Global Warming – Cold in California

cold in california

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Fully Present by Susan L. Smalley, PhD and Diana Winston

The Science, Art and Practice of Mindfulness.

I began reading this book initially to help my children but as it’s turned out it was also quite helpful to me too.  For the moment I don’t really have the time to squeeze meditation into my current life style, but it’s certainly given me quite a lot of material to think about and lots of tips to use with the children to help them move less painfully into their teenage years.

The book is an easy read and peppered with instances of unhelpful thought processes and examples of how to alter them.  I imagine that many parents of autistic children have already mastered many of these techniques but around here we needed a refresher course on how to tackle negativity and defeatism.  In the high octane world of autism and Alzheimer’s I need all the tricks and tips I can get.  When I read the ordinary, everyday kinds of negative concerns of other people, I found it quite reassuring, but I expect that’s just a spectrum thing.

To give you a flavor of the book, the authors retell a story which I also found here

Two Wolves

An old Cherokee told his grandson that a battle that goes on inside each us.
The battle is between two ‘wolves’.
One ‘wolf’ is Evil. It has anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.
The other ‘wolf’ is Good. It has joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith.”

The grandson thought about it for a minute and then asked his grandfather: “Which wolf wins?”

The old Cherokee simply replied, “The one you feed.”

Everybody seems to have stressful lives these days and many of the mind strategies should help us all keep a bit more grounded.  In many ways it reminded me of a catechism although obviously more modern and secular.  Maybe mindfulness, emotional intelligence and spirituality have become the new religion.

As the authors quote Henry James:-

“Three things in human life are important.  The first is to be kind.  The second is to be kind.  And the third is to be kind.”

And you can buy it at Amazon and elsewhere.

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Handy hint – the power of touch [the nudge]

Inferences are a stumbling block for many children and some autistic ones. These difficulties crop up in both language acquisition and in practical day to day life. For instance, on a cold day I might hold and open a jacket for one of my children. The visual cue of the jacket as well as the ambient cool temperature, just before school, may prompt many children into the ‘correct’ response of putting on additional clothing. However, that is not the case around here. Many parents use additional scaffolding to help their children navigate many of these hic-cups, such as verbal cues and or PEC’s.

All too frequently, in my limited experience, parents such as myself, miss an obvious step, skip ahead of ourselves or fail to note the obvious. Now although my long term memory isn’t as good as many, there is one thing about my youthful days that I can still recall. It was a morning ritual. My mother would crouch down to help me put on my shoes. She would say something like “well put your foot in it then!” I would look down at the top of her head. I could not see my feet. I could not see my shoes. My toes would wiggle about in search for the invisible shoe. My mother found it very frustrating. I think I also found it frustrating but probably more confusing than anything else. Because of this experience I make sure that when I help my own children with their shoes, that they have a clear view of both their feet and their shoes, although they generally sit on the ground. Standing on one leg is generally an advanced skill for many children.

One of the main differences between my experience and my children’s is that I was highly motivated to please my mother, to be a good girl, whereas this, until fairly recently, has not been a motivating force for the boys. Dressing, is not a high priority for them, they are indifferent. In addition, shoes are positively hateful, aversive. The combined effect is indeed a challenge.

If you need any hints on how to make shoes more fun, then I have a list as long as your arm, however these days, they are much more co-operative, so I am able to skip the step of hanging their shoes on my ears. Nonetheless, the visual and other prompts often fall flat. There is still a glitch in the executive function. It may be helpful to think of this as inertia:- everything is set up in place, ready and willing, but they need another little nudge to get the ball rolling in the right direction and overcome ‘stand still.’

So there I am on the floor, in front of my sitting child with the right shoe in front the correct foot. I say the right words in an aurally attention grabbing manner and yet no movement is forthcoming. It is easy to lose it completely at this moment, having already prompted, cued and encouraged every teeny tiny step of a morning routine for over an hour, times two. However, for my boys at least, I find that a gentle tap on the back of the calf, nudges the leg into that first movement. That’s all it takes. It’s like kicking away the brakes and away we go.

I don’t know where your child is on the spectrum. However, it may be that you can avoid the many “mistakes” that I made. One of my “mistakes” was my efficiency. I deemed my children incapable of anything. Teaching basic skills was way too time consuming and my attempts caused no end of tantrums. Therefore it was quicker for me to do everything for them, and I mean everything. As a result they remained helpless for far longer than they should have done. If you find yourself similarly situated, then maybe some small but significant and manageable lesson could begin. It is challenging to know exactly where to start with children who are unable to dress, toilet or eat by themselves.

It may be easiest to begin with something that they can already do. This may take a change in “perspective.” For example, the one thing that my children did quite marvelously was to remove all their clothing, frequently. I viewed this habit as a highly frustrating negative, especially since they were completely unable to dress themselves. I found it infinitely ironic. It took a long time to redress, each of them, many, many, many times a day. In fact to be quite honest, usually towards the end of the day I would simply give up, exhausted, hopeless, helpless and “useless.”

Then I learned about tactile defensiveness, just a little bit, just enough to give me a clue, a very tiny clue.

It was one small part to tackle. If they were without clothes then their bodies were available for contact and sensory diets came into our lives. Shortly after that the reality of ‘generalization of skills’ also made it’s impact. They learned, gradually, to enjoy sand play and other more obscure pastimes. One obscure pastime was a huge box filled with garbanzo beans, to waist height. Body painting, shaving cream, chocolate spreading and no end of different textures to explore, as we tried to desensitize them. There was ample opportunity, due to a lack of clothing. It took a long time and even sand play became fun, but it was only fun at home. It was not fun at day care, nor the beach, nor the park, because generalization also has to be taught.

I made many, many mistakes as I learned, because one child was a sensory seeker and the other was hell bent on avoidance. I learned brushing skills, but I am still very bad at it.

As usual I digress.

As I write, I am mindful of the fact that this will never reach those whom I would most wish to reach. Those people do not blog. They have no time to blog as they are far too busy doing what needs to be done, alone, just like I used to be. If they’re lucky they may have a few friends, but those friendships have dwindled in number and thinned in frequency. But in conclusion I would like to say that no matter how difficult some days can be, better and brighter days become more frequent, hopefully for all of us.

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Feed the Beast


'When in doubt,… panic!'

This idiom is a local one, coined by my Dad.

The words are well lodged in my brain, down deep and entrenched. The White Rabbit from Alice in Wonderland is my twin. When you see a woman running around in circles, flapping her hands and repeating 'oh dear me,' that in fact would be me, or rather it would be, if I had allowed the idiom to rule my response. Instead I ignore it, stomp on it and resolve to vanquish it forever.

I haven’t always been a nervous type, despite this early introduction to the concept. Nor would I describe myself with that delightful term ‘laid back.’ I’m somewhere in the middle, or at least I used to be, until I found I was surrounded by children and outnumbered.

I tell you this, because it becomes clear to me, that whilst I may or may not be the source of my son's OCD tendencies, I should nonetheless, have the power to help him.

I receive sage advice from other people in the trenches regarding OCD. I remind myself that this is familiar territory. The difference is just that this is a different version from the one I'm used to. I’m used to a three or four year old’s version. That version was his little brother. I need to dig up and brush off those strategies to apply them to his older brother.

In the meantime, I resolve that whilst I may not be able to help him immediately, I can work on my own attitude.

During the course of the average day I am 25% annoyed, 25% irritated, 10% cross, 10% frustrated, 10% dithering, 9% grumpy, 5% confused, 5% switched off, and 1% falling about with hysterical laughter. This little glimmer, lights up the whole day and makes the other percentages dissolve. I believe this to be a fairly typical, moaning Minnie, British type.

That said, I have also noticed that as we simmer, bubble and boil during the average day, it's like existing in a high octane tank. Any stray spark is enough to ignite the whole caboodle. They are so volatile. What triggers a meltdown this minute may be of no consequence on a different day or a different time. As a result I am hypervigilant too, waiting for the shoe to drop, or rather be hurled across the room. Lets face it, shoes are torture for some people.

I spend my waking hours chanting 'om' in my brain. I string together a whole slew of lies, 'you can do this, I know you can,' 'remember to breath, this is easy,' 'concentrate, don't lose it now,' ‘try, try, try again.’

The words I say to myself are generally the same words that I say to my children, which is convenient but a little patronizing.

When that moment comes, as it so often does, instead of spontaneous combustion, I find I drift and rise into a state of balmy calm. The petty irritations and annoyances bleed away. I am almost weightless. I am left clear headed and untroubled. I can suddenly see that everything really is fine and that all is well. I becomes easy to make the right decision, to prioritize and cope with whatever it is this time.

It is a very reassuring ability to have acquired. The first time I felt this response viscerally, was when I lost one of them in a park. The family we were with, were in a state of panic, bless them. Not me, not externally. Rushing around like a headless chicken wouldn’t help. There was an emergency broadcast system, why not use it and lock the place down? It sounds so cold blooded and maybe it is? Same as when the house caught fire. What to save? Why the children of course and then start the hosepipe once I heard the fire brigade were on their way. I could list any number of ordinary domestic and family disasters over the years. What do you do if an acquaintance sits on your chest and tries to strangle you? Well yelling isn’t possible and she’s almost double your body weight. Tickle her of course.

A clear head, that’s what you need, and when you need it, there it is.

I’ve had my fair share of days of being a blubbering heap on my own kitchen floor, incapable and incompetent but when that next feather floats down, the little chip or straw tips the balance, we have no option but to cope. I don’t care if it’s adrenalin or laughter, it’s always enough to part the foggy clouds.

Now, what I need to do, is to artificially import that attitude to the other 99% of my day.

I wonder if there is a 'step by step' guide on-line? I'm sure I can find something to download.

Maybe I'll upload instead?

Easy peasy!

For a glimpse of “not coping with OCD” and “general grumpiness” you can visit “here.”

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Clash of the Titans

Sometimes, especially when they were younger, people would mistake my boys for twins. One with long legs, one with a shorter body meant that when they were sitting they seemed the same size. Like most twins or siblings, any similarities between them are of little significance. It is their differences in personality, character and disposition that singles each one of them out. If you then cover that child with a layer of autism, a patchwork quilt, [translation = homemade and of a unique variety] the result is too complex for the average nitwit, [translation = parent] to fathom.

Unfortunately for them, I am the designated nitwit of the household.

All human beings have little triggers, things that set us off, irritations and foibles. Sometimes we can identify the cause, something from the past that makes us react in a certain manner. Other times and other things we just accept, it's part of our own singular make up. We find methods of coping with these triggers such as avoidance. If you find sirens annoying, then you don't rent an apartment above the Fire Station. [translation = house] Although maybe, that is the very location to help you acclimatize and de-sensitize yourself.

My boys have lots of triggers. Each one has his own set, that differs from the other. They also collect more triggers as they get older. Old triggers seem to fade but are always lurking in the wings ready to pounce. Junior has a 'thing' about “death,” dying and all other related aspects of 'terminal,' a word that he can read, write and spell accurately. [translation = an offshoot of hyperlexia]

His brother also has a 'thing' about “death” but different triggers. For reasons too humbling to go into, his current understanding, is that death occurs after the age of 90. Although his auditory processing is good, when it comes to numbers he is often confused, mistaking 19 for 90. Any word that sounds like either of those words can also be a trigger. Initially you might not think that there are too many words that sound remotely like either. If you break down those words into their phonetic sounds and jumble them up a bit, you may be surprised at how often their variants turn up in ordinary everyday conversations. [nye tea high teen nigh T]

Both have supersonic hearing, which means that they can tune out the sound of the motors that power the freezers in the supermarket and tune into the conversation between strangers on the other side of the store. [translation = or vice versa, or from one to the other, all without warning] Because they both have poor social skills, as well as a higher social concience than most, this means that he will hone in on the distance conversation that contains '19 or 90,' seek that person out and ask “you are going to die?” If the child that asks you that question has an expression of genuine concern, this may cause unknown and undue distress to the unwitting victim.

Where does this leave us? Well it can mean that sometimes something very small can cause a fireworks display. We need to appreciate that what might be an irritating trigger when we are adults, may have a much more explosive effect on someone smaller. [translation = with more nerve endings and less self control]

My son dashes out into the garden to rescue a cat. Both he and the cat are naked because my son was just about to start dressing. [translation = had completed undressing] He's not quick enough to nab the cat who skitters back indoors. The sudden U-turn by the cat, sends my ungainly son off balance and into a heap. He hobbles back indoors distressed by his poor cat catching skills. He is unperturbed by the flap of skin on the top of his toe and the river of blood that follows him. I park him on the nearest available chair to commiserate with him about the foolishness of the feline population. I hope to distract him from the river of blood but he seems oblivious. We discuss herding cats, a subject near to my heart, whilst my hands investigate damage. His sister appears downstairs, sleepy eyed and tousled. “The school bus for the field trip is leaving at 9:10 sharp!” she advises and yawns. The '9:10' of her message, penetrates my son's psyche and sparks a negative reaction because he thinks she has said 'ninety,' “ninety? I am dying?” he screams, still obvious to his wound. The growing pile of blood stained rags and towels make her gasp. “Oh no! Are you o.k? Can I see? No!” It is her reaction that make both boys react. The real victim notices that he is leaking, “I am blood?” he enquires curiously, but bedeviled by thoughts of death. He looks in the general direction of his leg but fails to notice that he has a foot on the end of it.

At the same time I hear a “piercing 50 decibel” echo somewhere far, far away, [translation = the upstairs bathroom] followed by rapid fire footsteps. Junior appears within seconds to witness the scene, “he is blood, he is ugly, he is dead, hospital, emergency room, only 4 toes, 911…..” he talks at 90 mph, a never ending stream of words. His vast vocabulary is strung together. They all spell out the same general message of doom. When he reaches the end of his current word bank he squalks, a sound half way between a rooster and a drowning man.

Spouse appears, drowsy after three and a half hours sleep. My daughter is scared of the blood herself but recognizes that her little brother is spiraling. She soothes him with reassurance but he is impervious. When he starts to rip his hair and beat his body with his arms, spouse steps in and whisks him away from the scene.

At first glance this picture may seem a little grim, but that is only one perspective. A different view is a far more optimistic one. A few years ago we would have endured meltdowns and guessed at their cause; blood and fear, but clearly this is a much more complex matter. We are better able to understand the complexity because they are better able to express themselves verbally. As we get a better handle on the causes, we are better equipped to help them find other strategies to cope, help them practice them and help them learn.

The minutes tick by to bring us closer to 7 in the morning, an arbitrary time designated as appropriate to start the day. Another, very ordinary day.

It is at such moments that I am so grateful, that the two and a half years of the 'plaster campaign,' [translation = Band-aid] will finally pay dividends.

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