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.