Doom gloom and despondency

When I received the first evaluation of my son, I was a little gloomy. I remember three things distinctly. Firstly, it started off well enough with something like 'he is a good looking happy faced child……' ahhh……but then went downhill at a rapid pace. What followed was a laundry list of deficits. Truth be told, it doesn't matter what euphemisms they use, deficits equates to 'bits to fix.' That was the second bit. The third bit was the value laden phrase 'window of opportunity.' I was left with the distinct impression that in our case, the boat had left the harbour, sunk and was now moldering away as an old abandoned shipwreck, but then some of us are terminal pessimists.   To read more click “here.”


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Mother's Intuition – Beam me up Scottie!

I hurtle around the kitchen preparing breakfast and starting laundry. I remind myself that we do not 'start' laundry, as laundry is always there, a feature of human existence, never finished. I spill a little Borax by accident, my newest, latest and bestest solution to laundry and hard water, but I'm not a 'believer' yet. The science of laundry is beyond me, as is the science of IQ tests. I am glad that IQ tests are unsatisfactory when it comes to autistic children. I swig down a mug of cold Green tea, which is supposed to be good for me, my 'medicine,' before the caffeine fix.

I pause as light creeps into the kitchen and nip to the window, open it a crack to let in chill air. The road is deserted, I am completely alone. I remember clever experts and acknowledge that many parents may not be objective about their childrens' conditions. When they told me that 'statistically, there is a higher incidence of suicide,' and that medication is a must, it is hard to marry that perspective, with the image of those innocent, blemish free infants. I hear the words but want to cover my children's ears, because parents have inadequate protection mechanisms.

I sip thick coffee and breathe in the heady scent of Jasmine and Hyacinths, because I am permitted to live in California. I ignore the showy Geraniums, because they were only planted for colour, they have no perfume. Crushing the leaves to release their vapour could become a part time therapy, for me, if not for them. I am glad that as non-verbal children become less so, they reveal unfamiliar neural pathways too me. I remember the expert advising me to check for mental retardation when they were older. Although I am usually careful to adhere to my demure demeanour, I'm still glad that the shock of the words stopped me from slapping him. It is hard to remain credible once you resort to fisticuffs.

Contemplation is cut short by the clumping and skittering of tippy toes at rapid speed. They arrive in a stampede without warning. Junior collapses on the floor retching, as I heave the window closed.

I hug the two vertical ones as she asks “what cha doin mom?”
“Oh just enjoying the garden dear, and waking up.”
“Is that the flowers?”
“Yes, isn't it a lovely perfume? We're so lucky to have such clement weather!”
“I like those ones best,” she points to the outrageous Geraniums.
“Oh they're no good, they don't have any perfume. That the whole purpose of a flower, to create a beautiful scent.” Junior manages an utterance in a choked tone,
“It is the stinky dat is killing my throat!”
“So they're not just to look beautiful?” she adds casually.
“Well that too I suppose, but that's their secondary purpose.”
“What dere tertiary purpose is?” splutters junior, clutching his neck. Ooo I should have anticipated that one. Why do I speak before my brain is awake?
“Er, well, their tertiary purpose is to, er, let me see……I think they're probably here to make us all happy.” Please protect me from my own feebleness.
“Dey are not making me happy!” Well of course not. Wake up! Get with the programme woman!
“I thought they were to help remove carbon dioxide from the atmosphere?” She was paying attention! I knew that! I just wasn't thinking 'science' at 5:15. “You're absolutely right. Where would we be without plants!” I ask rhetorically.
“I would be on da planet wiv no smells. I go live on Pluto even doe dat is only a lickle star now.”

Clearly my 'in' and 'tuition' need re-calibration.


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Early days 2

Whilst I fasted as a youngster at boarding school and I'm aware that there are people on the planet who choose to follow unusual diets, I didn't really think it was possible to live for weeks on a liquid diet. This is probably because I've never had reason to consider such matters prior to my present predicament after jaw surgery. Although I have very particular food preferences myself, I had my doubts about what could be the minimum number of 'foods' that would sustain existence without terminal boredom setting in. In the Western world of abundance, it's hard to think of existing on a diet of only rice or potatoes, but a considerable percentage of the world's population are in exactly that position and not by choice.

For me it emphasizes that light bulb moment when you realize that something is severely amiss. This occurred when junior was approaching three and senior was in the process of being diagnosed. [translation = a diagnoses generally takes a considerable amount of time for all the evaluations, assessments and observations to be completed prior to the written report.]

We were making our weekly trip to a restaurant in the hope of civilizing and socializing our children. I had just managed to squeeze the little one into the tiny highchair and strap him in without breaking both his legs. [translation = commercial high chairs are designed for babies, not a taller than average three year old] I started feeding him single goldfish at intervals just far enough apart to make the bagful last until we had completed our order with the server. As soon as she left, I whipped out three baby jars of sweet potatoes to feed him. Once they had been consumed, I would move on to surreptitious raisins, his third 'food.' His last ‘food,’ milk, would tide us over before we paid the bill and ran away. The four 'foods' status was established.

I fed him with a spoon because he was incapable of feeding himself. I was busy shoveling into the permanently open mouth when a father and two young boys sat next at the next table and quietly ordered their own food. Both of his boys were sitting on chairs, they chatted animatedly although I couldn't hear their conversation because of the din that my little crowd were making. As I saw the other three year old sink his teeth into a hot dog that he held between his own two little hands, it dawned on me that I was existing on a different planet to the rest of humanity.
I looked at spouse, harried and harangued. I looked at my daughter, sniveling because her brother kept collapsing on her like a deflated balloon. I looked at my oldest son, still incapable of holding any kind of utensils with a diet nearly as narrow as his little brother's. I looked at junior, wearing a baby bib that barely did up at the back of his neck and knew that I needed my own head examined.

As I had completed all the paperwork for senior I couldn't ignore that where he scored +10 on a question, his brother would score a -10. Each additional fact had piled up, not exact opposites but as near as made no odds. I looked at his arms and legs poking out from his clothes that were too small and label-less, worn smooth and threadbare since this was the third child. I saw his toes curling around the edge of his Spring sandals now that we were in December because they were the only pair that I could 'force' him to wear when footwear couldn't be avoided. My eyes were drawn to his cupid bow mouth, soft with permanently parted lips, without a functioning muscle for support.

I was tempted to crawl under the table and weep then and there. Instead we went home. I phoned the expert and made an appointment to start the second assessment before the ink was dry on the first.


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Autism – who has it toughest?

I'll give you one guess. That's right! Parents. Does the autistic child bother that he or she is autistic? Of course not. He just 'is.'
I suspect that different parents have different experiences of autism. There are a certain percentage of parents who receive a diagnoses for their child and embrace the news openly, after a period of adjustment. Such people are the fluffy granola head types of parent. Are they phased and devastated by the news? Does their life come to an end? No, not these troopers, they accept the diagnoses and work with it. They adapt and grow with their children.

Other groups of parents, have a different reaction entirely. These parents are more than severely miffed by the diagnoses. Such parents had a plan, a diagnoses of autism wasn't in the plan. Most things that aren't in the plan can be ameliorated, limited or disposed of, but autism doesn't fit happily into any of those categories. That is the main stumbling block. The anal parents club, of which I am the primary member, hold up the 'life plan' and wave it at anyone they can, screaming complaints, 'not fair! Don't do this to me!'

My club's main objection to autism is how it messes with my own life. Members generally have a narrow viewpoint, a small island that signifies their safety zone and an aversion to learning or doing anything new. If the member is also elderly, you can more or less guarantee that the limitations are cast in stone and ingrained. Whilst they give the impression that they lead a full life, in reality they are treading water pending death, whether that is a few years or a few decades away. This parent cannot see that their life is not dissimilar to that of a hamster on a wheel, cannot see past the bars on the cage.

Whilst they may be the epitome of selfishness, fortunately someone arrives with a key, and not a moment too soon!

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