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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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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!

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Against the wind

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.

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A whole new world of hope

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.

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To sleep, perchance to dream

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.

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Moments of connection

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.

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Autism funding – not a game for the faint-hearted

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.

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Back to the start line

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!

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World Autism Awareness Day

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.