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To sleep, perchance to dream

April 16, 2010 By

On Monday night, George had one of his stay-awake-for-half-the-night nights. It happens once every two weeks or so.  He goes to sleep easily enough, aided by the melatonin we give him with his bedtime milk, but then he wakes up in the early hours of the morning – anywhere from midnight to 3:00 a.m. – and he stays awake for about three hours.  He is not upset, he does not cry.  Apart from occasional bursts of laughter (which, to be honest, are a bit creepy at four in the morning when nothing is funny), he is actually very quiet.  He is not still, though.  He gets up and wanders around, or he climbs into bed beside me and starts playing with my hair, or he sits on the end of my bed rocking back and forth.  It is a level of activity that leaves me in an uncomfortable state of consciousness: he is not active enough to force me to just get up and do something useful, and he is not still enough for me to be able to drift back to sleep.  So I lie there in bed in a state of exhaustion, trying to settle him and get him to go back to sleep.  Experience has taught me that I cannot really force this.  When he has these nights, the best thing for me to do is just lie as still as I can, ignore George as much as possible, and wait for him to go back to sleep.

As long as he sticks to his regular schedule – about once every two weeks – I can handle it.  I always feel like the undead the following day, but at least I know that I’ll be getting relatively normal sleep for the next two weeks.  This is just part of his autism that I’ve kind of learned to live with.  Autism and sleep disorders frequently go together, and I reckon that once every two weeks isn’t too bad considering what some parents have to go through.

This time he did not stick to the schedule.  Instead of waiting for two weeks, we were treated to another one of those nights after a mere two days.  On Wednesday afternoon Catherine came.  Catherine is the new respite worker, and this was the first time she was working with George.  For a first encounter, they did OK with each other, but George was definitely stressed out by this change to his day.  After Catherine left, he was prowling around with a mood that could have gone either way at a moment’s notice.  At bedtime he was narky, unsettled, and uncooperative.  We were patient: knowing that changes in his daily routine do tend to reflect on his sleeping patterns, we had kind of expected this.  George eventually settled down in my bed and went to sleep.

At about 1:00 a.m. he woke up in a mood.  He was crying, he was angry, and he was noisily rooting around in his box of alphabetic fridge magnets announcing to the world that he wanted “small letter a”.  Much to his chagrin, we removed his access to the box of fridge magnets, and with some soothing, he settled down with his dad.  To give him more space, I abandoned my spot on the bed and went to sleep on the sofa-bed.  Predictably, George followed.  When he wakes up in the middle of the night, he goes into full-on “Mommy mode”.

For three hours, he was playing with my hair, sitting up on the bed, lying down again, demanding that I scratch his back, telling me he wanted popcorn, getting up to wander around and look for his box.  I was mostly ignoring him, occasionally telling him to lie down, moving his hand away from my hair (the way he constantly plays with my hair sometimes drives me crazy, especially in the middle of the night).  I was watching the clock, and at about 3:30 a.m. I ruefully accepted that I would not be going for my planned early morning run.

George eventually fell asleep at about 4:00, and I fell asleep shortly thereafter.  I woke up just over two hours later, almost weeping with exhaustion.  Somehow I got through the day, helped no doubt by the knowledge that I would be leaving early due to a medical appointment. Throughout the day I was filled with anxiety: Catherine was coming again.  Were we in for another tumultuous night?

George and catherine had a successful session.  When Catherine left George gave her a hug; he was happy and smiling for the rest of the day.  He was contentedly playing with his box of magnets, which had been restored to him.  Although I felt pitifully tired, I went for a run (it was a good one too – I well and truly flounced my target pace).  At bedtime, George was relaxed and cooperative, and he went to sleep right away.  There was a brief moment of anxiety in the middle of the night when we heard him digging through his box.  Once more, I removed the box – this time, George went back to sleep immediately, and I spent the rest of the night in glorious oblivion.

Having had two virtually sleepless nights over the course of three days, I still feel exhausted.  Sometimes a single good night of sleep is not sufficient to wipe out the sleep deficit.  I am looking forward to another night of good slumber and a restful weekend.

Filed Under: autism, sleep Tagged With: , , , , , , , , ,
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Moments of connection

April 14, 2010 By

Last night I had a hot date with the vacuum cleaner.  The boys had come home with a frightening amount of sand in their shoes, which had of course ended up on the carpet.  When I walked into my living room, I had a moment of severe dislocation.  Had I accidentally wandered onto a beach?  The sand was actually getting between my toes and making them all gritty.  Hence the unscheduled quality time with the vacuum cleaner.

I was moving at speed, like a crazed woman.  Before I could vacuum, I had to ensure that toys were picked up and put away, that there were no socks or other items of clothing littering the floor, that there were no cups lying around (my family uses an inordinate amount of cups, most of which get left under beds, beside the couch, or at random points on the floor).  I was barking out orders to the kids to tidy up their things, and they were so startled by this flurry of activity that they actually did what I asked.  Things were picked up, vacuuming was done, linen was laundered and replaced.  While all of this was happening, Gerard was in the kitchen cooking a very nice dinner.  I have to say, it’s great having a man who can cook!

Finally the work was done.  The floor was clean, the sheets were fresh, the vacuum cleaner was unplugged and put away.  Then George caught sight of a tub of Playdough high up on a shelf and wanted it.  I told him he couldn’t use the Playdough on the grounds that I was in no mood to have bits of Playdough ground into my freshly cleaned carpet.  I should mention at this point that I was somewhat cranky last night.  I hadn’t slept the previous night and I was beyond exhausted.  I was afraid that I would not cope with the idea of getting down on hands and knees to dig Playdough out of the carpet.  Besides, it was so close to the kids’ bedtime and it would have been a bad idea to allow George to start a new activity.

But George was not taking no for an answer.  One thing about autistic kids is that they can be very focused on what they want.  We once endured a four-hour tantrum because George was trying to spell a sentence with his fridge magnets and ran out of the letter “a”.  So I was a little worried about the possibility of the Playdough issue escalating.  George kept repeating, over and over, “I want Playdough, please.  I want Playdough, please.” His use of the word “please” was tearing at my heartstrings.  It sounded so plaintive, so imploring.  It made me feel like I was being mean to my child.

Then George, who is nothing if not resourceful, dragged over the little red plastic kiddies’ table.  The table has a gammy leg that keeps coming off – not to be deterred, George reattached the leg, stood on the table and tried to reach the Playdough.  Needing a quick diversion, I decided to turn this into a game.  I ran to him as he stretched up and grabbed him off the table.  I ran with him through the house and dumped him on my bed.  George, it must be said, was quite surprised and momentarily startled.  Then he saw the laughter in my eyes and started giggling.  “Tickle,” he ordered.  I obliged, and was rewarded with the sound of his laughter.  It is the best sound in the world, that laugh.  George has one of the most infectious laughs I have ever heard.

Next thing I knew, he was off the bed and pulling my hand.  He dragged me all the way to the kitchen, him giggling so much he was almost out of breath, me feigning reluctance.  In the kitchen, he pushed me right up against the counter, then he slowly backed away, making sure I was staying put.  Then he turned around and ran away!  I chased him through the house, following the sound of the giggles, and finally caught him on the couch.  I was tickling him, hugging him, and giving him lots of the deep pressure sensory input that he craves.  Then James joined the fray and we were all tickling each other until we collapsed in a breathless, giggling heap.

As I lay on the couch with my two boys, I glanced up at the shelf and noticed that the Playdough had disappeared.  Gerard, taking the opportunity provided by the distraction, had removed it and put it out of sight.  The Playdough was forgotten, a possible crisis had been averted, and my boys went to bed smiling.

This is why parenting is the best thing in the whole world.  All of the stress in the world dissolves during those moments of connection.

Filed Under: autism, parenting Tagged With: , , , , , , ,
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Autism funding – not a game for the faint-hearted

April 12, 2010 By

When George was first diagnosed with autism, I remember being overwhelmed by many things.  The overload of information, the attempts to separate the good information from the inaccurate yet guilt-inducing nonsense, the diagnosis itself, the fact that in an instant, all of my preconceptions of what my family’s life would be like were shattered, the confusing labyrinth of autism funding.

Somehow I navigated my way through the confusion and the funding.  It’s so easy to say that in one sentence, but the acquisition of funding was a long and painful process, one that was so complex that thinking about it made my head hurt.  Trying to figure out how the funding worked was like trying to memorize pi to 59 decimal places while simultaneously doing long division in my head.  In the end, once I had been told that I qualified to apply for funding (see?  You have to qualify just to apply), I took the application forms and all of my information to the good folks at Respite Services.  The Respite Services guy, with endless patience, helped me fill out the forms.  He wrote down lists of what supporting documentation I would need to send with which forms, where to send them to, in what sequence to send them, and what I would be able to actually use the funding for.  If it hadn’t been for the Respite Services guy, I would still be wandering around in the metaphorical maze looking like a lost fart.

If I’m to be completely honest, I still don’t really have my head wrapped around the funding.  Some of the funding is used for things like educational materials, specialized equipment or support aids, parking costs for medical appointments, anything that I have to actually purchase as a result of George’s autism.  Other funding is used to pay respite workers to come to my house and work with George.  Some funding is deposited into my account on predetermined days, other funding is reimbursed when I submit invoices.  I couldn’t tell you, though, which agency provides what funding or what all the acronyms stand for.

Anyway, I recognize that I am extremely lucky to have any funding at all.  Once our funding was first approved a couple of years ago, we hired a respite worker.  George had actually known her for some time – she used to work at his daycare and kind of transitioned into babysitting for us occasionally.  When the funding came through, she agreed to come to our place every Sunday morning to work with George.  She would play with him, give him some lunch, talk to him – all geared in a way to develop his speech and social skills.

This arrangement worked very well for a couple of years, during which this wonderful lady became a friend to our family as well as a respite worker.  Sadly, she became ill a few months ago and had to step back from respite work in order to focus on her health.  It was a blow to our family, but we completely understood.  We still keep in touch with her, and she has visited us a couple of times to say hello and see the boys.

We did have to get a new respite worker, though.  I had never actively recruited for one – our previous worker kind of came to us through circumstance.  So when the need arose, I called up my friends at Respite Services and told them I needed a worker.  They asked me a bunch of questions.  On what days would I need a worker?  What goals would they be helping George to achieve?  How energetic was George and what kind of things did he like?  Was he allergic to any foods?  Did we care whether the worker was a man or a woman, what age they were, or whether they spoke with an accent?  Some obvious questions, some fairly obscure ones.  In the end, we came up with a profile, and the Respite Services people sent out a notification to the workers they had on file.

Two weeks later, I got sent an email with four matches.  I read through the resumes, and immediately eliminated one because the worker had indicated a preference for working with adults over children.  I contacted the other three and last week, I met Catherine.  You know when you like someone instantly, the moment you first meet them?  That was Catherine.  She was cheerful and outgoing, and both of the boys liked her on sight – and they are pretty good judges of character.  We spoke with her at length, and agreed on regular days and times for her to work with George.  And she will be starting with us on Wednesday, when George gets home from the therapy centre.

We are looking forward to this new chapter in George’s life.  We are looking forward to seeing him interact with a new person, and we are excited about seeing the ideas that Catherine might come to the table with.

The jury will be out for a while, until we as a family have gotten to know Catherine better (and she us – we may be really groovy people, but she could turn out to not like us!), but we are hopeful.  And in the life of an autism family, hope is essential.

Filed Under: autism, parenting Tagged With: , , , , , ,
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Questioning my sanity…

April 8, 2010 By

While I was out for my early morning run today, I seriously contemplated the possibility that I was going mad.  I actually pondered out loud, to the bemusement of a pair of young men who were standing in a bus shelter.  I was muttering about how I must be crazy to be doing this, and how normal people were tucked up in their nice warm beds at that hour of the day. Although to be honest, the hour of the day wasn’t bothering me as much as the God-awful weather I was trying to run in.

Since I got all serious about my running about a year ago, I have openly told people that I will run in any weather.  And I will.  The hot sun is not a deterrent as long as I am wearing a hat and keeping myself hydrated.  Even though I am now Canadian, I am from Africa.  I am a child of the sun.  I don’t mind the rain – in fact, a light drizzle of rain during a run can be extremely comfortable and refreshing.  Snow?  No problem, as long as I watch my step and take care to avoid slipping.  Even sub-zero temperatures will not deter me.  I have good quality winter running gear.  All things being equal, I prefer to run in clear, warm conditions, but that is certainly not a prerequisite to me hitting the road.

The hour of the day isn’t a big factor to me either.  If I had my way, I would run at about ten in the morning.  But since I have not yet made my millions publishing my first novel or won the lottery, I have to get to work in the mornings, so any weekday running is done either before or after work, or during lunch.  My preference is before work because of all that feel-good stuff about starting the day with an accomplishment and not having the go through the day all tense about when I’ll get to go running.

So for today’s run, I dragged my sorry butt out of bed at 5:15 a.m.  Because I didn’t think to look out of the window while I was getting dressed, I was completely oblivious to what was going on outside. As a result, when I stepped outside at 5:30 and beheld the dark and the mist and the rain, I was completely taken by surprise. No problem, I thought, as I quickly ducked back into the house to grab my running jacket.  I set off on my way, and got halfway down the road before I realized that the rain was actually heavier than I had thought.

Still, it wasn’t too bad.  I’m not scared of a little rain.  It’s only water falling out of the sky.  I maintained a fairly brisk pace for three kilometres, and despite the weather I quite enjoyed myself.  During the last two kilometres, though, the weather abruptly changed.  What had been a gentle breeze suddenly kicked up to a full-on wind that I was running straight into, and the rain really started pelting down.  The temperature plummeted, and I realized that there were little bits of ice in the rain, hitting me in the face like lots of tiny hammers.

That is the point at which I asked myself if I was crazy.

You would think that these awful conditions would slow down my pace, but I actually kicked it up a notch.  The faster I ran, the faster I would be able to get home and get inside. When I rounded the final corner, I sprinted home, and embraced the warmth of indoors.  Looking at the run stats on my computer, I was not surprised to see that I had run the final kilometre in less than six minutes, such had been my desparation to get home.

Am I crazy? Probably.  Will I run again in those conditions?  Most definitely.

My name is Kirsten and I am a runnaholic!

Filed Under: running Tagged With: , , , , , , ,
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Back to the start line

April 7, 2010 By

On Saturday, the day after World Autism Awareness Day, I officially made my comeback to the world of racing. My previous race had been a ten-miler back in November – a fairly miserable affair in which I had been overdressed, over-complacent, and completely confused by poor course marshalling.  I was scheduled to run in the Resolution Run on New Years Day, but my freshly acquired pinched nerve took care of that ambition.  So now, during the Easter weekend, I was ready to race again.

I did not really have any great expectations. Even if I had been healthy in the interim, I would have expected a bit of a slowdown due to the challenges of running in winter conditions.  You just cannot maintain any kind of speed running into strong icy winds with snow coming at you, while wearing multiple layers and a balaclava that makes you look like a burglar.  As it was, I was out of action for almost three months because of various things that were wrong with me.

So my goal on Saturday was simply to finish the 10km race.  I had a friend with me who was running in the 5km event.  Fran and I have known each other for years, and she has recently been bitten by the running bug.  Saturday was her first race ever, so there was a sense of occasion for both of us.  Although we were running different distances, we had a common goal – to cross the finish line.

Ten minutes before the race started we discovered that the 5km and 10km races were starting from different places.  The 5km runners stayed in the designated starting area, and the 10km runners were sheperded to a different point, about 600m away.  I set my training watch, listened for the starting siren, and off I went, wondering how far I would be from my pre-injury pace of 6 minutes 30 seconds per kilometre.  In defiance of my usual strategy to start slow, I ran my first kilometre in exactly 6 minutes and 30 seconds.  The second kilometre was slower.  The third one was very fast by my standards – 6 minutes and 13 seconds.  There were still seven kilometres remaining; I knew that I was going to regret this early spurt later on.

At around six kilometres, I passed Fran, who was coming in for her final stretch.  She was looking good; we waved at each other and went on our way. And true to my predictions, I started to seriously flag in the eighth kilometre – this unfortunately coincided with a couple of pretty intense hills along the course.

But mental power means a lot in running, and the fact that there were only two kilometres remaining helped restore some energy.  I got a further boost thinking of George, the ultimate reason I’m doing all of this running in the first place.  I used the ninth kilometre to recover, and I was able to run the final kilometre fast and come in for a strong finish.  My final time was 1:06:14.  My pace was 6 minutes and 38 seconds per kilometre – not far off from my pre-injury pace.  I was very happy with how I did.  I am now looking forward to my next race – also 10km – at the beginning of May.

It is now four days after the race.  I have been for one run since then, and my legs have not complained too much.  I must be in better shape than I’d thought!

Filed Under: running Tagged With: , , , , , , ,
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World Autism Awareness Day

April 2, 2010 By

Today is World Autism Awareness Day.  This is the day to reflect on people of all ages who are touched by autism.  Wherever they happen to be on the spectrum – whether they are verbal or not, high- or low-functioning – they are important members of society.  They deserve love, respect, admiration for all they have to live with and overcome, and opportunities.  Autism manifests in countless ways.  There are probably as many forms of autism as there are autistic people.  Some auties talk, some don’t.  Some have enough capacity for academic learning to complete high school and go to university, some don’t.  There are auties who are brilliant artists, some who are mathematical whiz-kids, photographers, musicians.  Some become famous.  Some don’t become famous, but manage nevertheless to carve niches for themselves in the communities in which they live.

We had a very good World Autism Awareness Day.  It started with George requesting and wearing a pair of shorts instead of the long pants I had selected for him.  Traditionally, George has a hard time with the transition of seasons.  If he’s used to wearing winter clothing, he doesn’t want summer clothing.  If he is used to shorts and T-shirts, he will not wear winter clothing until he has experienced the freezing cold weather for himself.  So the fact that he transitioned so seamlessly into summer clothing is a big deal indeed.

Once we were all dressed and ready for the day, me, my mother-in-law, and my friend Fran sat at the kitchen table chatting and having a lazy morning.  James was playing with his cars, George was wandering around the room, not really doing anything.  Gradually, we became aware that he was counting while he was wandering.  So far, not really a big deal.  For a long time, George has been rote counting, and even doing mathematical sums, but it’s never really been applied to the real world.  This morning, however, we realized that there was a purpose to his counting.  He was counting how many chairs were in the room, how many tables, how many cups were on the table.  Instead of rote counting, he was counting groups of objects.  He was using the concept of counting for something real.

While I was still celebrating this very meaningful accomplishment, George paused his constant activity to tug at my sleeve.  “Let’s sing O Canada”, he said.  And he started singing our national anthem.  Admittedly, he wasn’t word-perfect, but he did really well for a six-year-old, especially one with autism and limited verbal skills.  He sang sweetly, with lots of heart.  He made me proud to be Canadian, and proud to be his Mom.

Later in the day, we went to the park.  I sat on a bench watching my boys running and playing, I pushed them on a swing and showed James how to go down the fireman’s pole.  I laughed as James grabbed a handful of leaves and dumped them over George’s head, and I smiled when they insisted on holding hands with each other for the walk home.  It was a perfect brotherly moment for the two boys.

And so I wrap up a wonderful day, and I prepare for tomorrow’s 10km race.  I am eagerly looking forward to the race.  It will be a significant and exciting step in my quest to run for autism.

Filed Under: autism, parenting, Siblings Tagged With: , , , , , , , ,
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Thank you for being there

April 1, 2010 By

Every now and then I have a run that is so great that I do a happy dance at the end of it.  I mean that quite literally – I stand in my driveway and do this weird little hoppity-hop thing that I’m sure makes the neighbours more than a little perplexed.  I had been looking forward to this yesterday’s run since the weekend.  I am currently enjoying some time off from work, so instead of dragging myself out into the dark at 5:00 a.m. yesterday, I was able to wake up at my leisure, get the kids safely off to their respective places, and hit the road at about 9:00 a.m.

I woke up feeling a little rough.  Although I had a reasonable amount of sleep the previous night – meaning I got more than six hours – half the night was spent on the sleeper couch with James, who had woken up feeling lonely (quick diversion: I want my kids to know that they can come to me at any time of the day or night. There are people who believe co-sleeping with their children is a Very Bad Thing.  I am not one of these people).  Here’s the thing about the sleeper couch: it ruins my back.  When I sleep there I wake up feeling as if someone has spent the night pounding on the back of my neck with a rubber mallet.  However, I was determined to go running – I am a bit weird that way, once went for an eight-kilometre run with a sprained ankle – so I did some stretches, laced up my shoes and went out.

It was only 5km, but it was a really fantastic run.  For the first time since returning from my illness/injury, I actually beat my virtual partner.  Maybe I should explain the virtual partner.  A few months ago I upgraded my training watch to one that has GPS.  The new training watch has a feature that allows you to set a target pace per kilometre, and throughout the run you can visually see how you’re performing compared with the target pace.  The virtual partner “runs” at the target pace.  Since recovering from my illness I have been consistently running fifteen to thirty seconds per kilometre behind the virtual partner.  I have been OK with that – I have, after all, been in recovery mode.  Today, though, I finished my run several seconds ahead of pace.  The psychological boost I felt from that was tremendous.

Yesterday’s run was part of what is turning out to be a phenomenal week.  On Tuesday, I had my first consultation with Brandon, my holistic lifestyle coach.  Under his guidance, I am going to take steps to get my life in balance.  It will have a positive impact on all areas of my life – parenting, running, work, my relationship with Gerard.  I feel as if I have entered a new positive phase of my life.  I also have a maid of honour for my wedding!  There are no words to describe how amazing my friend Michelle is.  What started as a simple car-pooling arrangement has turned into a deep friendship, and it will truly be an honour to have her standing beside me when I get married.  My friend Jenny also deserves a special mention.  She has been my best friend since we were both ten.  She has put up with all kinds of crap from me, seen me through some very intense crises, and just been there for me no matter what.  The fact that she lives on the other side of the world to me has not lessened our friendship one bit.  And because distance will prevent her from being here for my wedding in person, I know that she will be here in every other sense.  She will be as involved as she can be in the planning of the wedding – thanks to the joys of the Internet.

Yesterday I went to the airport to pick up my friend Fran.  Fran is a South African who moved to Vancouver (well, an hour outside of Vancouver) a few months ago.  I have known her for years, and have not seen her for a long time.  She is staying with me for a few days: we are planning to hang out, relax, have fun, go running together (even a race on Saturday!), and gossip about people we both used to spend a lot of time with.

In talking about these people – my family, my friends, people like Brandon who are helping me in a professional capacity – I realize just how blessed I am.  I am surrounded by really incredible people.  I am very lucky, and I hope I can always remember that when things get rough.  And I want to say to these people – Gerard, my boys, my Mom, my late Dad, my biological parents who did such an amazing unselfish thing to give me a better life forty years ago, my wonderful, wonderful friends, everyone who touches my life in such a special way – thank you for being you.  Thank you for being there.

Filed Under: family, Friendship, running Tagged With: , , , , , , , , , ,
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Thank you for being there

April 1, 2010 By

Every now and then I have a run that is so great that I do a happy dance at the end of it.  I mean that quite literally – I stand in my driveway and do this weird little hoppity-hop thing that I’m sure makes the neighbours more than a little perplexed.  I had been looking forward to this yesterday’s run since the weekend.  I am currently enjoying some time off from work, so instead of dragging myself out into the dark at 5:00 a.m. yesterday, I was able to wake up at my leisure, get the kids safely off to their respective places, and hit the road at about 9:00 a.m.

I woke up feeling a little rough.  Although I had a reasonable amount of sleep the previous night – meaning I got more than six hours – half the night was spent on the sleeper couch with James, who had woken up feeling lonely (quick diversion: I want my kids to know that they can come to me at any time of the day or night. There are people who believe co-sleeping with their children is a Very Bad Thing.  I am not one of these people).  Here’s the thing about the sleeper couch: it ruins my back.  When I sleep there I wake up feeling as if someone has spent the night pounding on the back of my neck with a rubber mallet.  However, I was determined to go running – I am a bit weird that way, once went for an eight-kilometre run with a sprained ankle – so I did some stretches, laced up my shoes and went out.

It was only 5km, but it was a really fantastic run.  For the first time since returning from my illness/injury, I actually beat my virtual partner.  Maybe I should explain the virtual partner.  A few months ago I upgraded my training watch to one that has GPS.  The new training watch has a feature that allows you to set a target pace per kilometre, and throughout the run you can visually see how you’re performing compared with the target pace.  The virtual partner “runs” at the target pace.  Since recovering from my illness I have been consistently running fifteen to thirty seconds per kilometre behind the virtual partner.  I have been OK with that – I have, after all, been in recovery mode.  Today, though, I finished my run several seconds ahead of pace.  The psychological boost I felt from that was tremendous.

Yesterday’s run was part of what is turning out to be a phenomenal week.  On Tuesday, I had my first consultation with Brandon, my holistic lifestyle coach.  Under his guidance, I am going to take steps to get my life in balance.  It will have a positive impact on all areas of my life – parenting, running, work, my relationship with Gerard.  I feel as if I have entered a new positive phase of my life.  I also have a maid of honour for my wedding!  There are no words to describe how amazing my friend Michelle is.  What started as a simple car-pooling arrangement has turned into a deep friendship, and it will truly be an honour to have her standing beside me when I get married.  My friend Jenny also deserves a special mention.  She has been my best friend since we were both ten.  She has put up with all kinds of crap from me, seen me through some very intense crises, and just been there for me no matter what.  The fact that she lives on the other side of the world to me has not lessened our friendship one bit.  And because distance will prevent her from being here for my wedding in person, I know that she will be here in every other sense.  She will be as involved as she can be in the planning of the wedding – thanks to the joys of the Internet.

Yesterday I went to the airport to pick up my friend Fran.  Fran is a South African who moved to Vancouver (well, an hour outside of Vancouver) a few months ago.  I have known her for years, and have not seen her for a long time.  She is staying with me for a few days: we are planning to hang out, relax, have fun, go running together (even a race on Saturday!), and gossip about people we both used to spend a lot of time with.

In talking about these people – my family, my friends, people like Brandon who are helping me in a professional capacity – I realize just how blessed I am.  I am surrounded by really incredible people.  I am very lucky, and I hope I can always remember that when things get rough.  And I want to say to these people – Gerard, my boys, my Mom, my late Dad, my biological parents who did such an amazing unselfish thing to give me a better life forty years ago, my wonderful, wonderful friends, everyone who touches my life in such a special way – thank you for being you.  Thank you for being there.

Filed Under: family, Friendship, running Tagged With: , , , , , , , , , ,
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Never forget the siblings

March 29, 2010 By

As I work towards my Run for Autism, my inspiration is George.  He’s the only member of my family – either immediate or extended – who has been touched by autism.  I could go on all day about his challenges, his strengths, and the fact that what most “typical” parents see as minor developmental milestones are, to me, gigantic accomplishments that make me want to jump for joy.  I am in the process of starting to work with a holistic lifestyle coach named Brandon: the first time I spoke to him he told me that while parenting in general is equivalent to a full-time job, parenting a child with autism is equivalent to an additional full-time job.  It makes sense.  I have to maintain two completely separate styles of parenting for my two children, because what works for one definitely would not be appropriate for the other.

And in this sense my Run for Autism is inspired not only by my autistic son George, but also by my neurotypical child James.  James, in addition to just being James, a unique individual in his own right, is also the brother of an autistic child.  Although he is chronologically the younger of the two, in most senses he is actually older.  He has the verbal skills, the social skills, the adaptive skills that his brother does not have.  There are times when he is called upon to understand the kinds of things that kids his age shouldn’t have to worry about.  He has a very strong sense of what is and is not fair, and when George’s autism leads to us reacting in a way that James perceives to be unfair, it can be very hard for his four-year-old mind to process.  Being the sibling of an autistic child cannot be easy.  And so when we do something to improve the lives of autistic children, we are also by extension doing something to improve the lives of their siblings.

We are very fortunate that James is the kind of child that he is.  He is a highly verbal, very social child.  He has opinions and he’s not afraid to express them.  Although there is definite sibling rivalry, James adores his big brother.  If he is given a cookie, he requests one for George.  If we do something simple like take George’s hat off his head in a playful moment, James will get upset and demand that we return the hat to its rightful owner.  When George is having a meltdown, James feels sad and says things about how he will take care of George.  He has never used the word “autism” in relation to George, but he is aware of George’s disability. Based on his character, both Gerard and I believe that James will grow up to be friend and advocate to his brother.

I frequently worry about whether I am doing right by James.  So much of James’ life is shaped by George’s autism.  A simple example is Mr. Potato Head.  George loves Mr. Potato Head.  He has about twenty of them, and he has to know where they all are at all times.  If anyone touches his Mr. Potato Heads he gets very upset.  Any Mr. Potato Head that enters the house is automatically deemed to be George’s property.  There have been times when James has tried to play with a Potato Head, and he’s been prevented from doing so, either by George himself or by parents who are too frazzled to deal with a meltdown.  Over time, James has been conditioned to not play with Mr. Potato Head.  I have no idea whether he’d like it or not, and I feel oddly sad that we’ll never find out.  Another one like that is Lego.  We tried getting James Lego that is different in appearance from what George likes, but we have had limited success.  James will still make the occasional attempt to play with Lego, and if I happen to be around, I play with him and fend off George’s intrusions.

I sometimes wonder whether James’ passion for trains and cars is genuine, or if it’s just something he has gravitated to because George isn’t really interested in them.  When these thoughts start troubling me too deeply, I console myself with the knowledge that James truly does love his cars and trains and gets a lot of joy from them.

What I really want to convey is this: autism does not only affect the individual diagnosed with it.  It touches every member of the family.  The autistic child is not the only one who needs special care and attention.  We must never forget the siblings.

Filed Under: autism, family, parenting, Siblings Tagged With: , , , , , , , , ,
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Retrospectively speaking…

March 25, 2010 By

This morning I indulged in a bit of retrospection.  I was looking back at the day, almost three years ago, when a doctor broke the news to Gerard and I that our son had autism.  I remember that moment with such sharp clarity that just thinking about it brings back that stab of pain to my heart.  As I sat in the chair in the doctor’s office, I could almost feel the physical force of my world crumbling; I am convinced that the odd buzzing sound I heard was the sound of my expectations shattering.  In that instant I learned that the phrase “to have a weight on one’s shoulders” is not merely metaphorical: I actually felt a physical weight being placed on my shoulders.

The next half-hour or so was intensely painful.  Gerard and I sat and listened as the doctor told us his prognosis for George.  He may never talk, the doctor said.  He has very limited capacity for learning, and as he gets older the gap between him and his peers will get wider and wider.  He will always have severe cognitive delays, he will not be able to function in the world of “normal” people without constant care and supervision.  He probably won’t complete high school; as an adult he may hold down a very basic job but he won’t actually have a career.  We, the parents, were advised to prepare ourselves for a lifetime of intense hands-on parenting.  It all sounded so hopeless, as if George was doomed to a lifetime of misery.

Once the disabling shock and desperation had worn off, I made a decision.  The doctor would be wrong.  I accepted that George might always be different to other people of his age, but we would do whatever it took to help George reach his full potential, whatever that might be.  I was not going to let the well-meaning but pessimistic doctor dictate what George would or would not accomplish.  I would become an advocate for George, I would learn as much as I could about autism, I would give him whatever opportunities were feasible.

And so the hard work began.  My first mission – on the advice of his speech therapist – was to teach him to point.  It was explained to me that pointing is a crucial precursor to basic speech.  Babies point before they can talk; pointing is a very simple, basic, and effective form of communication.  Most kids learn how to point intuitively; children with autism need to be taught.  And so I taught.  Every evening for nine months, I would sit with George and a variety of books, painstakingly pointing to this thing or that thing, using hand-over-hand assistance to help him point.  Prompting, reinforcing, encouraging, never giving up.  There were days when it seemed as if I was getting nowhere.

Are there words in the English language that can describe the immense, overwhelming emotion I felt on the night when George hesitantly, almost shyly, lifted up his tiny hand, formed it into the shape of a point, and with his index finger touched a picture of Bob the Builder in the book we were looking at?  The memory alone makes my eyes go misty.

Since that day, there have been many accomplishments.  George still doesn’t talk a lot, but he makes requests using full sentences.  He even says please.  In recent weeks, he has tentatively entered the world of imaginative play by pretending to be a turtle.  He can read, he can spell out full sentences using his alphabetic fridge magnets.  He counts to a hundred and beyond, and he is learning to do sums using the big wooden abacus that a relative bought for him.  He finds what he wants on the computer without assistance, even typing his own search strings into Google and Youtube.  He has unique but effective problem-solving techniques.  The teachers and therapists who work with him are united in their opinion that George is a very smart kid.  When it comes to numbers, he outperforms typical kids of his age.

There are challenges, of course.  There are the tantrums, the autistic meltdowns, that originate from things I cannot always identify.  There is his refusal to try foods he has never seen, his phobia of doctors, the fact that I have to cut his hair and his nails while he is sleeping to avoid a panic-induced meltdown.  There are the sleep problems that plague us from time to time, especially when there has been a change in routine.  There is his heartbreaking frustration when he tries to express something to us but does not know how to.  There are the times when I have to spend over an hour physically restraining him from banging his head on the wall or the floor.  There are the persistent social communication delays and his anxiety in big groups of unfamiliar people.

Yes, there are a lot of challenges, a lot of days when I want to tear my hair out.  But that doctor was wrong, damn it!  I wish I had the opportunity to tell him so.  I honestly believe that he would be very happy to know that in this particular case, he was wrong.

George is loaded with potential.  I have no doubt that as an adult, he will be one of many autistic people making a truly valuable contribution to society.  It is truly my honour to be running for him and for people like him.

Filed Under: autism, Medical, parenting Tagged With: , , , , , , , , , ,
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