Tag Archives: potential

Beyond The Stars

29 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 29 – Six sentence story: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?

When my son George was diagnosed with autism, I didn’t really know what it meant or what he would ultimately be capable of.

I didn’t know what it would mean for my family, or for George’s sibling relationship with his little brother.

Since then, we have discovered that George has potential that reaches beyond the stars, and that all we have to do is help him get there.

We have discovered that he has a big  heart with an infinite capacity for love, and that he and his brother will be best friends for life.

There are challenges, and I worry about what the future could bring for my boy.

But I believe in him absolutely.

(Photo credit: http://www.flickr.com/photos/gsfc/5161800961/. This picture has a creative commons attribution license.)

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beauty without limits

21 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 21 – Health madlib poem: Go to http://www.languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

When I read this prompt, I thought it would be easy. It turned out to be a lot more challenging than I had expected. The Madlib gave me a poem that was beautiful in some parts, nonsensical in others. I had to throw out the first couple of attempts, and I finally got something that I could edit into something I could like. As tough as this exercise was, it was a lot of fun. Everyone should give it a try!

quietly i have never run, softly beyond my heart
my son, your smile is full of love
in your most happy tears are things which surprise me,
on which i cannot speak because they are too deep

your beautiful look profoundly will move me
though i have tried to understand
you see things in ways that are beyond me
exploring your world thoughtfully, intensely

your potential reaches the stars and sun
i move my world for you so that you may fly
i cross the ocean for you to know no limits
your path is different and the road is challenging

nothing gets in the way of your growth
the strength of your shy wonder: my child
i smile at the beauty of your blond hair
your blue eyes bright and sparkling with life

i would run to the ends of the world for you
so the world can be yours
you are amazing: son, brother, friend
your heart is pure, your smile lights up the sky

By Kirsten Doyle with a little help from e.e. cummings

Mother Knows Best

17 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 17 – Learned the hard way: What’s a lesson you learned the hard way? Write about it for 15 today.

I first started having doubts about our family doctor when he kept telling us that there was nothing that could be done about my husband’s sciatica. It was a very disappointing thing to hear: although not a life-threatening condition, sciatica had been giving my husband a whole new kind of agony for a couple of years, and now we were hearing that he would have to live with it for the rest of his life.

It seemed improbable.  What about physiotherapy, or if we were really pressed, surgery? What about a simple MRI scan or a referral to a specialist?

But my husband’s family had been seeing this doctor for years, and they seemed to have complete faith in him. My husband was resistant to my suggestions to see another doctor.

A few months later, when I was hugely pregnant, I took my older son to the same doctor for his two-year check-up. All of the vital signs looked good. George was in healthy percentiles for both height and weight and he was not showing any signs of illness.

With the main purpose of the visit accomplished, I said to the doctor, “George isn’t talking.”

Indeed, George wasn’t talking. The only words that he used in a contextually appropriate way were milk, juice and jump. Like all new parents, I had practically memorized the developmental checklists, and I knew that George should be doing far more at this age.

The doctor asked a few questions, and then agreed that George did indeed seem to be delayed in his speech.

“But,” said the doctor, “The range of normal development is so broad, particularly where boys are concerned. I will give you some speech exercises to do with him at home, and we will see where we are in a year’s time.”

Every instinct I had was telling me that the doctor was wrong, that waiting was not the thing to do. I knew, had known on some level since George was an infant, that there was something wrong.

Instead of trusting my instincts, I listened to the doctor. I did the speech exercises with George, hoped against hope that he would simply open his mouth and talk one day, and then felt extremely guilty when he didn’t improve. Had I not done the speech exercises right? If I had spent more time on it would I have seen results?

At George’s three-year check-up I finally got a referral for a developmental assessment. When the autism diagnosis came in, all I could think of was how the doctor had told us to wait, and worse, how I had listened to a man I already had reservations about.

I thought about the year that George had lost because of this. The year of speech therapy and other autism-related interventions.

The guilt just about killed me.

And I swore that I would never, ever go against my “mother’s intuition” again.

(Photo credit: http://www.flickr.com/photos/truthout/3901813960/. This picture has a creative commons attribution license.)

2011 Run For Autism – The Countdown Begins

3 Jun

I’m feeling fantastic today!

Actually, that’s not strictly true. I was awake all night with a sick child, who at some point during the process very generously shared his bug with me, as a result of which I am bone-tired and tossing my cookies. So in reality, I feel really, really rough. I feel like a hedgehog that just got dragged backwards through the business end of a lawnmower.

But despite my less than stellar physical condition, I am feeling good about some things that have happened this week.

First, I resumed early morning running. I’ve been a little out of it for a while, and a lot of my running has been done on the treadmill. But two days ago, I dragged myself out of bed and went for a run before work. It was great. I felt the way I always do when go for early morning runs: alive, invigorated, positive about starting the day with an accomplishment. And since my route involves me running east over the Rouge Valley bridge, I get treated to the most spectacular sunrises. I mean, what’s not to love about all this?

Later that same day, I got a series of emails informing me that I am now officially registered for the Scotiabank Toronto Waterfront Half-Marathon. Which means that everything I do between now and then (everything running-related, anyway) is in preparation for that race. It is my annual Autism Run – the reason I got back into running two years ago. This will be my third year doing the run. In 2009, I finished in about 2 hours and 28 minutes. In 2010, I improved that time to 2:22:38, knocking more than six minutes off my time from the previous year. This year I want to do something even more spectacular, and break 2 hours.

That will be a tall order. Taking 22 minutes off a time over a distance of 13.1 miles? It’ll be tough. But that’s not going to stop me from trying.

The other thing this all means is that I am now officially fundraising, enlisting people to sponsor me for the run, trying to gather together as much money as I can that will all go towards providing services for children and youth with autism.

I cannot stress how important this is. George’s progress since diagnosis has been off the charts, but this is no accident. It has taken many hours of hard work, buckets of tears, patience, IBI therapy, parent training, information sessions, and advice. George would not be where he is today if it weren’t for the Geneva Centre for Autism, who have provided services and training and all kinds of other resources.

I cannot help but think that if George continues to get services that evolve with his needs as he grows up, the sky will be the limit for him. This child is so loaded with potential, but he does need help and support to realize it. If funding dries up, so does my child’s future.

So I spent some time yesterday setting up my fundraising page. I have set my initial target at $500, but I am really hoping to surpass that and raise the target. Preferably more than once.

My call to action is this: if you have the financial means, please consider sponsoring me for my run. If you cannot afford it (and I totally get  that – life ain’t easy for many people right now), then please spread awareness about autism. Help spread the word that people with autism are a valuable part of our society.

And if you circulate the link to my fundraising page, that will be an added bonus as well.

I am excited about getting this show off the road and doing the best I can for my George, which means doing the best I can for my family, and for the community of autism.

Racing For Autism

7 Feb

I have all kind of things pinned up on the walls of my workstation. There is the requisite work-related stuff (contact sheets, cost centre codes, month-end dates, cheat sheets on how to use the corporate phone system, and so on). Then, because I am a parent, I have artwork by my kids proudly on display (three masterpieces by each child). I have a card that my coworkers gave me along with a cake to celebrate the dual occasion of my citizenship and my engagement (to clarify: I have the card. The cake is long gone). There is my Cake Wrecks calendar, which is so funny that the tears of mirth streaming down my face make my mascara run (this week’s page has pictures of Valentines cakes with icing messages on them reading, “Sorry for stealing your boyfriend”, “Nobody loves you”, and “I didn’t like you that much anyway”).

Then there is my collection of race numbers. It’s a bit like a brag wall, really, but it’s one that I feel justified in showing off. It feels great to stagger in to the office on the Monday after a race, and pin up a new number. Looking at that number, along with whatever race time was associated with it, somehow makes all of the aches worthwhile. That and the fact that running is just awesome.

My first race after my comeback to running was on September 27th, 2009 – just over sixteen months ago. In those sixteen months, I have run a total of nine races, which collectively covered a distance of 130.3 kilometres or almost 81 miles. This year I will be adding at least another 91 kilometres (56 miles), and quite possibly more.

The truth of the matter is that there is only one race every year that really matters to me. It is the race that got me back into running in the first place, and it the focal point of my racing calendar. Every step I take in training, every other race that I run, leads up to this one. Without this race, I don’t think I would be doing this at all.

It is, of course, my annual Run for Autism, the Scotiabank Toronto Waterfront Marathon, Half-Marathon and 5K.

For several years during my long layoff from running, I tried to get back into it, but there was always a reason for me not to run. When I got that first email from the Geneva Centre for Autism inviting me to sign up for a race to raise funds for autism, I realized that all that had been missing was the right reason to run.

Initially I was going to sign up for the 5K race, knowing that it would be well within reach, but then I thought, “Screw that. Since when do I only do things that I know are within my reach?” I looked at the calendar, did some math, and worked out that in six months, I could just about train for a half-marathon from scratch.

The rest, as they say, is history.

Now I am looking forward to my third annual Run for Autism. I have a lot going on before then – at least four races including the Toronto Women’s Half-Marathon (Shirtless firefighters at the water stations! Free chocolate!). But really, the Autism Run is what it’s all about.

When the going gets tough, all I have to do is remind myself of why I am doing this. Because of a genetic roll of the dice (as I believe) I have a child with autism. Without help along the way, my beautiful boy would be at risk of getting lost in the system, of growing up without any opportunities. Instead, thanks to places like the Geneva Centre, the world is within his grasp. He has a lifetime of challenges, and his life will never be quite the same as most people’s – but along with the challenges comes opportunity.

My Autism Runs are all about raising funds for those services, to ultimately help make the world a better place for George and for other people like him.

Because really, look at him. Is this not a face totally worth running for?

Empathetically speaking

21 Jun

Two years ago, while I was home alone with the kids, I sliced my hand open on a broken glass.  I called my husband to take me to the hospital to get stitched up, and enlisted the babysitting services of my mother-in-law. As I sat with a bloody dishcloth wrapped around my hand, waiting for said husband and mother-in-law to show up, the kids stood there gawking at me.  To put it more accurately, James stood there gawking at me.  Then only two years old, he hadn’t yet grown a sense of empathy.  He was intensely curious about why Mommy was clutching her hand and making funny noises. George just laughed.  I guess the sight of me sitting there with a white face and straggly, witchy hair, dripping blood all over my clothes, could be seen as amusing, but at the time I was too focused on whether my hand was still attached to appreciate the humour of the situation.

That George’s reaction was so at odds with the situation is not surprising.  Lack of empathy is one of the hallmarks of autism. When James is hurt or upset, George will stand there laughing at him, much to poor James’ distress.  He has no way of understanding that George is not trying to be mean.  It’s not a case of George deliberately laughing at someone else’s pain. He simply doesn’t have the social cues to know when someone else is actually in distress.  The rest of us know that when someone cries, they’re sad, or when they say “ouch”, they’re hurt. People with autism have difficulty with this.

George has discovered a series of Youtube videos that fascinates him no end.  The videos feature an orange talking to other fruits on the kitchen counter.  The orange is incredibly annoying and makes all kinds of jokes at the expense of whichever fruit is unfortunately enough to be engaged in a conversation with it.  The videos always end by the orange saying something like “knife”, and then watching in horror as the other fruit gets sliced up to the sound of its own screams.  The videos are quite funny in a disturbing, South Park kind of way, and absolutely not appropriate for children.  George finds them absolutely hilarious – or he did before I got wind of them and started an endless campaign to stop him from watching them.

Yesterday, George’s attempts to watch the annoying orange were blocked.  Every time he tried to access them, I would close the browser window and drag him away from the computer.  He was getting very upset and agitated – more so when I announced that his allotted time on the computer was up.  The legs were kicking, the hands were flapping, the little face was wearing an expression of utter distress.  Just as I thought we were getting to the point of a meltdown, he looked directly at me – a relatively rare event – and with supreme effort, he said, “Mad”.

I was bowled over. This was a new development – a milestone to be celebrated, despite George’s state of upset.  In most circumstances, George would have simply exploded in a fit of frustration.  But now, for the first time ever, he had used an emotive word to express how he was feeling.  Instantly I saw the possibilities: if he was able to identify and label his own emotions, surely the next step would be to identify what other people were feeling and react appropriately.

Somehow I was able to divert George’s attention from the violent fresh produce videos.  I allowed him a bit of extra time on the computer, and he clicked onto Youtube videos showing scenes from Toy Story.  There is one scene where Buzz Lightyear and Woody are weaving in and out of traffic as they try to catch up with the family’s moving van.  The other toys band together and try to help them, and during all of the excitement Mr. Potato Head topples over and some of his bits fall off.  At this point in the video, George tapped me on the shoulder to get my attention.  He pointed at the computer screen and said, “Ouch.  Hurt.”

Empathy!  George had just shown empathy!  Who cares that it wasn’t for a real person in an actual situation?  Who cares that he felt empathy for a toy in a fictional tale?  He saw a situation, assessed it correctly, and identified that Mr. Potato Head was hurting.  And he wasn’t even laughing – his face was all seriousness.

They say things happen in threes, and this turned out to be the case yesterday.  After the excitement of the dual milestones in the morning, there was an incident in the evening that capped off the day in the best possible way.  Both of the boys had spent the afternoon in the backyard, and they were absolutely filthy (word of advice: kids + sand + ice cream = not a good combination). Although tempted to simply hose them down in the backyard, I settled for giving them a bath.  George, as is his custom, grabbed his box of alphabetic fridge magnets and dumped them into the water.  He doesn’t play with them when he’s in the bath, he just likes to have them with him.  It makes bathtime a very interesting and noisy event.

When bathtime was over, I let the water out of the tub, and got the kids towelled off and in their jammies.  Then it was time to dry the alphabetic magnets.  If they are not shaken off and dried, George dumps wet letters on his bed and everything gets soaked.  So I was kneeling by the tub, drying off letters and putting them into the empty plastic fish tank that serves as their receptacle, and I dropped one.  I discovered that when those things are dropped in a bathtub, they bounce about a mile.  I was unceremoniously hit in the face by the letter “Q”.

George was standing by, patiently waiting for his letters.  Usually this incident would have brought forth peals of infectious giggles.  But there was silence for about ten seconds.  Then, George tentatively approached me, and shyly said, “Mommy?” I said, “Yes?”, and he said, “Are you OK?”

Not only was this such a wonderful demonstration of empathy, it was the most natural spontaneous exchange I have ever had with George.  It was an exchange that was appropriate to the situation, one that he initiated himself with no prompting.  It was a genuine moment of connection, one that will be with me for a long time.

A whole new world of hope

19 Apr

On Saturday morning I woke up full of anticipation.  Gerard, George and I were headed to York University to get the results of George’s latest assessment.  It had been a year since the previous assessment, and the results of that had left us feeling bereft and overwhelmed.  We did not need this latest assessment to tell us that George has made progress: we have seen that unfold right in front of us.  Every single new word and every moment of connection, however fleeting, has been a cause for celebration.  However, it is always nice to have these things acknowledged as part of a formal assessment, to receive confirmation that the progress we see is not just the imaginings of hopeful parents.

The psychologist who led the assessment started by talking about adaptive skills – play skills, social communication, daily living skills such as tidying up at the end of the day, going shopping, and knowing to look before crossing the road.  In this area, George has made very little progress over the last year.  He has not actually lost skills, but compared to typical children of his age, he is relatively further behind than he was a year ago.  We discussed possible reasons for this lack of progress: Gerard and I are often so exhausted and worn out by the demands of day-to-day life that sometimes we just take the path of least resistance.  On hard days it is easier to tidy up ourselves instead of going through the whole time-consuming and exhausting process of prompts and reinforcements that would be necessary to get George to do it.  But recognizing that short-term pain so often leads to long-term gain, we have to change our strategy.

As it turned out, that was the only bad-news part of the whole assessment.  We spoke about verbal skills: George’s vocabulary and use of language, whether he can read and spell, how much he understand what is said to him, his ability to follow instructions with and without additional prompting.  A year ago, George had the verbal skills of an eleven-month-old.  Now, he has the verbal skills of a 30-month-old.  He is still well behind where typical six-year-olds are, but the gains over the last year are huge.  He has made nineteen months’ worth of progress in just a year.  So while there is still a sizeable gap, the gap has narrowed.

When we started talking about non-verbal skills, the news got even better.  Non-verbal skills include things like cognitive skills, problem-solving, understanding of what numbers are for, the ability to see patterns and solve puzzles, and all that kind of good stuff.  George has, to put it simply, made a gigantic leap in this area over the last year.  A year ago, he was functioning at about a twenty-month-old level.  And now – I get goosebumps just thinking about it – he is functioning at a 51-month-old level.  That, my friends, is a gain of 31 months – more than two and a half years – over the space of just one year.  Yes, his overall functioning in this area is still about two years below where it should be.  But a year ago, it was about three and a half years behind.  Again, a narrowing of the gap.

Overall, George has moved down on the autism spectrum.  While he is clearly still on the spectrum and has a long way to go, his autism is not as severe as it was.  The therapy that he has been going to has been making an enormous difference, and with continued therapy and intervention, George can move that much closer to where he should be for his age.

I don’t have a crystal ball.  I cannot say for certain what George’s future holds.  Maybe he will never be much of a talker.  Maybe he will never be able to live completely independently.  Or maybe he will – who am I to say something like that cannot ever happen?  But there is no doubt in my mind that he is loaded with potential, and that he will be great at whatever line of work he ultimately chooses as an adult.

Whatever the future holds for George, he is my boy and I am so proud of him that I could just weep.  It is an honour to be Mom to such an amazing little boy.