Archives for June 2010

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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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How it all began

June 11, 2010 By

Several months after packing my life into checked baggage and moving halfway around the world by myself, I started dating a guy named Barry. I don’t know why I went out with him, to be honest.  I had met him on the Internet and liked him, but when I met him in person there was absolutely no chemistry there.  Physically, he was not really my type, and his personality didn’t gel with mine.  Even after I had seen him a few times, he didn’t exactly rock my world.  Don’t get me wrong, he seemed like a nice enough guy.  I didn’t like him, I didn’t dislike him.  I was indifferent to him – I could take him or leave him.  And yet, I somehow found myself dating him for six months.  Looking back, I can only assume that I did it because I was alone in a new country, with no social support structure, no friends, no-one to talk to at the end of the working day.  I was – there is no other way to say it – unbearably lonely.

In retrospect, my relationship with Barry was very odd.  We hardly ever actually went out together.  Twice a week, we would get together – usually at his immaculately neat apartment – and we would have dinner.  To give credit where it’s due, the man was outstanding in the kitchen.  Whether it came to mixing martinis or cooking, he was practically a male Martha Stewart (in fact, he was like that when it came to decorating as well).  After dinner, we would go through his library of DVD’s (“collection” is not an adequate enough word), and we would select a movie to watch.  I would stay over, and we would go our separate ways in the morning.  What was odd about this was the unrelenting regularity of the arrangement.  We had assigned days of the week for getting together (Mondays and Thursdays).  We never saw each other on weekends; we hardly had any communication with each other between “dates”.  I think we spoke on the phone twice during our entire six months together.  The whole thing was very regimented.

After six months, the whole thing abruptly went pear-shaped.  First I discovered that Barry was not technically single, he was divorced.  That I could live with – people don’t necessarily want to be splashing that kind of thing on their Yahoo profiles.  But then I discovered that he wasn’t actually divorced, he was still married but separated from his wife. At this point I started worrying about what else I was going to discover, and we got very weird with each other and started sending off angry emails to each other (because we never talked on the phone, remember, and we were only allowed to see each other twice a week).  He went off on a camping trip to Algonquin and I didn’t hear from him again.  It was an ugly, ugly breakup with a lot of unanswered questions.

Two weeks later, I decided to take a walk in a park.  I was feeling very unhappy and sorry for myself.  OK, so I had never been in love with Barry or even felt particular affection for him, but I was still hurting.  I was lonely and confused, and my self-esteem was nowhere.  To be honest, I was surprised at how the breakup with Barry had derailed me.  So I took a walk in the park one gorgeous summer’s evening, to clear my head and try to regain some perspective in my life.

I sat down on a rock just outside the park entrance, to let the last of the day’s sunlight wash over me.  As I sat there, a man came up to me – a complete stranger.  He sat down on the rock beside me, gave me flowers purchased from across the street, and said to me, “You have beautiful eyes”.  To say that I was speechless would be an understatement.  I sat there and stared at him.  Partly because of the boldness with which he had approached me, but mostly because of the instant connection I felt with this man.  The electricity passing between us could have powered a small city.  I could not speak; I did not even want to move for fear of breaking the spell.

He asked me if I would like to go for a walk; I nodded dumbly and rose to my feet.  As we walked along the road bordering the park, the cat released its hold on my tongue, and I chatted with him about nothing and everything.  At some point we must have exchanged names.  He bought a burger for a homeless man, and then we had dinner together.  It was a magical evening; I felt as though someone had wrapped me in a quilt of happiness, and I didn’t want the date (for that is what it had become) to end.

People told me it would never last, that I had fallen into this while on the rebound from Barry.  Barry?  Within moments of meeting this new man, Barry had receded into the depths of my memory.  It was the equivalent of being in a space ship and traveling away from a hostile planet at high speed, watching it become a speck in the distance.  What I had with the man in the park was real, and I just knew it would last forever.  Sometimes these things do happen in real life.

The rest, as they say, is history.  Despite the predictions of many people, Gerard and I are still very much together.  We make a great parenting team, I support him in his business, he supports me in my running, we are finally getting down to planning our wedding.

Sure, we have had some tough times through the years.  We have had good times and bad, and we have overcome some pretty big hurdles together.  No matter what life throws at us, Gerard will always be my man in the park.

Filed Under: dating, relationships 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: , , ,