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Mister Fidget

George has been getting into everything lately.  And I mean everything.  He opens and closes doors, peers into the refrigerator, moves the lever on the dishwasher door back and forth, and sends the blender into a fruitless frenzy of activity. He gets into cupboards and removes things.  He finds stuff that can be poured, and he pours it.  He turns taps on and off. He has succeeded in deprogramming the remote several times. He finds things in squirt bottles and squirts them. He jabs the straw into those little cardboard juice boxes, and then gives an almighty squeeze to see the juice shooting up and hitting the ceiling. The light on the fish tank gets turned on and off so often that the poor fish have probably completely lost any circadian rhythm they had to begin with.

As much as George loves to fidget with things, turn things on and off, open and close things, pour things, he hates it when anyone else does anything. My attempts to cook dinner, for instance, are accompanied by this contant commentary.  Close the fridge. Microwave off. Close the dishwasher. Close the drawer. Close the cupboard. Leave the milk. Tap off. And on and on and on.  While all of this is going on, I’m tripping over a lanky seven-year-old who is darting around the kitchen trying to put things away, close things, and turn things off.

Running the kids’ bath last night was an adventure. James picked out two boats that he wanted to play with in the bath.  He put them in the tub, I started the water running.  I did what I usually do, which is to close the bathroom door and then go off to gather towels and pajamas while the water is running. When I went back into the bathroom a couple of minutes later, the water had been turned off, the tub was empty, and James’ boats were nowhere in sight. James, it must be said, was not at all pleased.

After a brief search, the boats were located in a toy box, and we tried again. This time, James stood guard at the closed bathroom door, like a miniature sentry. Gerard worked hard to distract George, who was repeatedly going, “Tap off! Tap off!” After what felt like seventeen hours but was in reality a couple of minutes, the bathtub was ready, and I turned the tap off.  George was instantly calm.

James was happy. He climbed into the tub and started playing happily with his boats, among the bubbles in the water.  George had kicked up such a fuss that I was not really expecting him to get in. But he ran off to get a few pieces of Lego, which he tossed into the water.  Then he calmly got in, sat down in the water, and played with his Lego.

When compared with a lot of the other stuff I have to deal with on a day-to-day basis, this behaviour is really not that bad. It’s just inconvenient and exhausting to deal with all the time.  There is, however, a giant silver lining to it: when George is engaging in this behaviour, he is a lot more verbal than usual. We are trying to look past the messes and spills, the fact that we have to keep replacing groceries that get poured out, and the general inconvenience of it all, to see the potential opportunities offered by the increased use of words.

Sometimes troublesome behaviour is a predecessor to a giant leap of progress. Even while I complain about the fact that it takes me twice as long as it should to get anything done, I recognize that this could mean exciting times for ourselves, and more importantly, for George.

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2010 Run for Autism 2:22:38

Last week I actually thought I was going crazy. I was leading up the Big Race, which meant that I was running 60% of my usual mileage.  Which in turn meant that I had this build-up of energy that I could not expend in the way I usually do, which is to lace up my running shoes and hit the road. As a result of all this, I was hovering around at home, engaging in these weird frenetic bursts of activity, filling up everyone’s Facebook walls with meaningless status updates, and generally being a bit of a nuisance. Thanks to over a week of very little sleep, I advanced about eight levels in Frontierville.

I started experiencing odd little aches and twinges – tightness in the glutes, a rickety left ankle, what felt like an impending cold – all carefully designed to mess with my mind and convince me that I was not ready for this race.  When I looked back at six months of training, I didn’t see all of the long runs I had clocked up, the hill training or speed reps. I saw the gaps – the long run I missed six weeks ago because of a cold, the two speed training sessions that I was forced to do on a treadmill because of my schedule, the midweek run that I had to cut short because of a thunderstorm.

I was, in other words, experiencing the phenomenon known to runners as taper madness. Some runners are able to completely chill out and relax during their tapering.  Others tend to bounce around inside their own heads as if they’re trapped in a pinball machine on steroids.  Guess which category I fall into.

On Saturday night I went around the house, setting every audible alarm I could think of.  The alarm clock beside the bed. The alarm clock in the living room. The timer on the oven. My BlackBerry. I was so paranoid about oversleeping on the day of the race (never mind that I had been too wired to sleep for a week), and I figured that out of all these alarms, I was bound to hear at least one of them. Of course, all that meant was that on Sunday morning, I woke up at 4:30 and had to creep around the house turning off all the alarms to avoid waking up the kids.

As it happened, my wonderful husband-to-be got me to the starting area without incident, with plenty of time to spare. I checked my bag – a remarkably efficient process, considering I was in a bag-check lineup of maybe 2000 people, and I was in and out of there in less than ten minutes. Then I made my way to a prearranged meeting spot for the Geneva Centre for Autism team photo.

As I lined up at the start line, I could feel those tight glutes, that rickety left ankle, the sense that I was getting a cold and therefore not in the best physical shape. But then magic happened. The starting siren went off and as the crowd surged forward, my glutes instantly loosened up, my ankle found stability, and I was breathing strong and clear. As I crossed the start line, I winged a prayer to whatever supreme being you happen to believe in, put a picture of my son George in my head, and went on my way.

I had a series of mini-goals to accomplish for the race. I knew that the Geneva Centre representative would be at around the 6km mark along with the photographer, so my first goal was to simply get to that point. Once I passed them, I would be almost a third of the way there! As I had thought would happen, I got a great boost of energy from seeing people I knew who were cheering my name, taking my picture, and waving a banner for the cause closest to my heart.

That energy boost was enough to get me to my next mini-goal: the 10km point.  I felt a sense of exhiliration as I ran over the timing mats, and shortly after that, I reached the turnaround point.  Now I was not only more than halfway, I was physically heading back towards the point from which I had started. I was getting tired and pushing myself harder than I had in my training runs, but by breaking down the large distance into smaller goals, I was able to keep going.

With 8km to go, I started running in 2km increments. I reasoned that no matter how rough I started feeling, I would surely be able to manage 2km. As long as I focused on nothing else – not the full distance of the race, not the distance I had run or the total distance that was still to come – if I focused only on the 2km segment of the moment, I would be fine. I told myself that if things started to get really bad, the only thing I had to do was get to the end of those 2km, and then I would figure out what to do next.

And sure enough, before I knew it, I found myself with 2km to go.  I was feeling completely exhausted at that point, feeling as if I had little or nothing left to give. I took one last one-minute walking break, took a deep breath, a braced myself for the finish. With 1km to go, I turned onto Bay Street, and then I knew I would be OK. I knew that the crowds of cheering spectators lining both sides of the street would carry me for the last several hundred metres. The crowds got louder as I got closer to the finish, and despite feeling utterly devoid of energy, I found myself passing other runners leading up to the finish.

I rounded the last bend, and the finish line was in my sights. Right on the other side of the finish line, I could see a welcome and familiar figure – my man, having talked himself into getting a media pass, was crouching there with his video camera. I dug deep, and somehow found a reserve of energy that enabled me to sprint for the last 100 metres. Two hours, twenty-two minutes, and thirty-eight seconds after starting the race, I crossed the finish line, waving both arms triumphantly in the air and smiling so much I thought my face was going to split in two.

Six months of dedicated training, almost $500 raised for the Geneva Centre for Autism (which was part of a total of over $35,000 raised collectively by the Geneva Centre runners), a personal best time for the distance that beat last year’s time by six minutes.  What a day. What a phenomenal event to be a part of.

Am I hurting today? You bet. Will I do it again next year? I’ve already started to plan the training!  My Run for Autism is over, but only for this year.

With Holly Bannerman from the Geneva Centre for Autism

With John Stanton, founder of The Running Room

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Turn, turn, turn

To everything there is, apparently, a season.  There is a time for the sweltering heat of summer to give way to cooler temperatures and later sunrises.  There is a time for the light traffic associated with school vacations to be replaced by the usual mind-numbing gridlock.  There is a time for yellow school buses to reappear, for kids to start new grades and new schools, for parents to high-five each other over the fact that their household has survived an entire summer at the hands of little hooligans.

For families living with autism, there is a time to anxiously ride out the tough times that invariably come with a change in routine.

And for runners approaching their major race of the season, there is a time to kick up the training for the long runs, and there is a time to taper and rest.

There have been a lot of changes happening in my family, many of them typical back-to-school kind of stuff.  For James, our youngest, the changes have been minimal.  He has just started Senior Kindergarten, although I must admit that I have a hard time thinking about a four-year-old as a senior anything.  He is in the same classroom at the same school as last year, he has the same teacher and many of the same classmates.  I can only hope that this year will involve less upheaval and trauma then last year, when the much-loved teacher of James’ class suddenly died.

James himself is taking the new school year in his stride.  In fact, he was somewhat irritated when the previous school year ended.  From the day school let out for the summer, James wanted to go back. For the last two weeks of the school holiday, I had to do a daily countdown thing on the calendar to maintain my sanity and also James’.  Now that school has resumed, he’s as happy as a rat with a gold tooth. Will he be like this five years from now? Time will tell.

Change is also afoot for George. Last week he completed his formal one-on-one IBI therapy. On his last day we attended a graduation ceremony held in honour of George and one other little boy who was completing the program with him.  The two graduates stood there proudly holding their certificates (laminated, to prevent ripping) and wearing their little graduation caps.  I looked at my son thinking of how far he had come during his two years in the IBI program. Gone was the completely non-verbal, isolated, uncertain little boy who started the therapy.  In his place was a smiling, happy child, still not exactly talkative but at least talking to some extent. He savoured the attention being lavished on him, and rightly so.

This week George started a new phase in his life.  We are fortunate that although his routine has changed substantially, the new routine at least involves the same places that he is used to, and some of the same people.  In the mornings, he is going to the same therapy centre where he did the IBI, and he is attending a “school stream” program (a simulated classroom environment where there is a teacher as well as a one-on-one support person for each of the five kids). In the afternoons he is bussed to school, where he is in a special ed class.  Over the next two years he will be gradually mainstreamed, the general idea being that by the time he is in fourth grade, he will be fully mainstreamed in a regular class, but with special support.

So far, the change in routine has not caused that much disruption. George seems to be enjoying school stream and school.  He likes the school bus, and as mentioned, both school and the therapy centre are places that he already knows.  So we may get lucky with this one – we may escape the usual transition angst that hits our household at this time of year.

And me?  Well, my run for autism is a mere seventeen days away. My training is peaking round about now, with intense speed workouts and long runs.  My final long run before the race will be this weekend, when I will be hitting the road for 20km.  After that I am in taper mode.  I will run less, pre-race jitters will set in, and I will be driving everyone crazy by the time race day arrives.

Oh, and George finally lost his first tooth.  He has already announced that he wants to buy another pineapple with the money left for him by the tooth fairy.

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Band-Aid solution

This morning I had one of those little moments with George that I love so much, one of those “Wow” moments that indicate progress. I was engaged in my usual frenetic morning activity – getting myself ready, getting James ready, trying to find time to cram some breakfast into me, trying to keep up with James’ constant chatter and questions about why birds have feathers. George was still in his pyjamas – his morning routine is his Dad’s responsibility – and he was wandering around counting in his sweet little sing-song voice. I noticed him heading towards the stairs, and somewhat absently, I said, “George, where are you going?” George replied, “Upstairs”, and upstairs he went. I continued with whatever I was doing, and it was only about ten minutes later, when I was trying to shoehorn a reluctant James into his socks, that I suddenly thought, “Holy crap! George appropriately answered a ‘Where’ question!”

George’s speech – or the lack thereof – is a source of deep concern to Gerard and myself. We know that he can speak – in other words, he has the physical capacity to do so. We know from the sentences that he constructs out of fridge magnets that he has the vocabulary and the ability to string a decent sentence together.  He simply chooses not to talk. I don’t think he has anything against it, he just doesn’t see the point of it. He doesn’t see speech as a social communication tool, he sees it as a functional tool to be used only when he wants something and is not able to get it himself. This is why, when George answers a question so naturally and spontaneously instead of simply giving me a blank gaze and going on his way, it is a big deal. We are starting to see these little glimpses into a world of language for George, and it never fails to lift our spirits.

We had one of those glimpses about a week ago, when I was in the house doing the never-diminishing pile of laundry (I have come to the conclusion that clothes in laundry baskets actually reproduce) and George was playing in the sprinkler in the back yard. All of a sudden I heard him cry out in what sounded like pain. With James on my heels, I went out to see what was going on, and there he was, sitting on one of the patio chairs clutching his foot.  I asked him what was wrong, and he looked me right in the eye and said, “I need a Band-Aid”.  James, bless his little heart, immediately said, “I’ll get them!” and he hotfooted it into the house. While James was inside, I coaxed George into showing me his big toe, which had a cut on it from a thorn on a weed.

Now, previously, George would have simply freaked out.  The sight of blood, even a little bit of it, scares him a lot, to the point where he can barely function. But this time, he had presence of mind to hold it together for long enough to identify and label exactly what was needed. Once he had communicated it to me, he allowed himself to fall apart a little. He was visibly relieved when James came flying out of the house with the Band-Aids, and once the wound had been covered up, he calmed down completely.

I immediately went through the sequence of events with him. George got hurt. George knew he needed a Band-Aid. George asked for a Band-Aid. George got a Band-Aid, and now George is OK. That simple reinforcement was intended to cement in his mind that when he speaks, things happen that relate directly to what he is saying.

Now, if only that were the case when I try talking to my husband while he is channel-surfing…

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The boys and the bees

When I got home from work on Tuesday, my younger son James greeted me at the front door with a blue face. It wasn’t that he had used his face as a Magic Marker canvas.  It wasn’t that he’d eaten a cupcake with blue icing, resulting in blue smudges around the mouth.  It was that he’d been on a field trip to the park and had his face painted as Blue, of Blues Clues fame.  It looked really cute, but it can be disconcerting to get home and find your second-born looking like a goofy psychadelic blue dog.

About half an hour later, James got tired of having a blue face, and he asked me to wipe it clean for him. I checked on George, who was running around in the back yard, and then, armed with a wet cloth and a four-year-old, I sat on the couch. I’d gotten about halfway through the clean-up job – meaning that James now looked even weirder than he had to begin with – when I heard a shrill scream coming from outside.

Seconds later, George came tearing into the house and launched himself onto the couch, still screaming.  I was suitably alarmed.  My husband flew out into the back yard to make sure there were no psychopaths lurking there, and I started checking my son for blood and broken bones.  Initially I didn’t see anything wrong, and the only indication of a problem was George’s ear-splitting screaming and frantic hand-flapping.  I tried to ask him what was wrong, but I didn’t really expect an answer out of him. Child with autism, limited verbal skills at the best of times, and in an absolute state – talking was not going to happen.

Suddenly he started scratching his legs frantically, almost manically. He scratched so hard that he actually drew blood.  That’s when I saw the bee stings – two of them, one on each leg. His first bee stings – no wonder the poor child was so upset.  I’ve tried to teach him basic safety, of course, but I’ve focused on things that posed an immediate threat. Crossing the road without looking. Touching a hot stove. Stranger danger. Internet safety. Somehow, the subject of bee stings has never really been a priority.  And so, in his understanding, he was playing outside and suddenly experienced unexplained pain in both legs. Add to that the physical hypersensitivity that is part and parcel of his autism, and we have a picture that is not at all pretty.

I did the same thing I always do when George is freaked out about something.  I opened my arms and wrapped George in the biggest hug I could. My heart twists when either of my kids is in pain, and sometimes a hug is the only thing that will help them. In the case of George, the deep pressure of a hug is physically soothing.  It makes him feel grounded and secure; it helps the panic abate.

Little by little, the screams got softer and then petered out. The crying was gradually replaced with quietness punctuated by an occasional sniffle. George was still trying to scratch his legs, so I didn’t release my hold on him.  A bottle of anti-itch lotion appeared from somewhere. I applied it, which involved a whole new struggle. In the meantime, James, who had initially been a bit put out by the abrupt shift in attention, declared that he was the doctor and he would take care of George. He’s very sweet that way, James is. When George is upset, James always wants an active part in caring for his brother.

Later in the evening, when relative calm had returned to the household, I was moving around the kitchen in a bit of a trance, preparing dinner and lunches for the following day.  I was startled out of my reverie by a loud clatter-bang-bash-shriek coming from the direction of the stairs.  Initially I thought one of the kids had accidentally dropped something down the stairs.  It wouldn’t be the first time: on many occasions, we have discovered that Lego or Thomas the Train characters make a very loud noise when dropped down a set of hardwood stairs.  This time, however, the howls of outrage were my first clue that something was wrong.

It was James. He had tried to bring down the stairs, in one go, Lightning McQueen, Doc Hudson, Mack, Sally, Mater, the Sheriff, Fillmore, and the Dinoco helicopter (anyone with a son under the age of ten will know who these are and what James’ current obsession is).  Because he was carrying so much stuff, he was not able to hold the handrail, and because he was wearing socks, he slipped on the hardwood.

At the end of the day, both of my boys were fine.  George wasn’t allergic to bees and James didn’t have any broken bones.  The only real casualties – apart from the bees that died while stinging George – were my nerves and my blood pressure.

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Why so quiet?

Some time back, my son James, who is all of four years old, announced that he had a pet monster named Billy. Billy, apparently, is a yellow monster with tall hair.  He is friendly, and judging from James’ descriptions, he is the laziest being on the planet.  From time to time he will sit beside James while he is playing or eating, but for the most part, he just sleeps. Sometimes, rather bafflingly, Billy will perch on my head as I go about my day.  Occasionally, James will yell at me because I inadvertently walk through or stand on Billy. An apology is always called for: I have to stand there apologizing to an imaginary monster, feeling – and no doubt looking – like a complete idiot.

The existence of Billy is a testament to James’ active imagination, and also to his veryu sound verbal skills.  This kid is so good at putting his mental pictures into words that I can almost picture Billy perched on the couch next to James watching him eat his spaghetti. James can talk.  James does talk.  Once James gets going you cannot get him to stop.  His thoughts and stories just run out his mouth – very coherently, but sometimes to the point of exhausting his audience, who has to keep track of increasingly complicated storylines.

James and his dad are in a dead heat for the title of “Talker of the family”. I tend to be somewhat quieter, and George doesn’t really talk at all unless he has to.  This is not unusual for a child with autism, but it is something that we are on a permanent quest to change. In today’s world, people need the ability to talk – or at least, to communicate. George has become remarkably self-sufficient in many ways: he will go to all kinds of lengths to do something himself in order to avoid asking for it.

It is easy to attribute this speech aversion to autism, but that does not really answer the question of why. Sure, George doesn’t talk because of his autism, but why is it that auties have this challenge?  In the beginning the answer seemed simple: lack of vocabulary. By the age of three, George only had about thirty words – ten or so of which he was using in their correct contexts, and never more than one word at a time.  Almost four years later, the vocabulary has been increasing exponentially.  George can label just about everything he sees, and he can correctly identify a number of verbs, adjectives, and emotions. He is able to string together simple sentences now. He uses his alphabetic fridge magnets to construct elaborate, grammatically correct sentences that we have yet to hear spoken. So the vocabulary, grammar, and sentence structure are there.  The comprehension is there too, since George will respond appropriately to most things that are said to him.

Another possibility that was presented to us is that auties frequently have a problem with motor planning. What this means is that a kid might have the physical strength and ability to, say, throw a ball, but if he has never thrown a ball before, he will have trouble figuring out what steps he needs to follow in order for the ball to become airborne. There are a lot of fine motor activities involved in speech, and the theory is that auties just cannot figure out how to translate the thoughts into vocalized sound. George, however, can read. He reads out loud from all kinds of materials. He produces the words and they sound correct. Motor planning is clearly not the issue here.

All we’re left with, then, is the simple fact that George does not see the point of talking. Speech serves a purely functional purpose for him. He uses it to express a want or a need. He will say that he would like milk, that he wants to go and play in the back yard, or that he would like a hug. He will answer questions. But apart from one or two rare occasions, he will not use speech to initiate a purely social interaction. He will not say things like “I love you” unless it is said to him first.

We are starting to see some promising signs, though. A couple of weeks ago, he asked me, completely off his own bat, if I was OK. When his brother accidentally spilled a cup of milk, George reacted with a genuinely spontaneous “Whooooooops!” While he still uses speech mostly to request things, he is at least starting to request things of a more social nature.  He will say, “Let’s run!” to indicate that he wants to play a chasing game, or “Horsey!” to indicate that he wants to jump on my back, ride around on me, and pretty much cripple me for the next four days.

I suspect that George will never be much of a talker.  I think he will always be quiet and shy – and that’s OK – he has to be true to who he is and the rest of us have to respect that.  But little by little, we are seeing him emerge for brief moments into our world, and he is allowing us little glimpses into his.

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The boy on the bus

Yesterday, while I was in the bus on the way home, a child started to cry. He couldn’t have been older than two, and he cried in that all-out, heart-felt, unrestrained way that only very young children can achieve. It was a scorching hot day and the bus was crowded: the child was stressed and exhausted and there were no seats available for him or his mother. To add insult to injury, the child’s shoe came off and rolled behind a couple of other passengers. This can be a big deal for a small child who’s already having a hard day.  Because the bus was jam-packed, well-meaning passengers were not able to bend over to pick the shoe up, so it had to stay where it was until the crowd had cleared a little.

The crying was relentless, and painful to listen to.  The child’s mother was trying to calm him down while at the same trying to take care of the other child she had with her.  She was clearly overwrought; I had a moment of direct eye contact with her, and she had pure desperation written all over her.  Not surprisingly, people were staring, drawn as they are to focus on loud noises around them. Some were understanding, some were visibly annoyed. One man offered the mother and child his seat: she politely declined, saying that she wanted to remain near the front of the bus, no doubt to make a quick escape without having to fight through crowds.

After a while, the lost shoe was returned to its rightful owner, and the child’s mother succeeded in calming the crying somewhat.  Instead of out-and-out howls of outrage, there were quiet snuffles with the occasional bout of loud crying. Eventually, the mother got off the bus with her two children, but not without being rudely pushed out of the way by a man whose life must have depended on him exiting first.

As soon as the bus doors closed, the woman sitting beside me, who you could tell just by looking at her had issues, loudly proclaimed, “Well! That child needs a good hiding!”

Maybe it was the not-so-subtle waves of disapproval and judgmentalness radiating from her.  Or maybe I was just in one of those perverse bloody-minded moods I get into from time to time. Or maybe I’ve simply become one of those moms who cannot shut up when her view of how the world should be is violated. Whatever the case, I couldn’t just let that remark go.

“Why spank a sweet child like that?” I asked innocently.

The woman looked at me incredulously, and scrunched her face up into a sour expression, earning her the title in my mind of Lemon-Face. She said, “He is so badly behaved.  I cannot believe any mother would let her child get away with that.”

By now, she had the attention of every single passenger on the bus. It was blatantly obvious to everyone, except her, that the child had not been misbehaving.  He had just been very upset and unable to cope with it. None of the other passengers, however, wanted to participate in the dialogue, and I found them all looking expectantly at me.

I stated the obvious, which was that she should give this kid a break, he was no more than two, and then went on to say, “Besides, you don’t even know the circumstances. Maybe he was just at the doctor and had his shots. Maybe he’s not feeling well.  Maybe he fell on the playground and hurt himself.” I paused a beat, and said what was really on my mind: “Maybe he has a disability like autism and is reacting to sensory overload.”

Lemon-Face was nonplussed.  Clearly the type who routinely expresses prejudicial opinions without being challenged on them. Not to be outdone, she said, “Autism is just a fancy way of saying a child is undisciplined and out of control.”

Uh oh.

I had to explain, of course.  I had to tell Lemon-Face how flourescent lights can feel like fire burning directly onto an autistic child’s retina, how the hum of normal conversation can be like shouting, how a gentle touch can, at the wrong moment, feel like nails piercing the skin.  I had to describe my own son’s absolute fear of Wal-Mart check-out lines, triggered by some combination of senses that I cannot understand.

I had to explain how offensive it is to hear strangers remark that my son needs a good hiding – remarks that are always accompanied by the clear but unspoken implication that my child is that way because I’m a bad parent.  These strangers don’t understand what it’s like to be my son, or to be the parent trying to help him make sense of a situation that is scaring him.

I had to make it absolutely clear that spankings are not for everyone – least of all for children with autism who are having a hard enough time as it is coping with whatever sensory overload is getting to them at any given moment.  And yes, I explained that I am in tune enough with my son that I know when he is having autistic meltdowns that he cannot control, and when he is simply being a brat.  Yes, I discipline him if the situation calls for it, but no, that discipline does not involve spanking.

I don’t usually launch into impromptu autism education sessions while using public transit. On the contrary, my commutes to and from work are my “me time”, the only time I can really switch off from everything and just read a book (sad, I know, but we take what we can get). On this one occasion, though, I felt that I had to stand up for autistic children and their parents.  If that woman left the bus with a smidgeon more awareness and understanding, then I believe I did my small part to make the world a better place.

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Just another kid

One summer’s day about two years ago, I watched a group of children participate in a race. It was in the outdoor play area at the daycare George was attending at the time: it was the end of the day and I had gone to pick him up.  As was my custom, I stayed out of sight for a minute, to watch my child without him seeing me. Lined up against the far fence were five or six kids.  A makeshift finish line had been etched in the sand. At the daycare teachers “GO!” the kids darted away from the fence and scrambled to the finish line.  George was standing apart, shyly watching the action from a short distance away. He looked as if he wanted to join in but did not know how to.

I remember the feeling of immense sadness that came over me. This was such a perfect illustration of George’s autism.  The pool of isolation that he was standing in was almost physically tangible.  It was as if he was trapped in his own little bubble, unable to be a part of the world around him.  Even at the age of four, George was a fast runner: he probably would have won that impromptu little race.

I was reminded of this incident a few days ago, when we were all in Elkhart, Indiana for a long weekend. While out for a walk in downtown Elkhart we stumbled upon a water park. In front of the water park there is a circular paved area: there is a large sprinkler set in the centre of the paving, with a number of smaller sprinklers in a ring around it. When we got there at a few minutes to noon, the sprinklers were turned off but there were a number of people milling around the area with their kids. We had been walking for a while, so we sat down on a bench and allowed the kids to wander around.

At precisely noon, the sprinklers suddenly came to life.  It was like a show of fountains: each of the sprinklers made the water spray in a different pattern.  They were not synchornized: some of them would turn off while others came on, sometimes the water would only spray up to waist-height, other times it would go high in the sky. About fifteen children left the sides of their parents and started playing in the water. The unpredictable nature of the fountains made it a delight for the squealing, laughing children.

James removed his shoes and socks and whipped off his shirt.  He ran straight through the middle of the large central fountain and was soaked within about three seconds.  George was initially more hesitant.  He slowly and deliberately took of his shoes and socks.  We took off his shirt for him, and had a brief moment where he thought this was a cue to strip off completely. He tentatively approached the circle just as the sprinkler closest to him came on, spraying him lightly on the arm. He jumped back in alarm, and for about a minute he simply stood on the perimeter, watching intently. I have no way of knowing for sure, but I have a strong feeling that he was deciphering the sequence of the sprinklers. He’s that kind of kid.  He sees patterns where the rest of us might not even know they exist.

Suddenly George darted into the middle, deftly running between sprinklers rather than right into them. He clearly did not have any interest in getting completely wet like his brother, but he seemed to be OK with a light drizzling. At times he ran around the outer part of the circle with his brother; at times he would stop, stick his hand into a fountain of water, and run away giggling.

George (blue shorts) and James (black shorts)

George in all his water fun glory

It was a magical half hour or so.  For that brief period of time, George was not an autistic child trapped in a bubble of isolation, not knowing how to be a part of the world around him.  He was a regular almost-seven-year-old kid running around having fun with a bunch of other kids. No-one stared at him; no-one noticed anything different about him.  Not once did I have to shoot indignant looks at strangers or launch into my he-can’t-help-it-he-has-autism explanations.

Two brothers, just being kids

For that picture-perfect moment in time, in stark contrast to that long-ago race that he could not participate in, George was just a kid, in perfect harmony with the world around him.

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Empathetically speaking

Two years ago, while I was home alone with the kids, I sliced my hand open on a broken glass.  I called my husband to take me to the hospital to get stitched up, and enlisted the babysitting services of my mother-in-law. As I sat with a bloody dishcloth wrapped around my hand, waiting for said husband and mother-in-law to show up, the kids stood there gawking at me.  To put it more accurately, James stood there gawking at me.  Then only two years old, he hadn’t yet grown a sense of empathy.  He was intensely curious about why Mommy was clutching her hand and making funny noises. George just laughed.  I guess the sight of me sitting there with a white face and straggly, witchy hair, dripping blood all over my clothes, could be seen as amusing, but at the time I was too focused on whether my hand was still attached to appreciate the humour of the situation.

That George’s reaction was so at odds with the situation is not surprising.  Lack of empathy is one of the hallmarks of autism. When James is hurt or upset, George will stand there laughing at him, much to poor James’ distress.  He has no way of understanding that George is not trying to be mean.  It’s not a case of George deliberately laughing at someone else’s pain. He simply doesn’t have the social cues to know when someone else is actually in distress.  The rest of us know that when someone cries, they’re sad, or when they say “ouch”, they’re hurt. People with autism have difficulty with this.

George has discovered a series of Youtube videos that fascinates him no end.  The videos feature an orange talking to other fruits on the kitchen counter.  The orange is incredibly annoying and makes all kinds of jokes at the expense of whichever fruit is unfortunately enough to be engaged in a conversation with it.  The videos always end by the orange saying something like “knife”, and then watching in horror as the other fruit gets sliced up to the sound of its own screams.  The videos are quite funny in a disturbing, South Park kind of way, and absolutely not appropriate for children.  George finds them absolutely hilarious – or he did before I got wind of them and started an endless campaign to stop him from watching them.

Yesterday, George’s attempts to watch the annoying orange were blocked.  Every time he tried to access them, I would close the browser window and drag him away from the computer.  He was getting very upset and agitated – more so when I announced that his allotted time on the computer was up.  The legs were kicking, the hands were flapping, the little face was wearing an expression of utter distress.  Just as I thought we were getting to the point of a meltdown, he looked directly at me – a relatively rare event – and with supreme effort, he said, “Mad”.

I was bowled over. This was a new development – a milestone to be celebrated, despite George’s state of upset.  In most circumstances, George would have simply exploded in a fit of frustration.  But now, for the first time ever, he had used an emotive word to express how he was feeling.  Instantly I saw the possibilities: if he was able to identify and label his own emotions, surely the next step would be to identify what other people were feeling and react appropriately.

Somehow I was able to divert George’s attention from the violent fresh produce videos.  I allowed him a bit of extra time on the computer, and he clicked onto Youtube videos showing scenes from Toy Story.  There is one scene where Buzz Lightyear and Woody are weaving in and out of traffic as they try to catch up with the family’s moving van.  The other toys band together and try to help them, and during all of the excitement Mr. Potato Head topples over and some of his bits fall off.  At this point in the video, George tapped me on the shoulder to get my attention.  He pointed at the computer screen and said, “Ouch.  Hurt.”

Empathy!  George had just shown empathy!  Who cares that it wasn’t for a real person in an actual situation?  Who cares that he felt empathy for a toy in a fictional tale?  He saw a situation, assessed it correctly, and identified that Mr. Potato Head was hurting.  And he wasn’t even laughing – his face was all seriousness.

They say things happen in threes, and this turned out to be the case yesterday.  After the excitement of the dual milestones in the morning, there was an incident in the evening that capped off the day in the best possible way.  Both of the boys had spent the afternoon in the backyard, and they were absolutely filthy (word of advice: kids + sand + ice cream = not a good combination). Although tempted to simply hose them down in the backyard, I settled for giving them a bath.  George, as is his custom, grabbed his box of alphabetic fridge magnets and dumped them into the water.  He doesn’t play with them when he’s in the bath, he just likes to have them with him.  It makes bathtime a very interesting and noisy event.

When bathtime was over, I let the water out of the tub, and got the kids towelled off and in their jammies.  Then it was time to dry the alphabetic magnets.  If they are not shaken off and dried, George dumps wet letters on his bed and everything gets soaked.  So I was kneeling by the tub, drying off letters and putting them into the empty plastic fish tank that serves as their receptacle, and I dropped one.  I discovered that when those things are dropped in a bathtub, they bounce about a mile.  I was unceremoniously hit in the face by the letter “Q”.

George was standing by, patiently waiting for his letters.  Usually this incident would have brought forth peals of infectious giggles.  But there was silence for about ten seconds.  Then, George tentatively approached me, and shyly said, “Mommy?” I said, “Yes?”, and he said, “Are you OK?”

Not only was this such a wonderful demonstration of empathy, it was the most natural spontaneous exchange I have ever had with George.  It was an exchange that was appropriate to the situation, one that he initiated himself with no prompting.  It was a genuine moment of connection, one that will be with me for a long time.

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A bitter pill – well, not quite

A long time ago, I discovered that George and pills should not be combined, in the same way that bulls and china shops should not be combined. Both mixtures are a recipe for chaos and mass destruction.  So when George came down with a UTI a week ago and got put onto medication, I specifically asked the pharmacist to provide it in liquid form.  My theory was that I could just put the goo into his milk and he’d drink it, without ever knowing that there were drugs involved.

But my subterfuge did not work.  For a start, the medicine, which is the colour of Pepto Bismol, made the milk turn pink.  I did not honestly think this would be a problem.  The milk was put into George’s favourite (and opaque) Thomas the Train cup, which has a lid.  You couldn’t even see what colour the milk was.  However, we ran into an additional problem, which is that the medicine made the milk taste funny.  Still, I nonchalantly handed the cup to George, who took a mouthful and then immediately did something very strange with his face.  He scrunched up his eyes and kind of sucked his face inwards (imagine someone trying to turn a lemon inside out), and then his face erupted outwards again with a kind of “THWOO” sound, and pink milk exploded all over the place.

OK, this was clearly not a feasible plan.  I had to switch to Plan B, which was to just put the medicine in a syringe, aim for George’s mouth, and hope for the best. I recognized that his arms and legs were going to be the problem.  If I could keep the arms and legs still, I’d be able to pull this off.  I couldn’t be intense about it, though.  This is an autistic child we’re dealing with – I had to constrain him and get the goo into him firmly but gently, with lots of encouragement and no sign of any emotion that would escalate his anxiety.  Since I was going to have to get his buy-in to do this three times a day for a week, my approach for that first dose was crucial.

I laid him down on the couch and used a blanket to wrap him up like a burrito.  He was a little bemused by this odd action, but apart from squirming a little, he did not protest.  I sat astride his legs to keep him from kicking, and picked up the loaded syringe.  Holding his face gently, I got the medicine into him, bit by bit.  He did not like it.  He cried and complained.  He tried to get away.  But he swallowed the entire dose without spitting any out.  The whole time, James was lying beside him on the couch, kissing his cheek, hugging him, comforting him, saying over and over that everything was OK.  The sight of this four-year-old – so young and yet so intuitive – taking care of his brother was enough to bring tears to my eyes.

Now, with just one or two days of the medication to go, George is more used to the routine.  He still doesn’t like it, but he voluntarily lies down on the couch, and I only have to cover his arms with the blanket instead of actually wrapping him.  He always protests in the beginning, usually to say “James’ medicine” in hopes of avoiding the inevitable.  But he takes the medicine and is not too traumatized by the whole process.

Once the medication issue was under control, I had to deal with the little plastic jar that the doctor had given us, with which we were required to collect a urine sample.  I was worried: how was I going to get George to pee in a jar?  He has very set ways of doing things, and I thought this concept would just be too strange for him.  As it happened, we did have an issue, but not the one we expected.  George had no problem peeing in a jar, and we had the requisite sample with the minimum of fuss.  But now that he had done it once, he expected the jar to be a part of the regular bathroom process.  For about two days he tried to hold it in because he didn’t have the jar.  We have managed to knock that on the head, thank goodness.

So there we have it.  George is becoming a pro at taking medicine (in liquid form, anyway), he seems to be gradually getting better, the jar and its contents have been dropped off for analysis, and relative peace reigns in my household.