how, so that I could reinforce everything at home.  I was also secretly hoping that I would find all their magic tricks.  I would learn what I was doing wrong. I would learn whatever it was that I should be doing and I would learn to do it better.  I would do it better than anyone else, for longer than anyone else and I would make it work.

Although I had read everything I could lay my hands on but I had the distinct feeling that I was missing something, although I couldn’t quite put my finger on what it was.

From the time of their being diagnosed to the start of therapy I had coped well, or what I considered to be ‘well’ under the circumstances.  I knew that the boys were autistic because I had done something wrong, although I wasn’t quite sure what that was either.  I had determined, if not to ‘make amends,’ at least to adopt a positive stance to our change of circumstances.  I had told the people who needed to be told.  We ‘regrouped’ at home and intensified our learning.  I put what I learned into practice in an amateur manner, confident that soon, experts would intervene to put us on the right track.

Therapy commenced, an intensive programme for both the boys, individually. I watched and waited.  There are few things as frustrating for a parent as having to watch [and pay] for 50 minutes of speech therapy where your child refuses to utter a syllable.  I waited to see what would happen, what was the magic key to force him to speak?  Sometimes I could do it at home, sometimes I couldn’t but the difference between the two, were beyond me, a mystery.  The experts would know.  They would teach me, I would learn.

After a few of these sessions where the therapist debriefs the parent on conclusion, I asked what we should be doing at home.  I was advised that homework would be very helpful.  For that week we should perhaps go to the park.  As he climbed up the ladder I should chant ‘up, up, up’ and ‘down, down, down’ on the other side.  Additionally, a Nursery Rhyme [I forget which one now] would be of great benefit.

It was one of the few times that I burst into tears in front of a professional.  The shock was profound, I was bereft.  That was it?  Did she think I had kept my son in a cardboard box under the stairs for the previous three and a half years? There were no magic tricks.

I turned away from my son so that he would not see me weep and attempted to compose myself, straighten my limp upper lip.  If I’m honest, I don’t really know what I was expecting from the experts?  I was so sure that I was missing something, that there was something else I should be doing or should stop doing, as if everybody else in the world ‘knew’ but that it was a secret that I was not party too.

I’d like to tell you that he ran to my arms for a hug, to wipe away my tears and said “I love you mum,” something uplifting, funny or tender but I can’t tell a blatant lie.

I only had to wait another four years for him to say those words.

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Damned lies and Statistics

In American, or more particularly in California, we are encouraged to nurture our inner child, to hold onto that innocence, especially if we wish to maintain our mental health. And who doesn't want to do that?

As adults, we try and remember that even the most wizened and cynical of us, can
learn from children. But does that still hold true if those children are autistic? Probably not. Not going to glean a lot of insight from those little chappies, and they are mainly chaps, depending upon which set of statistics you care to favour.

Personally, I like the one that suggests that as many as 1 in 166 children are diagnosed with autism. I love statistics because you can prove anything with them by careful manipulation. I thought that I was the only person locally, or even nationally with two autistic boys, but now that they're both at the same school, I find that other families with two. [Ref 1]

What does that mean? Well, it means that together, we three families, have six children, autistic ones, of a similar age, in one school. If there are thirty children in a class, that means that each class will have an autistic child. And why would that matter? It means that your child will be in close proximity with mine. In fact, because my boys are only 17 months apart, they could be in the same class together.

They separate twins, but the same doesn't apply to siblings, I've checked. That means that your child might sit next to mine, perhaps one either side. In fact those other autistic children, the two that are the right age, might end up in the same class too. My two and four more, because it's largely a matter of chance. Wouldn't that be super! Your child with four or six little autistic kids, all pals together in the same class. It would be even better if the class had only 20 children, although it would mess up my statistics a bit.

Your child would be a great role model for my children. Mine could copy yours, then they'd learn how to behave properly, just like yours do. Children learn more from their peers than their parents by the time they're in school, a sort of transfer of allegiance if you will. But that's fabulous for me, because you've taught your children a great set of moral values, things that mine might not understand, like non-discrimination and inclusion. You know, like the Barney song: ‘we include everyone!’ I bet your kids can sing every word perfectly. Doesn’t that warm your heart?

Don't worry, I lied when I said that our children would meet. My children are in the special ed class, separate, protected and nurtured, because it would be ghastly if they were all in together. They might be bullied. Wouldn’t that be dreadful? Mine of course, not yours.

Fancy a play date? Pick up the phone and give me a tinkle.

[Ref 1] and don’t forget ‘George and Sam,’ by Charlotte Moore, but they’re on a different continent so we won’t count them. Then there’s Luke Jackson and his siblings {Freaks, Geeks and Asperger Syndrome} but they’re on the same tiny little island, so we’ll ignore them too.

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Top 7

Taken from – Monthly progress report during December 2004

1. It is virtually impossible to 'kiss better' the inside of a small person's mouth after experimenting with unco-operative drinking straws.

2. Pretending to be a cat is delightful progress; pretending to use the cat litter falls into another category.

3. Fog is deemed ‘scary’ by the non verbal, such that driving at 5 mph becomes compulsory; we hope that the Highway Patrol are sympathetic.

4. Motor planning and co-ordination are improving; six inch red high heel shoes [size nine and a half] on a small boy should ensure that we enter the hallowed halls of the Child Protection League shortly.

5. Junior son's sensitivities [translation – tactile defensiveness] have been reduced so much that now, at the age of four, for the first time ever, he is able to pick his nose with his very own finger. Hallelujah!

6. Team leadership, co-operation, sharing and turn taking skills, in addition to comprehension. Following watching a program demonstrating how 16 people can be crammed into a British Mini car, Junior daughter demonstrates that two small boys can in fact be persuaded to squeeze into a tumble drier together. Well done Junior daughter, especially managing to shut the door.

7. It is unwise to be without your underwear, if you have poor coordination [translation = fine and gross motor skills] and a penchant for rotary egg beaters [translation = whisks] because;

a. It hurts

b. It is difficult to place a plaster [translation = band-aid] on the offending member

c. Your requests to 'kiss it better' makes my brain hurt.

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