Archives for May 2010

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Things that go snip-snip in the night

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.

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Half-Marathon triumph – a great day

Sunday was one of those days where I appreciated the expression “The journey of a thousand miles begins with a single step.”. Or in my case, the journey of 21.1km begins with a single step (we’re very protective over that final 0.1km, we half-marathoners – after running for such a long way, we want every single step to count).

I had reservations going into Sunday’s half-marathon. The race was organized by the same guy who organized a ten-miler I ran back in November; the marshalling on that race had been so bad that runners found themselves not knowing which way to go. Then, leading up to Sunday’s half-marathon, the course was completely changed – not welcome news for runners, who train for the terrain they’re expecting on race day. Truth be told, I almost decided not to participate. Everything seemed to be pointing to this being a larger-scale repeat of the disastrous ten-miler.

Now, with the half-marathon one day in the past, I can say that if I had not taken part, I would have missed out on a great race. I would have read rave race reports on runners’ forums and bitterly regretted not being there. The race organization way surpassed all expectations. There were water stations every three kilometres; they were well-provisioned and staffed by enthusiastic volunteers. There was a gel station four kilometres from the end, just when runners needed a boost. The course was well-marked and easy to follow, and as an added bonus, it offered up some scenic views of Lake Ontario.

As is my habit, I started out slow. There was a long gentle uphill near the start, and I handled it well enough, despite having done no hill training. After the first 5km or so, I picked up my pace and ran strong for the next 10km or so. With 5km to go, my energy started to flag and I had to adjust my pacing. With 4km to go, I had to ditch my headband; it was drenched with sweat and dripping salt into my eyes.

After three or so very tough kilometres, I had the finish line within my sights. Having run the race up until now without music, I put on my headphones, and set my BlackBerry to play “Come With Me” by Phil Collins – a song that makes me think of George. After all, if it wasn’t for George, I wouldn’t be doing this. With music in my ears and thoughts of my son filling my head, I sprinted to the finish line.

With a finisher’s medal around my neck, and a finisher’s T-shirt in my hand (a nice unexpected touch), I was greeted and hugged enthusiastically by my entourage. Gerard was there with the two boys, as well as Matt, Gerard’s step-son from a previous relationship. Matt’s wife Jen was also there, along with their three young daughters. To have people I love dearly so happy about my success truly meant a lot.

My official time for the race was 2:25:06. I beat my previous half-marathon time by over three minutes. A day later, my legs are aching, my sense of achievement is soaring, and I am looking forward to my next race (a ten-miler sometime in July).

I love to run!

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About Dad

Unlike some of the people who can run a full marathon in less time than it takes me to run a half-marathon, I was not born with running shoes on my feet.  We didn’t have track and field at my high school although there were a number of other sports.  We took our swimming very seriously, and in the winter I played hockey (lawn hockey – hockey as we know it in North America has never gained a foothold in South Africa, despite some mild efforts).  I started running relatively late in life, when I was 26.

What happened was that I decided to quit smoking.  I had been a smoker for about nine years, and I had been on thirty a day since the age of 23.  My parents used to despair – they had lost family members to cancer and they literally feared for my life.  And the habit was just getting too expensive for me to afford.  The true reason for me quitting, however, was that I woke up one morning and simply got tired of being a smoker.  So I made the decision to knock the habit on the head.  My co-worker Gary, who was himself an avid runner, suggested that my efforts to quit should be accompanied by changes in my lifestyle.  And so I started eating better and I commenced a very gradual running program that Gary provided.  By the time I moved to Canada four years later, the smoking habit was a distant memory, I was in much better shape, and I was hooked on running.

When I had the kids, I stopped running.  No time, no sleep, and a sense of being a bit overwhelmed put a halt to all activity.  For seven years I occasionally tried to get back into it, but there was always a reason for it not to work.  Finally, a year ago, I got the email from the Geneva Centre for Autism, inviting me to run for charity, and just like that, I was back.  All I needed was the right motivation.

Throughout my entire running journey, I have had my Dad with me in some form or another.  Dad was a runner himself – at his prime he was one of the best marathoners in South Africa.  For several years he ranked among the top five marathoners in the country, and although his activity did slow down as he got older, he never lost the passion for it.  When I started running he was thrilled.  He was full of advice and anecdotes, all of which I accepted eagerly.  As I trained for my very first half-marathon in 2001, he followed my training with interest, and when I called him after the race to tell him all about it, his enthusiasm was immense.

Dad was there for one of my races – my first-ever 10K in Toronto.  He and my Mom were over for a visit, and on race-day we all bundled into the car and headed for the start line.  I was telling Dad that I wanted to finish the race in less than an hour; he was giving me advice on how to pace myself.  When I crossed the finish line – in less than an hour – it lifted my heart to see Mom and Dad standing at the finish line cheering for me.

Dad died five years ago, and there is not a day when I don’t miss him.  He was a fantastic father, and for the brief period of time he knew George – who is the reason I run today – he was a fantastic grandfather.  He is still with me when I run – sometimes, when my runs are going well, he wanders off for a bit, probably because he knows I’m doing OK.  But when I am on my long runs and I’m starting to hit the wall, I’ll suddenly feel a boost in my energy and I’ll know that Dad has shown up to help me.

When I run my half-marathon for autism in September, there will be two people in my mind.  George – my beautiful boy, the reason I got back into it.  And Dad, my role model, the person who always gave me endless support and encouragement.

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Running and social connections

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.

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Stop the world, I need to breathe!

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!