26 January 2008

The Vexed Issue of Food

I'm scribbling my weekly shopping list, and the mail has arrived. Oh look; there's an important looking envelope from Reader's Digest Sweepstakes. Apparently I've already won. Great! A few million will certainly come in useful. I'll open it later....

My grocery list has a format; it's my habit to arrange my list in three columns, in groupings that are roughly similar, and roughly in the order I know my favorite store has them arranged. I know that doing this saves time based on the way it doesn't work when I'm in an unfamiliar store's layout. It's a small trick that seems to make a difference. Until the store decides to rearrange things, but that doesn't happen often. That's the easy part.

What actual food to buy is what presents the challenge. Every parent will encounter difficulties with getting their child to eat what's best for them. Some children are easier than others. Autistic children bring a whole new dimension to the concept of difficult.

To understand why this is, it's important to consider that autism causes impairment in the way sensory information is processed. This includes sight and sound, and smell, taste, and touch.

Sometimes the first of these will be the culprit. I know of an autistic child who refused for months to eat anything that wasn't white. She never explained why. I know of several children who will not accept a plate upon which any kind of food is touching any other. One will go so far as to insist on the order of the portions. The potatoes must not be next to the carrots, and so on. The imposed dietary laws make mealtimes in these households chaotic. To an uninitiated outsider, it can appear completely insane, which it is. But let them only witness the kind of flapping, screaming meltdown caused by the toast not being the correct shade of brown, or whatever, and they may gain some insight.

One day I accidentally gave my sons the wrong lunch boxes. It was like giving kryptonite to Superboy. Twice. Still makes my head ache thinking about it.

I can't say for certain that sound doesn't play a part in all this, although it hasn't personally been in issue for us. In fact I wouldn't dare say it didn't, because I'd be sure to find out otherwise. Nothing is too improbable to be a defining trigger for some poor ASD kiddie somewhere. If a food is somehow unpleasantly noisy to an autistic child, they will let you know.

I have found smell, taste, and touch to be the most trouble. Smell and taste make sense, but the sensation of touch was the most surprising for me. I never considered it. How a particular food feels in the mouth and throat, which is something an autistic child can't explain, can make all the difference in whether a food is accepted, or sparks a crisis.

For instance, both of my children rejected potatoes outright because of the texture. After years of Taipan's robust example and urging, they eventually did come around to the allure of french fried ones, but that didn't, you'll appreciate, feel like a significant win in the pursuit of a rational diet. They will not eat them prepared in any other way. Frying seems to transform the texture into something far less icky for them, as it does most foods for everyone else.

By the way, my view is: if a child refuses to eat a particular food or combination of foods, it isn't worth fighting them over it. If you press the point you'll have the kind of hysterical conniption that can mar an entire day. And they still won't eat it. You will not win.

Personally, I decided early on that I wouldn't fight over food. I would fight over safety issues --yes, indeed, most certainly-- but not food. It is important to prioritize what you insist on. Be selective about skirmishes. The trick is to try choosing mostly the ones where you stand a chance of winning.

Luckily, Ben has developed an almost reasonable attitude to food. He's always been keen to emulate his father, and the Taipan will eat pretty much anything. Taipan's main requirements are that his meals be colossal. Ben got a lot of modeling during his formative years, and tried many things only after he witnessed his dad chowing down. As a result, Ben will eat all kinds of meat and fish, cheese and eggs, milk, fruits and vegetables. He loves salads. The breadth of what is acceptable to him seems miraculous, even better than a normal kid. That is, until a closer look reveals some deep quirks.

Take toast. It must be burned. I'm not kidding. When he was small, we must have had some toaster malfunction or other, because we went through a brief period of time when we had to scrape overdone toast. Ben imprinted this, and decided that was how he liked it. For him it truly isn't toast unless you can scrape black off it. Short of that, and it's still just bread, and he will reject it. Loudly, and adamantly. Now that he's a big boy of eleven, he likes to make it himself. When it pops up, if it isn't carbonized, back down it goes. I have gradually become accustomed to the acrid, brimstone smell of Ben's breakfast.

For some reason, I remember my dad insisting that 'charcoal toast' as he called it was a folk remedy for an upset stomach. I think it is a tried and true litmus test for ascertaining if a child is really too nauseous to go to school, or is just faking. From what I have read, the idea that burnt toast is good for you is simply not true. For the record, it is medicinal activated charcoal that is evidently beneficial.

Linus has always been much more challenging. His range of acceptable foods is extremely narrow and rigid. For a start, he's a one-food-at- a-time boy. If he wants some cheese, that is all he will have. It must be grated in a bowl. Sliced is unacceptable, and melted is out of the question. He gets the grated cheese all over the place, but I deal with it because it is the only dairy product he eats.

The trouble with Linus is that given his way, he'd eat only Doritos and chocolate cake. These foods, as everyone knows, are virtually nutrition free. He loves empty carbs.

I have to work hard to get nutrients into Linus. He'll eat a hamburger, but he only wants the meat, with a dollop of ketchup. No bread, or lettuce or tomato. Just meat. And then it gets weird. He will not eat any of the browned outside of the patty. He will messily pick off every bit of surface that once touched the frying pan. I give him a dish for this, and a cloth to wipe his hands on. It's easier that way. Then he'll eat all the meat inside unless I have accidentally left it a little too rare, in which case he will peel the brown meat carefully off of the pink. It's tricky, because too well done, and he won't eat it at all. The dog loves Linus.

Linus got a DVD for Christmas all about healthy food. It is narrated by Elmo and is in general a screeching irritant but for some reason it induced my son to eat an apple, and to try some salami. It has been fun trying to get Linus to say the word salami; he has trouble with the 'L' sound and keeps trying to say it in a high pitched Elmo squeal. Nevertheless, 'Yay Elmo!'

Then Ben saw the same video, and announced he wanted a sandwich with salami, cheese, lettuce, tomato and mayonnaise. No problem there, until I constructed it incorrectly. Ben became furious with me and agitated because I didn't do it exactly the way it was done on the video. It had to be in exactly the order stated above, and the mayo had to be squirted on top of the lettuce. Who does that? I have passed my entire sandwich making career (which spans decades now, I don't mind telling you) spreading the mayo and similar condiments onto the bread with a knife. To placate Ben, I'm now obliged to try to spread mayonnaise onto crinkly lettuce, which was not really working for me. At that point I felt a familiar urge to chase Elmo with a big stick....

The apple that Linus spontaneously ate was good to see, because he generally won't eat much fruit. Once in a while he gets a hankering for bananas, but not too often. They have to be on the yellow-with-no-spots-whatsoever side of barely ripe. If they are, and he's up for it (and I don't catch him in time) he'll peel all of them and bite off the pointy ends. No one else wants any after that. I love Linus, but he isn't always too reliable about hand washing. Apart from that, he will sometimes eat an apple (or apples, chewing all the skin off of several, leaving a a pile of very fat cores) or a few white grapes. I must stress that he takes the above options only once in a great while. And that's it for fruit. Vegetables are out of the question. When he was very small he would sometimes eat green beans, but he rejected them one day and that was that.

To prevent him going without vitamins altogether, I dope his apple juice with a liquid supplement that contains a long list of them, plus some iron. He prefers the apple juice without it, but has gotten used to the yellow tinged stuff and its taste.

I've had a couple of wins in the past few months with expanding Linus' diet. I have gotten him to eat cubes of beef steak, and sometimes even roast chicken by offering him a squirt of ketchup to dip into. He loves ketchup. I was also advised to try some mineral supplements and omega-3 capsules by a naturopath, and have found if I crush it all up in some nutella, he'll eat it on a sandwich.

I had to make a series of bribes to Ben last year because he didn't want whole wheat bread and pasta, but I knew that Linus would accept them if the other variety wasn't around. Ben loves his white bread, but it had to go. Linus has too few nutritional options to let that opportunity for improvement slide.

Both boys have gone through phases where they'd ask for something, and then when it was ready, refuse to eat it. My tolerance for that is minimal, I have to confess. Especially if it happens more than once in a given day. Ben would sometimes ask for two or three different things, and then reject them. Luckily for both of us, he seems to have grown out of that, because it came close to compromising my policy of not fighting over food. I sometimes felt Ben would do it because he was bored. With Linus, there is the mitigating factor that he can't talk. If he rejects something that he didn't point to, or use one of his few words to ask for, I don't mind as much, but he too has played the food roulette home game. "Let's see if I can make mummy's head explode...."

Now, there might be a let-them-starve impulse wanting to assert itself at this point. I understand that kind of thinking, I really do. "Back in my day, children ate what they were served." Well, yes. Usually.

Part of me longs for that old authoritarian certainty, but it fails to take into account the fact that there are normal grown people walking around today still traumatised by being forced to eat something they hated so much that it made them feel sick. The authoritarian way also overlooks the grim reality that if you plan to deal inflexibly with your children, you have to be prepared to be that way all the time. With an autistic child, you will have the same battles over and over, with the same unpleasant outcome. My youngest child already screams like a steam whistle whenever he's frustrated. I'm sure it's only a semi-quaver short of that required to shatter the windows. I am definitely losing some of my hearing already; it sometimes feels like it's pulping my inner ears. A scenario that would provoke shrill protests every time he wanted something to eat is not something I'm prepared to take on. Not without some of those big industrial orange ear muffs. Hmm. Note to self: should probably get some of those anyway. For when Linus is having an extra bad day.

I read somewhere that the real long term goal of parenting is to raise capable people who love you. Isn't that lovely? I think it's distilled wisdom, and I have embraced it. It's a comfort to me when it all seems too hard. A screaming match every single day over uneaten vegetables or spilled milk isn't how I plan to get there.

19 January 2008

One More Week

There's only just over a week remaining in the summer school holidays here in Queensland Australia. The summer vacation here does have Christmas as a major activity, even if, as a former northern hemispherean, I think it's too hot, muggy, and weird. Never mind. The children love it; the over-abundance of sweets and the swags of loot. They are normal in that respect.

Anyway, that is all behind us now. The summer school holidays are the most challenging time of the year for us. My sons seem to need the routine that school provides, but also the stimulus of new things. At home it's difficult to recreate that. I run out of ideas in the first couple of weeks. Nevertheless, we've nearly made it! I wish I had one of those countdown clocks such as I imagine NASA has. A nice big digital readout ticking the milliseconds down until the moment at the end of January that I can deliver them to the school gate. After easing the car to a complete stop first, of course.

When I was a child in North America, Labor Day represented the official end of summer, and the start of the new school year. Here in Australia the gateway long weekend, with parties and barbecues, is Australia Day. Many parents celebrate with unseemly gusto.

As school holidays tend to go, this one hasn't been too bad. The weather has been merciful, and that has been a huge help. Usually the heat and humidity combine in a way that makes everyone irritable and drained of energy. This time there have been weeks of cool air and much needed rain. The heat is bound to return. It could suddenly revert to miserably hot, but hey, my clock is ticking down with ten days to go. Until then I'll continue trying to keep them busy.

One thing we are not doing to pass the time is going shopping together. They can't deal with it. My youngest son goes entirely to pieces. He's sensitive to noise, so his difficulties begin in the car park. The echoes of tires, doors closing, and engines running invariably makes him clamp his sweetly chubby little hands over his ears and hum frantically to drown it out.

Once inside the shopping center the conditions provoke a meltdown within minutes. I understand this, because I'm just as vulnerable to the distractions of modern marketing strategy as the children. I hypnotize easily, and if I don't have a list to keep me focused, I can have be swiftly side-tracked by the bright colors and the wall of sound. This goes double for little kids, and not just the autistic ones. The displays are intended to produce sensory overload, and children can only take so much before they get overexcited and/or distressed. Grown ups too.

The visual assault is especially intense in a grocery store. Products have to compete for every inch of shelf space. They have only seconds to grab a shopper's attention, and so they do it with loud colors and big letters. You might notice that the colors predominating are some combination of red and/or yellow? Red lettering, yellow background, vice versa. Aesthetically a shopper is being shouted at from all sides.

As an adult fully aware of that, I can still be diverted and confused by it. My favorite autistics have no chance. For them, it's a painful sensory overload. The elder son, Ben, can now tolerate quick shopping trips, but longer than about ten minutes will be pushing everyone's luck. He will start to spool out, and before you know it, he'll be loud and peculiar in that way that invites stares.

Poor Linus becomes grabby in the presence of so many goodies. Because he can't have all, or even many, of the things he's bound to reach for, he will scream. Like an expert opera singer, he'll quickly move through his entire vocal range, starting with a low wail to warm up, and quickly rising to a piercing high note. Because he's eight, and large for his age, and because his arias of protest are high pitched and penetrating, this also wins us plenty of stares. People expect that kind of behavior from a toddler, not a child who is half grown. Meanwhile Ben will have taken to wandering off down the aisles, 'to help find things to buy 'and meet new people. If I'm shepherding an infuriated Linus there is nothing I can do to stop him.

Ben likes to greet people whether he knows them or not. He'll grin and throw out his hand to shake. "G'day! How're you doing?" Like a campaigning politician, only cuter. Then, as I am catching up with him, he might be launching into one of his non-sequitur conversations, bewildering to the uninitiated. Some shoppers, usually elderly ones, are charmed by this performance. Others seem puzzled, but will be guardedly polite just in case it turns out they know us from somewhere. So far I have had limited success in getting Ben to understand what strangers even are, and that there is a difference between people we know ( like friends and family) and those we don't. To him it's all pretty much the same, which is an admirable outlook in principle, but in the real world a few precautions need to be explained to him. Repeatedly.

Seasonal difficulties only add to the challenge of shopping with the boys. The creeping invasion of Christmas junk from late August causes long term trouble. My baby loves Christmas. Linus' birthday is in early December, and so for him the mention or appearance of tinselly accessories give the impression that the holidays are nigh. He starts searching for presents. The mall becomes off limits for Linus. His nervous system simply can't take it. Mine can't take it either. The silly season which kicks off with Linus' birthday finishes up with Ben's birthday in early January. It is a riotous time of year during which all of their significant adults haemmorhage money, while keeping the boys away from the teeming shops.

Actually, come to think of it, the consumer spending doesn't stop there, because the back to school items, clothing, equipment and stationary, then fill quite a big ticket. Somehow this spending feels satisfying and virtuous, because it is furthering the children's education, while also managing to be an occasion of joy. With every purchase, the school bell is drawing closer. It's hard to muster to much complaint about that.

However, so help me, the retailers brought out all the Easter stuff right after New Year's Day. The Christmas stuff isn't gone, just sort of bunched and jumbled up and marked down to half price, while up go the soaring displays of eggs, chocolate rabbits, marshmallow chicks, and particular to the Commonwealth nations, Hot Cross Buns. Easter is 12 weeks away. I've heard a lot of dismayed remarks about this, from people who are indifferent to the religious significance as well as the more devout. It appears to be equally offensive to both groups, if for different reasons. I simply don't want Easter trappings occupying my head space for so long. Nor a fight with Linus because he wants an out-sized chocolate rodent whenever we go out.

Who am I kidding? I can run, but not hide. Full color advertising is delivered straight to my door, and Ben can read. It is the second week of January, and his birthday was only a week ago, with Christmas just before that, but Ben is already absorbed with compiling his wish list for Easter, and making certain I know about it. He has a mercenary view of the major holidays that he doesn't even attempt to conceal.

I go shopping on the few days during the holiday period when I have respite. It has to be carefully planned, and I have to get enough of everything to last until the next time I can get out. Then I don't need to take my boys into the kind of situation they can't cope with. To be honest, I don't always do well with it either. I'm not equipped with saintly patience, or even insight, until often well after the time when it would have been most useful.

So unless we've run out of everything, (and during this set of holidays I've managed to prevent that happening) we just don't go there.

13 January 2008


When I sat down to write today, my intention was to tell you about a wonderful parent meeting I'd just been to. We started out as strangers, but then we began sharing stories. Surprisingly, these turned out to be one howler after another. Within half an hour it was a party, and we were united in tearful shrieks of laughter. I can't overstate how good it felt. Completely uninhibited about it, we turned heads. I have to admit at one point a guilty thought struck me 'Hey, we are laughing at our children....that should be so wrong...' Somehow it wasn't. I was so glad I took the chance to meet with other veterans of the Planet Autism Space Program. It's a wonderful relief to share stories with people who can really understand. It felt so good.

As a way to preserve your sanity, I recommend laughing at your children at every opportunity. With or without autism, I never have to look very far to find some genuinely hilarious moments in among the debris.

Of course there are moments which aren't funny. It's important to acknowledge that. Well before you can get to the 'cackling at your children in public' stage, you have to pass through a wide and scary asteroid belt where things are definitely not what you expected, and impossible challenges become the norm.

Ben, my eldest son, has just turned eleven. He was born without any of the lumps or abrasions they warn you about. Instead he was a perfect little cherub, and strangely alert. He actually seemed to glow. Ben was a chick magnet, causing women of all ages to flock around, to coo and dote on him. It was astonishing. Some photos of him at the time were so cute they were accepted by a national retailer for use in print ads.

One day when he was about six months old I played a game with him. Simply put, I showed him an object and then hid it from him under a towel. At that age, he was supposed to think the object was gone when it was out of sight, but Ben knew it was there. He kept reaching for it. That suggested he'd grasped the concept of 'object permanence' ahead of schedule. Then at nine months he said his first word, "Mama." I thought, 'My baby is a genius!' Physically his development was right on track: he walked at 12 months. He started running about ten minutes later. I was feeling pretty pleased with the whole parenthood business. "Nothing to it,' I concluded.

At about twelve months, when Ben woke in the morning he would often play quietly in his crib for a while. I thought that was very considerate behavior for an infant. Often I would hear his sweet little voice imitating the sounds of conversation. From another room it sounded just like someone speaking, only you couldn't quite make out the words. Oddly, it sounded that way up close, too. He had mastered cadence, rhythm, and varying tone and pitch. He would even slip in a charming laugh now and then. Now all he needed to do was to learn some words to fit into the template. We waited (and waited) for this to happen.

Ben reached 30 months before we really began to worry. Years before I had written a term paper on how children learn to talk. I knew that he should start with babbling, and by the age of two have a couple hundred words. He should be starting to use them to form simple two and three word sentences. That didn't happen, and it kept right on not happening. He was stuck with his elaborate, imitative prattle, which sounded like it should be understandable, but wasn't. Ben had all the elements, but he was running the wrong software. His behaviour degenerated as his communication became limited to a few words he'd made up and piercing screams of frustration.

His dad, Taipan, and I were at a puzzled, uneasy loss. The doctors didn't want to pronounce the diagnosis of autism. That was partly because Ben made good eye contact, was sociable and affectionate, and also because he was so young. He might catch up, we were told. There was a chance that he had one of many vague developmental delays that might correct itself in time. Or one of the milder syndromes on what I began to understand was a spectrum. That turned out to be a cruelly false hope. The terrible twos were just what everyone said to expect, but turned out to be a forecast of what was to unfold. Things got steadily worse.

I became very stressed out. When you feel challenged beyond your abilities every day, the result is a feeling of inadequacy, hopelessness, and resentment. I became overwhelmed with anxiety and depression and had to have that seen to.

Meanwhile we arranged for Ben to have private speech therapy. It was expensive enough to mean making some budgeting sacrifices, but it was state of the art. I've still got a slick collection of videotaped sessions, many of which show Ben's most fearsome, back arching tantrums; screaming, throwing toys, scattering pages, kicking at walls, furniture, and people. The therapist was invariably calm and patient. I was invariably in the next room wishing I was anywhere else. I think the therapy did help, but it didn't work miracles.

Ben, we learned, was echolalic. That was why he was so good at imitating the sounds of speech. He gradually picked up a small number of words which indicated he could hear, but nowhere near enough of them. He still screamed many times each day, from frustration, and anytime he didn't get his own way. He was a nightmare for the young women at several daycare centers, where I enrolled him two days per week so he could socialize and I could have a break. bewildered, they would generally give in to him so he'd stop screaming. Taipan and I differed on how we handled the tantrums. I thought we should be firm and consistent. Taipan would let Ben have pretty much whatever he was screaming for. Sometimes he'd try to resist, only to concede a short while later. That had far reaching consequences on Ben's behaviour. He's a smart boy. He learned that if he displayed his loudest and most violent sounding protests, most adults would do whatever it took to make it stop.

Believe it or not, for me the diagnosis of autism came as a relief. By then I had been listening for almost two years to concerned preschool teachers and special needs advisors. Educators aren't allowed to diagnose, but if they have concerns they find ways to suggest what they think the problem might be. They put information in front of me. They gently pierced the threadbare denial caused by the pediatrician's reluctance to make the diagnosis. I think the doctor meant well. He didn't want to be the one to break our hearts. But a diagnosis became what stood between us and the early intervention therapy that Ben needed. There were forms to be filled out. And that was how it happened finally. There was no devastating pronouncement in an antiseptic consulting room. Instead the anguish made itself known over time.

I came to a purposeful acceptance long before Taipan did. I've been told that is not at all an uncommon reaction for a father to have. The absence of a diagnosis was the hope he clung to. He applied an 'all or nothing' thought process to the problem. If we didn't have a diagnosis, this couldn't be serious. It had to get better. He never intended to be hurtful, but occasionally he would be angry in my direction and at the teachers with all their bad news.

"You're all only seeing the negative things! Do you seriously believe that you and his teachers know more than a DOCTOR?" His resistance only added to the stress of dealing with the problems. For a while, it may have even prolonged the confusion.Without realizing it, he'd developed a way of masking many of Ben's deficits by carrying him in to the office of whatever doctor or therapist we were seeing. He'd hold Ben, or quickly pick him up again if Ben was getting into drawers and cupboards or clicking light switches or other compulsive behaviours.

Taipan would talk to Ben constantly, even answering questions for him, and Ben would echo the words. Taipan is engaging and very funny in conversation. People love his stories. He now had an adorable sidekick. It was a perfect ventriloquist act. When I realized what he was doing, and called him on it, he blankly insisted it wasn't so. It took the intervention of the speech therapist one day, who bluntly told him to stop prompting our son.

Eventually even Taipan's stout resistance was worn down, and he caught up with everyone else. It was not a satisfying process to witness. A sad consensus was reached. I met with the doctor and asked him to please just write it down.

Ben did learn to talk, in a mad rush, in about ten weeks. Better late than never, of course, but by then the social and behaviour issues had blossomed. He was still winsome and cute, but he was increasingly difficult to live with. He developed fears and obsessions. He displayed Oppositional Defiance Disorder (ODD) and his behaviour was at times disturbing and destructive.

When he was nearly five, the speech therapist arranged for us to meet with a psychologist. This man is a noted authority on autism; he's generally the person news media interview whenever the issue of autism makes the headlines in Australia. He suggested we medicate Ben's symptoms of ADHD. Ben's brain is overwhelmed by sensory input, we were told. Imagine his head filled with static that he can't make sense of. He said that the drug would calm all of that down, and that he'd be able to listen and concentrate on speech, as distinct from merely hearing it. The prediction was that Ben would be talking within three months. While these drugs aren't for everyone, they have worked in our case. That's exactly what happened.

That psychologist was the first professional to address what effect all of this was having on me. I hadn't even realized that no one else had until he brought it up. Suddenly tears were stinging my eyes from this unexpected kindness. "You must find this really difficult. I'll bet Ben is a daily headache generator." I nodded.

Another helpful insight was, "You are Ben's favourite toy. He's a smart little guy and he's figured you out. He knows if he presses the buttons in a particular way, sooner or later you'll explode." That certainly summed up the dynamics of most days.

The psychologist did get one fairly big thing wrong, though. He revived hope that perhaps it wasn't classic autism. More like 'autism lite.' He said that perhaps Ben fell somewhere on the spectrum, but if he did it was the less bothersome end of the scale. I wept. I can't blame him, though. It was an observation made during one 45 minute consultation. Ben was in a familiar place, his speech therapist's room with lots of toys. And Taipan was doing the charm and ventriloquism thing for all he was worth. It wasn't just me who noticed; the speech therapist raised eyebrows and cleared her throat at him several times.

Since his big language breakthrough, Ben seldom stops talking. He demands attention all of the time, which can be exhausting. He has not learned when to modulate his voice. Or to wait his turn to speak. Or care much about what topic others might be interested in. He interjects abruptly with whatever he's obsessing on at the moment, almost always in a loud voice; it's as if his CAPS LOCK IS STUCK ON.

Ben will say aloud whatever is going through his thoughts, which can be socially awkward. Even when it isn't awkward, it can still be baffling to people. He doesn't understand that others aren't thinking about what he's thinking. If something is interesting to him, he can't imagine others being unaware or indifferent to it.

When Ben was two, before his disability became obvious, we had a second baby. I was thrilled when another boy was born. Two boys, I thought, could be friends. You'll be pleased to know that they have a completely normal brotherly relationship: they fight with each other like little vikings. All day long.

Linus was six weeks premature, but soon caught up in size and weight. He was affectionate to the point of being clingy at times, but unlike Ben, I really felt Linus was giving me plenty of love in return. He still does. He is a very comforting child to be around. Ben will cuddle, but only when he needs it.

Linus mastered walking a little later than Ben did, but then his brother was jealous of him and pushed him over a lot. Linus was eager to be up and around, and exploring. He seemed to be developing normally. Except he didn't speak. His second birthday came and went. I began to have a definite 'Here we go again...' feeling. It turned out I was right.

Much less time was wasted in denial during the second round. I took the initiative and pressed for a diagnosis. I'd gotten over that label shock that I'd worried over with Ben, and knew that the intervention that Linus required depended on the word 'autism' being inscribed on the right forms. Well, we know how to do all this now, don't we? I took the forms with me to the kindly old doctor, and we filled them out.

03 January 2008

Reality: Get in Touch

I live with people who are never fully in touch with reality. Sometimes they are out by quite a long way and their behavior makes you wonder:

"What on earth are they thinking!"

Of course this is the case for anyone living with children for any length of time. You know that the way they see things is not often sensible. You know that their thinking is not your thinking, and as a result your thinking has to adjust.

Suddenly you've got to be able foresee potential calamities. It's you who has to shout the traditional portents of doom, such as "Stop that or you'll put someone's eye out!" And so forth. You already know them all by heart. You may have imagined parenting would be entirely different, but essentially your job, apart from feeding them and hosing them off, is all about minimizing the damage they do. It's fixing things that break, and preventing them from really harming themselves. For years and years....

It isn't easy.

I'm sure daughters come with their own set of challenges, but in my experience little boys seem particularly ingenious at locating mayhem, and then hurling themselves into it. On any given day this might involve jumping off of high places, running into things, throwing lethal objects, blunt and sharp, at each other, or simply falling over. They wake up in the morning spring-loaded, looking for opportunities to test the durability and strength of themselves, each other, and anything unlucky enough to be in their way.

All too often you'll hear the peals of laughter as the children lose themselves in a boisterous game. Beware the instant they begin to sound hysterical. Every parent knows the pitch of that whooping, gladsome, noise is a warning and can predict the outcome in advance. Really experienced parents can time it to the second. A shift in the harmonics is your signal that the game is just about to degenerate into what you hope will be only minor injuries. What you will be hearing next, right on schedule, are the outraged howls of pain.

"Haven't I told you a thousand times not to...[fill in the blank]"

Of course, quiet can set off alarm bells too. Every parent knows the hair raising chill of that ominous silence, and you ignore it at your peril. It nudges into your head. You realize with a deep unease that you were actually hearing yourself think for a minute, or were able to do whatever you were doing without a hundred interruptions. And that is just completely wrong. You know this. You remember how it was before the children, when you had what seems now like all the time in the world to concentrate and get things done. And even though you have learned that these things are now unfordable luxuries, you might allow yourself a moment to think it over anyway.

"I'll just finish what I'm doing here...."

It is so tempting, I know, but experience generally reveals it to be unwise. Don't do it. Whatever you gain by prolonging the unnatural peace and quiet will be as nothing to the pure devastation you already know you're going to find when you go looking for your offspring. It only gets worse if you delay your investigation.

Like most others, my children don't ever seem to see trouble coming. Clearly every day their world is entirely new and fascinating in it's unpredictability. I believe this is normal, even if my kids are not. I have two young sons, aged eight and eleven. They are both autistic.

With autism, the unpredictable becomes the norm. It's a daily occurrence, and so becomes in its own weird way predictable. You know that one or both children will go off at some point during the day. Sometimes you can fix it, and sometimes you can't. You have to continually remind yourself of that, because the first few years come as a shock. They come as a series of shocks. You eventually learn to look at the world in an entirely new way. The triggers vary from one autistic child to another. You might have to learn to recognize some sounds as intruding, disturbing noise, as your child does, or see things like glare or an object out of place as a potential problem. You try to head them off. Or, failing that, you just try to be ready to deal with the meltdowns when they happen.

Luckily for me I grew up with one or two family members, most noticeably my mother, whose grasp on the here and now was tenuous and intermittent. Peace within the household was brittle, and it was very hard to know what might set off the maternal volcano. The upper slopes of Mt. Fran were nearly always fogbound and grumbling in a vaguely threatening way, but she could and did go pyroclastic over any little thing. It might be something that hadn't ever bothered her before. Who knew that dodging the sudden explosions, and the pelting rain of rocks and ash, would turn out to be the ideal training for life on Planet Autism.

01 January 2008

The Best Day of the Year

Let me paint you a picture.

It's hot. Summer has officially gotten underway, and because this is Australia that means that not only are the children crazed because "Sho-o-o-ol's Out For The Summer", they are also increasingly unhinged because it's the middle of December, and Christmas is bearing down like a shiny, gift-wrapped steam roller. Here in the sub-tropics, Santa doesn't venture outside the refrigerated confines of the shopping malls because if he did he would die, thus instituting a new tradition to add to an already confusing set of holiday rituals.

I wouldn't like to say that I hate Christmas, although for the most part I seem to be fundamentally over it. I am sorry about that. I wasn't always this way. Back before I had the entire responsibility for making it all happen at my house, I was very much a Christmas person. I probably irritated a lot of people.

The Christmases of my childhood might offer a clue, but I can actually recall from the dusty archives of my memory holidays that didn't completely suck. My younger sister and I witnessed a private miracle every year. Our crazy mother, Fran, usually declared a Christmas ceasefire and amnesty that lasted for perhaps three days. For some reason she managed to guilt herself into action while our maternal Grandmother, a pro at this game, corresponded with Dad. Between them, this uneasy triumvirate would deliver the goods. Things we genuinely wanted would appear. Cool new toys and a brief, if brittle, peace to enjoy them. Who wouldn't love that? Needs can be simple that way when you're a kid. Tangerines and chocolates, candy canes and the smell of new Barbies straight out of the box. The soft glow of that usually stretched until somewhere close to midday on the 27th. By then the effort of maintaining an unnatural state of equanimic goodwill would cause something in Fran to snap like a rubber band. Hostilities would resume, prison rules would quickly be reestablished; and Fran, doubtless with huge relief, would return to her default settings of resentful, angry malice within a nearly impenetrable fog of prescription drugs.

Now Christmas is up to me. Months of careful budgeting, and unwelcome reminders tend to rub my nerves in an unpleasant way.

Perhaps that is why I recently found myself tempted to shout "And you can shove it!" at a shopping mall Santa bellowing "Ho ho ho Me-rrrry Christmas!" for all he was worth and clanging a large hand bell. I mean to say, the promotional side of things become unbearable well before December. The Christmas decorations have been on display in some of the shops since late August. I really dislike that. And as the day creeps up the displays in the stores become larger, tackier, and more difficult to steer around and ignore. I don't want to think about Christmas for four months of the year. Instead, my thoughts are invaded by all the lugubrious sentimental favorites "White Christmas" and "I'll be Home For Christmas" whinging out of each and every public address system anywhere you go. Including the auto parts store.

My personal history aside, having the festivities take place in a furnace sucks every last bit of yule out of the tide for me. I'm not alone. Hot weather and holiday/money/family pressures make many people fiercely cross and/or depressed.

I would hasten to mention that I am aware that many people do enjoy Christmas, in all its tacky glory. As I said, I used to be one of them before responsibilities and a decade of working in retail during the holidays drained me of cheer. Never mind. I don't want to ruin it for anyone else. I genuinely feel that being too sour about it myself might dampen the high spirits of others. I'm not a spoilsport. I make an effort to put on a happy face. I enjoy giving gifts as a rule. High spirits are important, and shouldn't be squashed or otherwise mishandled. As I would the soft and vibrantly aromatic Queensland peaches and mangoes, the sole gifts of a subtropical summer, I pass the season's greetings along with good natured care.

Christmas in midsummer is a mish-mash of Christian and Pagan European winter traditions held in a sauna. I thought "Are they kidding?" No, they are not, as I would discover when I moved to Australia from the U.S. in 1990. A Christmas Day so hot already that bauxite could have been smelted in the kitchen before lunchtime. From inside a cloud of steam my mother-in-law whipped, seared, roasted, chopped, boiled, basted, and sweltered herself for hours to produce a scalding English style feast. The finale was a volcano of plum pudding doused in brandy and set on fire at the table. It was beautiful, no question, about it. But no one actually wanted to eat such a hearty meal because the powerful heat and humidity had wrung the will to live from us all.

There's no daylight savings time in Queensland which is a long story in itself. It is full daylight before 5:00 am. The children are up because after months of build-up, there's no holding them back on the actual day. Carefully wrapped gifts are torn into for a brief frenzy of unbridled joy and flying paper. I snap photos because later when my eyes open I'll want to see their happy faces. If I'm quick I might get video footage of the first of innumerable fights over identical toys. It's all over before 6:00 am.

My preferred way of dealing with a hot Christmas is to cook a turkey on Christmas Eve. It's roasted in the thin cool of the night. I might do a pineapple glazed ham as well, also done ahead of time. These are served cold with salads and chilled fresh fruit. And whatever anyone would care to drink.

I make sure there is enough food to last throughout the very best day of the entire year. Yes, there is a day that brings unfeigned happiness and glowing goodwill to my heart. It is the day after Christmas, called Boxing Day, an extra in the holiday tradition of the British Commonwealth. There are several theories about why it is called boxing day, most of them seem to have something to do with giving servants the day after Christmas to spend with their own families. Boxes of food and gifts would be sent home with them. Nowadays, in practical terms it means the person responsible for organizing the whole show, i.e. myself and millions of other mothers, have a day when nothing is required. There are leftovers to eat. There is cricket on the television, a game which generates a relaxing background noise only occasionally punctuated by excitement of any kind.

And best of all, and I can't overemphasize this: next Christmas is as far away as it can possibly be.