31 March 2008

What the....?

Hey, how did we get to the end of March already? I presume it has been in the usual way, but from here it is speeding past.

I can recall instances of crushing boredom before I became somebody's mother. Time just crawled, with some afternoons threatening to stretch on into the next week if I didn't find something to do. Now I barely keep track of the date before I find it has moved on.

There has been a lot going on. I have decided to get into more of the classes that my gym offers. It's a 'ladies only' gym, which makes it very relaxed. Less worry about primping, none of the dust pawing steroid boys to drench the atmosphere with testosterone laced sweat. Not that there isn't a time and place for that, but it can be inhibiting. Without them, we can be a lot more casual, and much less concerned about what we look like.

Anyway, there are several other mothers of autistic children who are regulars at this gym, and it isn't too challenging to work out why. Exercise helps keep the mind calm and the body happy. It keeps us strong and springy enough for those sudden instances when a sprint is called for... these kids can really move. I've been doing weight training, cardio, yoga and pilates. To this I added another pilates class and a 'body pump' class, which is weight training really energetically, with lots of reps, to music.

My performance wasn't all that stellar in the first 'body pump.' I had taken a place near the back, and when the music began, I couldn't hear much of what the instructor was saying. She kept having to leave her special raised platform to thread through the others in order to correct me. If she told me more than two directions at once, I knew I was certain to miss some of it. I fell out of step quite a lot. I figured if I watched carefully I might be able to follow. This worked until the routine required us to lie down. Then I couldn't see the teacher or hear her. I did feel I'd had a good workout, and was stiff and sore the next day, so I got something out of it. Next week, I said, I'd get there in time to grab a place closer to the front.

There is one mother who is often at the gym when I'm there. Her son is autistic, and close to Linus' age. He is fascinated with broken glass, and if he gets the chance, will chew on the bits, oblivious to pain or blood. My two don't try to eat broken glass, for which I'm grateful. This mother tells the most hair raising stories, but here's the thing: She's a cheerful, happy person. She laughs often, and it's contagious. People like to be around her. I'm fascinated with how someone can face such difficulty, so many regularly occurring crises and be so clearly happy and cheerful. She says she has her moments, and I'm sure that's true. But her baseline, her default state, is one of happiness.

I love talking with her, because I'm dying to know how she does it. I'm making an informal study, and if I learn any techniques, I'll be certain to write them down.

08 March 2008

Doing the Dance

I had to go along to Linus' class at Autism Queensland this week.
I'm generally resistant to these occasions, if that's the right word. Resistant, like a cat about to be given a bath. I have managed to wriggle out of a whole bunch of these, and that is because they are usually not much fun.

There's one in particular that still makes me want to groan when I remember it. It was intended to celebrate Mother's Day 2005. I was ill, as it happened, with depression and anxiety. A physician decided I should try a course of hormones that day, which made me instantly nauseous, as well as teary and miserable. Linus' teacher at the time had done two week's worth of arm twisting so I'd remember to turn up early for a special afternoon tea and a little show, so there was no way I wasn't going. Each time she mentioned it, it sounded as if she had only just thought of it: "Oh, by the way..." with no reference to the previous reminders. I played along with this, cheerily saying that I'd make a note of it as if it was the first I'd heard of it. I didn't really want to attend, but I tried to be upbeat about it.

The thing is, I turn up, and then I remember why these things are usually so painful. In spite of feverish preparations on the teacher's part, I know that my sweet little kid isn't going to do the little D.A.N.C.E. or whatever...

Depending on the school, Linus' autism has put him in classes with other children whose difficulties have varied widely. There have been children with intellectual impairment, and children with physical disabilities.

I am in awe sometimes at what they and their parents have to overcome. There was one little boy wheelchair bound because his bones tended to break easily, and he had no pain sensation to tell him that he'd hurt himself. On that day, even this kid was having a go at the counting song tootling out of the cd player. Other children were dancing, as best they could. My son was under a table, crying, with his hands clamped over his ears. I wanted to join him. I don't think anyone had noticed that I'd gone green at the offer of scones with cream and jam prepared by the children. My son is adorable, but his hands are always sticky. I might eat something he prepared but only if I could personally verify that his hands were clean and didn't stray during the entire process. I had to pass on the sole choice of earl grey tea, which I dislike even when I'm not sick. The teacher, full of energy herself, prodded all of the stressed and weary mothers to put down their refreshments and dance, too. Wishing to be a good sport, I got up and tried to coax Linus out, but he wasn't having any of it. I knew he wouldn't. I didn't blame him, and even would have liked to join him under there. Instead, I found myself shuffling along with forced bonhomie with another child. Linus stayed under the table until it was time to go home. We were both glad to get out of there.

I feel bad that I feel that way about it, but I've been through a lot of these. Sometimes they've been in amongst a mainstream class, and so when they can't or won't do whatever is being presented, it's especially noticeable. To be confronted with your child's developmental delay never fails to feel exactly like a kick to the guts, only you have to smile encouragingly anyway, as if proud moments like these are all you live for. I'm never sure if I'm fooling anyone, but I really do try not to let despair cloud my features.

Eventually Ben did manage to figure out that if he did something clever or amusing the approval and encouragement he'd receive was something he could enjoy. In particular, there were a few book character costume parades that went well, one of them because I was in the parade, in costume with him. The same approach hasn't worked with Linus. He isn't interested in performing. He doesn't like groups, and totally loses his cool in crowds. He wants no part of it.

So with all this behind me, there I was this week at Autism Queensland. I found myself sneaking in a crouch around and behind the building, commando style, led by a member of staff. Neither of my children were to know I was there, and especially not Linus, whom I would be observing through a back window.

I've had remarkable luck with finding the most wonderful teachers and therapists. If I've done nothing else of consequence, I've at least found the right people to help. This particular teacher is omnicompetent; infinitely patient, always tactful, kind, and persistent. She has made definite progress with Linus in the last year. I begged out of class visits for most of that time, but when she sent home a note this term asking if I would consider attending, I wrote back asking her to recommend a session. She indicated that a numbers lesson would be good for me to see, and so this was what I was watching through the window.

Linus isn't showing any savant abilities, but he does seem to like numbers and to have a grasp of them as symbols and quantities. He was able to count along by tens to 100 during this session, and to say what number was missing when his teacher erased one in the sequence. Two of the other boys in the room were distracted because they saw me, a stranger, peering in at them through the window. I smiled and waved, but really, what were they to make of it? It was awkward enough sneaking around as we had. Most schools are sensitive about that kind of thing, and we did attract attention. Luckily Linus didn't see me until we wanted him to, so that part was successful.

His teacher then told everyone that "Linus' mother is here and will be joining us..." and in I came. Linus was immediately distressed, and threw himself onto a pile of cushions so he could express that by kicking and howling for a while. I took a seat and didn't say a word, but I was thinking that was why I hate these visits. There's nothing to see because my child goes all to pieces. Discontinuity is a big thing to autistic kids, and I'm in a place where I don't belong. It throws his little world into shambles.

I have to report that for the first time ever, after only a short tantrum, Linus collected himself and came to his place at the table to do some more work. He did three worksheets with help, but he did them willingly and his answers were generally right the first time. His teacher was helping him, but she was also having to keep a grip on another little boy who constantly hummed around the room like a deflating balloon, sound effects and all. It was the first time my son has been in a classroom and not been the most distractable child there.

I didn't attempt to intervene at any stage, because imposing my authority over the teacher's just causes greater confusion. I just sat and watched. And was pleasantly surprised.

We discussed some of Linus' drawings, which are becoming increasingly of interest. He has taken to drawing in much of his free time, and some he's getting better at it.

When it was time for me to leave, the timing turned out to be ideal...In the past he'd want to come with me, and would again be loudly distressed. This time, he knew that he was going swimming, and nothing would have induced him to come quietly with me and miss out on that. He blew me a kiss and sang "Bye!"

I left feeling pleased. I'm glad that his teacher had again suggested I come. I did see some improvement in his abilities to control himself and participate in class.

04 March 2008

The Computer Ate My Post!

I wrote last weekend's entry intending to give it a final polish, but when I opened the file, it was gone. Instead, the previous post was there, which I had deleted from the workspace before I started. I was crestfallen, as you can imagine, but decided after only a brief whimper to be brave about it.

I didn't think I'd written a whole post without saving even once. In fact, I vaguely remembered being interrupted several times by Linus the Younger, and virtuously saving my work whenever I left it. But I had to admit the shadow of doubt. Due to a life-long tendency to absent-mindedness, I had to allow for the possibility that I might have neglected to instruct my computer to save on each of the occasions when I thought I had, including when I turned it off for the night. However unlikely that seems. I mean, I'm usually very careful. We live outside the city, and are subject to random power outages from time to time. I've learned not to type for more than a few minutes without hitting save. I only had to lose an hour's work once or twice before I cottoned on.

Temperamentally, I hate having to do things over. I really mean it. Because here inside the natural chaos that is my life, I feel as if I have barely have time to do most things well even once.

Anyway, I attempted to recompose what had been, let me tell you, a brilliant post. It had wit, and timing, and would have transformed all our lives. I made most of the same points, but felt the muse had fled, or gone for coffee. I was going to have to return to it the next day and buff it up a little. While I worked, before witnesses, I tapped the 'save' icon only slightly less often than the space bar. And at the end.

The next morning, I opened the file, and it was gone again. There was the previous post, the one I'd deleted twice in order to use the space in this, my favourite writing program. I use Writer's Blocks (and they are unaware of this unsolicited product placement, but if they wish to flatter me with sponsorship, my door is open. A free trial version of their truly nifty software is available, by the way.) I like Writer's Blocks because I can fill as many virtual note cards as I wish with whisps of ideas as they come; phrases, anecdotes, cross references, etc. It's very handy to be able to toggle between my note cards and manuscript. So that's why I don't just use any old program.

I don't know what's wrong. Perhaps the naughty file somehow got itself corrupted. To be sure, I'm now backing up to another file as well, but now that I've taken to that neurotic precaution, guess what? It's all working perfectly, just as it has for the past couple of years. I've switched off and returned several times and this effort has been just as I left it. No further surprises.

I have, however, ditched the missing posts. I won't try to recreate them. In the interests of balance, I didn't want to continuously detail Ben's idiosyncrasies without mentioning his brother. Linus doesn't get up to nearly as much mayhem, but he is having some continence issues lately that I've been finding troublesome. Well, never mind.

Should I have been writing about that? Well, apparently the computer says "no".

23 February 2008


You know how I mentioned all the big, tough kids in the senior school? Each potentially waiting to do my awkward, little Ben harm? Well, you can imagine the thoughts of mayhem that raced through my mind after school one day last week, when I drove up just in time to see Ben spitting out a tooth. I could tell this from quite some distance; there's nothing quite like the body language of transferring a sticky tooth from your mouth into your hand.

"What happened?" I asked, trying to keep an even tone, free from swear words. Life with Ben can be hard on the nerves.
"My tooth just came out. All to itself. It happens sometimes?"

Ben always says "to itself" when he means "by itself". And the 'it happens?' is a frequent question because he always seeks reassurance when things go, from his point of view, quite wrong. He knows that his teeth should generally be firmly in his head.

I examined his mouth. It was a baby tooth; one of the very last ones.

Whew! So he wasn't in a fight. Such relief!

Teeth have always posed a special problem for Brendan. I mean to say, he has a full set of them and they are lovely. He shouldn't need any orthodontic work, and he's obsessive about brushing them twice a day, so they should stay put for a long time. But the trouble started when he was about five months old, when that first set started coming in. He really suffered with each tooth. Weeks of acute pain, swelling, fever, runny nose, and wailing misery.

I didn't realize at the time that autism would have been making the sensory information his mouth was sending him seem overwhelming. I just knew that for my baby boy, paracetamol drops and anesthetic gel were the way to go. I tried a couple of different brands, actually testing them in my mouth first. I stayed with the one that left me with a blissful patch of no feeling at all when I dabbed a little round blob on my tongue. Then I gave it to Ben, and he stopped howling and was happy again. That was how we got through the trials of cutting teeth.

One of Ben's characteristics is that he becomes v. distressed when things aren't as he is used to. Making adjustments and compromises are not things he can easily do. To a certain extent, the Taipan is of a similar temperament. A small example to illustrate:

One day when he was in the early stages of toilet training, I heard Ben squealing in anguish, and then heard Taipan calling for me in a voice pitched high with panic. I naturally raced to the toilet, to find Ben in tears and Taipan alarmed. "Do something!" he pleaded.

What had happened was that Ben had gotten an erection, plain and simple. These things happen to little boys, and aren't a big deal. The trouble was, he also had a full bladder and really needed to pee. The erection wouldn't let him, and he was uncomfortable. He had no insight that this was natural, and temporary, and the sight and sound of his adored father, all 6'3" of him, behaving like a headless chicken was doing him no good at all.

"For goodness [sic] sake stop shouting!" I snapped. My eyes rolled heavenward, which they quite often do when I'm around Taipan.

"Why on earth are you making this into a problem?. Then I softened my voice, and patted my frightened little son's back.

"All you need to do", I said sweetly, "is comfort him, and tell him that this is normal, that it will settle down in a minute, and then he'll be good to go. What you don't want to do is escalate his terror by panicking and yelling for me as if I'm some expert at killing erections..." A galling concept.

Honestly, it was at moments like these when it felt like I had an extra child. One who was tall, and hairy, and over 40.

A similar crisis occurred when Ben lost his first tooth. He had long been in the habit of breaking things around the house; many, expensive things for which he was yelled at. And so when a tooth started to swing around in its socket, he genuinely thought he'd done something bad. His distress at this was heart rending. This time Taipan and I were on the same page.

Mind you, Taipan wanted nothing whatsoever to do with removing the tooth. He can't deal with blood in even small amounts, so all minor surgical matters fall to me. But he did understand by then that Ben needed a lot of reassurance. When the tooth came out, we made an enormous fuss over him, told him it was supposed to happen, and that he'd get a nice new one in a few weeks, a grown up tooth. Ben had really been spooked, and so needed quite a lot of comforting to get his head around such a concept as teeth coming out and it all being okay.

When the second tooth came out, he was upset, but not as much as before, so we thought our method of calm, knowledgeable parenting was exactly right. Good for us! The second one needed only a quick pull from me, and a quick rinse on Ben's part. Ben loathes blood, much like his Dad, but he seemed to accept this as par for the course. Taipan was out of town on business, so it fell to me to tuck Ben and his tooth into bed for the night. I even took a picture to celebrate the milestone (see above). That was at 7:30 pm.

Nearly two hours later, I was on the computer in a room all the way across the house. I was deeply absorbed in something I was doing when Ben came charging up behind me whooping in triumph. His hand was raised, and a tooth was in his grasp. A different tooth. Blood trickled down his forearm and dripped onto the carpet. His T-shirt was spattered.

Oh. My. God. He'd so taken to heart my assurances that it was great that his teeth were coming out that he'd spent the past hours working loose a tooth that wasn't meant to come out for years yet. In fact, it was the twin of the one I was telling you about at the start of this post. I did not handle it well. Poor Ben. He thought he was being helpful and good. Unfortunately this was one of those moments when his mother, who had only recently thought herself calm and wise, succumbed to her horror and frustration and morphed into a red faced, screaming monster. I always wanted to be a fun kind of mother, not the one you can hear down the street....

By then we were pretty sure we were dealing with some kind of autism, but the adjustments we would have to make had only just begun. Such as how to make Ben feel secure about the loss of a tooth without making him feel so nonchalant that he decides to remove them at random. When he gets an idea into his head, its not only very hard to get it out again, but there's no predicting what shape it will take as it settles in.

A bemused dentist tried to help me explain to Ben that he mustn't do that again., and I'm pleased to say that he didn't. He does still get visibly wary when a tooth gets loose, especially loose enough to spit out just as his mother drives up in her car.

09 February 2008

The Slopes of Mt. Paperwork

The first week back at school has presented its manifold challenges. For a start, the blizzard of paper begins to blow in and accumulate. With two children in two schools each, it arrives each day by the bushel. And evidently I'm expected to not only read all of it, but interact with it, too. I don't mean to complain. I know the teachers, bless them one and all, work very hard writing all of these projections, reports, evaluations, and general information.

And obviously I need to know these things, so I shouldn't grumble. The trouble is I can only absorb so much helpful information. I quickly reach a saturation point. A distressing apathy sets in. It seems to prevent me from taking a more scholarly approach, becoming an amateur expert. It also hinders me from taking on the admirable (but for me wildly overambitious) notion of home schooling. The very idea gives me a sharp pain in the head. I feel bad about this, but what can I do?

One teacher sends home a daily report, and I have to sign it to let her know I've read it, or she gets annoyed. I cooperate, but I do feel a little resentful. I mean, I thought I was finished with bossyboots school teachers decades ago.

Some of the exchanges leave me feeling a trifle inadequate. The following is typical:

--Ben had no hat today. Can you please make certain he has one in his bag. So many students don't seem to have their hats.--

I answered:

--I always put a hat in his bag. Ben likes to take it out and lose it at the first opportunity, because he's figured out that if he doesn't have a hat, he has to stay inside and play computer games. I am putting it in again right now.--

And so on.

A better mother would, I feel sure, throw herself at every scrap of research, and explore every avenue. Be willing to try any treatment, however crackpot, that offered the slimmest hope. Naturally, if someone finds a cure we'll have some of it, thanks very much. But I'm skeptical and resistant to most of those.

I know there are adult autistics who take the view that they wouldn't have anything to do with a cure should one become available. They express pride in all that they are, including their autism because it makes them who they are. Regardless of whatever difficulties they have as a result. I applaud that attitude, and think that it's just as well. As far as a cure goes, they have nothing to worry about I far as I can foresee.

I have read some helpful things. I love everything I've heard or read by Temple Grandin. She's fascinating, and articulate enough to provide a window into her world of overwhelming sensation. Her insights never make me glaze over.

I have two books by Dr. Bryna Siegel. She is scholarly, and sensible, but those I have to dip into and read in small bites. This is no disrespect to Dr. Siegel. The fault is entirely with me. I can't go for more than few pages before I realize that I'm not actually reading, but day dreaming. My eyes have skimmed the words, but their meaning hasn't registered. The consequences of overload.

What I have done right, though, is to find the right teachers and therapists to help. They have read all the books, and can apply the insights to the boys, and then share them with me. I often learn difficult concepts more quickly and easily if someone explains it than if I read it for myself.

The early part of the boys' week is spent at Autism Queensland's Brighton Campus. The good people there are very well equipped for a seriously difficult job. Obviously each and every one of them have to be very special people to take it on. I only have to think about a roomful, or a busload, of children like mine to know that I'm not one of those special people.

I never aspired to be. I thought I might be a reasonably adequate mother, when I thought about it at all. I didn't want kids when I was in my twenties; I was too immature and wanted to stay that way. I actually got to my mid-thirties, married but still thinking there was plenty of time to decide. Then Taipan's biological clock gave us both a fright when it suddenly went off. He was inexplicably in the clutches of baby lust. At first I expected it would wear off, as so many intense enthusiasms do, but no, he would bring it up every day. Over breakfast, when I never, ever want to discuss anything. Then, just when I thought he'd gone for the day, he'd phone from his car.

"I think we should have a baby!" he'd shout, as if the idea had just occurred to him.

"Do you? Okay, noted...."

I was worried. I often am, but this seemed like a huge leap into the unknown. I was sure I could take scrupulous care of a tiny infant. All going well, and apart from the sleep deprivation, it's pretty straightforward. But what to do when they reached the stage where they were big enough to harm themselves but nowhere near old enough to reason with. Teaching them things, instilling a set of values, keeping them from the allure of danger while also making them happy-- it seemed like a massive task, and one I instinctively knew was going to be mostly up to me.

Eventually my own hopes and dreams of a family asserted themselves, and I did agree to the project. I was still concerned about my abilities, and as it took ages (I'd always assumed that in the absence of birth control I'd fruit within weeks) I had plenty of time to entertain my doubts.

Mothering is a skill set best learned from direct experience. Most of what I experienced was not something I could ever make use of. A helpful friend suggested that I would know what not to do. It was a start anyway. I comforted myself that all I had to be was better than my mother had been. Every day that I'd get out of bed, stay awake and actually take care of them, cook for them and clean up after them puts me ahead. More so if I can behave in a loving way towards them while I'm doing it.

I can certainly thank my mother for setting the bar so low. That may sound like sarcasm, but honestly, I am increasingly, genuinely, grateful for some of those early life lessons.

02 February 2008

Back to School....Oh, the Euphoria!

This has been a seriously good week. I had a big win on Monday; I taught my son Ben how to tie his shoes! It wasn't the first time I'd tried to teach him, but it was the first time he came anywhere near to getting it. It turned out that it was me that had to change in order for him to understand.

Both boys have grown over the holidays. They play hard, and sleep longer, and eat like industrial furnaces. Suddenly they both have much larger feet, and it's time to get them new shoes. Linus hates shoes, but will grudgingly wear sandals. For Ben we favor a leather walking shoe, and right up to size 5 they come with velcro closures. I admit I've embraced the velcro, which I otherwise don't much like, for the miracle it is with kids like mine. Alas, this year his barleycorns crossed the manufacturers line. No more velcro...I was obliged to buy shoes with laces.

I was nervous about this, but I resolved to sit with him, with my own similar shoes on, and help him master the art. It wouldn't do to be in grade six and not be able to put his own shoes on. I was taught the skill by my father, somewhere around grade one or two. I do remember the afternoon he patiently demonstrated the 'half-hitch, make a loop, pull the other lace around' method. I remember it was tricky, but I did learn it, and have always tied that way ever since.

Ben kept getting lost after the first loop. There were too many steps before you reached the prize. He couldn't see which strand of lace he should be pulling though. He was instantly frustrated, and embarrassed, and this triggered his habitual obstinance.

Then he asked me to draw him some pictures of the steps. It was about then that Temple Grandin came to mind. Dr. Grandin is a fascinating author and speaker. Autistic herself, she has a unique insight into the condition and the eloquence to describe her experience. One point that she make that has stuck with me is that autistic people are visual thinkers. They think in pictures.

I began to search online for pictures of how to tie shoelaces.

I found several helpful pages, and one that showed different methods. I realized that the way I'd been taught was too complicated for Ben, and a different procedure might be easier. I chose the two loops, or bunny ears method; a half hitch, make two loops and tie them in a half hitch also. Voila! I printed out the pictures, and we sat down again. I showed Ben how to do it a couple of times, and then he said he wanted to take the illustrations into his room and practice alone. He came out ten minutes later, grinning from ear to ear with his shoes perfectly tied. Everybody wins!

The next day, the school year began, which it does here in Australia at the end of January. All the little sweethearts, who look like babies to me, start grade one in their bright new uniforms. The public schools opened their doors on Tuesday the 29th this year, whereas the Autism Queensland school opted to start the following day. In the past, the long summer holiday has seemed so much like a prison sentence for all of us; me for obvious reasons, but also the boys, who get bored and more prone to meltdown without the routine. This time it was all so much better that (I can't even believe this) I offered Ben the choice of an extra day at home. Normally he and his brother would be at AQ on Tuesdays, so for the sake of avoiding confusion I was suggesting that they start on the Wednesday.

To my surprise, Ben was adamant! Given a choice, he chose school. I couldn't possibly argue with that, could I? I packed up their new lunch boxes and assembled all of the stationery into Brendan's new bag, a large grown-up boy back pack with optional wheels because he needs to carry many things between his two schools. I laid out uniforms and shoes.

Ben was up, showered, combed and dressed by 6:30 am. With his shoes proudly tied. I cautioned him not to announce it, in his fashion, to everyone at the school. I told him he could tell his special unit teacher, but not the scary big boys in grade six and seven. Ben is vulnerable to bullying. He can't see malevolence coming, nor understand that people frequently say what they don't mean. Sarcasm is utterly lost on him. Anyway, he's off with the big boys now, and could be targeted for a kicking. That actually happened last year, and so now the teachers are keeping an eye on him, as well as a few other like him.

So I didn't burn rubber skidding to a halt while dropping him off, a fond ream that has sustained me through many long, hot, holiday weeks. Instead, I went with him and helped him find his class. We walked to the far side of the campus, to the senior school block. The scary , 'Lord of the Flies' block. I had done some substitute teacher assistant work there last year. For an hour my task was to supervise, single handedly, several hundred big kids who'd been told to stay off the stacked tumbling mats left out by the gym instructor. Of course they ran and jumped and threw themselves and each other onto the mats. I had no defense against this; as soon as I'd cleared one pile of tangled big boys, the one behind my turned back would erupt. I didn't know any of their names, which is the only weapon a teacher has. It meant I couldn't write them up. One later teacher confided, "I try not to see anything that I absolutely don't have to." So, like, watching for a kid getting the stuffing knocked out of him or her, but not most minor idiocies. On the day of the tumbling mats, though, the kids all got overexcited and loud. It drew attention, which could only reflect badly on me. A burly custodian came to my rescue, shouting at some of the offenders by name. He plucked two of them out of the crowd and hauled them away to the office. I felt simultaneously grateful and humiliated, a blend of emotions that doesn't sit nicely. Naturally the remaining kids regarded me with scorn. I had less than no cred at that moment. Personally, I'd have settled for some pepper spray. When the bell rang I returned, badly shaken, to the much smaller children in the Special Ed unit. Some of them can be scary too, but they are smaller and fewer.

And Tuesday it was to this place that I escorted Ben, although I was the only one of us feeling apprehensive. He really is oblivious to how quirky he seems, and the snickers and stares of the normal boys, with whom Ben feels perfectly at ease right up until one of them kicks him. Luckily, I discovered that his teacher this year is a very capable man who taught Ben in grade three. He's brilliant with ASD kids, and boys in general. The Special Ed. teacher has been in conference with the class teacher, and Ben is to be removed from the isolated and barbarous senior area, going to the sanctuary of the Special Ed. unit for his meals and breaks. He's fine with that. He loves it there; it's air conditioned and there are computer games, and he's safe from bullying.

Because of that, I can feel as happy about Back to School as he is. I went shopping afterward, mainly for the novelty of walking around in a public space, free and unencumbered.

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.