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2010 Run for Autism 2:22:38

September 27, 2010 By

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

Filed Under: autism, running Tagged With: , , , , ,
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Band-Aid solution

August 9, 2010 By

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…

Filed Under: autism Tagged With: , , ,
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Why so quiet?

July 16, 2010 By

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.

Filed Under: autism, Children, Communication, Speech Tagged With: , , , ,
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The boy on the bus

July 6, 2010 By

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.

Filed Under: autism, Children, parenting Tagged With: , , , ,
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Just another kid

June 30, 2010 By

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.

Filed Under: autism, family, Play Tagged With: , , , ,
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Empathetically speaking

June 21, 2010 By

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.

Filed Under: autism Tagged With: , , , , ,
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A bitter pill – well, not quite

June 2, 2010 By

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.

Filed Under: autism, Medical Tagged With: , , ,
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Things that go snip-snip in the night

May 31, 2010 By

I felt very weird last night, sneaking around my in my own house in the dark, hiding not one, but two pairs of scissors behind my back. I was dressed like a burglar: black shirt, black pants – both tight-fitting to avoid the tell-tale sound of rustling clothing.  In the interests of being as quiet as possible, I was in my stockinged feet.  I could not risk turning the lights on: I had to rely solely on the moonlight coming in through the open window.  I would have worn a balaclava, but since all I was doing was cutting my son’s hair, that probably would have been overkill.

Like most children with autism, George has sensory issues.  He cannot tolerate wearing shirts with collars. He will not eat something if he doesn’t know how it will feel in his mouth.  He stims by running around manically and jumping, jumping, jumping, to send as much deep pressure as possible through his body.  When he’s upset he tries to calm himself by banging his head (not something we allow, for obvious reasons).  He wore pull-ups for about a year after he was toilet-trained because he liked the way they felt.

And he wears a hat.  I suspect that the hat serves a dual purpose.  It creates a slight feeling of pressure around his head that gives him a sense of security, and it discourages people from touching his head.  Now, George doesn’t mind being touched.  He enjoys exchanging hugs with people he trusts, and he seeks the kind of games where you chase him, wrestle him to the floor, and tickle him.  He is always asking me or his Dad to scratch his back.  But he hates having his head touched.  His reaction to being touched on the head ranges from quiet but unmistakable discomfort (for light fleeting pats on the head) to out-and-out screaming, kicking panic (for hair-washing and haircuts).

I have a confession to make: I don’t brush my son’s hair.  I have so many other battles to contend with where his hair is concerned, and frankly, I don’t want him to start every day on such a negative note.  I know that the day will come when I will have to revise this policy, but for now my focus has to be on helping him overcome this issue he has. I cannot just go in with hairbrush a-blazin’ and expect him to be OK with it.  Fortunately, his hair has lost much of its toddlerhood curl and tendency to tangle, so he can get away with it not being brushed.  Besides, the ever-present hat tends to flatten the hair into submission.

However, George’s hair is still somewhat unruly.  The unruliness combined with the fact that I cannot give him proper deep, scalp-massaging hair-washes (hairwashing – a regular event that is fraught with trauma for the entire family) means that George’s hair has to be cut fairly frequently.  But since the sight of scissors coming anywhere near his head would send him into a state that he wouldn’t recover from for weeks, I have to cut his hair at night, when he is asleep.

Hence the dramatic sneaking-around-with-scissors behaviour.  When George goes to bed, I have to wait until he is in a deep sleep.  I have to make myself as invisible as possible, so he doesn’t hear, see or feel my presence.  I sneak silently up to his bed and reassure myself that yes, he is asleep, and that no, he probably won’t wake up anytime soon.  I swoop in – silently, of course – and cut whichever bits of hair I have easy access to.  Between cuts, the scissors are hidden.  I cannot take a chance on George waking up and seeing me there with scissors.  It sometimes takes up to a week to complete a haircut, because what I can do is completely dependant on how George is lying.  So the poor kid invariably spends a few days with his hair looking a bit patchy.

If the haircutting for the night has gone well, I don’t stop there.  I put down the haircutting scissors and pick up the second pair of scissors that I have brought along for the excursion.  I pick up one of George’s hands and experimentally run my finger along his nails.  If he stirs, I leave well enough alone – it is a sign that his sleep is not deep enough for me to proceed.  If he doesn’t react, I pick the longest nails and cut them – another task that George will not tolerate during his waking hours (I suspect that this stems from a babyhood incident in which I accidentally nicked one of his fingers).  Like the haircutting, it can take several days to cut George’s full set of fingernails.  Fortunately, I never have to bother with the toenails – George has the same brittle toenails that I do; they break off during regular day-to-day activity.

Someday all of George’s personal grooming tasks will be done during daylight hours, without any subterfuge on my part.  Getting there will take time, though.  It will require gentle desensitization, social stories, a regimen of reinforcements and rewards.  And lots of patience.

And love.  Never forget the love.

Filed Under: autism, parenting Tagged With: , , , ,
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Running and social connections

May 16, 2010 By

I tend to be a loner when I run.  I love the sense of freedom that comes with being out on the road, just me and the music that is playing in my ears.  I love the feeling of being at one with the world around me, of having no walls or barriers.  And I love being alone, especially during my long runs.  It’s not that I’m antisocial – far from it – but I spend so much time around other people.  I have a very hands-on parenting style: being with my family involves a great deal of physical contact – hugging, playing, chasing and catching – all of which I could not live without.  It does mean, though, that I savour my long Sunday runs, which allow me to spend time with myself.  I always feel refreshed when I get back, and ready for another round of being wrestled to the ground simultaneously by both of my boys.

And so it has been something of a surprise to me to discover that I do actually enjoy the occasional run in the company of other people.  My first inkling of this was when my friend Fran came to visit from B.C. for a few days.  Fran has recently been bitten by the running bug, and when she was here we went running together a couple of times, and even went to a race together.  When she returned to B.C. I missed her company on my short runs, while still being glad of my independence and sense of freedom on the long runs.

After last year’s half-marathon, my first for which I raised funds for the Geneva Centre for Autism, I was invited to join the Geneva Centre’s committee organizing efforts for the 2010 autism run.  During the course of committee meetings and informal email threads, I have gotten to know a few of the people who work at the Geneva Centre, including the lady who is coordinating the whole thing.  After I was featured in a Globe & Mail article about the connection between running and philanthropy, the Geneva Centre asked me to write a brief message about my running for autism, for inclusion in the weekly parent newsletter.

And last week, I was an inaugural member of an informal running group that has started up, comprised mostly of Geneva Centre staff.  After work on Thursday, I traveled the one subway stop from my office to the Geneva Centre and met up with the other four members of the group.  Wearing our red Geneva Centre T-shirts, we set off for a half-hour or so of walking/running.  The experience level of the group varied widely, ranging from one lady who had never run in her life before to me, with my average of 40-50km per week.  By any standards, we were a somewhat motley crew, but we had loads of fun.  I enjoyed the company of each person, and I am really looking forward to our planned weekly runs together.

Well, who knew?  I actually enjoy being with other people when I run.  I don’t honestly see myself ever being able to give up my lone Sunday long runs.  I value that time for myself too much.  But I am discovering that the shorter weekday runs can be very fun, social occasions.

As with so many other aspects of running, I guess it’s a question of balance.

Filed Under: autism, running Tagged With: , , , ,
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Stop the world, I need to breathe!

May 8, 2010 By

To say that the last week has been a bit eventful would be like saying Hitler was a bit aggressive.  It’s either feast or famine in my life.  Things will chug along, same-old-same-old, for weeks at a time, with nothing changing and nothing really newsworthy happening.  Then all of a sudden, I will have several weeks’ worth of events will flock to me like mosquitoes flock to my husband (seriously, bugs love him and for the most part, avoid me.  Why is that?)

Last Sunday I ran a race, the Sporting Life 10K in downtown Toronto.  It was a phenomenal event featuring more than 14,000 runners and superb race organization.  The logistics of planning something that involves that many people must be akin to a nightmare, but these guys pulled it off flawlessly.  The run itself was a lot of fun.  The route was easy, downhill most of the way, and the weather was perfect.  The predicted thundershowers failed to materialize, but the cloud cover and the gentle breeze were in evidence.  I completed the run in 1:05:00 – fast enough for a personal best time for the distance, but still leaving plenty of room for more personal best times in the future.

A quick word about something Gerard did for me before the race.  When he and James dropped me off at the start line, I gave James a kiss, and then went round to the back of the van to pick up my bag.  Only to see that Gerard had propped up a framed picture of my Dad next to my bag.  Dad, who died five years ago, was also a runner – one of the best in South Africa at his prime – and this was Gerard’s way of telling me that Dad was with me.  I was so touched, it brought tears to my eyes.

Several hours after the race, I started feeling a little off.  I figured that I had pushed myself on the run, not eaten soon enough afterwards, and consumed way too much coffee.  Feeling a little sick made complete sense to me.  But then – there’s no polite way to describe this, really – I started tossing my cookies.  Big time, for several hours.  Many hours, in fact.  Until 4:00 the following morning.  Even when there were no cookies left, the cookies continued to be tossed.  It was clear that I had a bug.  I had felt fine for the run – perhaps the bug was lurking there in the corner, just waiting for its moment to arrive.  Although the throwing-up incidents came to an end after about sixteen hours, I felt weak and drained for several days.

On Sunday afternoon, about an hour after I started feeling sick, I heard from Robert, the brother of my friend Tim.  Tim, who had recently been diagnosed with stomach cancer, had passed away.  Tim and I were friends for years.  We wrote columns for the same e-zine, and Tim was my unofficial tech support guy.  When George was diagnosed with autism, Tim was the guy who recognized my need for an outlet; a place to write and vent about autism and what my family was going through.  He gave me a forum to do so, and he was supremely supportive of everything – my parenting, my running, my writing.  He was also one of the funniest people I’ve ever known.

Fast forward to Thursday afternoon.  I was sitting at work, an hour away from going to the Keg with a few of my coworkers to bid farewell to someone who was leaving to go and live in Abu Dhabi.  I had resolved to drink nothing but water at the Keg – I was still feeling mild effects from the weekend stomach bug.  Work was going smoothly enough, when I got a phonecall from George’s therapy centre.  The news was good and bad.  The good news is that they wanted to put George into something called the school stream.  Instead of receiving one-on-one therapy, he would be in a simulated classroom environment with four other children.  The concept sounded good but the timing sounded bad.  When I expressed the opinion that George would not be ready for this by the proposed start date of September, I was told that if he continued with his one-on-one therapy, he would most likely be discharged in December.  Meaning that by January, he would be thrown full-time into a school system that he is nowhere near ready for.  The one day a week of school that he does get is challenging enough.  What this whole conversation left me with is the feeling that I am having to make a critical decision that could make or break George.  It’s like playing Russian Roulette with my child’s future.  What I decided, there and then, was that we had to fight as hard as we needed to to get the best for George.  Thanks to the advice of someone I know who has been through these fights for her own son and knows the system backwards, I was able to tone down some of the anger and gloves-off fighting attitude that I would have gone in with.

I didn’t only drink water at the Keg that afternoon.

On Friday morning, Gerard and I had a meeting at the therapy centre.  We got to see the classroom that is used for the school stream kids, and we were allowed to observe proceedings.  We asked a ton of questions, and got a clearer picture of the program.  In school stream, a teacher works with a group of five children in a mock classroom setting.  Each of the five kids still has a one-on-one support staff member with them, to prompt them as needed.  It’s kind of like a cross between what George is getting now and school.  The whole idea is get kids used to the idea of following school routines, walking in line, participating in class discussion.  In essence, school stream prepares kids for full-time school.  It’s a half-day program; for the other half-day, the kids are in fact in school.  That aspect of the program is simply to get the kids used to being at a real school every day, even if it’s just for a couple of hours.

Here’s what sold us on this program: social communication.  That is George’s single biggest challenge – one that, by its very nature, one-on-one therapy cannot really address.  The school stream program could be hugely beneficial to George from that aspect alone.  The whole thing is based on group interaction and the need to communicate and participate.  The program typically lasts for a year, but if the child needs it for longer, it can be extended.  It includes regular speech therapy, occupational therapy, and social communication workshops.

We said yes.  On seeing the program in action and getting all the facts, it does seem like the right thing to do.  It is the next logical step in this roadmap that is George’s life, and I am excited about the potential it has for him.  He will be continuing with his current program until September, and then switching to school stream in September.

After this was all sorted out, Gerard and I went on to James’ school where there was another occasion for us to attend.  James is a new inductee to the school system, having just started Junior Kindergarten last September.  With a Christmas birthday, he is the youngest and smallest kid in his class.  He needed special nurturing in the beginning, and his teacher, Mr. T., took him under his wing.  James adored his teacher, who was popular with the entire student body: he doubled as the school librarian and frequently gave the kids a break on their late fees.

In December Mr. T., who had recently celebrated his thirtieth birthday, contracted pneumonia and died.  It was a huge shock for everyone; I found myself with the task of explaining the meaning of this to a kid who was still a couple of weeks away from his fourth birthday.  I had to try and make him understand that Mr. T. loved him very much, but was never coming back.  Over the last few months, James has dealt with alternating cycles of grief, denial, and acceptance.

On Friday, he got to say goodbye.  The school put together a memorial assembly, a celebration of life in honour of Mr. T.  James and his classmates sang a song called “It’s a Great Day”, a cheerful song that Mr. T. would have approved of.  My heart swelled with pride and my eyes filled with tears.  There were more songs performed by other classes, quotes, a wonderful slideshow.  I had the honour of meeting Mr. T.’s family – his wonderful parents, brother, and partner.  Will this be effective closure for James?  Only time will tell.

So now I am in a state of exhaustion and very heightened emotion.  I feel overwhelmed and a little stressed.  I know that I just need to give myself time to wind down from all of these happenings.  I am sure tomorrow’s 19km training run will help!

Filed Under: autism, Bereavement, Medical, running, School, Teacher Tagged With: , , , , , , , , ,
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