If's, when's and maybe's?

"I'm just saying 'if' at the moment. We'll have to see."
"Oh but please, please, pleeeeeeeeez?"
"We've not decided yet, Daddy and I have some more, er, talking to do."
"O.k. so when we get the dog..."
"Not 'when,' 'if' dear..."
"O.k. so if we get a dog, what shall we call her? I like Shyler or Piri or Nelly or.. ooo there's so many to choose from. It's going to be so great, I'm gonna love her soooo much! I've wanted a dog like now foreverrrrr."
"What about you dear?"
"Er? He is a boy? He is a girl? What he is? Um, I dont know, we can call him 'dog' coz he is."
"Right. What about you dear?"
"I call it 'wolf!'"

Crazy Talk

I’m not sure if it’s because they’re autistic or whether it’s the speech delays or some random combination of the two, but now that they talk so much more than I ever imagined possible, far from improving our understanding of one another, it seems to make comprehension some kind of cerebral gymnastic exercise, one that I am not qualified to deal with.

For example, because examples usually clarify, I say to junior ‘go and put your shoes on now dear.’ Note the use of a statement not rather than a request, which would invoke an automatic negative response or meltdown. What kind of a response might a rational parent expect? I suspect that ‘I don’t have any shoes,’ would not be your first guess. If you had personal knowledge of our family, his aversion to texture and shoes, this might be on your radar, but that answer still wouldn’t be the words you’d expect. You might guess ‘I don’t want to wear shoes because I hate them,’ that would be o.k. and logical. The denial of the very existence of shoes, isn’t quite so high up on the expectations league, or at least not on mine.
I used to consider myself quite a linguist, agile in the word department but this doesn’t marry well with my everyday performance, or lack thereof. Time after time I am floored, defeated and dumbfounded, and that’s only within the average hour.
Whilst we skimmed over the issue of using statements rather than questions in the hope of eliciting a response, there is also the matter of giving choices, the A or B type of choice, mainly because for senior, choices are a hardship. So you say to him, ‘do you want a tangerine or grapes?’ Whilst neither are preferred, neither are they loathed, so it’s a choice between two indifferent items. Clever timing on my genius part, ensures that he is hungry before I ask the question, but food is still generally a refueling exercise rather than a social or pleasurable experience. So how will he answer? I can cope with the;

a] I don’t know
b] nuffink
c] no
those are all just fine, we’ve been having those for at least 18 months, it’s the ones that spring out of nowhere to hijack and confuse me. These can take a variety of forms such as the unexpected return question that is off topic;
“You like Pikachu or Absol bestest?” Whilst my knowledge of Pokemon and my sons’s preference for them, I did not anticipate that my question would provoke his question. Alternatively, his response might be a different question, one that refers to an incident 6 months or 6 years ago, that is not related to the current topic either;
“when I was 4 did I have an accident?’
There again we could have the relevant ‘on topic’ question, that still comes out of the clouds to zap the feeble minded brain of the adult;
“Citrus fruits are poisonous? I am gonna die!”

Am I complaining because my speech delayed non-verbal children are less so? Well yes of course I am, that’s what I’m best at afterall, but at the same time it’s such at monumental development that my brain is still lagging behind. The fact that I cannot anticipate their responses reflects my own very narrow field of expectations. It also reflects the fact that they do not have those same limitations, they literally do ‘think outside the box.’ Who wants to live in that kind of a cage anyway?

My synapses and neural pathways are strong, swift and travel over familiar well rehearsed territory. Their’s are relatively unformed, fluid and free flowing. I know where my typical conversations will end up. Conversations with my own boys are uncharted, without a script or map. But maybe it’s better for all of us to travel hopefully than to arrive?

Roll up, roll up, get your spit bowls here!

Handy hint [possibly] no.3

This is more of a mini book review. Many parents have problems with food and their children. This is by no means an exclusively ‘autistic’ matter. Other parents have difficulties with Pica. [translation = eating or mouthing non food items] If your child falls into the former category then this book may prove to be helpful, I hope. It’s called “Just take a bite,” by Lori Ernsperger, Ph.D and Tania Stegen-Hanson, OTR/L. The forward is by Temple Grandin! which is the seal of authenticity for me.

I may have read every book written on the subject, but has proved to be the most effective for my child.

















It explains all the pertinent factors in language that is easy to understand with lots of examples and hints. It provides a planned approach for the parent to implement which removes the pressure so that the whole exercise becomes stress free. but A change in approach for the parent, based upon a greater understanding of the interplay of numerous different factors, means that calm may be restored to your household, I hope.

It may not be a quick fix, but under the present circumstances, a very slow fix is probably about as good as it's going to get around here.

Perfect Pancakes

My children do not eat eggs, amongst many other things, even though only one of them is neophobic. They love the shape of eggs, holding eggs, playing with eggs, buying with eggs but not actually eating them. Whilst their diet is appalling it is just one of the many campaigns that we’re working on. Each child has a narrow diet and has very little overlap with the preferences of their siblings. Separate meals for each individual person with their own set of quibbles can be a challenge for the chef. So a couple of years back when junior entertained the possibility of eating pancakes for breakfast we considered this step to be a major breakthrough. At last we had found one meal where they would all eat the same thing as each other.

As usual, I was not content with this development and started tinkering with the ingredients. Changing the recipe of something that they already eat, is also a recipe for disaster but I forged ahead regardless. The goal? Egg consumption by stealth. Weeks of careful tinkering eventually produced two pancakes per child, one egg per pancake. Result each child ‘eats’ two eggs per week. Cost? One gallon of syrup per pancake consumed, not an idea ratio but another little something that we can tinker with. When I recall the delicate lacey crepes that my mother created I am tempted to hide in my own oven, but needs must where the devil drives.

Hence at their current ages of 9 seven and a half, and 6, after years of meticulous devotion my children consume pancakes with the consistency of India rubber. They’d double as Frisbees if one were so inclined. Not so much a culinary tour de force as reinforced tyre material.

As side issue, which is the one I wanted to discuss was the ‘perfection’ aspect of the pancake in question, not it’s consistency, but it’s shape. A perfect pancake in this household is round. Not only is it round, it is perfectly round. In fairness I only need to make one in three, is perfectly round and ensure that junior is the recipient of my efforts, if I wish him to participate in the eating extravaganza. It’s a very simple formula for success; if it is round he will eat it, if it is not round he won’t and no amount of syrup will persuade him otherwise. Even if you hold out and represent the irregular pancake at snack time, lunch time, next snack time and supper time, be assured that this is a battle that you, or rather ‘I’, am not going to win. I have no idea what perils of consumption worry him so inordinately on this matter, but he will not be budged.

However, during my temporary check out period following surgery, my domestic duties have been severely curtailed. Spouse, the original pancake make of some 15 years experience entered the fray and took up the griddle. Whilst I would like to say that they all cheered him on in his efforts, this would be less than truthful. I had the pleasure of witnessing the presentation of the first tear shaped pancake. The noise that cracked open from his lungs assured the neighbour that he had just been slain to the floor with a stake through his heart. Fortunately he was speechless with shock, so outraged at the concept of non roundness. Even when the screaming subsided he was only capable of half sentences:
“what? / it can’t be / no / never / not elipse / aghhh.” On reflection spouse and I concurred that a non round shape might have been an option if the pancake had been a recognizable and familiar shape. A preferred shape might even have brought additional rewards, but a trapezoid on a early Sunday morning didn’t enter our thought processes, well it doesn’t often, does it?

The other two chomp away oblivious to his angst and make unhelpful comments;
“Hey it looks like a tear and he’s crying!”
“Mine is like a , like a …er. …..it is shaped like a squidgey moon!”
“Actually, it looks like an egg too!” Everyone turns to look at junior’s plate. Everyone mutters in agreement, it does sort of look like a pointy egg. Junior allows his eyes to sweep over his own plate, whereupon he sputters in awe, “it is! It is like an egg! I love it, eggs are my favourite!”

No Compass

Now do feel free to stop me at any time when you’ve had enough, as I do have a tendency to go a little off track on occasions. I won’t be in the least bit offended as I’m well versed in social blunders of this kind. When I first meet someone new, I have a inclination not to mention children, mine or anyone else’s. Do I behave in this manner because I am ashamed? You’d be justified in that opinion, but you would be way off. Unlikely as it may seem, seeing as how I am a Brit, on the contrary, I like to think that I am being considerate to that person. Unless you, the listener, have unusually enhanced social skills, then if someone that you meet, such as me, tells you that they have a couple of autistic kids in tow, that might prove to be a little bit of a stumper. What is the appropriate etiquette when receiving such a piece of information?

I don’t know the answer to that, but I do know that whatever the person says, they at least, feel that it was wrong.

Now I am sympathetic to their plight and that is why I keep mum. [translation = don’t let on] As it turns out, after all this time, it doesn’t really matter what the reply is, as I’ve heard most of them, some of them many times and I can honestly say that I am not in the least bit offended any more. I feel sorry for you, the receiver of the information, because hearing this piece of information makes you feel uncomfortable.

It’s a tricky one though, if I leave it too long before I mention it to you then it can be even more of an unpleasant or disconcerting surprise.
I know that you’re just dying to know what the most common reply is? Well, sorry to disappoint, but generally the one that happens most often is an ‘oh!’ and a combination of a shifty eyes and a weak smile, followed by either a lengthy pause or a rapid change of subject.

But this isn’t really my area of expertise, seeing as how I hale from yonder small island, where ‘body language’ merely refers to rude hand gestures and there are no such things as social skills, merely rules, a hierarchy and a sense of decorum at all times. Now if my autistic children were hoping for a leg up [translation = advantage] in the realms of social interaction, then they basically drew the short straw. Since I’m out here, in Jolly Old California, rather than back there, at least I have the advantage of understanding the not so subtle messages that I exude. The tight face, stiff upper lip, brow frown and rigid shoulders, tell every one to keep their distance without me having to utter a single syllable. My diction may be first rate, my enunciation second to none, but that won’t get me very far with an autistic child because my facial expression doesn’t match my message. If you have a face like a poker, you are wasting your time trying to communicate with them. You need an animated face, a cheerleader’s movements, an Italian’s hand gestures and a tone of voice that is arresting. Without these tools you are wasting your time, you won’t even get their attention let alone permit a message to transmit.

Yes, when dealing with an autistic child, whilst it pains me more than you can ever know to admit it, two particularly loathsome American terms come to mind; ‘in your face’ and ‘on your case,’ because ‘would you mind awfully’ and ‘ when you have a mo’ just don’t cut it. Fortunately, learning to be a ‘citizen’ out here has conferred far more benefits upon me than the mere permission to work.

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.

Handy hint [possibly] number 2

It may be that you have the kind of autistic child that objects strongly to ‘outside.’ If you don’t, just skip this and go and find something more relevant.

If you are truly unfortunate ‘outside’ also includes the garden. [translation = yard] If you find that attempting to take your child outside results in a serious case of the heebie jeebies, then you may also find that you and your child [ren] are trapped within the four walls of your home.

It is probably a good idea to try and find out what exactly is the true nature of their objection to ‘outside.’ This can be tricky if your child is also non-verbal. Some of it may be sensory in the realms of weather, temperature, the degree of light intensity and so on. This list is more or less endless, but again, difficult to pin down if language is not forthcoming. If you’re happy for your house to remain your prison, all well and good, but even the more reclusive parent will find that on occasion, it is necessary to leave the house, if only for a few basic essentials such as food.

With that in mind, it is probably best to tackle the issue before it festers and becomes ingrained, the only other alternative being, that you will eventually leave your house in a six foot wooden coffin.

Now it may be that you are out numbered, one parent versus two children determined to remain troglodytes. You may be able to fool a friend into assisting you with this task, but failing that option, it may only be possible to deal with one child at a time. This is especially difficult, as it probably means that one child will be inside unsupervised, whilst you ‘deal’ with the other one outside. If this is the case place the inside child near a glass window or door with whatever the current obsession is. Whilst it is painful to admit that you are allowing one child to perseverate [push the ladder up on the fire engine, push the ladder down on the fire engine] for 20 minutes, this has to be balanced against the benefit of acclimatizing the other child to the ‘outside.’ Try and ignore the fact that the inside child is oblivious to the screaming agony of the outside child, as this is just a distracter to the parent. But I digress.

What can you do outside that might make being outside less agonizing or possibly more attractive? This depends entirely upon what you have to work with, as each child’s unique make up will determine the outcome. For one of my children this meant lugging out Thomas the tank engine and his numerous cohorts into the garden and seleotaping them to the fence at sight level for a four and a half year old. Whilst I’d like to describe this as a treasure hunt with those pleasant connotations, the reality was more of a screaming rescue mission on his part. Clearly, this kind of ‘game’ requires setting up in advance and it’s essential that the trains should be easily removable for those with poor fine motor skills. Ear plugs may be beneficial for the parent also.

For the other one, I found that the alphabet, shapes and numbers painted on the fence, paths, plant pots and other bits and bobs was a much better fit.
If you can make this a daily ‘exercise’ eventually you may be rewarded by the ability to have both children rescuing their respective preferences at the same time, therefore reducing the parental stress of leaving a child unsupervised in the house.
With luck, much, much later, they may begin to enjoy the experience. Perhaps, much, much later, it might become ‘fun.’

I think most things have the potential to become ‘fun’ when they are no longer ‘new.’

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!

Early days 1 – battle of the sexes

I had two girls. I knew I could do girls, but as a raging feminist, I was doubtful whether I could manage boys. After a few months of my pregnancy, I suspected that rather than being ‘with child’ I was ‘with boy.’ I found that my favourite staple food, bananas, had turned to poison. I started to seriously consider what I would do if the bump was born a boy?

I would teach him to cook and darn socks. I would ensure that he was in touch with his inner child and his feminine side. I would make him into the perfect mate. What were you supposed to do with boys? Everyone, just everyone always said how different boys were. I was worried.

When the first boy arrived I liked him a great deal. He was cuddly and quiet, a peaceful adorable baby, except if you put him down. He had been installed with a motion detector in his bottom. As long as he was vertical and attached, life was bliss. So the difference between boys and girls wasn’t that great, possibly even preferable. It looked as if I was going to be able to do boys after all!


By the time the next boy came along I discovered another difference between girls and boys. Boys did not like push chairs. [translation = strollers] That was o.k. too. I put the little guy in one of those modern contraptions that straps the baby to your chest and carried the bigger one, both vertical, both quiet.

Of course they talked late, but boys do, don’t they, everyone knows that. It was only much much later that I began to understand something called deep proprioceptive input. [translation – squishing a child helps them become more grounded. It is calming and reassuring which helps them feel safer too] It was later still that the connection between autism and sensory integration began to make sense.


In the meantime, whilst I may look like a stick insect, I have the upper body strength of a building contractor, but that’s what happens if you carry two small people until they reach 45 and 59 lbs respectively.

Mind over matter

I take him outside with me and leave spouse to clean up inside. He sits on the gravel in a pout. It’s not so much a punishment as merely keeping him out of the way whilst spouse labours and manges the other two. The gravel is entertainment for him whilst I continue to plant the flower bed. He is a sensitive little soul at the best of times but is quite content with the gravel. Whilst it would be entertaining for me to have him ‘help,’ to do an activity together, I know that dealing with soil [translation = dirt] is well out of his comfort zone.

My elderly neighbour ambles over for a chat. She’s a Texan who doesn’t mince her words.
“Gee hon, that’s looking gor gee us!”
“Thanks!” I mumble. She doesn’t press me for additional words, as she knows that the surgery has left me speech impaired, which gives her a distinct advantage.
“Oh god! Not that darned stuff agin! Remind me, let me see the packet. I know it works it just makes my flesh crawl. Bonemeal, that’s it!” she pulls a face of disgust being of a vegetarian persuasion. Junior pricks up his ears and leaps to our side, “Bone meal! Bone meal? It is lunch?”
“No yur mother puts it on the plants to make em grow.”
“But what it is dah bone meal?”
“Don ask hon. It’s bones that have bin all ground down into a powder!” I watch his eyes grow as large as saucers in his rigid body that leans backwards. His brain processes this information. A little electrical current courses through his body just before he vomits on the path.

He has a great gag reflex.

Other people’s irritating habits

I feel that Obsessional Compulisve Disorder gets a bad press. General opinion would have us believe that the behaviours that manifest themselves as a result of this condition, are immutable, whereas this appears to be very far from the truth.

With luck, it soon becomes apparent what these kinds of behaviours are for any one individual. Whilst they will play havoc on your daily life that’s not the end of it.

Having identified the issues and developed coping mechanisms, you may feel that all is well, that you have achieved ‘steady state,’ or equilibrium. Although they’ve not been eliminated, they’re under ‘loose’ control. This may lead the unwary parent into a false sense of security.

I hoover [translation = vacuum] with the thoroughness of an American dental hygienist, prior to the arrival of the new sofa. I am careful to wind the cable back neatly on completion, so that it is all ready for next time, especially when ‘next time’ may be only minutes away. Due to the inferior engineering standards in America, I threw caution to the wind, and purchased Superhero Hoover. Although I am mathematically challenged [translation = thick as a brick] even I managed to work out that the annual expenditure on a hoover to replace the broken hoover, was not a sound investment.

I find it interesting to note that for the past few years, I was prevented from using this domestic appliance when junior was in the vicinity. The noise would send him into apoplexy. Hoovering at night seemed like a solution. It wasn’t, which meant that this domestic job was limited to junior free hours only. Since he was the youngest, that was infrequently.

It just goes to show how far we have progressed, into a whole new era really. As long as I warn him first, get the eye contact, hunker down on bended knee before my six year old, he grants me permission to hoover. Now, having given him this warning, ‘mister clean’ has sufficient time to go and was his hands and then hide in his room. Curiously, he no longer hides from the noise. Instead he hides himself from the mental image of the contents of the hoover cylinder.

I knew it was a mistake to tell him that most of the dust was really skin cells, but that’s progress for you.

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.

Dearly departed - a new perspective

The search for Jasper the cat was fruitless. A kindly neighbour collared me to tell me on the quiet, that he’d been found on the side of the road, probably poisoned and that he had disposed of his little body discretely so save heartache. At the time, I was grateful for a number of different reasons. I was grateful for my neighbour’s consideration and kindliness, as he was well aware of the special bond between the two. I was also grateful because it meant that I didn’t have to risk stoking up junior’s obsession with death and dying.

Nine months prior I had been at the park with the three of them, the same park that we always went to. ‘Lone Hill Park’ was a safely remodeled park and close at hand. It was for little children with a big football field for junior daughter to go mad in. I was also a dog park, which fed into another preference. It was situated in a cul de sac which minimized traffic dangers. It had shade in the summer and open sunny spaces in the winter. It had a toilet stuck right in the middle and drinking fountains. It lay in a hollow which meant that if you wanted to escape to you had to negotiate an incline or steps, neither of which was an easy option for the boys. All of these features made it as near as ideal as we could achieve. As a result we went there nearly every day for several years, as familiar territory was the only safe way to go.

That day I was puttering about between the three of them, all independently going about their business. One with a football in the field, one hiding in the shade under the structure sorting pieces of tannen bark and the other lopping around distractedly on the play structure above. They generally gravitated to the same occupations until ‘forced’ to do otherwise.

I watched him fall. It was in slow motion of course, arcing through the air, loose soft limbs in the shape of a crescent moon. My body moved in tandem to where he landed on his head and crumpled into a heap. Initially he didn’t move or speak. No screams. Silence. Suddenly he sat up as if a spring had snapped and vomited violently. Tears sprang from his eyes, but no sound. I scooped him up and ran up the steps to the car. Once I had him strapped in, I returned for the others, junior under one arm pit and a tight grasp on the one without the football, both of them were screaming. As we drove to the hospital he vomited repeatedly.
At the hospital I abandoned the car and lurched into the ER with one, another attached and the third keeping up the pace in between gulping tears. He vomited on the Triage nurse and we were whisked away.

As they took him for an MRI, the nurse put her hand on my arm to say, “I’m sorry, but you’d better brace yourself.”

To cut a long story short and skip the drama, when they returned he was fine.

I learned a great deal from that experience. Whilst he was on the gurney the other two were ‘loose’ in the room. His sister sniveled and wept quietly. Junior found a swivel chair and hurtled about on it oblivious to everyone and everything, singing, singing loudly. A different nurse asked him to be quiet because there were ‘very sick people here.’ He bit her and then repeated her sentence for the next 30 minutes. He took his clothes of every few minutes and we lost his shoes during the episode.

I had always been worried that their preference for being naked would make them vulnerable to……..well vulnerable. When the doctor and nurse tried to remove his clothing, even though he had no speech whatsoever, he physically fought them off, clung to his clothes and flailed about, an instinct that I didn’t know he had.
Today, although he claims no recall of the incident, he refuses point blank to go to ‘Lone Hill Park’ even though until that time he had never given any indication of having known it’s name; “I go to park but not Lone Hill Park!”

48 hours later, junior’s phobia about death and dying was full blown and has been a recurring nightmare for us all ever since, even though at that time neither boy gave any indication of being aware that they even had a brother.

At that time, the boys had not had their diagnoses very long, the subject was raw. My level of knowledge about autism was growing rapidly but I had only told close family and friends. The first thing I said out loud to the treating physician was “he is autistic, he has a speech delay so talk to him like he’s two and a half.” I still don’t know what he was trying to communicate to me as he looked into my eyes and laid a hand on my son’s forehead, but I exactly recall the visceral instincts that coursed through my veins, pumped through my brain and made my heart turn to lead.

When spouse arrived breathless, it was all over. He talked to doctors, signed bits of paper and found cards as we assembled ourselves to go home. The nurse removed sticky pads from his head and body. She passed me his clothes, taking them out of a plastic hospital bag and said “you know I’ve been a nurse for nearly 17 years……..I’ve never seen anything like that……….I was quite sure……….”

It was the first time in five months that his label was irrelevant and meaningless.

Communication skills

It is just as I hear the garage door close with spouse’s departure that I realize that I am in a pickle. My son, even in the morning is technically non verbal. After jaw surgery, I am effectively non verbal also. The cleaners are coming. Senior son is home with me as his asthma is too severe to go to school. I debate how to explain this to the cleaners, that there will be two bodies skulling around the place getting in their way? I have no-one to interpret for me. I consider waving my wipe board at them, but my Spanish speaking is of ‘Dora the Explorer’ standard and I certainly couldn’t write anything in Spanish. I mutter mentally, moaning and complaining, what am I going to do? I have 45 minutes to come up with a plan.

I don’t know how much spouse explained about my condition to them during the previous fortnight? [translation = two weeks of recouperation] I run a finger tip check over my mouth and count the pins and needles per square centimeter; no chance. We snuggle on the sofa whilst my sluggish brain begins to plot. I start scheduling with my son. I write a list of our days ‘events’ to pre-empt repeated questions along the lines of ‘what we do next?’ at 35 second intervals throughout the day. I am lazy and befuddled. I write rather than be imaginative and use icons.

At three he could read. Somewhere between that time and now, when he is seven and a half, he has mislaid that skill. Therefore, this is not my hyperlexic one, this is my ‘I never read anything under any circumstances unless you put hot coals to the soles of my feet’ one. I tap the board to save speaking and catch his attention. He reads aloud. He reads aloud perfectly. His eyes flick between my eyes and the board. I write another sentence and we repeat the exercise inbetween his coughs and my dribbles. We appear to be in agreement. I know this, not because he verbally agrees, but because we both put our hands in a thumbs up gesture and make eye contact. He reads additional sentences and we make the same gestures; four points of acquiescence.

I cannot fathom if this really is a complex social situation or whether I am making mountains out of molehills?

When the door bell rings he scampers out to the hall where Maria and her team appear with copious cleaning equipment. I am a few steps behind. As I approach, I hear my son talk to her on his own volition: “I am ill, so I am home. Mum is ill. Er, mum is more iller dan me. We are bowf home together but we will be good.” Maria blinks. She has known my son since he was 18 months old. I doubt if she has ever been honoured with as many words in as many years. My puff ball face smiles at her. She shakes her head slowly and runs a hand over his silky hair.

Harsh Reality

Many of the difficulties that parents experience with their autistic children is the vast disparity between different skills in different situations. This, in some situations, is referred to as an inability to generalize skills, which means that if they learn a particular skill in a particular place, often they are unable to use that skill at different times and places. The skill is encapsulated within a discrete area which can be difficult to expand. I whip him of his cat and explain that his head is as heavy as a medicine ball, which will surely crush the middle of the cat into a pancake. His understanding is immediate. He is flustered, uncertain whether to make amends with his pet cat or with me, for his inadvertent error. I scoop them both up and collapse on the sofa together for a group cuddle. I stroke the cat and my son in exactly the same manner. He mimics his cat, they both purr with contentment. Whilst we sit I recall a couple of years ago when his first original cat went missing. Jasper the cat, was lost and I suspected that he had come to untimely end. I decided to prepare my son for the loss by actively addressing the matter. We made posters and pinned them up in the neighbourhood. When the weekend came Spouse took care of the other two whilst we went round house to house to make enquiries. We had the script and had been practicing. He held a photo of his cat. We would approach each house, ring the bell, wait for the owner, ask ‘have you seen my cat,’ hold out photo for viewing, wait for a response and then depart having given thanks. It is a variation on our ‘trick or treating’ skills which we also needed to break down into steps and practice.

We started with the real locals, the people who know us, the people with patience, kindness and understanding. We went further afield, but still no more than 50 yards away from our own front doorstep. He was motivated because he understood the logic of this method of cat finding and he really wanted to find his ‘lost’ cat. He had been pump primed for years with ‘try, try, try again,’ and ‘use your eyes, keep looking.’

We would amble up each driveway with his usual gait. At that time, is was his gait that immediately gave the game away that something was different. The simplest description I can come up with, is that of a badly strung marionette with an apprentice puppetier holding the controls. He moved in slow motion to the front door by a circuitous route. I would prompt him to find the bell and remind him to press it. When someone arrived I would squeeze his shoulder to induce speech. Technically he was standing, but his body moved as if his skin were infested with ants but he could only respond in slow and perpetual motion. His body was not orientated towards the homeowner, nor was his face. Eye contact was out of the question. Eventually the ‘exchange’ would be over and we would leave to go to the next house. I walked close to him as he stumbled in the general direction of the road, oblivious to traffic and the next step in the sequence of the task that we were trying to accomplish. It was a time consuming exercise. In all I think we managed a dozen houses.

During that time, every so often we would come across a dog or a cat. He’s not keen on dogs. Each ‘pet’ we bumped into evoked the same response. He would skip up to the creature with alacrity, almost agile, squat down and start chatting face to face, “Hi, you live around here? I’m looking for Jasper he’s my cat, here’s a photograph of him, here, take a look, ain’t he cute, have you seen him at all?” He would whitter away having an animated one way conversation, body orientated, face and eyes locked on to his target.

It was so extraordinary to witness that even now I don’t think I can do it justice, he behaved like two different and completely unrelated children, the contrast could not have been more stark. It was watching the switch between the two; the discombobulated, inarticulate, disinterested child talking to the homeowner and then the gregarious, talkative, energetic whiz to the pets that was mesmerizing, back and forth, off and on, over and over again.

I think is why all parents need to continue to try different experiences, as you never know what may be lurking just around the next bend.

Leaking

I sit at the dining room table with my children as they eat their snacks. My prompts are limited as my words are indistinct after jaw surgery. I try to glug my next bottle of Ensure, the most vile liquid substance on the planet. The crunch of munching crackers makes me slightly jealous, the salt crystals glitter in the weak Californian sunshine. Only five more bottles to go before bedtime. Three pairs of eyes long to share the sickly sweet drink.

“Eeow Mom, yur dribblin!” she squeals. Junior scrambles from the table and rushes into the kitchen. He slams a few kitchen drawers before returning with a floor cloth. He hesitates, falters, recovers and dabs ineffectually at my chin, “dehr you go mom, all better now!”

Rats to the theory of mind.

Progress

I determine to be productive after "jaw surgery" and set off into the garden to pull up weeds and remove dead leaves. As my knees bend and I hunker down I whiz through a decompression chamber such that my nose explodes with the shock of being 3 foot lower than usual. I drop the three soggy leaves that I’d selected and head back inside the house to clear up the blood from yet another spontaneous nosebleed.

It’s like a conspiracy of sloth has overtaken me. I move rapidly along to plan B.
If I cannot be physically active then instead I’ll just let my fingers do the walking and phone the gardening company to come and clear up the mess, damn the cost. I have just finished dialing when I remember that I cannot speak out loud, or at least not so that anyone can understand what I’m saying. Damn – it is a conspiracy.









I am so heartily sick of being ill and idle. I try and remember the things that I used to do before, before……..the children? When I wasn’t working my hands were always occupied. I sat down more. Hobbies of the past, or pastimes such as knitting stopped with the last baby blanket. It would appear that every waking moment was filled with children’s needs. Once those needs became more complicated, my time disappeared and reformulated itself into extracting words and teaching basic skills. The frantic pace with the mantra ‘early intervention’ ran through my brain at all times. Every second had to be used constructively. I was all over them like a rash, relentless and frenzied. We had started late, we had so much to catch up on. It was a relentless treadmill of our own making.


I also realize that whilst I didn’t have surgery three years ago, two years ago or last year, this year, now, it has been possible, that although we still all have a great deal of growing to do, I can stop obsessing on the trees and admire the forest.[Thanks Kristina]

Wife Beating and recouperation

It is a common phenomenon with autistic children that they often miss very obvious visual clues. It is also true, that many of them have such finely honed visual acuity that minute discrepancies loom large for them. It is the fact that these statements can both be true at the same time, that can be so disconcerting to a parent.

Spouse returns from work to find me and the children in a heap on the sofa with the saintly baby sitter hard at domestic duties in the kitchen. I have one child under each arm and the third sprawled across my lap. One picks as the loose threads on my elderly shirt, the other runs his finger nail along the very finely knitted ribbing. Because the sleeve is tapered from shoulder to wrist this means that there is a herringbone effect at the seam. It is uneven and the cause of considerable angst to junior. It should be even and uniform, such irregularity is the source of a great deal of irritation.

“So you’re much more perky today!” he says in a surprised tone of voice.
“Indeed I am! Went out and bought a few groceries.”
“Really! So you drove the car?” Junior perks up at the mention of ‘car,’ to add his two pennarth, “Mommy is betterer if she is driving!” He grins at me conspiratorially, rewarding me with perfect eye contact.
“Drug free honest!” I add to dispel any niggling concerns of his regarding negating our insurance coverage due to consumer error. Senior chips in. It’s almost like a family discussion, “mom, in not in bed. Mom is downstairs playing wiv us…..er, well…..not playing, she is…….she is sitting wiv us.” He head snaps back and forth between his father and me, checking that he has correctly described the situation, which he has!

“But your nose is still numb.”
“Yes, how did you know that?” I prod the end to see if any feeling is likely to return within the next 24 hour period. I assume that the pins and needles sensation is a positive one.
“Did you get any funny looks?”
“Don’t think so, only when I tried to speak to the check out woman.” I am aware that I still sound as if I have a mouth full of marbles after the jaw surgery.
“Have you looked in a mirror today perchance?”
“No thank you!” Perish the thought! My face isn’t as swollen or discoloured as it was a couple of weeks ago, but I don’t feel the need to check. The horizontal one, lying on my lap continues to read her book, oblivious to the ‘family’ conversation going on around her, but what else can you expect from your typical kids?
He reaches for a damp cloth and starts to dab gently at the blob of gristle that used to function as a nose, “you need to remember to check in a mirror or you’ll terrify the locals. How come none of you told mum that she had another nosebleed?”

Moral - you can think that you're "normal" but who really is?

School report

Communication with the school about daily events is a pivotal point of contact between both parties on the front line. Junior’s school report is not a happy one. It is a recurring theme, spitting at school. Bad habit or perseverating? He spits at home too but we are here to deal with these incidents. When he is at school we are virtually powerless. It is sad to note, that of all the many skills that we would love him to generalize, [translation = be able to repeat in different geographical locations and times] spitting isn’t one of them. We have used a variety of tactics to curb this habit, thus far they have all failed.

There is a veritable panoply of tools available to the parent of the autistic child and whatever current crisis that you are currently experiencing.

We started with the most obvious first step, namely the basic threat – ‘stop spitting or we’ll whip your gizzard out.’ [note to self – research location and function of ‘gizzard’] We moved swiftly onto step two –‘it’s duct tape for you matey!’ [translation = an option limited to fellow Americans] We then trolled through our usual options, the social stories, [translation = "Carol Gray’s site"] the sticker motivational option, the negative count. [translation = count the number of times that you didn’t do it, when you wanted to do it, and compare with the number of times that you couldn’t resist, then gradually tip the balance in favour of the later] This method is useful for the child that loves to count. I suspect that they enjoy it purely for the counting exercise, but that is immaterial if it brings positive results. Then the logical ‘germ’ talk, which often works well with the OCD kind of a kid, but to be used with cautious due to backlash of temporarily tamped down neurosis. The superclean child who is learning to be less so, is likely to react negatively to such a suggestion. This may result in all the reduced OCD habits re-emerging like a plague. It is a brave parent indeed, who will risk fiddling around with the status quo of the OCD.


We occasionally try out more conventional measures such as the ‘big boy’ appeal or ‘make me proud’ guilt trip, just in case something might have changed and we failed to notice the development. On the whole the last two are a waste of breath since no-one has any desire to grow older, nor be regarded as older, and ‘maturity’ is not rated as a strength. This is to say nothing at all about the unlikely or remote desire, to engender pride in anyone or anything. It always amazes me that these two most powerful tools in the average parents’ arsenal of tools, are actually the most worthless ones for the parent of an autistic child. But we haven’t forgotten their existence and we throw them into the mix every so often just to check the status quo. I fear, that should someone ever unexpectedly respond to either of these two appeals in the future, that I might suffer an attack of the vapours if not properly mentally prepared in advance.

In summary, the ‘spitting’ issue is a recurring one that we have yet to deal with successfully by any of the above means, as well as a whole host of others that I haven’t mentioned, due to time and space constraints, as well as the boredom factor. In the meantime, I think.









I prepare myself mentally and take him to one side so that we may both ‘clean our teeth.’ It’s a slow business for me, as access to my mouth is minimal after jaw surgery. I use a lot of face cloths to clean myself up before we retire to my bed, where my wipe board waits. I write, he reads.
“I SAW YOUR SCHOOL REPORT.”
“I had a bad day today.”
“I WISH I COULD SPIT LIKE YOU.”
“You cant spit.”

“NO.”
“Why you cant spit?”
“AFTER THE SURGERY MY MOUTH DOESN’T WORK PROPERLY.”
I pull an exaggerated sad face. His finger tips brush my lips.
“I can see? Open dah mowf please?”
I oblige revealing braces, lumps of plastic and enough elastic bands to play cats cradle to professional Olympic standards.
“I HAVE A DEAL!”
“What deal?”
“HOWABOUT YOU CAN SPIT AGAIN WHEN MY MOUTH IS BETTER AND I CAN SPIT AGAIN TOO? CAN YOU WAIT UNTIL WE CAN SPIT TOGETHER?”
“You want to spit with me?”
“SURE I’D LOVE TO SPIT WITH YOU.”
“You are the sad one?”
“I AM A LITTLE BIT SAD BECAUSE MY MOUTH IS ALL WONKY.”
“I fink maybe I can wait a bit. You are better tomorrow?”
‘I GET BETTER EVERY DAY BUT IT MIGHT BE A LONG TIME UNTIL I CAN SPIT LIKE YOU DO.”
“How long is dah long time?”
“I DON’T KNOW. TELL YOU WHAT, WHEN MY MOUTH IS BETTER WE CAN SUCK UP CHOCOLATE PUDDING WITH STRAWS TOGETHER AND THEN BLOW IT OUT.” [translation = an exercise recommended to help with lip closure and breath control!]
“You cant blow evver.”
“I KNOW. CAN YOU WAIT UNTIL WE CAN DO IT TOGETHER.”
“May be……….but I will not be blowing dah chocolate pudding out because I am liking to be eating it. You can blow it out though, coz I know that you are hating dah chocolate pudding.”

The 'Theory of mind' dies again. Horray!

Green Grass

“Now if I were, rich and famous, then really my troubles would be over!”
“You think?”
“Yup, I’d never have to make a bed again!”
“Excuse me! I seem to remember sayin that yah don make beds. Anyways you have those duvet things, that’s more of a shake and a shimmy, no hospital corners there.”
“Minor details.”
“Anyways, how a yer kids gonna learn to make a bed if there’s someone else there to do it? You’re still gonna have to teach em?”
“True. But at least there would be someone to clean up al the spills and mess!”
“I thought you wuz tryin to teach them how to do that too.”
“I am, but they’re not very good at it yet.”
“Don you think it’s gonna undermine their efforts if someone comes along and cleans up after they’ve tried their best?”
“Maybe. But it would still be nice to have someone pick up the children from school, a chauffeur! Someone else to man-handle them into the vehicle and get danger money!”
“How would you find out how their school day had been if you couldn’t talk to the teachershttp://www2.blogger.com/img/gl.link.gif
face to face, see the other kids, their friends, the other parents, how would you keep your finger on the pulse?”
“Do you have something against being rich and famous or something? Still it would be nice to have someone do the garden, that would save a lot of time.”
“I thought that was your therapy time! You’ll be as mad as a brush without your down time.”
“Very well, just someone to do the shopping then!” A good one, for someone "allergic to shopping."
“There are other ways of learnin the value of money but it sure is good exposure for them and they’re gettin better at it all the time with all that practice.”
“Someone to wash up?”
“Ain’t that dishwasher workin? The cleaners already come to give the whole place the once over weekly, how much more do you want?”
“So basically you’re saying that I can’t be rich and famous because there will be too many learning opportunities wiped out by having all these helpful people around?”
“Your choice hon. I’m sure you’d get someone to do it all, but if you did, think what you’d be missin!”