From Anxiety to Meltdown How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively Deborah Lipsky

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Deborah Lipsky, the self dubbed Raccoon Lady, has written a must read for people like me.  People like me with children on the spectrum are apt to sit on my children’s shoulders and try to examine the insides of their heads.  It is a less than perfect arrangement.  More often than not, what with the speech delays and such, my translations are usually just my best guess with a dollop of wishful thinking.

So here, Deborah provides great insight into the thought processes and thinking patterns applicable to many people on the spectrum.  Her perspective may not be unique, in that there are lots of other autistic people with similar viewpoints, but the trouble is that not enough of them have written a book about it to enlighten us.  So here is the opportunity.

 

I particularly warm to her distinction between a meltdown and a tantrum, but that is probably because I agree with her.  You may well think otherwise, as you are entitled to, once you have read the book.

 

Her insights, tips and approach should prove invaluable to many, but for me, I was particularly interested to read about the interplay between anxiety, OCD, stress and how these elements can affect someone in their adult life.  Her account provides ample evidence about the importance of intervention early in life, to provide our children with as many coping mechanisms as possible, as well as the need to teach and practice flexible thinking.

 

I was delighted to read about Deborah’s challenging and fulfilling life, which I’m sure will prove inspirational to both parents and autistic children.  It would be far too sweeping to say, ‘Nothing holds you back except the limits imposed by yourself,’ but the impulse to self-censure is a commonplace part of the human condition.

p.s. lastly, I would like to add a request, namely, that a sequel might look at another black and white issue:  depression, autism and the mire of inertia.  How can parents intervene effectively?

 

Available from JKP.

 

And you can visit Deborah Lipsky here.

 

P.s.  Added later – thanks to Trish for this link where you can hear and see Deborah lecture where you can get a flavor of her wit and wisdom.


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Collateral Damage

I had been mentally preparing myself to deal with the fall out of the death of Jasper the cat with three small children. On-line research and half a dozen well chosen story books from the library were my talismen. This would be a learning opportunity, a chance to grasp at maturity and the meaning of life. I was dreading it. I didn't know what to expect but I suspected something bad. It is daunting as a parent to know that whatever you are likely to anticipate is most likely to be wrong.

I have always been the sort of person who considers all possible eventualities from the most dire to the slightly off-puting. My options are ranked. I expect the worse, working on the theory that anything less than the 'worst,' will be a bonus. With the current generation of children, such mental preparations do not apply.
My daughter adopted the consumer capitalist approach to death; 'that's so sad! Can I choose the next one, can it be a white one?'

Junior, was not enamoured with the cat. He had never been closer than a three foot radial distance from Jasper and that incident was by mistake. Since Jasper belonged in the category of 'wild beast with teeth and claws,' he appeared slightly relieved that the 'threat' had disappeared and showed no interest in a replacement.
Senior son, or rather, 'devoted pal, confident and cat adorer extraordinaire,' was sad. Once again I had my neighbour to thank. A crusty, elderly man with a voice like a foghorn and an accent thicker than mud, he announced 'Seurr hez in cat heaven huh!?' His pronouncement was taken as an immutable fact, not queried or questioned but accepted. 'Cat heaven' was his new mantra. He volunteered this information to random humans that crossed his path and was probably the first phase of volunteering verbal information without a prompt, that we experienced.

A new status quo had emerged without any engineering on my part. There was no egg shell path to tip toe over, peace and tranquility had been restored. Because of this swift and bump free transition,I was not prepared for what followed.

We bumbled through our usual bedtime routine the second night after the accident in the park. [see previous post] 40 minutes passed peacefully and slumbering commenced. I busied myself with the usual night time preparations downstairs in the kitchen. Just before nine, a scream of the 'axe murderer on the loose' variety seared my brain. I flew to his bedroom where all the lights were on. My three year old was sitting on his brother's chest and shaking him violently by the shoulders; 'DEAD! DEAD! DEAD! HE IS DEAD!”

I checked. He wasn't, he is merely the heaviest sleeper on the planet. His eye lids lifted to reveal floating unfocused eye balls, because he was deeply asleep. The hypervigilant one was hysterical, frantic and manic. His teeth were bared as he made animal noises and wrenched at fistfuls of his own hair, spittle spattering. He rocked back and forth on his brother's chest as I tried to manhandle him into a better position.

We spent a troubled night.

The next day I started canvassing the experts, 'what was to be done?' He saw death, dying and danger everywhere. He was paralysed. To eat, meant to be poisoned and to die. To walk meant falling and sudden death. To sleep……..well, not so much Morpheus but Thanatos. He would lie down for nano seconds before springing bolt upright terrified and waiting. His hypervigilance was on a hair trigger. Night after night his brother would fall asleep. Night after night I would have a screaming banish hammering on the sleeping chest.

At that time, they were approximately three and four and a half. Neither had ever appeared to be particularly interested in the other. Neither child 'played,' and certainly not with each other. The non verbal did not speak, or course, to the non verbal.

Matters took a turn for the worse when sleep deprivation stepped up the pace. Senior started to doze off at random times of the day inducing panic in the little one.
No amount of reassurance, talk therapy, comfort or logic had any impact. The library shelf on the subject had nothing more to offer, as we had read each and every one of them. My own reading suggested that 'cognitive psychology' might hold the key, but I was unable to find any reference to patients who were under the age of about 7.
My pals reassured me; 'it's a phase / it will pass / give it time.' I wanted to believe them, but I also knew my son. The word 'dogged' comes to mind, 'will of iron' comes a close second, but I knew that his mind worked along different pathways that I didn't fully understand. Each additional day made the obsession become more deep seated, working it's way into his neural pathways, becoming set it stone.
We tried massage before bed [and inbetween whiles], as well as the usual 'brushing techniques,' joint compression, deep pressure, visual imagining CDs, warm baths and distractions, stories for hours, warm milk in bed and to hell with dental hygiene, social stories, [Carol Gray] but all to no avail.

I listened to advice from experienced experts and amateurs. I carefully weighed their words, considered the pros and cons and then tried it anyway. Nothing worked.
After three weeks, desperation was setting in. I had two boys with haggard pale faces and dark ringed eyes. I had an edgy jumpy daughter and the parents weren't doing much better either.

I thought back to being small and powerless. I thought about the things that had upset me as a child. Most of the incidents of my own childhood were minor and of no consequence in the great scheme of things, but fortunately if you have a trouble free childhood, the tiny ordinary matters are of a greater magnitude, it's all a question of your starting point. My woes were of an ordinary garden variety that cause 'stress'; you can't do that because you're a girl / stupid / too small. Nothing that dire. But my reaction, then as now, is 'rat's to that!' I believe the modern psychobabble term for my reaction would be 'empowerrment,' I chose to act. With some people if you taunt them, they back down, but I preferred to prove them wrong.

The only thing I could think of in this situation was the reality – I believe someone is dying and I don't want this to happen. Therefore the solution to my mind, was to prevent the death. The way to prevent the death was to learn CPR. I would point out that what know about medical stuff, could be written on the back of a postage stamp, but luckily the internet gave me the basics. One social story later and I was ready to do battle with the deamons. The step by step approach of checking the pulse and so on, meant action. We started by resuscitating cuddly toys [translation = plush toys]. Kinesthetic learners [translation = learn by making your body 'go through the motions'] was where we began. He observed me and then branched out into trying it himself. We practiced on spouse and much later on his sister, after careful priming. By the end of that one day, we were on the road to 'recovery.'

This is not a 'how clever am I!' posting, this is a 'listen to your own instincts' posting. That's not to say that help from any quarter should be dismissed, only that as a parent, there is the chance that you might already have the 'answer' if you can make a match.

It is also a illustrative warning to me, that there are few people as desperate, vulnerable and exploitable, as the parent of an autistic child. If someone had suggested snake oil, I would probably have given it a go.

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