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."

If you've struggled this far to load this page, then you may wish to try my new duplicate blog next time, over "here."

Early Days 4 - Autism and data collection [translation - ammunition]

I have a tendency to exaggerate. I think it's the Irish genes, or maybe just our version of the Irish genes. Everything is 'the most, the best, the superlative,' or it is 'the pits, most dire and worst,' with not a lot of grey in between. As a result of this trait, when we first sought out expert help, I could tell that my version of events was open to question. Because you're involved in the situation, it is difficult to be objective, especially since quite often, you are also that catalyst that sparks the meltdown in the first place.

I would sit in the experts office, with my two angelic boys on the floor, whilst I moaned [in code] about the meltdowns. They provided me with helpful strategies, all of which I had already tried and failed at abysmally. I could tell that my status as subjective, over protective and involved mum, was part of the problem. They just didn't really take me seriously, as evidenced and reinforced by my perfect, if disengaged children.

Any text book that you read on the subject of autism [especially ABA ones] advises that if you want to bring about 'improvements' then first of all you need a 'baseline' from which to measure change. With this in mind, I laboured long and hard to try and come up with a workable system. I went for the lowest common denominator. I would pick a random hour of the day, every day, and count the number of meltdowns that they had, as well as the intensity, duration and recovery time. One form, one pencil and a few to boxes to tick. [translation = check] How hard could it be?

Well, much harder than I thought, of course, but over the following six weeks, I accumulated 'data.' It may not have been 'hard' data and was subject to a mass of flaws, but it was good enough for my purposes. I was not exaggerating, ergo my sanity was still within my grasp.

With my slips of paper in my hot little hand, I was then able to tackle the ABA guru. His initial scepticism dispersed. He had more tactics, as I knew he would, some old ones that were worth trying again, as well as a couple of new ones that I hadn't come across before.

The meltdown crisis phase wasn't over, but I felt more in control knowing that 'things could only get better,' as well as being in possession of another couple of techniques. In times of trouble, we do tend to percolate back to this base point, when the words disappear and frustrations reach their zenith, but there are always new tactics coming along, they are always growing and I know that we're on the up.

ABA and aversions

A few years back junior had a strong aversion to water. This was odd for someone who also had a compulsion to be squeaky clean. I might describe it as an aversion to being wet, but that would not be accurate. If a droplet of water fell on his clothing, he would not be ‘wet,’ but he would be naked in a nano second. Taking your clothes off regardless of your whereabouts, might be mildly amusing if you are very small, a toddler say. It is less funny, depending upon which continent you are on, when you are bigger, in a public forum and in a cold season.

When we moved to this house, junior had yet to be born. The one thing I wanted in a home was a big kitchen. The one thing I did not want was a swimming pool. At home only millionaires and movie stars have pools. My hormone filled, pregnant brain knew that a pool was a bad idea. How would I clean it? What if it leaked? What if somebody drowned?

Two or three summers ago we discovered that the pool was ‘safe’ for junior. He wouldn’t go near it. This was consistent with his aversion to water. By chance, midway into the season, he discovered that when the water reached 98 degrees, the pool was fun. It was not the water itself, but the temperature that he objected to. This was confirmed when September came and the temperature dipped below the critical 98 degrees. That was it, he reverted to type and nothing would persuade him to put so much as a toe in it. During this time, swimming sessions were combined with a shower to clean off on completion. Dressing thereafter was pretty optional. All my children were extremely clean for several months.
At the end of the first week of September, it occurred to me, that junior hadn’t been near a shower or bath for 7 days. He would not use the shower in the house and had forgotten that once upon a time, he enjoyed baths. By the end of the second week I was getting worried. He was getting smelly. I asked spouse to help, that perhaps they could have a shower together, as slippery small people require super human strength. It was not a successful exercise for anyone. After the ‘shower’ he did have a few damp bits but this merely served to redistribute the dirt and add a considerable quantity of snot to his person as he howled in rage and frustration.
At that time he was only at ‘school’ for two and a half hours a day, which gave me lots of time to strategize. We adopted a different approach. A very, very slow approach. This might be more accurately described as ‘de-sensitization.’ He was still ‘Thomas’ obsessed at the time. We made the unprecedented step of playing with Thomas upstairs, on the landing for 20 minute periods. Gradually we edged closer to the bathroom. Once in the bathroom at the furthest distance from the bath itself, we tip toed closer. When the other’s were bathing, we would play with Thomas close by on the carpet, which meant that he observed the ‘fun’ they were having, and was occasionally splashed. Day after day, week after week.
We played Thomas in the empty bath, touched the taps, rolled the wheels along the side. We had other preferred activities in the bath; snacks, reading and drawing with markers. It took forever. Each progressive step caused meltdowns and genuine angst for everyone. He was so filthy you could have chipped off a crust of dirt with a chisel. By Christmas, we got there, toe by toe, inch by inch.

What did I learn from this experience? That I left it too long to start. I should have recognized the problem immediately, not let things lag for a week or two hoping that it would go away. My lack of action merely made the aversion become truly entrenched. Even now I need to remind myself that even though ‘water’ is part of the problem, it is coupled with the ‘temperature problem.’ I know that they do not have a ‘will of iron,’ instead they have an ‘aversion.’

Aversions cannot be tricked, they are real. I also know that whilst we are in steady state as far as bathing is concerned at the moment, that the whole exercise is likely to be repeated, when we next experience change, although hopefully the transition will be swifter. That’s why it’s really called ABA; from A to B, and then back to A again six months later, or sooner if you’re very unlucky or careless like me.

Holiday Survival

OED Online Word of the Day
survival SECOND EDITION 1989
1. a. The continuing to live after some event (spec. of the soul after death); remaining alive, living on.

I am told that goldfish, the golden orange pet kind, have short memories. One circuit of the bowl and the ‘seascape’ is all new again.
One thing about holidays if you have autistic children, is that it is no holiday for the parents. If the parents permit the days to become holidays, either for their own benefit or that of their children, you can pretty quickly find that they regress a few months.

It is during dinner of spaghetti, meat balls, Marina sauce with a sprinkling of Parmesan that I remember, that in theory Junior ‘eats’ pasta. I look at him troughing down a bowlful of Goldfish. How could I have forgotten that he mastered grains of rice and blobs of pasta some months back? How can they have already slipped out of his repetoire when they were only there a few weeks ago? Seven months to acquire two new foods and a blink of an eye to lose them again.

The following day I determine to reintroduce pasta. At lunch I present him with three pasta shapes, tiny goldfish shapes at room temperature. Spouse follows the screamer as he hurtles upstairs at full volume, “no, no, no, no new food, it is dah holidays, no new food.” I can hear spouse trying to mollify him, remind him that ‘pasta’ is not a new food but an old one, but he’ll have none of it.
We go back to first principals. [Ref 1] Firstly, he has to look at the item of food. This means that his eyes have to be open, not screwed up. The ceiling doesn’t count, nor two inches to the left of the bowl that holds the food. Once your eyes at least glance at the food, you have to describe it in detail. ‘Yucky’ is not sufficiently descriptive, even if you have a speech delay.

The new food, is presented five times a day, at three meal times and two snacks. It doesn’t have to be eaten, it just has to stay on the plate. [translation = exposure] Hurling it, with or without the plate, across the room, doesn’t count.
We move swiftly on to stage two – sniff the food. Blowing your nose in the food’s general direction doesn’t count.


Next we touch the food, with a less preferred [translation = less sensitive finger tip] finger. Elbows are banned as they generally have insufficient nerve endings to have any impact on the sensory system. It is o.k. to wipe the contaminated finger tip on as many paper napkins and serviettes as may prove necessary. Washing your entire body, is off limits. As a precautionary measure, clothes are compulsory.
Next we attempt licking. This is usually a louder stage of the treatment. Ear plugs may be worn. Wash cloths for the cleansing of the tongue, should have been prepared in advance. So far, so good. We move into the final phase. The new food must go into the mouth whilst an adult counts to five. [slowly] In an ideal world the ‘eater’ should attempt to move the food item around in the mouth, although masticating is optional. An open mouth with a protruding tongue doesn’t count. On the count of five, the spit bowl is ready for expulsion.

Fortunately this 27 minute operation only need be repeated two further times. Luckily, junior prefers his food at room temperature.
Moral – use your foods or you’ll lose them.
[ref 1] Just Take a Bite – apologies to Lori Emsberger Ph.D the writer

Plan A

Sometimes people get up in the morning and find that some part of their anatomy is failing to function as it should do. Sometimes the part in question may be the legs. For some unaccountable reason they’re not working. This may be due to the party in question merely having got out of the wrong side of the bed.



This can be very tiresome for the parent and quite obviously for the child also. There are number of possible techniques available to the parent to overcome this difficulty. The first technique is to retreat to the bed room, lock the door and climb back into bed. This presupposes you are able to ignore the howling that comes under the crack of the door. If this is not a viable option for the parent, however tempting, then other strategies may come into play. The dish cloth bandages may assist depending upon which child is suffering from this syndrome.



As a general rule, junior members do not respond well to nappy pins, [translation = diaper pins] so be assured that this will probably worsen an already bad position. Alternatively you can use the psychological approach ‘You can decide to have a grumpy day, and be sad all day, or you can decide to have a good day and be happy all day?

Your choice.” It is generally a good idea to start off with this in any case, in the hope that the meaning of the words may percolate through, given time.

At this juncture, it is in your own best interests to acknowledge that your plans for the next hour and fifteen minutes for the child before he goes to school, must be abandoned. You are now on plan B. If for some reason you have failed to formulate a plan B, then it would be a jolly good idea to come up with one quickly, since there is a high probability that failure so to do, will have you hurtling through the alphabet faster than you are able to keep up.

Sometimes it may be difficult to discern the exact nature of the problem. The legs may be ‘wonky’ or perhaps ‘wobbly’ but since these descriptions shed no light upon the source of the issue, the parent may still be struggling to offer assistance. Plans to work on the gross motor skills must be canceled. The possibility of using fine motor skills in a seated position to obviate the need for functioning legs, is optimistic. Generally speaking wobbly legs may be an indicator that the rest of the body is likely to rebel also, if challenged.


It is tempting to abandon B and opt for plan C, where the screaming child is placed in a locked sound proof box, preferably until the screaming stage of development has passed, regardless of the number of months that this might take.


I lift the non functioning legs together with their owner to the sofa. I reach for the first one on the stack of Thomas books and begin to read.