Archives for July 2010

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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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Getting over the hump

I have a mantra that I use during difficult runs. I cannot repeat it here, because I’m in polite company and the mantra involves a curse word starting with the letter “F”.  It also involves the name of a politician who I intensely dislike.  When I’m having a hard time during a run, I chant the mantra in time to my pace.  The opportunity to vent about the politican, combined with the steady rhythm of the mantra, helps soothe and distract me.  Interestingly enough, I used the identical mantra, but with a different politician’s name, when I was in labour with my first child.

When the run is going well, I don’t need a mantra.  When the run is going well, I can simply enjoy it.  I needed the mantra two and a half weeks ago, when I ran a ten-mile race in Toronto’s Distillery District. It was a hard race.  It happened on the worst day of my monthly cycle so I felt awful.  I was running in new shoes that I hadn’t broken in properly.  It was hot and there was virtually no shade on-course.  One stretch of the race – the Leslie Street Spit – was mentally challenging because it went on for so damned long.

The biggest problem, though, was my training leading up to the race.  Or rather, my lack of training leading up to the race. For about a month, I struggled with my running.  I couldn’t get the weekday runs in: the kids were going through a phase of not sleeping, so I couldn’t summon up the energy to get up at five in the morning to go running.  And in the evenings, Gerard was working hard to meet a deadline, so there was no-one to watch the kids while I hit the road.  I was able to get out for my long runs on Sundays, but lack of training during the week made the long runs painful. I had to cut a couple of them short because I just couldn’t do it, and I had to skip a couple of them altogether due to scheduling conflicts.

That I managed to finish that ten-miler at all is a miracle.  As soon as I crossed the finish line and retrieved my very hard-earned finisher’s medal, I resolved to get my training back on track.  And so I allowed myself two days of rest followed by a short easy run, then I jumped right back into it.

Two weeks ago, I started a dedicated half-marathon training schedule.  In addition to the obligatory Sunday long runs, it includes tempo runs and hill training.  I have been following the schedule and not skipping any runs. No matter how tired I am, I get up at five in the morning when the schedule calls for it – a painful process, but once I am on the road I am always glad to be there.

In two weeks, I have already noticed a phenomenal difference.  The two sessions of hill training that I have done have started strengthening my legs, and this Sunday past, I went for a long run that was the best I’ve had in weeks. I paced myself right, and felt strong throughout.  I even managed to negative split the run – meaning that I ran the second half faster than the first.  Best of all, when I was done with the run, I felt as if I had enough juice in me to continue had I so chosen. I am also noticing a difference to my pace in my tempo runs. When I was coming out of my injury earlier this year, I would have been lucky to maintain a pace of 7:30 minutes per kilometre.  Now, I aim for 6:30 minutes – this morning, I kept up 6:06 minutes and felt good doing it.

There are eight and a half weeks remaining until my half-marathon.  I am starting to think that if I keep up this progress in my training, the 2:15 time I am aiming for will be well within my reach.

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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.