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How Organization Creates Chaos

January 28, 2011 By

This morning I took my Christmas decorations down.  Yes, I know that it is January 28th, and that the 12th day after Christmas passed some time ago.  I have a history of being very last-minute where this kind of thing is concerned, and this laziness is, in fact, the reason we have an artificial Christmas tree.

When you have a real Christmas tree dropping dead pine needles and crap all over your carpet until February, things can get very messy.

The thing is, it’s always a bit of a hassle, not only to take the decorations down, but to put them up in the first place.  You have to dig out boxes that are buried under eleven months’ worth of crap in the storage room, then you have to clear a space for the Christmas tree and figure out how to make your home look festive without being tacky.  Let’s face it, I ain’t Martha Stewart.  I always envy those people who can casually throw a rug over a sofa and make it look like a designer item.  I can spend an hour arranging the rug on the sofa and it will still look like the results of the room throwing up.

Taking the decorations down is worse.  I mean, when do you get the time?  You’re so busy trying to recover – and get your kids to recover – from the remnants of the Christmas season.  You’re trying to catch up on work that’s fallen behind because no-one was at work.  You’re trying to figure out how the kids’ new toys work so you can show them, and you’re trying to figure out where the hell to put all of this new stuff.  With all of this going on, it’s no wonder my Christmas decorations stay up for so long.

This year, I have had an extra excuse, and its name is Autism.  You see, George’s autism hasn’t really affected the comings and goings of the Christmas decorations before, because George has always been pretty cool about things changing.  I always used to think that for a kid with autism, he was pretty adaptable.

That has all changed.

About six months ago, a fear of routine changes reared its ugly head. Now, understand that I’m not just talking about a dislike for or a resistance to change.  I’m talking about actual anxiety fear near-panic that sometimes gets intense enough to make George throw up. We had such an incident recently involving a mirror, and in that case, Gerard and I felt that the best thing would be to restore the mirror to its rightful place to ease George’s anxiety.

So today I took the day off work, with the intention of making a few changes while George wasn’t around.  They were necessary changes that included taking down the Christmas decorations and getting my scary mess of a desk organized (cluttered physical space translates to cluttered mental space and all that).  The kids went off to school, I took a brief moment to relax, and then I started working.  I got the Christmas decorations down and put away, and then I had a major decluttering session.  All of the boxes that were under my desk are now stored more appropriately, meaning there’s room to put my feet.  My filing cabinet has been rearranged, so my files are actually in the cabinet instead of in a broken plastic container on the corner of my desk, which now boasts two stacking trays instead – one for incoming mail, and one for the kids’ homework and school forms and stuff.

When George came home from school, World War III broke out.

First it was the Christmas tree.  Kiddo was insistent on the restoration of the Christmas decorations, and went so far as to start dragging boxes of decorations out of the storage room.  I firmly took said boxes from him and put them back.  He kept mentioning the Christmas tree, but I don’t think it took him long to realize that he wasn’t getting his way with this one.

My desk proved to be the bigger issue.  The broken plastic box that I had discarded?  George wanted it back.  George wanted it back so badly that he was almost panicking.  The poor boy was looking directly into my eyes – something that he only does when he’s feeling emotionally distressed and is desperate to impart a message to me.  Those eyes, those eyes… They had such pain and fear in them.  They were brimming with tears as George begged me to put the box back onto my desk.

I had to say no.  I’m always one to pick my battles with George.  If it doesn’t matter, I don’t make an issue of it.  I let George get his way from time to time.  But sometimes the battle does matter, and this is one of them.  I need for my home office to be organized.  I always have so much to do, so much admin to keep on top of.  The way I was going, I was paying bills late for no reason other than the fact that the papers were getting buried.  I had to arrange things so that I could keep up with everything.  This is definitely a battle I needed to win.

I felt so conflicted, though.  My friend Amy went through the heartbreak of burying her child yesterday, and here I was, with my child alive and well, and I was allowing him to be sad and fearful and distressed.  What kind of mother was I being?

Even with this conflict going on, though, I knew that I was right.  I knew that this was a storm I would just have to weather.  I needed to rearrange things on my desk, and George needed to see that things could change and he would still be safe.

The storm appears to be over – at least for now.  George was upset for a long time, but gradually calmed down.  He started walking around without looking suspiciously at my desk out of the corner of his eye, and he started jumping on the trampoline, making the kinds of sounds he makes when he’s happy and settled.  When he said, “Charlie is a girl” (with reference to Charlie the Unicorn), I knew that he was OK.

Sighs of relief all round.

At least for now.

Filed Under: autism, Christmas, postaday2011 Tagged With: , , , , , , , , , , , ,
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Getting Roped In

January 21, 2011 By

"Peep And The Big Wide World" by George

A few months ago, George went through a phase of tying one end of a rope to his ankle, and the other end to the ankle of a willing or not-so-willing participant.  He would then insist that the other person walk with him to wherever he wanted to go. He didn’t care what the other person was doing, so frequently I found myself trying to cook dinner or do the laundry with a kid attached to my ankle.  He also didn’t mind who the other person was, as long as they had two legs and the ability to walk.  Guests to our home would discover that there was suddenly a child at their feet tying up their ankles.

The rope wasn’t always a rope.  Usually, it was a bathrobe cord, which meant that every time I needed to put on a bathrobe, I would stalk around the house cursing while I looked for a cord to tie it with.  When I got the brilliant idea of hiding the bathrobe cords, my mother-in-law’s measuring tapes started disappearing, much to her consternation.

Initially, we weren’t sure what all of this ankle-tying business was all about. The whole thing loosely resembled a three-legged race, but we couldn’t think where George would have been exposed to that.  We’re pretty sure they don’t do that kind of thing at the therapy centre.  Lord, can you imagine trying to do that with a bunch of kids who all have autism?  But we went with the three-legged race thing because we just couldn’t think of what else it could be.

At around the same time, both of the boys were discovering YouTube videos featuring Peep And The Big Wide World, a children’s TV show that remains a firm favourite with both of them. You should listen to the theme song – it is very catchy.  I have to confess that I find the show itself kind of catchy.  Shut up!  I know I’m 41 but I can still be a kid, can’t I?

[youtube=http://www.youtube.com/watch?v=hqikhlUodC8]

To provide context for the rest of this story, I have to give you a brief outline of the cast of characters in this show.
Peep – a baby chick who has just emerged from his egg, who is very curious and wants to explore the world that he finds himself in.
Chirp – a baby robin who has a strong sense of fairness, and frequently finds diplomatic solutions to a problem.  Her biggest ambition is to be able to fly.
Quack – a purple duck who I think actually looks more like a grape with legs.  He is obsessed with wearing a hat (a characteristic he shares with George), and he is very vain and bossy.  He thinks the sun shines out of his you-know-where.

So anyway, one evening I happened to be passing the kids’ computer while they were watching a YouTube episode of Peep.  And all of a sudden the whole rope-around-the-ankle thing fell into place.  In this particular episode, Chirp and Quack somehow find their legs joined by a rope, so they have to go everywhere together.

All of this time, George had been replicating this episode.

Can we take just a moment to consider the significance of this?  George was engaging in PRETEND PLAY!  For a child with autism, this is through-the-roof HUGE! What made it even bigger was the fact that it was pretend play that required a partner.

Hmmm.  Pretend play that incorporates social interaction. To borrow a phrase coined by my online autism support group, Holy Moly Shit! This represents an exciting chapter in George’s development.  He has outgrown this phase now, and he has not engaged in much pretend play since then, but it’s the potential that strikes me.  The fact that he CAN.  If it’s happened once, it will happen again.

Shortly after the ankle-tying phase came to an end, George drew his first real picture (i.e. the first picture that actually depicted something other than scrawls and scribbles).  I was most amused – and highly thrilled – to see that the picture was an illustration of George’s favourite Peep episode.

This kid astounds me. From time to time, he does these amazing things to remind me of what he can achieve if given the opportunity.

Archimedes said it best: “Give me a place to stand and I can move the earth.”

Filed Under: autism, postaday2011 Tagged With: , , , , , , , , , , ,
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Mirror, Mirror, On The Wall

January 17, 2011 By

Before I go into the story of what happened last night, I should set a bit of context.  When Gerard’s Dad died almost eight years ago, we moved in with Gerard’s Mom, who at the time did not want to be alone. We live downstairs, she lives upstairs, and each of us has own own fully equipped kitchen and whatnot, so we can live completely independently of one another and yet still be in the same house.  For a while, things were kind of tumultuous, but now they have settled down and we are all getting along famously.

My mother-in-law – or future mother-in-law, if you want to get technical about it – is making my wedding dress.  The woman is a phenomenon with a sewing machine, and she is going to create something spectacular – far better than anything I would find in a store.  I am not even intimidated by the fact that my wedding is the day after the British Royal Wedding.  My dress is going to be much prettier than Kate’s.

Last night’s drama started because my mother-in-law and I needed a mirror. A full-length mirror that we could prop up against the wall in her sewing room, that would allow me to see the dress in all its full-length glory during fittings.

Gerard and I just happen to have a spare mirror.  I think it was originally part of some long-gone piece of furniture, and for the last three years or so it’s been propping up the wall in an impractical spot in George’s room.  No-one ever uses the thing, so last night Gerard took the mirror upstairs to the sewing room (after the work-in-progress that is the dress had been securely hidden away, of course).

To say that George got upset would be like saying Donald Trump has a little bit of spare cash.

The kid exploded.  This small change to his immediate environment made him go into utter meltdown.  He was frantically running around in circles, screaming, “Put the mirror back!  Put the mirror back!”  It wasn’t angry, tantrummy screaming.  It was the kind of screaming borne of frustration and anxiety.

You see, George doesn’t cope with change.  When the slightest thing changes – a lightbulb burning out, the laundry hamper in the wrong place, the cordless telephone not in its docking station – he gets really stressed.  A few weeks ago we thought our dishwasher was leaking, so we pulled it out to take a look, and this sent George into such a flurry that it was days before he would set foot in the kitchen again.

The mirror being taken away sent him right over the top, in a way that nothing else has before.  I’m guessing it’s because the mirror was in his room; that it was his own space being violated.  It’s not that he looks in the mirror, it’s just that he’s used to it being there.  And when something he is used to is taken away, it represents a wrinkle, an interruption of stability.

At some point during this wild, frenzied activity, George ran up to his Dad sobbing, and beseechingly wailed, “Put the mirror back, please!”  He turned and looked at me, and in his eyes I saw utter desperation and fear bordering on panic.

Some people might argue that we should have stood our ground, that “giving in” to George would set a bad precedent.  They might say that the only way to get George to cope with change would be to desensitize him to it, to expose him to change and weather the storm, no matter what.

But you know something?  Sometimes, it just ain’t worth it.  Nothing is worth seeing your child in that much pain and anguish. Gerard and I agreed that we would just pay twenty bucks for a new mirror, and he went back upstairs, retrieved the mirror and put it back in its place.  When the mirror had been restored, we picked George up from where he had been cowering on the couch, and took him into his room.  He refused steadfastly to look at the wall, but he must have seen the mirror in his peripheral vision, because that heartbreaking wailing came to an end.

At that point, the stress of what he had just been through must have caught up with him.  All of a sudden, he jumped up off his bed, ran to the bathroom, and threw up.  A lot.

I wanted to cry.  My poor beautiful boy was in such a state of stress that he actually threw up?  That is awful. Do you know how stressed you have to be for it to make you physically ill?  No mother wants to think of her child going through that level of anxiety.

I gently cleaned my son’s face and dried his tears, and then I turned out the lights and hugged him as lay in his bed.  Right before he drifted off to sleep, I asked him how he felt.

“Happy,” he whispered, as he closed his eyes.

That’s all a parent really wants for their child.

(Photo credit: Flickr Creative Commons Attribution License)

Filed Under: anxiety, autism, postaday2011 Tagged With: , , , , , , , , , , ,
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Letting Go Of The Training Wheels

January 10, 2011 By

In September, my son George will be making the transition to full-time school.  For two years, he was going to school one day a week (he is in the “mild intellectual disability” program at the public school), and for the other four days he was going to the therapy centre to undergo IBI.  For those not familiar with the term, IBI stands for Intensive Behavioural Intervention.  It is intense, one-on-one therapy based on prompting and rewards.  It can be used to teach social skills, daily living skills, routine, pattern recognition, and many other things.

Under IBI, George’s progress was off the charts.  He did so well in the first year alone that he made 23 months’ worth of gains in a twelve-month period.  The second year saw similar improvements, and the tiny spark of hope that had been present in me and my fiance bloomed into this kaleidoscope of possibility.  George can be held up as a shining example of what many kids can achieve in IBI.

After two years, though, it was time to move him to a new level.  The one area where George was not making significant improvements was in his social interaction skills, and IBI, by its nature, does not address this deficit very well.  IBI is one-on-one, and George needed to be in a placement that would involve group interaction.  He was also having trouble following school routines.

He was placed in his current program, which is called School Stream.  He spends every morning at the same therapy centre where he received IBI, in a simulated classroom setting with four other kids.  There is a teacher, and each kid also has his own one-on-one support person. The kids do school-type activities, like raising their hand to answer questions, participating in circle time, taking turns, and playing interactively in the gym.  At lunchtime, the school bus picks the kids up and takes them to their respective schools, where they spend each afternoon.

It’s a great program.  The School Stream in the morning and actual school in the afternoon are complimentary programs that reinforce each other and allow for a crucial element: the transferrence of skills to different settings.  We are seeing George progress in different ways.  His teacher at school has reported that he is now following school routines with very little problem, and everyone involved with him is seeing a big increase in speech.

The kid’s probably never going to be big conversationalist, but he is at least functionally verbal, and for George that is a step that is big gigantic equivalent to man walking on the moon.  Academically, he is performing so well that his teacher is now describing him as high-functioning.

There are still challenges, and there probably always will be.  George has a resistance to change that is problematic. Picture extreme tearful anxiety when a lightbulb burns out or when the coffee machine is three inches to the left of where it should be.  There are various meltdowns and anxieties that do not make sense (to us; they probably make perfect sense to George).  We would still like to see him talking more, interacting more, coping with sibling rivalry in a way that does not involve him headbutting his little brother.

But as hard as the challenges can be, they are overshadowed by all of the phenomenal accomplishments that we have seen in George, thanks first to IBI, and then to School Stream.

George will be exiting School Stream in August, and from September, he will be spending all of his school time in actual school, and our three-year involvement with the therapy centre will end.

This is causing me a great deal of anxiety.

It’s not that I think George is not ready.  It’s that think I’m not ready.

The therapy centre represents an avenue of support that has been a part of my life for three years.  I have had many, many conversations with the therapists and supervisors there, and they have given me so many great ideas and strategies for dealing with various things.  They have arranged parent education evenings that have given me valuable information and new ways of looking at things.  And to be fair, they don’t just discharge their kids and then forget about them.  They do have a support program that lasts for six months after the transition to full-time school.

But still.  This change, while being necessary and timely, represents a letting go of support.  It’s like finding yourself without training wheels when you still feel unsteady on the bike.

And this Mama just ain’t ready for that.

Filed Under: autism, postaday2011, School, Teacher Tagged With: , , , , , , , ,
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2011 Run For Autism: The Countdown Begins

January 7, 2011 By

This is so weird.  It seems like it was just yesterday that I did my first autism fundraising run, back in September 2009.  I still remember how it was.  I had resumed running after a layoff of several years just six months previously, when I weighed almost 200 pounds or 91kg (to put that into context, my height is 5′ 6″) and I could barely stagger around the block, never mind run 21.1 km.

Since then, I have run a 5km event, three 10km races, two ten-milers and two more half-marathons, including the 2010 autism run.  This year I am planning more and aiming for some ambitious time goals.  How things have changed since 2009.

What’s really exciting me today is that we have already started the process of planning the 2011 Run for Autism.  I was on the organizing committee for the event last year – a committee made up of Geneva Centre for Autism staff members and parents of children with autism – and I will be helping out again this year.  Yesterday I met with Holly, the outgoing fundraiser for the Geneva Centre, and we threw around some ideas.  The first official committee meeting will happen sometime this month, and soon I will be registered for the half-marathon and starting to raise sponsorships.

People have different reasons for running.  Some people do it competitively.  Others do it to stay in shape, and others do it simply for the love of the sport.  People get hooked on the endorphins that kick in after thirty minutes or so of pounding the pavement.  And me?  My reason for running is my kids.  I got back into it because of the opportunity to raise funds for autism services, to do my bit to improve the lives of people like my son George, and also their siblings who need a special kind of support of their own.

The running is not always easy, of course it’s not.  I go through peaks and valleys (right now, in fact, I am trying to claw my way out of a bit of a valley), and there are times when I want to simply quit a run half-way because the going is so rough.  But I put a picture of my boys in my head, and that gives me the strength I need to keep going.  It is the reason I started running, and while I am really enjoying the other benefits that come from running, my boys are the reason I keep it up.

I would run to the other end of the world for my children.  Surely I can manage the occasional 21.1 km.

Filed Under: autism, Children, fundraising, postaday2011, running Tagged With: , , , , , , , , ,
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Things That Go Bump In The Night

January 6, 2011 By

When our kids were young, all of the experts, books, websites and other parents advised us to establish a consistent bedtime routine.  It took a little bit of time a couple of months four and a half years for us to come up with a routine that works for everyone, and usually bedtimes in my household are fairly uneventful.

Most days the kids will take a bath (I am one of those bad, bad Moms who does not bathe her kids every single day).  On the other days, they take turns in the bathroom to pee, brush their teeth, and wash their hands, faces, and any other parts of them with obvious dirt smears.  They get milk, each boy gets to pick one book for the bedtime stories, and then they are allowed to snuggle on the couch with their Dad for a few minutes.

By the time those few minutes are up, James is very often asleep.  I carry him to his bed – a task that is getting more and more difficult as he gets more and more long and lanky – and if he is still awake I lie down with him for a few minutes and tell him a story about a magic horse I invented that takes James to all kinds of wonderful places.

While this is going on, Gerard is tucking George into his own bed, and when I am done with James, I go in to spend a few minutes with George. He always wants me to stay for longer than I do, but I am always mindful of all of the nightly tasks still waiting to be done. I hug George and give him a few minutes to engage in one of his favourite activities: playing with my abundance of hair. We always have the following dialogue, without fail, every single night (bear in mind as you read this that any dialogue for this mostly non-verbal child is a miracle):

Me: George, who does Mommy love?
George: You love George.
Me: Who does George love?
George: He loves Mommy.
Me: Are you tired?
George: Yes.
Me: Are you ready to go to sleep?
George: Yes.
Me: Goodnight, George.
George: Goodnight, Mommy.

And with that, I give him a kiss, slip out of his room and let him drift off to sleep.  He usually migrates to our bed in the early hours of the morning, and we let him.  One day he’ll grow out of that and we’ll miss these days, so we enjoy it while we can.

Last night, the routine went smoothly enough.  I had my miracle dialogue with George, left his room, and started making sure the boys’ backpacks had what they needed for their respective school days.  All of a sudden, I heard the following from the direction of George’s room:
*Thump* (George flopping himself out of bed and onto the floor)
*Scream* (frustration)
*WHUMP WHUMP* (George banging his head on the wall. Hard enough to dent the drywall)

Oh dear.

I returned to George and calmly made him get back into bed.  As I was trying to settle him, James suddenly appeared by my side crying about how he didn’t feel like being alone.  This was a tricky situation to be in.  Usually, when both boys need me, I simply lie down between them and comfort them at the same time.  But when George is in a state where he is hitting his head off the wall, I need to keep James away from him, otherwise James becomes the target for headbanging.

This was one of those times when I had to send James back to bed crying so I could make sure George was safe.  I always feel truly horrible when I have to do that.  I feel so bad for James.  But sometimes there just isn’t any other choice. It is part of the life and times of special needs parenting.

I got George calmed down – or so I thought – and went in to see James.  I hugged him and comforted him, and told him I loved him.  Sometimes, I said, I have to make sure your brother isn’t getting hurt.  Sometimes I have to make you wait, and that makes you sad, and I am really, really sorry.  But I love you so much and I’ll always take care of you, and I think you are a wonderful boy.

James was content.  He sighed softly and went to sleep.  Just as I was leaving his room, I heard the *thump scream whump whump* from George’s room again.

What, are they trying to tag-team here?  When one stops the other starts?  Can they sense my stress and exhaustion?  Is this that thing that animals do, where they go after the weakest member of the herd?

I am afraid to say that my patience ran out.  I did not go in to George.  I did not hug him or talk to him or try to settle him.  From where I was, I called out angrily, “Get back into bed!  That’s enough!”

There were a couple more screams and one more head-meets-wall incident.  After that, things got quiet and both boys slept through the night in their own beds.  I wasn’t woken at four in the morning by George climbing into bed beside me and wrapping his arms around my neck.  A bittersweet feeling, that.

The logical, rational part of me feels that I did the right thing by not rewarding the second incident of headbanging.

But the Mom in me – the one with a heart full of love for her kids – feels horrible that the last thing my sweet George heard before going to sleep was the sound of my angry voice.

Sometimes, no matter what we do, we feel that we just cannot get it quite right.

Photo credit:  Flickr Creative Commons Attribution License

Filed Under: autism, Children, family, parenting, postaday2011, Siblings, sleep Tagged With: , , , , , , , ,
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2011: Aiming for 1:59:59

December 30, 2010 By

Today is the first anniversary of my pinched nerves.  I am almost tempted to go out and buy a cake with one candle, in recognition of the day I went to the chiropractor and left with a bundle of pinched nerves in my neck and going down my left arm, that put me out of action for three months.  I would not want to celebrate the incident itself, but the fact that I got through it and am now in the process of planning out my 2011 running season.  Or maybe I just want cake and I cannot come up with a better excuse.

Either way, I am oddly superstitious about this day.  I feel that if I can get through today without incident, I will be fine.  I just have to avoid walking under ladders and avoid the cracks in the sidewalk.  I am planning a treadmill run at the gym later on, on the assumption that I am not tempting fate.

Be that as it may, my running has taken a little bit of a dive over the last few weeks.  I had a bout of bronchitis that sidelined me for three weeks, and getting back into it has been surprisingly difficult.  It’s not that I’m in bad physical shape.  It’s that I came back from my illness setting ridiculous paces at the start of my runs that I can only sustain for 5km or so.  I’ve always been perfectly happy to start slow and build up to my target pace.  Why the sudden need to be a speed demon?  It’s not like I’m winning the Olympic Marathon anytime soon.

My poor pacing has the effect of making me feel a bit despondant about my running.  I fade at the fifth or sixth kilometre, and one of two things happens.  Either I finish my planned distance a lot more slowly than intended.  Or I simply cut the run short.  Neither scenario goes well with my psyche.  Both make me feel like I have a big red L on my forehead.

It is time now for me to pick myself up, dust myself off, and start running again properly.  That means proper planning, proper pacing, proper nutrition, and not being too lazy to take five minutes to stretch at the end of each run.

I have just gone online to order the 2011 Runners World calendar.  This calendar is amazing.  It has gorgeous photographs of “Rave Runs” – beautiful trails and paths that people run on.  It has race listings, running tips, inspirational quotes, and space to plan.  Simply having this thing on my wall on 2010 has been a great motivator for me.

Now I am planning my racing calendar for the year.  I am going to start out this coming Saturday, New Years Day, with the Running Room Resolution Run.  This is really more of a fun run than a race.  It is not chip timed, and I don’t even think the course is officially certified for the distance.  But that’s OK.  What better way could there be for a struggling runner to start off the new year?

My next racing event will be Harry’s Spring Run-Off on April 2nd.  It is only 8km, but the location – High Park – has so many big hills that it will feel like 10km.  I am doing this race specifically to have hills to train for.  I need the discipline, and when I am registered for races, I am actually pretty good at sticking to the right kinds of training programs for them.  Here is a promo video for the race.

[youtube=http://www.youtube.com/watch?v=n839HkpWaHA&feature=player_embedded]

Usually I would do the Sporting Life 10K down Yonge Street on the first Sunday in May, but since I am getting married the day before this year’s event, I should probably give it a miss for 2011.  So my next run will be the Toronto Women’s Half-Marathon in Sunnybrook Park.  I am really looking forward to this, not only because a fellow member of my running club is running it with me, but because the water station manned by shirtless firefighters.  Not to mention the chocolate station.

After that, I will do either the Acura Ten-Miler (which I hated in 2010, and feel the need to conquer) or the Midsummer Nights Run 15km (follows the same course as the Ten-Miler, so it will be just as much of a victory).

In late September I will do one of my favourite runs ever – the 10km Oasis Zoo Run.  I had a blast at this event a couple of months ago, and it has earned a permanent place in my annual racing calendar.  I cannot find a promo video for it, but here’s a montage of pictures I found of the 2009 event.

[youtube=http://www.youtube.com/watch?v=E8obrOiK_Uk]

Then, on October 16th, I will run in what is by far the most important event in my race calendar.  It is the Scotiabank Toronto Waterfront Half-Marathon, and this is my reason for running.  This is my Run for Autism, the race I do for my son George who has autism, and his little brother James, who is experiencing the challenges of being sibling to a child with autism.  This event is loaded with emotional meaning for me.  Every step I take is for my boys, these beautiful people without whom my life would be empty.  Here is a nice video showing some highlights of the 2010 event.

[youtube=http://www.youtube.com/watch?v=_QDvwb28914&feature=player_embedded]

I have a lofty goal for this year: to break two hours for the half-marathon.  That means shaving 22 minutes off my best time.  I’m going to have to train my ass off.  Literally.  With the amount of training I will have to do, I have no doubt that part of my ass will indeed come off.  Which is a good thing.

Anyway. I am excited about the new year.  Just planning it out is helping me break out of this funk I am in.

I would like to take this opportunity to wish everyone all the best for 2011.  Aim high and whatever you want to achieve, go for it.

Filed Under: autism, running Tagged With: , , , , , , , , , , , , , , , , , ,
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All We Need Is A Reason

November 17, 2010 By

This morning I woke up early and went to the gym for a rare run on the treadmill.  As a general rule, I am not fond of treadmill running.  It makes me feel a bit like a lab rat, or a hamster running in one of those little wheels.  You never actually go anywhere. You don’t feel the freedom of the open road.  It all seems a little pointless, like tofu or decaffeinated coffee.

On the odd occasion, though, a treadmill workout is better than a road run. This can be true from a circumstantial point of view (you’ve woken up with sore knees and you need to run on a surface with some give; you’re tired and cannot be bothered to map out a route; the weather outside is frightful and you cannot find your balaclava or your will power).  A treadmill run can also be beneficial from a training perspective, especially during the winter.  It can be kind of difficult to do a tempo run or speed reps outside when it’s snowing and there’s a gusty wind blowing.  Far better to head to the gym where you can focus on maintaining 5:30 minutes per kilometre without stressing about snow, wind, ice on the sidewalks, or the fact that it’s dark and you look like a burglar.

So anyway, I went for my treadmill run and worked up a good sweat.  I had some anxiety to work out of my system, so I really belted it, clocking 5km in 24 minutes. Feeling a lot better and pleasantly loosened up, I returned home, where everyone was still asleep.  Before taking a shower, I checked on my boys.  At some point during my absence, George had crawled into bed beside his little brother, and the two of them were sleeping peacefully, James clutching his stuffed giraffe, George with arm over James’ shoulders.  It was one of those moments that reminds me of why I love being a mother, and why, in fact, I was running on the treadmill at such an ungodly hour in the first place.

It is so weird to think that two years ago, I could barely run around the block. I had been bitten by the running bug previously, of course, but after seven years of no exercise my lifestyle was decidedly sedentery. I was decidedly unhealthy, and my clothing was decidedly tight.  I had tried, over the years, to make comebacks to the world of running, but there was always something that stopped me. Injury, illness, lack of time. When it came down to it, though, all I lacked was the right motivation.  When I got that email from the Geneva Centre for Autism back in April 2009, inviting me to join their team for the upcoming marathon/half-marathon/5km Charity Challenge, I knew instantly that I had finally found a reason to get with the program, and to stick with the program.

Initially I considered the 5km event.  After all, I hadn’t run in seven years and I was about seventy pounds overweight. And the event was just six months away. But the little voice in my head that never shuts up until it gets its own way piped up and chanted, “Half-marathon! Half-marathon! Half-marathon!” And before I knew it, I had clicked on the link in the email and signed up for the half-marathon. Six months later, I stood at the finish line somewhat stunned by the fact that in just half a year I had shed sixty pounds, gotten myself into some semblance of “shape”, and completed a half-marathon.

A year further down the line, I have run several races and two more half-marathons.  Another two are planned for 2011, and my comeback to running is now firmly established.  All thanks to those two little boys who were snuggled up together this morning, sleeping beside each other, making me feel like the richest person on the entire planet.

Have you ever done something that you thought would be beyond your limits?  What motivated you, and what helped keep you going when things got tough?

(P.S. My first post for World Moms Blog was published today.  Check it out:
http://worldmomsblog.com/2010/11/17/little-brother-big-hero/)

Filed Under: autism, Children, family, fundraising, parenting, running, Siblings Tagged With: , , , , , , , , , , , ,
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Give me a place to stand…

November 8, 2010 By

Last week I stepped out of the real world for a few days while I attended the 2010 Geneva Centre for Autism symposium, here in Toronto. It was a phenomenal event – it was much more than I had expected it would be. When the conference ended on Friday afternoon, I literally felt as if I had to step out of a bubble back into my life. But I resumed my life with an altered perspective, and a deep new understanding of my son.

For three days, I was in the presence of true greatness. I had the opportunity to listen to presentations by professionals in the field of autism, such as Tony Attwood and Nancy Minshew.  I heard talks by individuals who have lived with autism themselves, who have made successful lives for themselves – people like Temple Grandin and Stephen Shore. I listened to the beautiful music of two people with autism, Michael Moon and Samantha Mutis, which brought tears to my eyes. I was surrounded by hundreds of delegates – teachers, therapists, other parents like myself – who were all gathered together for the sole purpose of learning how to help and support people with autism, and thereby make the world a better place.

Going into the conference, I expected to learn some new stuff. That was, after all, my reason for going. I wanted to get some insights, hear about new research, learn about possible ways of doing things differently and more effectively for George. Did I accomplish this goal? Let me put it this way. Not only did I learn more about autism than I would have thought possible in three days, I actually feel as if I got to step into my son’s mind. Listening to the speakers, many of whom live their lives on the spectrum, I got to step into the world of autism in a way that I have, until now, not been able to accomplish.

I feel honoured that these individuals allowed me into their world and shared of themselves so freely. These people, for whom life has been a series of challenges that most of us will never understand, have collectively turned me into a better person and a better Mom.  They have, through their willingness to share their experiences and give hope to parents of children with autism, created a landscape in which my son can have a better, more productive, more fulfilling life. What an opportunity that is.  What a gift those people have given to me and my family.  I feel truly blessed to have been there.

I learned that in order to teach social communication, we need to teach social thinking, and that in too many instances we focus on the diagnosis – the word “autism” – rather than on the specific challenges of the individual. I heard about how in all of us – especially people with autism – negative emotions may manifest as anger, and that we should always dig deep and look for the real underlying emotion. I have learned to use the phrases “expected” and “unexpected” when describing behaviour because the terms “appropriate” and “inappropriate” imply a value judgment that doesn’t help anyone. I now know that instead of fighting George’s fascination with garage doors and writing it off as an autistic obsession, I should use it as a stepping stone to help him learn and accomplish new things. And much more.  So much more.  I am still internally processing everything.

I left the symposium with the knowledge that so much is possible. I can see a whole new world opening up for my boy.  It is up to me and Gerard to ease the path for him, to help him see where he can go and what he can achieve.

While I was at the conference, I bought myself a piece of autism awareness jewellery.  It is a chain with a puzzle piece on it, the puzzle piece being the universal symbol for autism awareness. Behind the puzzle piece is a circular disk with a quote engraved on it. The quote is a perfect reflection of the possibilities that lie ahead for George, if he is given the right support along the way.

“Give me a place to stand and I can move the world”  ~ Archimedes ~

Filed Under: autism, parenting Tagged With: , , , , ,
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Social uncommunication

November 1, 2010 By

Today is a big day for the autism community.  It is the day of the global communication shutdown, in support of individuals who spend their lives on the autism spectrum.  Those participating in the shutdown are voluntarily doing without Facebook and Twitter for a day. The idea behind this is for us to experience for one day what our loved ones with autism go through as part of their daily lives – the frustration and feeling of lostness that comes with not being able to communicate.

For all intents and purposes, Facebook and Twitter do not exist for me today.  The only thing that will be posted under my name to my Facebook wall will be the auto-publish of this post.  If anyone tags me in comments or pictures today, I will not know it. If anyone messages me – either privately or to my wall – they will have to wait until tomorrow for a response.  I will not find out until tomorrow morning whether anyone helped me win Fast Money in the Facebook Family Feud app.  I have not gotten to see anyone’s Halloween pictures, I don’t know how my Scottish friend’s job interview went, I don’t know what anyone’s up to today. Much of what happens today I will probably never know about, because by the time I get back onto Facebook tomorrow, it will be old news.  Same with Twitter.  If anyone is waiting on the edge of their seats for tweets from me, they’d better settle in for the long haul.

It’s an interesting experience, partly just because of the habit of it. Giving up Facebook for a day is a bit like giving up smoking for a day (actually, there’s an idea: a global non-smoking day in support of those affected by cancer). I remember what it was like when I gave up smoking fourteen years ago. One of the hardest aspects of it was simply breaking the habit of physically picking up and lighting a cigarette after a meal, or as an accompaniment to my morning coffee.  Similarly, it is now my custom in the mornings to pour myself a coffee and drink it while first reading emails, and then seeing what’s going on in Facebook Land. I almost clicked the Facebook icon today just because it’s what I always do.

So what I am I learning from this experience? Do I feel a better sense of understanding for what my son lives with?

To be honest, probably not. Oh, don’t get me wrong. I do feel the frustration of non-communication. I do feel that I am cut off from a part of my life that I have grown to be dependant on, and in a sense, I am feeling a sense of what it is like for George. But I am mindful of the fact that I am doing this by choice.  I know that it is a one-day thing, and that tomorrow I will be able to catch up on much of what I am missing today.

George lives with his social communication difficulties day in and day out. He has not chosen to separate himself from the world. He cannot make the choice to wake up tomorrow and be fully verbal and socially conversant.  Tomorrow, when I return to the world of social media, George will still have autism.

I am still glad that I and thousands of other people have done this. Maybe, in some small way, this global effort will make the world a better place for George and people like him.  Maybe the people who have chosen to be a part of this shutdown will, in the future, be a little more tolerant of children they see having meltdowns in public. Maybe someone will give a job to someone with autism. Maybe a politician, somewhere in the world, will vote in favour of a bill to help special needs individuals.  If a child has trouble getting a point across in a classroom, maybe the teacher will recognize the possibility of autism instead of dismissing the child as “stupid”. Maybe a doctor will finally listen to a mom who has been begging for an evaluation referral for her child. Maybe this shutdown will lead to a lot of little good deeds that will have a ripple effect throughout the world.

Today will not enable me to know what it is like to be autistic. But it does give me hope for a future in which people with autism are recognized as valuable, integral parts of the fabric of human society.

Filed Under: autism, Communication Tagged With: , , , , , ,
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