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Autism: Seeing The World From A Different Angle

26 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 26 – Health tagline: Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

Seeing The World From A Different Angle

A couple of years ago, George had a block of Occupational Therapy appointments. He needed help with some sensory issues he was having, and he had virtually no fine motor skills. My husband and I were always present at the sessions, mostly to observe and learn techniques we could use at home. We didn’t actually do anything during the sessions. We just let George and the therapist do their thing.

One of the tools in the therapist’s toolbox was a board full of evenly spaced holes that went with a bag full of coloured pegs. George would be asked to fill the pegboard with pegs. He could choose whatever colours he wanted: the point of the exercise was to strengthen his hands. It was not a task George enjoyed, because he struggled with it so much. He didn’t bother to select colours – he would just take pegs out of the bag at random and try mightily to get them into the board.

One day, he deviated from this way of doing things. He emptied the bag and separated the pegs into piles according to what colour they were. And then, for the first time, we saw him systematically select his pegs and make a pattern on the board. My husband was seated beside George, and I was on the opposite side of the table. The therapist was behind George, helping him correct his grip on the pegs when needed.

As George filled the board, the pattern became clear. It was oddly soothing to watch him make his little design, knowing with each turn which peg he would use next. I felt comforted by the predictability my son had created.

All of a sudden my sense of calm was jarred when George picked up a yellow peg and put it where I’d been expecting a blue peg. This wasn’t right! What about the pattern? I looked at my husband, who seemed surprised at this unexpected turn of events. However, he didn’t look quite as horrified as I felt. I’m not sure why I had placed so much stock in this pattern, since that wasn’t an objective of the exercise, but I really felt disturbed.

A few pegs later, the pattern was history, and George appeared to be placing the pegs randomly. My husband got up to stretch his legs, and he walked around to the side of the table. He stopped dead and as he stared at the board, a look of astonishment spread across his face. Not wanting to disrupt George, he whispered in my ear.

“You have to look at this from over there.”

I stood up and went to where he had been standing, and immediately, I saw what had amazed my husband so much.

Changing my perspective of the board by a mere ninety degrees made me see that George had not abandoned his pattern at all. He had simply been shooting for a pattern completely different to the one I had expected. What he was creating was complex and utterly unique. It was one of those things that needed creative thinking and planning. At that moment George reminded me of those chess players who can plan the next twenty moves and know that they are going to skewer their opponent at the end of it.

The pattern was quite, quite beautiful. And it was something that needed George’s own unique brand of thought.

Individuals with autism do not look at the world the same way we do. And that is a good thing.

Because if it weren’t for autistic thought, I would not have gotten to see that beautiful pattern that day.

The tagline I chose is not one that I created myself. I borrowed it from the T-shirt I wore when I ran last year’s autism run. The T-shirt was designed by my friend, whose name is also George, from the Geneva Centre for Autism. I could not think of any tagline that so perfectly encapsulates that day at the O.T.’s office.

(Photo credit: Kirsten Doyle)

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Pinning Down Autism

16 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 16 – Pinboard: Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.

When I was pregnant with my older son George, I had to stop running because my sense of balance went pear-shaped. Over the next several years, I tried to get back into it but there was always something that stopped me. Injuries, time commitments, illness, you name it. One day, an email from the Geneva Centre for Autism got me going again. They were entering a team of runners and walkers in the Charity Challenge of the Scotiabank Toronto Waterfront Marathon/Half-Marathon/5K event. After briefly considering the 5K, I went for broke and registered for the half-marathon. The opportunity to do something for my son and the rest of the autism community turned out to be just the motivation I needed. Although I will be doing my fourth Run for Autism this year, that first finisher’s medal will always take up pride of place on my mantel. Every step I take on my autism runs I dedicate to my amazing son.

Einstein was a pretty awesome dude. As a child he was apparently not the sharpest crayon in the box, but his mom never gave up on him and he turned out OK. He made many discoveries, came up with theories that I cannot begin to understand, and said a lot of profound things. This one is my favourite Einstein quote. It is a perfect encapsulation of the idea that society is enriched by people thinking in different ways. George’s autism comes with all kinds of challenges. There are times when I want to cry with sadness or frustration. Some days are downright overwhelming. I often wonder if George will ever be able to communicate with other people. Despite all of the difficulties, though, George’s autism makes him think in truly unique ways. He can problem-solve rings around the rest of us just because he sees things in such different ways.

Autism is like a kaleidoscope. It can change and evolve over time. The behaviours and challenges exhibited by an individual with autism can be different from one day to the next. There are so many variables – adherence to regular routines, the presence or absence of loud noises, stress levels in the environment, even the weather. Not only does the real impact of autism change all the time, it is experienced in very unique ways by different individuals. I don’t know who it was that said, “If you’ve met one person with autism, you’ve met one person with autism.”

(To visit my Pinterest board, go to http://pinterest.com/running4autism/hawmc/)

Getting It Write

15 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 15 – Writing with style: What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?

The fact that my older son’s childhood development is almost a carbon copy of my own leads me to believe that I am somewhere on the autism spectrum. I had the same speech delays, the same geekiness with numbers, and the same tendency to play by myself in spite of being in a room full of other kids.

To this day, I experience social anxiety, although I have learned how to mask it well enough for other people not to notice. I am not fond of social gatherings where I do not know at least one person very well. During times of stress or conflict I struggle to coherently express my thoughts verbally. Let’s not even get started on the telephone. I am downright terrified of the telephone.

My ineptitude and discomfort with the spoken word is what led me to the written word. Writing is marvelous. It gives me a voice. It provides an outlet for the creativity that I have, to my complete surprise, discovered within me, and it eliminates the problem I have with conversation, where my words frequently get lost between my brain and my mouth.

When I was in high school, I used to get somewhat disillusioned when my creative writing projects were marked down “for lack of structure”. We had it drummed into us that our stories had to have a beginning, a middle, and an end. We were supposed to rigidly plan our essays and then stick to the plan. If the ending did not clearly tie in to the beginning, that was the mark of a Bad Essay.

The problem was that this whole beginning-middle-ending thing didn’t work for me. I understood the theory, but I couldn’t make my mind work in such a linear pattern. As long as the stuff I wrote made an impact, and as long as my readers were engaged throughout, did it really matter? Whenever I tried to write in the prescribed way , the finished product came across as stilted and awkward, and just not me.

When I started this blog just over two years ago, I promised myself that I would remain true to my natural style. I try to make sure my writing flows, and that it’s easy on the eye. I have a goal to leave my audience with some kind of message, whether it’s an idea, a call to action, or an emotion. How I accomplish that depends on my subject matter and what my state of mind is like as I’m writing. Sometimes my posts do follow a traditional structure, and when that happens, it’s just because the topic lent itself to that.

Many times, I will change direction midway through a post. I will allow my train of thought to drive my writing. In that sense, my blog posts are often a true reflection of how I think. They are a glimpse into the part of my soul that’s open for public viewing. I may struggle from time to time to come up with the first sentence, but usually, once I achieve that, I’m off and running. I don’t always go to where I had intended. My destination can be a surprise even to me.

The journey is always a lot of fun too.

(Photo credit: http://www.flickr.com/photos/kharlamovaa/6016780468/. This picture has a creative commons attribution license.)

A Week Of Inspiration: What I’m Taking Away

7 Jan

As 2011 drew to a close, a gave myself a mission to start off 2012 on the right note. To do that, I would approach some women who I found to be inspirational, and I would ask them to post something on my blog that would send a positive message. It started off as a simple resolution for me to start the year in a positive way to get myself out of the funk I have been in. By the time I was scheduling the posts, it had become a project to help everyone: I realized that many people – including a couple of the writers – were in need of a dose of the good stuff that life has to offer.

This would be my small way of trying to make the world a better, happier place filled with possibilities and motivation.

I took something valuable away from all of the posts this week – things that I will take forward with me as I navigate my way through the jungle of life in 2012. For that, I want to give heartfelt thanks to all of my contributors.

I am battling with some personal demons right now, and it’s hard. There are days when I can barely see my way through to getting out of bed. Ultimately, though, I have support. I have my family, I have friends, and I am in good enough health to put on running shoes and pound the hell out of the pavement when I need relief from the stress. On Monday, Kerry White gave us a reminder on perspective. It does me good to remind myself that no matter how difficult things may be, I will muddle my way through it all, aided by the support system that I have around me.

A few minutes ago, my son George – autistic, eight years old, and very long and lanky – clambered into my lap for a hug and a cuddle. As I held this treasure in my arms, I reflected on the fact that special needs parenting is sometimes as hard as hell, but life without this amazing child is just unfathomable. Sara Morgan expressed this on Tuesday, when she said that yeah, we have kids with autism, but at least we have them.

How easy is it for us to just lie down and quit when we’re faced with a personal tragedy? On Wednesday, Phaedra Kennedy took us through her heartbreaking unsuccessful quest to have a baby, and her subsequent resolve to make 2011 the best year of her life. Not only does Phaedra’s tale inspire me to set goals for this year and really work towards them, I am honoured to have her mentoring me through my next stage of evolution as a runner.

Perhaps there is truth to the idea that the fluttering of a butterfly’s wings can ultimately cause a storm on the other side of the world. In the same way, a handful of women blogging about motherhood can result in impoverished children receiving life-saving vaccinations, and fewer babies dying of pneumonia. On Thursday, Jennifer Burden told us about an idea that started small and morphed into something huge. Over the next year, I will endeavour to follow my dreams, no matter how silly they may seem. Who knows where they will take me?

There have been times in the past, when things have been rough, that I have succumbed to the temptation to just let myself go. I have asked myself what the point of it all is. If Margie Bryant had given in to that kind of negative self-talk, where would she be today? She survived addiction, a string of meaningless, emotionally empty relationships, and time in a federal prison. She kicked low self-esteem in the butt, and has turned her life around. She leads a life anyone could be proud of, and she’s found true love to boot. If she could make that kind of U-turn, surely I have it in me to control the direction of my own life.

My personal mission this year is to focus on taking care of myself. I am going to find some balance in my life and do more things that I want to do.

Will this take away the time and energy that I have always unquestioningly devoted to my husband and children? Or will doings things for myself inject me with more energy, and lead to a more enriched, satisfying life for all of us?

(Thank you again to Kerry, Sara, Phaedra, Jennifer and Margie. I am sure your tales of inspiration have touched the lives of many people reading this blog.)

 

 

Stupid Or Just Different?

23 Sep

While I was having lunch with some work friends today, we started talking about an incident several years ago in which a kid was mauled by a wolf at a zoo.

What happened was that the child, who was maybe ten, climbed into the wolf enclosure. The leader of the pack, understandably upset about the invasion to his territory, attacked the child. The child suffered serious injuries, and the family had to fork out thousands of dollars for expensive medical procedures.

The family was desperate to recoup some of their expenses, so they filed a lawsuit against the zoo. They claimed that the zoo was responsible for the injuries suffered by the child. None of us could remember the outcome of the case.

As we discussed this story today, several opinions emerged around the table. The person who raised the topic believes that it was ridiculous for the parents to sue the zoo. After all, if your child climbs into an enclosure occupied by wild animals, what do you think is going to happen?

I pointed out that if it was so easy for the child to get into the enclosure, maybe the zoo was responsible. There clearly were not enough safeguards in place to prevent the incident. I mean, zoos are full of kids, and kids are not exactly predictable in their actions.

The guy seated to my left had an opinion of his own: the zoo would have been entitled to sue the family because the child was so stupid.

This remark offended me more than a little, and I think my lunch companions were a bit taken aback with the intensity of my reaction.

Here’s the thing. My older son George – the one who has autism – is streets away from being like a typical kid. He does not respond to things the way other kids do. He has his own special blend of needs, wants, perceptions and anxieties. He has a view of the world that the rest of us do not necessarily understand. And because of the way he is, because of his autism, he sometimes behaves in a way that would be widely regarded as counterintuitive. He will do things that do not make sense. Only they do make sense. Just because his actions do not always make sense to anyone else, we have to respect the fact that they make sense to him.

I have fairly very through-the-roof strong feelings about the idea of anyone daring to refer to my child as “stupid” just because he doesn’t do things the way other kids would do them.

I am not necessarily saying that George would climb into a den of wolves, but I can understand how a kid with autism could look at the wolves and see dogs. I can get how that kid’s mind could tell him that these “dogs” are no different from the friendly dog at his grandma’s house. And I am totally see how a child with autism may not have the sense of danger that other people do. He may not read the cues of bared fangs and growls.

All I am saying is that it is wrong to assume that a child is stupid just because he does something that most people wouldn’t do. You never know what is going on with the child or his family. There could be a lot more to it than meets the eye.

What are your thoughts on this? Is it ever OK to label a child as “stupid” on the basis of actions that are undeniably unwise? Is my outrage at my co-worker’s remark justified?

(Photo credit: http://www.flickr.com/photos/ell-r-brown/4691235153. This picture has a creative commons attribution license.)