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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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Christmas Without Casualties

December 29, 2010 By

Christmas is always such a weird time of year in my family.  It’s a mixed bag of emotions for me, ranging from the very bad (my Dad’s death three weeks before Christmas six years ago) to the very good (my younger son’s birth on Christmas Day five years ago).  Then there’s the fact that almost every year, I find myself inthe midst of some strange family drama that has very little to do with me.  I have to deal with someone threatening to boycott Christmas, someone else threatening to decline gift exchange, bizarre arguments, and plans that change multiple times before landing on the original arrangements.  Then you add a child with autism, and built-in resistance to changes in routine, and the picture gets very interesting.

This year it wasn’t too bad.  As always, I missed my Dad in the weeks leading up to Christmas, but took heart from the fact that Christmas was his favourite time of year and he would be bitterly disappointed to see me having a miserable time on account of his passing.  So it was with nostalgia and bittersweet memories that I put up the Christmas decorations this year, just a week before Christmas.  Dad would have approved of the Christmas tree laden with ornaments, including James’ plastic Playdough scissors that he insisted be hung on the tree right below the angel.  He would have loved the little village I have in George’s room, complete with lights and snow, and he would have nodded approval at the little Christmas tree with lights that I got especially for James’ room.

Here’s the amazing thing that happened this Christmas.  There was no family drama.  Let’s say that again, shall we?  No.  Family.  Drama.  Admittedly, we came close.  Gerard and his mother had some words.  Said words were taken out of context by both parties, and a big misunderstanding ensued.  I have so enjoyed the wonderful feeling of peace and harmony that we have been experiencing with my mother-in-law, and I did not want to let that slip away because of one stupid conversation.  I spoke to Gerard.  I spoke to my mother-in-law.  I smoothed the waters, and explained to each of them what the other meant, and peace reigned again.  Mother Theresa would have been proud of me, and for the first time in years, we were able to celebrate the festive season without waiting for the other shoe to drop.  It was truly a Christmas miracle.

Things were OK on the George front as well.  His resistance to changes in routine has intensified over the last few weeks, and while this did cause some difficulties, there were no crises that we couldn’t handle.  They were little things, like the fact that he got extremely anxious whenever the lights on the big Christmas tree were turned on (interestingly enough, he has no problem with the lights on the little tree, or the lights in the village in his room).  So, we dealt with it in the simplest way possible.  We did without the lights on the tree.  When he saw presents, he wanted them opened right away.  Seeing a wrapped present that he’s not allowed to open is not a pleasant experience for George.  Lots of distraction and tactical planning later, we had all survived, and apart from one casualty, all of the presents were left intact until the proper time.

There was one very difficult moment on Christmas Eve, after my brother-in-law had left with his wife and baby, when we were trying to get the kids settled for bed.  Both of the kids, no doubt reacting to the excitement and pure overstimulation, had meltdowns.  One autistic, one neurotypical, manifesting their pent-up anxieties in different, but equally loud and stressful, ways.  Simultaneously.  It was like Meltdown Central at my house, and it took a long time for calm to be restored.

In the end, though, Santa was good to everyone, and we all got through several days of Christmas (and one birthday) as a harmonious, happy family.   I can truly say this: Dad would be proud.

Filed Under: Children, Christmas, dad, family 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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From pumpkins to fishermen

November 2, 2010 By

When I went running early on Sunday morning, I was startled to see a pumpkin rolling right into my path. I was perhaps more surprised than I should have been: this was, after all, the morning of Halloween. But still, when it’s six thirty in the morning and you’re running at an even pace along an open sidewalk, you don’t expect to see a large pumpkin rolling down some steps and coming to rest at your feet, with its carved face grinning up at you in a manner that can only be described as macabre.

The pumpkin was followed by a large dog, who I think had knocked it off the steps. Still, it was an interesting way to start my Halloween. It threw my run off a bit, because I was now expecting to have to dodge pumpkins every thirty seconds. Fortunately, I made it home in one piece, without further incident, and ahead of the virtual partner on my Garmin training watch.

That evening, after a day of James asking every fifteen seconds whether it was trick-or-treat time yet, we got the kids all dressed up in their glad rags. James had spent the whole of October changing his mind about what he wanted to be. He flip-flopped between Lightning McQueen, Batman, a Transformer and a frog before settling on Ironman. I don’t know who Ironman is or what his special powers are, but James says he’s cool, and really, who am I to argue?  It’s not like I’m an authority on the subject.

I wish I was one of those Moms who can conjure up a convincing costume from scraps of material in the house, but I’m not. I’m one of those Moms who could probably be beaten in a sewing contest by a one-year-old, so I went to Toys R Us and managed to get the last Ironman costume they had in stock. Never mind that it was two sizes too big for James. I put him into the costume, tightened the elastic on the mask, and he looked great. Very Ironman-like.

George was a bit more of a challenge. I have never really known what to do for him for Halloween, because he doesn’t wear costumes. He has pretty intense sensory issues where his clothing is concerned, and he is super-picky about everyday clothes, never mind the weird Halloween stuff with masks and capes and stuff. His costumes have to approximate real-life clothing as closely as possible.

Something that worked in our favour this year is George’s obsession with wearing hats. Not baseball caps, but what I used to call “old man hats”. I put a life jacket on him, gave him a fishing rod, and called him a fisherman. Using cardboard, I made a giant colourful fish with a goofy grin, and I attached it to the end of the line.

Both costumes were a hit. For the first time ever, George actively enjoyed the trick-or-treating. He wore a giant grin that showed off the gaps in his teeth to perfection. James was in charge of ringing doorbells. Both kids collected a scary amount of candy that will last from now until Christmas.

Because of George’s challenges, Halloween has always been a day fraught with anxiety, probably more for me than for George. This year was different. Everyone had fun, and we all went to bed exhausted, but relaxed and happy.

Filed Under: Children 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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Running in the concrete jungle of life

October 22, 2010 By

I suffer from the age-old, clichéd, and frankly boring problem of being a woman with not enough hours in the day. I find myself going to bed ridiculously late and not getting enough sleep, and from time to time I wonder why this is. Am I really that busy or do my time management skills just suck? In analyzing this question, I decided to draw up a rough schedule of what happens in a typical day.

6:00 – 7:15    Wake up, get myself dressed and ready, get James dressed and ready.
7:15 – 7:30    Take James to daycare
7:30 – 8:45    Commute to work
8:45 – 4:45    Earn my keep
4:45 – 6:15    Commute home
6:15 – 7:30    Cook dinner, eat dinner, get kids to eat their dinner
7:30 – 8:00    Supervise George’s homework, read library books with both boys
8:00 – 9:00    Get kids bathed and into bed. Throw load of laundry into washing machine. Make sure car is locked. Make tea.
9:00 – 9:30    Get clothes ready for myself and kids for the following day. Make George’s lunch. Ensure kids’ backpacks contain homework, library books to be returned, forms to be returned to teachers, etc.
9:30 – 10:00    Clean up kitchen. Unload and load dishwasher. Turn dishwasher on and wash any dishes that don’t fit in dishwasher. Get coffee machine ready for the following morning.

What this means is that in the evenings, it’s around ten before I can even sit down at my computer and read emails. This is why I have given up on all of the Facebook games that end in “ville”. I just never have enough time to check on my farm, or my kitchen, or my pet. FarmVille – crops keep dying. FrontierVille – weeds keep growing. PetVille – pet keeps running away to the pound. You get the picture. So now, my Facebook games are the ones that I can spend five minutes or less on, where I won’t suffer penalties if I neglect them for five days.

Do you notice anything missing in the schedule above? Running. Where am I supposed to find time to run? If my daily timetable is anything to go by, my only options are (a) go running in time to be back by six in the morning, or (b) go running after ten at night. Option (b) isn’t really an option to me, because I would be worried about safety.  Something tells me that a woman running alone at that time of night would not be the smartest idea. So I’ve been going with option (a), getting up at 5:00 a.m., being out on the road by 5:15, and trotting back into my driveway by around 6:10 or so.

Except lately, this hasn’t been working out too well. George has been having issues sleeping – a phenomenon very common to children with autism. On any given night, there is roughly a fifty/fifty chance of him – and thereby me – actually getting a full night’s sleep. On the nights he wakes up, he crawls into bed next to me and plays with my hair. No matter how many times I gently move his hands away from my head, they always find their way back there, and he wraps it around his fingers, scrunches it up in his hands, sniffs it, strokes it, on and on and on until he drifts back to sleep. On the good nights, this lasts for half an hour or so. On the bad nights, it will go on for two or three hours.

It doesn’t matter how dedicated a runner you are. If you have a small child keeping you awake from 2:30 until 4:30, it is going to be near-impossible for you get up at 5:00, go running, and then put in a full day of work. It’s not even as if George’s nocturnal adventures are an occasional thing.  For the last month or so, it has been happening two or three nights a week.

It is hammering me, and I am increasingly stressed out by my inability to find time to run. Not running is not an option. Running late at night when I feel vulnerable is not an option. Running first thing in the morning when I’ve had no sleep is not an option.  So I have to get creative.

To solve the problem, I started by considering each run individually. I run five days a week, with Mondays and Fridays off. The weekend runs are not a problem: even if I have to get up early for those, I have the option of vegetating in front of the TV for the rest of the day (true, I’d have two kids jumping on me, but still). That takes care of four days of the week right there. On Wednesdays I go running with a group after work (kills my Wednesday evening schedule but I can live with that once a week), and I’ve worked out that I could do my Tuesday runs on a treadmill at the gym at lunchtime.

All of a sudden, the problem is a lot more manageable. Now, all I have to worry about are the Thursday runs. I’m still not too sure what I will do about those, but I’ll figure something out, either by just living with the early-mornings-after-no-sleep once a week or by doing some kind of creative reorganization to my schedule.

It just goes to show: when the running bug bites you, somehow you find a way to fit it all in.

Filed Under: life, running Tagged With: , , , , , ,
post

Lost: the sequel

October 14, 2010 By

Two days ago, my vulnerable seven-year-old son who has autism was taken to the wrong school by the bus driver.  Through the miracle of technology, the principal of the wrong school (hereinafter referred to as School A) was able to determine that George was a student of the right school (hereinafter referred to as School B).  School A principal drove George to School B, where he was welcomed with open arms by his teacher.  School B administrator called Gerard to tell him what had happened.  Gerard called me.  Together, we spent a sleepless night thinking of how very badly this situation could have ended.  we had visions running through our minds of kidnapping, assault, and all other kinds of God-awful things.

The following day, we set out to find answers.  Clearly, we needed to know how and why a situation had arisen that could have had potential to severely compromise the safety of our child.

Gerard went to see the principal of School A. He pointed out that since George wears a special seatbelt lock to prevent unsupervised wanderings up and down the aisle, he could not have simply got up and got off the bus.  Who had taken George off the bus and why? The principal explained that although his school did have a new student, that student was not expected until later in the afternoon due to a medical appointment. When the bus had shown up, everyone had been surprised. A teacher had gone out to meet the bus, and the bus driver had told the teacher that George was transferring to School A.  The driver gestured at George and mentioned him by name.  The teacher had no reason to not believe the bus driver – she simply assumed that someone had not passed on some piece of information to someone else.  This is, after all, an administration.  These things happen.

Gerard’s next stop was the therapy centre.  He deliberately timed his arrival to coincide with that of the bus driver, with the intention of getting the bus driver’s side of the story. The bus driver claims that her supervisor had called her late on Friday to tell her that George was being transferred to School A effective from Tuesday (Monday being a stat holiday).  The bus driver, who knows George very well, was surprised enough to verbally confirm, in the same conversation, that George was the child being transferred. In accordance with these instructions, the bus driver drove George to School A on Tuesday, and only discovered the next day that this had been a mistake.

The supervisor is now claiming that she never named George as the child being transferred, that she had named some other child with a completely different-sounding name. The supervisor is removing the bus driver from George’s route, and is quite possibly going to attempt to fire her.

It sounds to me as if this is what happened: The supervisor gave the bus driver the wrong name.  Instead of saying Peter or Simon or whatever the other kid’s name was, she said George. The bus driver followed through on the instruction she was given, not knowing it was incorrect. Thereby unknowingly placing a child with autism in a very vulnerable situation. Now the supervisor is trying to cover up her mistake by blaming the bus driver, and the bus driver could end up without a job because of the supervisor’s mistake.

Is it just me, or is this story disturbing on many, many levels?

Filed Under: Children, School Tagged With: , , , ,
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