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He ain’t heavy, he’s my brother

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

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

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

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

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

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

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

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Thank you for being there

Every now and then I have a run that is so great that I do a happy dance at the end of it.  I mean that quite literally – I stand in my driveway and do this weird little hoppity-hop thing that I’m sure makes the neighbours more than a little perplexed.  I had been looking forward to this yesterday’s run since the weekend.  I am currently enjoying some time off from work, so instead of dragging myself out into the dark at 5:00 a.m. yesterday, I was able to wake up at my leisure, get the kids safely off to their respective places, and hit the road at about 9:00 a.m.

I woke up feeling a little rough.  Although I had a reasonable amount of sleep the previous night – meaning I got more than six hours – half the night was spent on the sleeper couch with James, who had woken up feeling lonely (quick diversion: I want my kids to know that they can come to me at any time of the day or night. There are people who believe co-sleeping with their children is a Very Bad Thing.  I am not one of these people).  Here’s the thing about the sleeper couch: it ruins my back.  When I sleep there I wake up feeling as if someone has spent the night pounding on the back of my neck with a rubber mallet.  However, I was determined to go running – I am a bit weird that way, once went for an eight-kilometre run with a sprained ankle – so I did some stretches, laced up my shoes and went out.

It was only 5km, but it was a really fantastic run.  For the first time since returning from my illness/injury, I actually beat my virtual partner.  Maybe I should explain the virtual partner.  A few months ago I upgraded my training watch to one that has GPS.  The new training watch has a feature that allows you to set a target pace per kilometre, and throughout the run you can visually see how you’re performing compared with the target pace.  The virtual partner “runs” at the target pace.  Since recovering from my illness I have been consistently running fifteen to thirty seconds per kilometre behind the virtual partner.  I have been OK with that – I have, after all, been in recovery mode.  Today, though, I finished my run several seconds ahead of pace.  The psychological boost I felt from that was tremendous.

Yesterday’s run was part of what is turning out to be a phenomenal week.  On Tuesday, I had my first consultation with Brandon, my holistic lifestyle coach.  Under his guidance, I am going to take steps to get my life in balance.  It will have a positive impact on all areas of my life – parenting, running, work, my relationship with Gerard.  I feel as if I have entered a new positive phase of my life.  I also have a maid of honour for my wedding!  There are no words to describe how amazing my friend Michelle is.  What started as a simple car-pooling arrangement has turned into a deep friendship, and it will truly be an honour to have her standing beside me when I get married.  My friend Jenny also deserves a special mention.  She has been my best friend since we were both ten.  She has put up with all kinds of crap from me, seen me through some very intense crises, and just been there for me no matter what.  The fact that she lives on the other side of the world to me has not lessened our friendship one bit.  And because distance will prevent her from being here for my wedding in person, I know that she will be here in every other sense.  She will be as involved as she can be in the planning of the wedding – thanks to the joys of the Internet.

Yesterday I went to the airport to pick up my friend Fran.  Fran is a South African who moved to Vancouver (well, an hour outside of Vancouver) a few months ago.  I have known her for years, and have not seen her for a long time.  She is staying with me for a few days: we are planning to hang out, relax, have fun, go running together (even a race on Saturday!), and gossip about people we both used to spend a lot of time with.

In talking about these people – my family, my friends, people like Brandon who are helping me in a professional capacity – I realize just how blessed I am.  I am surrounded by really incredible people.  I am very lucky, and I hope I can always remember that when things get rough.  And I want to say to these people – Gerard, my boys, my Mom, my late Dad, my biological parents who did such an amazing unselfish thing to give me a better life forty years ago, my wonderful, wonderful friends, everyone who touches my life in such a special way – thank you for being you.  Thank you for being there.

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Thank you for being there

Every now and then I have a run that is so great that I do a happy dance at the end of it.  I mean that quite literally – I stand in my driveway and do this weird little hoppity-hop thing that I’m sure makes the neighbours more than a little perplexed.  I had been looking forward to this yesterday’s run since the weekend.  I am currently enjoying some time off from work, so instead of dragging myself out into the dark at 5:00 a.m. yesterday, I was able to wake up at my leisure, get the kids safely off to their respective places, and hit the road at about 9:00 a.m.

I woke up feeling a little rough.  Although I had a reasonable amount of sleep the previous night – meaning I got more than six hours – half the night was spent on the sleeper couch with James, who had woken up feeling lonely (quick diversion: I want my kids to know that they can come to me at any time of the day or night. There are people who believe co-sleeping with their children is a Very Bad Thing.  I am not one of these people).  Here’s the thing about the sleeper couch: it ruins my back.  When I sleep there I wake up feeling as if someone has spent the night pounding on the back of my neck with a rubber mallet.  However, I was determined to go running – I am a bit weird that way, once went for an eight-kilometre run with a sprained ankle – so I did some stretches, laced up my shoes and went out.

It was only 5km, but it was a really fantastic run.  For the first time since returning from my illness/injury, I actually beat my virtual partner.  Maybe I should explain the virtual partner.  A few months ago I upgraded my training watch to one that has GPS.  The new training watch has a feature that allows you to set a target pace per kilometre, and throughout the run you can visually see how you’re performing compared with the target pace.  The virtual partner “runs” at the target pace.  Since recovering from my illness I have been consistently running fifteen to thirty seconds per kilometre behind the virtual partner.  I have been OK with that – I have, after all, been in recovery mode.  Today, though, I finished my run several seconds ahead of pace.  The psychological boost I felt from that was tremendous.

Yesterday’s run was part of what is turning out to be a phenomenal week.  On Tuesday, I had my first consultation with Brandon, my holistic lifestyle coach.  Under his guidance, I am going to take steps to get my life in balance.  It will have a positive impact on all areas of my life – parenting, running, work, my relationship with Gerard.  I feel as if I have entered a new positive phase of my life.  I also have a maid of honour for my wedding!  There are no words to describe how amazing my friend Michelle is.  What started as a simple car-pooling arrangement has turned into a deep friendship, and it will truly be an honour to have her standing beside me when I get married.  My friend Jenny also deserves a special mention.  She has been my best friend since we were both ten.  She has put up with all kinds of crap from me, seen me through some very intense crises, and just been there for me no matter what.  The fact that she lives on the other side of the world to me has not lessened our friendship one bit.  And because distance will prevent her from being here for my wedding in person, I know that she will be here in every other sense.  She will be as involved as she can be in the planning of the wedding – thanks to the joys of the Internet.

Yesterday I went to the airport to pick up my friend Fran.  Fran is a South African who moved to Vancouver (well, an hour outside of Vancouver) a few months ago.  I have known her for years, and have not seen her for a long time.  She is staying with me for a few days: we are planning to hang out, relax, have fun, go running together (even a race on Saturday!), and gossip about people we both used to spend a lot of time with.

In talking about these people – my family, my friends, people like Brandon who are helping me in a professional capacity – I realize just how blessed I am.  I am surrounded by really incredible people.  I am very lucky, and I hope I can always remember that when things get rough.  And I want to say to these people – Gerard, my boys, my Mom, my late Dad, my biological parents who did such an amazing unselfish thing to give me a better life forty years ago, my wonderful, wonderful friends, everyone who touches my life in such a special way – thank you for being you.  Thank you for being there.

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Never forget the siblings

As I work towards my Run for Autism, my inspiration is George.  He’s the only member of my family – either immediate or extended – who has been touched by autism.  I could go on all day about his challenges, his strengths, and the fact that what most “typical” parents see as minor developmental milestones are, to me, gigantic accomplishments that make me want to jump for joy.  I am in the process of starting to work with a holistic lifestyle coach named Brandon: the first time I spoke to him he told me that while parenting in general is equivalent to a full-time job, parenting a child with autism is equivalent to an additional full-time job.  It makes sense.  I have to maintain two completely separate styles of parenting for my two children, because what works for one definitely would not be appropriate for the other.

And in this sense my Run for Autism is inspired not only by my autistic son George, but also by my neurotypical child James.  James, in addition to just being James, a unique individual in his own right, is also the brother of an autistic child.  Although he is chronologically the younger of the two, in most senses he is actually older.  He has the verbal skills, the social skills, the adaptive skills that his brother does not have.  There are times when he is called upon to understand the kinds of things that kids his age shouldn’t have to worry about.  He has a very strong sense of what is and is not fair, and when George’s autism leads to us reacting in a way that James perceives to be unfair, it can be very hard for his four-year-old mind to process.  Being the sibling of an autistic child cannot be easy.  And so when we do something to improve the lives of autistic children, we are also by extension doing something to improve the lives of their siblings.

We are very fortunate that James is the kind of child that he is.  He is a highly verbal, very social child.  He has opinions and he’s not afraid to express them.  Although there is definite sibling rivalry, James adores his big brother.  If he is given a cookie, he requests one for George.  If we do something simple like take George’s hat off his head in a playful moment, James will get upset and demand that we return the hat to its rightful owner.  When George is having a meltdown, James feels sad and says things about how he will take care of George.  He has never used the word “autism” in relation to George, but he is aware of George’s disability. Based on his character, both Gerard and I believe that James will grow up to be friend and advocate to his brother.

I frequently worry about whether I am doing right by James.  So much of James’ life is shaped by George’s autism.  A simple example is Mr. Potato Head.  George loves Mr. Potato Head.  He has about twenty of them, and he has to know where they all are at all times.  If anyone touches his Mr. Potato Heads he gets very upset.  Any Mr. Potato Head that enters the house is automatically deemed to be George’s property.  There have been times when James has tried to play with a Potato Head, and he’s been prevented from doing so, either by George himself or by parents who are too frazzled to deal with a meltdown.  Over time, James has been conditioned to not play with Mr. Potato Head.  I have no idea whether he’d like it or not, and I feel oddly sad that we’ll never find out.  Another one like that is Lego.  We tried getting James Lego that is different in appearance from what George likes, but we have had limited success.  James will still make the occasional attempt to play with Lego, and if I happen to be around, I play with him and fend off George’s intrusions.

I sometimes wonder whether James’ passion for trains and cars is genuine, or if it’s just something he has gravitated to because George isn’t really interested in them.  When these thoughts start troubling me too deeply, I console myself with the knowledge that James truly does love his cars and trains and gets a lot of joy from them.

What I really want to convey is this: autism does not only affect the individual diagnosed with it.  It touches every member of the family.  The autistic child is not the only one who needs special care and attention.  We must never forget the siblings.

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Who am I and what am I doing here?

I sometimes tell people that I am a normal mom – overworked, overextended, overscheduled, and overwhelmed.  But in my household, we use the word “normal” very loosely if at all.  For a start, I’ve never really believed in the concept of “normal”.  It’s too subjective – one person’s “normal” is another person’s “what the hell is going on here?!?”  And the fact that one of our children has special needs throws a wrench into the whole idea of normality anyway.

To start from the beginning: I am a transplanted South African living in Toronto, Ontario.  I proudly became a Canadian citizen three months ago, on the same day – indeed the same ceremony – on which my partner of eight years proposed to me.  Gerard and I have two children together.  George is six years old, and if I were asked to describe him in one word, that word would be “sweet”.  He may be autistic, but he is such a sweet, gentle soul.  He is touched with a kind of grace that is impossible to put into words.  His mind goes to places that are unreachable to the rest of us – these places are sometimes frustrating, both him and to his family – but at times he is so present, so with us.  He does not talk much and has a lot of trouble with social engagement, but he is a smart kid who can read (although not necessarily comprehend), count, add, and write his own name.  He is full of love.  He is never short of a hug for his family, and has a healthy level of sibling rivalry with his younger brother James.

To describe James, I would use the word “dynamite”.  James is four, and depending on your own personal views, his Christmas Day birthday can be seen as either a blessing or a curse.  We ensure that he gets his full quota of attention by throwing half-birthday parties for him in the middle of the year.  James is loaded with energy.  You know those cartoons in which a series of streaking white lines depicts a character running by so fast that you cannot see him?  That’s James.  The kid never stops.  He approaches life in the same way a bull approaches a china shop – as several visits to the Emergency Room over the last four years will testify.  He is always busy, always talking a mile a minute.  He gets into spats with George, but he is also a wonderful little brother.  He is considerate of George’s challenges – not because he has to be, but because he wants to be.

I am lucky to have Gerard.  He is a truly wonderful father to the boys.   We have been through some very hard times – so hard that at one point, we didn’t know if we would make it.  But we have gone through the fire and survived – and we now know that there is nothing we cannot work through.  We are planning next year’s wedding with lots of excitement and anticipation.  Although getting married isn’t going to change anything in practical terms, it will be symbolic of a new and wonderful stage in our life together.

My passion – apart from my family, that is – is running.  I used to run years ago, but having kids put a kaibosh on that for many years.  For ages, I tried to get back into it, but there was always a reason why I couldn’t.  Then, about a year ago, the right motivation came in the form of an email.  The Geneva Centre for Autism was entering a team in a major Toronto running event.  Parents were invited to register for the race and raise pledges.  All funds raised would go towards providing services for autistic children and adults – people like my son George.

Wow.  An opportunity to do something for my son.  As soon as I saw this email, I knew that I had finally found the reason that I would not give up.  Although I could barely run around the block at the time, I signed up there and then for the half-marathon, six months away.  For the next six months, I trained and rediscovered my love of the sport.  And on September 27, 2009, I stood at the finish line with a finisher’s medal around my neck and a village-idiot grin on my face.  My legs were screaming, but every other part of me was on an incredible emotional high.  I had done it.  I had run this race for my child.  And I knew I was going to be back.

The Geneva Centre is entering a team for the 2010 event, and I have already signed up for the half-marathon.  I am just emerging from three months of illness and injury, but my training is already getting back on track.  I have a busy racing season ahead of me, starting with a 10km event on April 3rd.  All of the training, all of the races that I participate in over the summer, will lead up to this one event – my run for autism on September 26th.

Follow me as I go through the trials and tribulations of training, the early morning solitary runs in the dark, the long Sunday runs with the sun beating down on my shoulders.  Moan and groan with me as I massage my aching muscles, and stand with me at the finish line as we celebrate a triumph for autism on the day of the race.