Archives for March 2010

post

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.

post

Retrospectively speaking…

This morning I indulged in a bit of retrospection.  I was looking back at the day, almost three years ago, when a doctor broke the news to Gerard and I that our son had autism.  I remember that moment with such sharp clarity that just thinking about it brings back that stab of pain to my heart.  As I sat in the chair in the doctor’s office, I could almost feel the physical force of my world crumbling; I am convinced that the odd buzzing sound I heard was the sound of my expectations shattering.  In that instant I learned that the phrase “to have a weight on one’s shoulders” is not merely metaphorical: I actually felt a physical weight being placed on my shoulders.

The next half-hour or so was intensely painful.  Gerard and I sat and listened as the doctor told us his prognosis for George.  He may never talk, the doctor said.  He has very limited capacity for learning, and as he gets older the gap between him and his peers will get wider and wider.  He will always have severe cognitive delays, he will not be able to function in the world of “normal” people without constant care and supervision.  He probably won’t complete high school; as an adult he may hold down a very basic job but he won’t actually have a career.  We, the parents, were advised to prepare ourselves for a lifetime of intense hands-on parenting.  It all sounded so hopeless, as if George was doomed to a lifetime of misery.

Once the disabling shock and desperation had worn off, I made a decision.  The doctor would be wrong.  I accepted that George might always be different to other people of his age, but we would do whatever it took to help George reach his full potential, whatever that might be.  I was not going to let the well-meaning but pessimistic doctor dictate what George would or would not accomplish.  I would become an advocate for George, I would learn as much as I could about autism, I would give him whatever opportunities were feasible.

And so the hard work began.  My first mission – on the advice of his speech therapist – was to teach him to point.  It was explained to me that pointing is a crucial precursor to basic speech.  Babies point before they can talk; pointing is a very simple, basic, and effective form of communication.  Most kids learn how to point intuitively; children with autism need to be taught.  And so I taught.  Every evening for nine months, I would sit with George and a variety of books, painstakingly pointing to this thing or that thing, using hand-over-hand assistance to help him point.  Prompting, reinforcing, encouraging, never giving up.  There were days when it seemed as if I was getting nowhere.

Are there words in the English language that can describe the immense, overwhelming emotion I felt on the night when George hesitantly, almost shyly, lifted up his tiny hand, formed it into the shape of a point, and with his index finger touched a picture of Bob the Builder in the book we were looking at?  The memory alone makes my eyes go misty.

Since that day, there have been many accomplishments.  George still doesn’t talk a lot, but he makes requests using full sentences.  He even says please.  In recent weeks, he has tentatively entered the world of imaginative play by pretending to be a turtle.  He can read, he can spell out full sentences using his alphabetic fridge magnets.  He counts to a hundred and beyond, and he is learning to do sums using the big wooden abacus that a relative bought for him.  He finds what he wants on the computer without assistance, even typing his own search strings into Google and Youtube.  He has unique but effective problem-solving techniques.  The teachers and therapists who work with him are united in their opinion that George is a very smart kid.  When it comes to numbers, he outperforms typical kids of his age.

There are challenges, of course.  There are the tantrums, the autistic meltdowns, that originate from things I cannot always identify.  There is his refusal to try foods he has never seen, his phobia of doctors, the fact that I have to cut his hair and his nails while he is sleeping to avoid a panic-induced meltdown.  There are the sleep problems that plague us from time to time, especially when there has been a change in routine.  There is his heartbreaking frustration when he tries to express something to us but does not know how to.  There are the times when I have to spend over an hour physically restraining him from banging his head on the wall or the floor.  There are the persistent social communication delays and his anxiety in big groups of unfamiliar people.

Yes, there are a lot of challenges, a lot of days when I want to tear my hair out.  But that doctor was wrong, damn it!  I wish I had the opportunity to tell him so.  I honestly believe that he would be very happy to know that in this particular case, he was wrong.

George is loaded with potential.  I have no doubt that as an adult, he will be one of many autistic people making a truly valuable contribution to society.  It is truly my honour to be running for him and for people like him.

post

Pledging for my Run for Autism can begin!

Today marks an exciting milestone in my journey towards my run for autism.  I registered for the race back in November or December – about three seconds after race registrations opened.  About a month later, I registered for a number of other races over the course of the summer months – events that I will participate in as I lead up to the main event in September.  I have my training plans, my custom orthotics, my training watch with heart rate monitor and GPS.  As time goes on, I will need to get some new running gear, including a new pair of shoes.

Today is a milestone day for two reasons.  The first is that I since I am not only a runner but a member of the Geneva Centre for Autism committee that is organizing this endeavour, I will be attending the first committee meeting later on.  There, we will set our fundraising goals and discuss ways to get more people to participate, either by running or by pledging.I will be a runner’s voice on the committee, offering my views on how to encourage and motivate runners leading up to the event, and ways to ensure their success on the day itself.

And secondly, the race organizers have officially opened up the Charity Challenge, meaning that my own personal fundraising page is now up and running.  I invite one and all to click on the link and take a look.  Look at the pictures that I’ve uploaded, watch a couple of videos and see the beautiful boy that is my inspiration, my son who I am doing this for.  If you are interested in adding a pledge, it will be very gratefully accepted and will make a positive difference to someone with autism.

More pictures and videos will be added to this page as time goes on. But for now, this is what I’ve got.  I am so excited that this is all now official!
http://my.e2rm.com/personalPage.aspx?registrationID=841310

post

Can I do it? Yes, I can!

I was a little nervous about going running yesterday.  Since I resumed running after an absence of three months just a week ago, I have been sticking to the somewhat safe distance of 5km.  I needed a slightly longer run yesterday,though.  I have a fairly full race schedule this year, starting with a 10km race on April 3rd.  I cannot run in any of my planned events by doing 5km training runs – it was time to start upping my Sunday run distances.

On the one hand, I wasn’t sure if I was ready for a longer run.  The last time I ran more than 6km was three months ago.  On the other hand, though, I have learned that long runs are all about the strategy.  You have to rely on more than your legs and a good pair of running shoes.  You have to plan your approach, and when you’re out on the road you have to listen to your body and interpret the signals.  With this in mind, I planned on 8km – not exactly a long run, but longer than anything I’ve done in a while.

To my surprise, it went very well.  When I run 5km, I set a brisk pace from the beginning and maintain it as best I can.  For my 8km run yesterday, I switched on my “long run” mindset.  I started out slow and ran the first kilometre or so at a very easy pace, not caring that the virtual partner on my training watch was streets ahead of me.  As I warmed up, my pace gradually increased.  I always find it intriguing how that happens.  I don’t make any conscious effort to run faster.  It just happens.  So without putting any effort into it, I ran the second kilometre a full minute faster than the first.

Throughout the run, I did what I always do on long runs – I took a one-minute walking break every ten minutes.  I even use this amazingly effective technique (learned from the good folks at Running Room) for races.  It would be easy to think that this would slow a runner down, but in truth, I complete my long runs and my races faster by doing this than if I were to run the whole way.  Those walking breaks are an opportunity for me to avoid lactic acid buildup in my legs, to let my heart rate drop a little, and to drink some water without having it slosh all over my face.  Drinking and running at the same time is not as easy as you might think!

Before I knew it, the 8km was up and I was running back into my driveway.  My total time was about a minute and half behind target, and I was very happy with that.  Considering the fact that I hadn’t run 8km in months, the fact that I was only a minute and a half behind was pretty good!  My pace over the last three kilometres was right on track.  And most important – something I aim for on every single run, long or short – when I came to the end of the run I felt as if I could have continued had I so chosen.

So yesterday’s run counts as a resounding success.  I now have two weeks to build from 8km to 10km, and then another seven weeks to build to 21km.  For the first time in weeks, I am confident that my race schedule is safe.  As long as I don’t break a leg or something.

When I finished my run yesterday, I stretched and then went into the house.  In the living room, the kids were playing.  James, the little brother with a big brother’s role – exuberant, energetic, always with plenty to say.  And George, my beautiful boy who is my inspiration every single time I lace up my running shoes.

Whenever I wonder if I can keep on running, all I have to do is picture my boys in my head to know that yes, yes I can.  George, touched by autism.  And James, sibling to an autistic child.  For them, I could do anything.

post

Overcoming the bad stuff

2010 did not exactly start off well for me.  In early December, I had suffered from a strep throat infection, during which I had only been able to lie down comfortably in one position for three days.  This resulted in some stiffness in my neck and upper back.  It was not crippling, merely uncomfortable, and my chiropractor was helping me out with it.  The day before New Years Eve, a chiropractic adjustment went horribly wrong.  I had excruciating shooting pains in my back and going all the day down my left arm.  The fingers in my hand went numb. While everyone else was out partying it up the following night, I was sitting on the couch writhing in agony. I missed the New Years Day Resolution Run – something that I had been looking forward to for weeks.

Over the next month, I went to the Emergency Room twice, was seen by five different doctors, and got four different prescriptions for drugs.  I cried myself to sleep each night because I was in so much pain, and I appropriated the kids’ giant stuffed gorilla because it was just the right size for me to rest my arm on.  I was taking Percocet for the pain every six hours, and when the pain between doses got too much for me to bear, I was taking Tylenol Three as well.

For a month I could barely stand up, let alone run. In the end, it was the folks at Toronto SEMI (Sports and Exercise Medicine Institute) who saved me from insanity.  The doctor there told me what I had suspected, which is that I had a pinched nerve.  The pinched nerves always get resolved, he said, and it could take anywhere from a few days to a few weeks to a few months.  I immediately started seeing one of the physiotherapists at SEMI, and within days I was starting to feel relief.  After two weeks, she told me I could try running again.  Two weeks after that, I was in full-on training mode again, and feeling great.

As soon as I had gotten back on my feet, though, I was struck down again.  I caught a cold, and the cold turned into something a lot worse.  I had a hacking cough, I had a fever that came and went, I was weak.  I was so sick that I was off work for two weeks, and was not allowed back without producing a doctor’s note certifying that I didn’t have one foot in the grave and the other on a banana peel. During this time, I was not able to run for three weeks.

Last weekend marked the end of this three-week drought.  I got up on Sunday morning, and although I was still coughing a bit and somewhat congested, I decided to give it a try. It went surprisingly well – slower than I would have liked, but considering all I’d been through over the last three months, I didn’t mind.  I was just happy that I was out on the road again.

On Tuesday I went for a lunchtime run.  Due to time constraints, my weekday runs cannot really be longer than 5km, but that’s still enough for a good workout.  About 500m into the run, my hair band snapped.  Not a good thing – I have quite a lot of hair.  I ran almost 5km with my hair streaming out behind me.  It reminded me of those movies about horses, where the horses are running across meadows with the hair on their tails flowing behind them in the wind.  That’s what I felt like.  A horse’s ass.  I had also misjudged the weather that day, so I was overdressed.  Hair flying every which way plus clothes that are too hot leads to a run that is uncomfortable and cumbersome.  I was not happy with my pace or the fact that my heart rate was reaching the stratosphere.

My next run was on Thursday.  I almost left my running clothes at home that day, because I had had zero sleep on Wednesday night and did not rate my chances for a good run.  But you never know, so I took my gym bag to work, not really expecting to use it.  Come lunchtime, I still felt like the undead, but knowing from past experience how a run can actually have healing powers, I suited up and hit the road.  My clothes were appropriate and my hair band stayed intact.  It was a gorgeous, sunny day, and I had a fantastic run.  Although the “pace buddy” on my training watch still beat me, my pace was a lot better than it had been on Tuesday.  My heart rate stayed within reasonable levels.  When I reached the end of the 5km, I could have continued.  It was one of those runs that reminds me why I love running.

I am planning another 5km run for tomorrow morning, and a longer one for Sunday.  I am looking forward to my 10km race on April 3rd.  I am hopeful that I will stay healthy this time.  I have to.  After all, there are only 190 days to my next run for autism.

post

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.