Kirsten, Author at Running for Autism

How it all began

June 11, 2010 By Kirsten

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: park, relationships, wedding

A bitter pill – well, not quite

June 2, 2010 By Kirsten

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: autism, doctor, illness, medication

Things that go snip-snip in the night

May 31, 2010 By Kirsten

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

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

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

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

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

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

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

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

And love. Never forget the love.

Filed Under: autism, parenting Tagged With: anxiety, autism, hair, parenting, sensory

Half-Marathon triumph – a great day

May 24, 2010 By Kirsten

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!

Filed Under: running Tagged With: half-marathon, race, running

About Dad

May 19, 2010 By Kirsten

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.

Filed Under: family, running Tagged With: family, father, lifestyle, running, training

Running and social connections

May 16, 2010 By Kirsten

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

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

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

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

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

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

Filed Under: autism, running Tagged With: autism, geneva centre, running, running group, training

Stop the world, I need to breathe!

May 8, 2010 By Kirsten

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Filed Under: autism, Bereavement, Medical, running, School, Teacher Tagged With: 10km, autism, bereavement, communication, illness, race, running, school, special education, teacher

Against the wind

April 28, 2010 By Kirsten

Preparations for my weekday runs usually involve a great deal of stealth. I wake up at five in the morning, and then sneak around in my own house, getting dressed as silently as possible. There’s a lot of tiptoeing and feeling my way around in order to avoid alerting the short people to the fact that I’m actually awake. It’s dark and I look like a burglar. Once I’m dressed, I make my way to the front door in my socks, grab my shoes, and leave. I close and lock the door behind me as quietly as possible, and then put my ear up against the door to listen to the blissful sound of silence coming from within. Now that I have successfully made my escape, I put on my shoes, plug in my music, fiddle with buttons on my training watch, and set off.

If the kids wake up at any point during this process, I can say goodbye to my run. They tend to be somewhat Mommy-centric in the mornings (if they wake up and I’m already gone, Daddy is an acceptable substitute; but if they wake up while I’m there, they want me and only me). On those days, I tend to their needs and then get ready for work, staring wistfully at my pile of discarded running clothes. In general, though, I have become very good at the art of stealth. I could probably give James Bond a run for his money, except that I can’t fire a gun, I don’t have any fancy gadgets in my car, and I like my martinis stirred, not shaken.

Anyway, yesterday I was able to go for a run at a normal time of the day, without the stealth factor. I was working from home, which meant that I had an extra two hours – time that is usually spent commuting. So I got up at a time of day considered by most people to be reasonably civilized, offloaded James at his daycare, and returned home to work. I planned my day’s activities around an early afternoon run, which would have me back by the time George got home from the therapy centre.

Halfway through the morning, though, I was not so sure about this plan. I had been steadily working through the morning, and had gradually become aware that the house was feeling a bit stuffy, like a vacuum cleaner’s armpit (to borrow a phrase from comedic author Douglas Adams). I poured a cup of coffee and went out onto the back deck, where I almost got blown away by a gust of wind. If I’d had an umbrella I would have been like Mary Poppins.

I don’t mind a bit of a breeze, but I hate wind. I can handle just about any other weather condition, but wind makes me intensely irritable. It blows my hair everywhere, makes my ears hurt, and generally sets me on edge. I will not forego a training run because of rain or snow, but I must confess that I have rescheduled runs because I just didn’t want to run in the wind. So when I went outside yesterday and stood there in the wind, I seriously questioned whether I really wanted to go running in that.

I quickly got a hold of myself, though. I have a 10km race coming up this weekend – one that I’ve been looking forward to for weeks – and this is really not the week for me to be flaking out because of a little bit of wind. I need to be well-conditioned this week; my limbs need to be loose and agile. And besides, what I am going to do if it’s windy on race day? Whine about how I don’t want my hair to get messed up?

So yesterday afternoon, I surfaced from my work and got ready to go running as planned. I braced myself, opened the front door – and stepped out into a stunningly gorgeous afternoon. The sun was shining and a light breeze was blowing – nothing like the gusty wind that had set my teeth on edge just four hours previously. As I set off down the road, I could not believe that I had almost foregone this run.

It turned out to be fantastic. The sun was gently touching my shoulders and the breeze was keeping me cool. In the beginning I was taking it slow and easy; for the last two kilometres I was flying. I was on a high for the rest of the day; the physical activity boosted my energy, and as always after a run, I felt a sense of accomplishment.

If I felt that great after a 5.5km training run, imagine how I will feel standing at the finish line of my run for autism.

Filed Under: running Tagged With: 10km, autism, distance running, pace, race, running, weather

He ain’t heavy, he’s my brother

April 23, 2010 By Kirsten

My boys have fallen into a new sleep routine. At bedtime, we do all the stuff we always did. They get their jammies on, use the bathroom, brush their teeth (most days they have a bath earlier in the evening). For story-time, I sit on my glider chair between their beds – the same glider chair that saw me through countless night-time feedings when my boys were infants. George gets right into bed, James curls up on my lap, and they each drink their milk while I read a story (current flavour of the day: anything to do with Thomas the Train). After the story, James gets into his bed, each of them gets sip more milk, and the lights go out.

About five minutes later, we usually see a little face quietly peeking around the corner: George, trying to sneak onto the futon we have in our living room so he can watch TV. Or maybe he just wants the extra hugs we always give him, because once we’ve hugged him he goes back to bed amenably enough. At some point during the night, usually fairly early on, he migrates to the sofabed in the playroom, and sleeps there for the rest of the night.

Sometimes I worry about this. From time to time, when one of the kids is having a hard time, I have to sleep on the sofabed with said kid, and that thing ruins my back. I always wake up the next morning feeling as if I’ve been tortured by Vikings. I worry about whether the sofabed is doing to George’s back what it’s doing to mine. But once he’s there he won’t budge, he sleeps soundly, and he wakes up cheerfully enough. So maybe he’s OK and I just need to chill out a little instead of finding yet another thing to be perpetually stressed about.

In the meantime, James is sleeping soundly in his own bed. He’s a little champion at bedtime, James is. Once the lights are out he goes right to sleep without a fuss. He usually wakes up in the middle of the night, though – sometime between midnight and three in the morning. When I found out the reason for his nocturnal awakenings, my heart soared: he gets lonely for his big brother. He makes his way to the sofabed, climbs in beside George, and goes right back to sleep. George surfaces just enough to shift to make room for James, then he goes to sleep as well.

I am always the first one in the household to wake up in the mornings. Some days – like today – I go for an early morning run. Other days, I like to get dressed, pour out a cup of coffee, and have some me-time at the computer reading emails or playing meaningless games on Facebook. I love carving out that time for myself in the mornings, before the rest of the world wakes up.

Whatever I am doing – running or playing on the computer – the first thing I always do is check on my boys. I go to the playroom and watch them sleeping peacefully, each completely at ease with the other’s presence. They look cosy and comfortable, like a pair of sleepy kittens. There is always physical contact between the two: James’ hand resting on George’s, or George’s hand lightly touching James’ shoulder. When I checked on them this morning, George’s arm was flung over James’ shoulders. It looked big brotherly and protective.

I savour those moments as I watch them and wonder what dreams are going on in those little heads. Even though they are sleeping, I feel as if I am witnessing a moment of special connection between the two brothers.

Filed Under: family, Siblings, sleep Tagged With: brother, connections, family, sibling relationships, sleep

A whole new world of hope

April 19, 2010 By Kirsten

On Saturday morning I woke up full of anticipation. Gerard, George and I were headed to York University to get the results of George’s latest assessment. It had been a year since the previous assessment, and the results of that had left us feeling bereft and overwhelmed. We did not need this latest assessment to tell us that George has made progress: we have seen that unfold right in front of us. Every single new word and every moment of connection, however fleeting, has been a cause for celebration. However, it is always nice to have these things acknowledged as part of a formal assessment, to receive confirmation that the progress we see is not just the imaginings of hopeful parents.

The psychologist who led the assessment started by talking about adaptive skills – play skills, social communication, daily living skills such as tidying up at the end of the day, going shopping, and knowing to look before crossing the road. In this area, George has made very little progress over the last year. He has not actually lost skills, but compared to typical children of his age, he is relatively further behind than he was a year ago. We discussed possible reasons for this lack of progress: Gerard and I are often so exhausted and worn out by the demands of day-to-day life that sometimes we just take the path of least resistance. On hard days it is easier to tidy up ourselves instead of going through the whole time-consuming and exhausting process of prompts and reinforcements that would be necessary to get George to do it. But recognizing that short-term pain so often leads to long-term gain, we have to change our strategy.

As it turned out, that was the only bad-news part of the whole assessment. We spoke about verbal skills: George’s vocabulary and use of language, whether he can read and spell, how much he understand what is said to him, his ability to follow instructions with and without additional prompting. A year ago, George had the verbal skills of an eleven-month-old. Now, he has the verbal skills of a 30-month-old. He is still well behind where typical six-year-olds are, but the gains over the last year are huge. He has made nineteen months’ worth of progress in just a year. So while there is still a sizeable gap, the gap has narrowed.

When we started talking about non-verbal skills, the news got even better. Non-verbal skills include things like cognitive skills, problem-solving, understanding of what numbers are for, the ability to see patterns and solve puzzles, and all that kind of good stuff. George has, to put it simply, made a gigantic leap in this area over the last year. A year ago, he was functioning at about a twenty-month-old level. And now – I get goosebumps just thinking about it – he is functioning at a 51-month-old level. That, my friends, is a gain of 31 months – more than two and a half years – over the space of just one year. Yes, his overall functioning in this area is still about two years below where it should be. But a year ago, it was about three and a half years behind. Again, a narrowing of the gap.

Overall, George has moved down on the autism spectrum. While he is clearly still on the spectrum and has a long way to go, his autism is not as severe as it was. The therapy that he has been going to has been making an enormous difference, and with continued therapy and intervention, George can move that much closer to where he should be for his age.

I don’t have a crystal ball. I cannot say for certain what George’s future holds. Maybe he will never be much of a talker. Maybe he will never be able to live completely independently. Or maybe he will – who am I to say something like that cannot ever happen? But there is no doubt in my mind that he is loaded with potential, and that he will be great at whatever line of work he ultimately chooses as an adult.

Whatever the future holds for George, he is my boy and I am so proud of him that I could just weep. It is an honour to be Mom to such an amazing little boy.

Filed Under: autism, Medical, parenting Tagged With: assessment, autism, autistic, cognitive, communication, diagnosis, disability, potential, special needs