Tag Archives: communication

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/)

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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.)

Butterfly

5 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 5 – Ekphrasis Post: Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When my son was first diagnosed with autism, we enrolled him in a local daycare centre on the advice of his speech therapist. He needed the social aspect of it, she said. He needed the group lunchtimes, the circle times, and all of the other elements of being part of a group of children. We were nervous about letting our sensitive, vulnerable son out of our immediate orbit, particularly since the daycare had never had a child with autism before.

To their eternal credit and our eternal gratitude, the daycare welcomed George with open arms. The director of the centre arranged for all of her staff to be trained in how to work with special needs kids, and George was very happy there.

During the summer months, the kids would be taken to play outside at the end of the day while they were waiting for their parents to pick them up. I would get off the bus from work, pick up my boy, and walk home with him. One day, I picked up his backpack from the darkened daycare classroom as usual, and went out to the playground. I always tried to arrive undetected so I could watch George at play for a few minutes. In typical autistic fashion, he always did his own thing. He played among the other kids, but not with them.

On this particular day, I got to the playground just in time to see a few of the other kids preparing to have a race from one tree to another. George stood apart from the kids, watching them shyly. When the daycare teacher said, “GO!” the kids scampered away from the start line while George stood by on his own.

My heart constricted with unbearable sadness. The whole thing seemed to underscore the isolation of autism, and I felt a sense of unjustness that my child was standing there on his own. With his lanky frame and long legs, he is a natural runner. He might have won that impromptu little race.

Damn autism, I thought. I knew these other kids well enough to know that prior to lining up for the race, they would have tried to encourage George to participate. But being locked in his own world, he would not have known how to. Outwardly, he seemed perfectly happy, but I couldn’t help wondering about that. What was going through his mind as he watched those other kids at play together? Did he feel any sense of isolation? Did he wish he knew how to join in?

I started thinking about sports teams and group activities. Was George ever going to be able to be part of a soccer team or a high school band? Would he travel in a pack of teenage friends or would he sit by himself in the high school cafeteria? Would he be excluded from birthday parties? Or would some group of well-meaning kids include him in their group and look out for him?

How was my child, with his autism and his social communication deficits, going to survive in a social world?

This is a concern that is with me more or less all the time, despite assurances from his teacher that he is starting to tentatively reach out socially at school, that he is getting better and better at participating in social activities, and that he is, in fact, an extremely well-liked member of the student body.

A few days ago I saw something that made my heart soar. Me and my husband were out for a walk with the kids, and we saw the teenage boys down the road shooting hoops in their driveway. Before we could stop him, George ran up to the boys and held out his hands for the ball. The boys good-naturedly obliged, and like a true natural basketball player, George bounced the ball on his knee and then threw it towards the hoop as if he did this every day.

The hoop was too high for George to have any success, and the boys offered to lower it for him. We told them not to worry and we went on our way, but not before the boys had invited George to play basketball with them any time he wanted.

When things like this happen, my vision of the future shifts, as if I’m looking at my son’s life through a kaleidoscope. I start to see possibilities that were previously hidden to me, possibilities that simply may not have been there before George grew and developed into them. Instead of seeing the kid who stood on his own while everyone else had a race, I now see the boy who, just for a few moments, joined other boys in a basketball game.

If I had, just a year ago, seen the picture that inspired this post, I would have thought, “George is probably never going to do that. He’s probably never going to romp around with friends or be invited to take part in impromptu soccer games.”

Now I look at that picture and realize that I am seeing the emergence of George as a social being. Maybe he’ll always be shy, and it is very likely that he will always need to be surrounded by people who will look out for him.

But his personality, his character, the very essence of who he is – that is emerging bright and beautiful, like a butterfly coming out of a cocoon.

Bullying: Is There A Solution?

29 Feb

In the wake of Monday’s tragic school shooting in Chardon, Ohio, I find myself wondering why we as a society have so much trouble dealing with the problem of bullying. I asked this question on Facebook on Monday night, and more than one person accused me of blaming the victims.

I want to make it clear: I am not blaming the victims, nor am I condoning these acts of violence. I am merely making the point that in spite of the fact that bullying has been blamed for a number of tragedies over the last fifteen years or so, we have made little progress in addressing it.

It would be unfair for me to say that nothing has happened. I would be willing to bet that there were no formal anti-bullying policies in place when I was in high school. That at least has changed: it took me about fifteen seconds on Google to find my local school board’s policy. This does represent a start, even though the wording of the policy is frustratingly vague. It places the onus on schools to figure out ways in which bullying incidents can be reported and dealt with. When I called my son’s school to find out what their school-specific policy is, I got an expected but highly unsatisfactory answer: It depends on the circumstances. I also got the platitudes that schools think are sufficient for parents: We do not tolerate bullying in our school. We take this issue very seriously. Instigators of bullying are dealt with severely.

That’s all great, but what does it actually mean? We don’t need policies that are there primarily to make parents happy enough to sit down and shut up. We need action plans that are followed through on. Here are a few things that I would like to see in place:

  • Education sessions for parents that will teach them to recognize (a) that their child is being bullied, or (b) that their child is bullying.
  • Anti-bullying education in the curriculum for the kids. Right from the get-go, children need to be taught what their rights are and how they can ensure that they are being respected. They should also learn about what behaviours constitute bullying. While this is more intuitive for most older kids, young children may not recognize the potential harm of certain behaviours.
  • Support for the victims of bullying. They should have a way to report their experiences without fear of reprisal, and they should be assured that action will be taken. The onus should not be on them to “stand up to the bullies”.
  • Support for the instigators of bullying. These kids could have something going on in their lives that’s making them do what they do. They shouldn’t just be suspended from school and given a warning not to do it again. Steps should be taken to find out why they are doing it in the first place and what help can be provided to them.
  • Open lines of communication between students, teachers and parents. Teachers and parents should be working together to ensure the safety and wellbeing of our kids, and our kids have to know that there is someone for them to go to when they need help.

Bullying is not a problem that can be solved by letting the kids sort it out. We cannot tell one person to stop doing something, or another person to retaliate. Bullying is a social problem that can only be solved by everyone involved working together in a constructive way, to do what is best for the kids.

The Cow Whisperer

15 Jul

It was a beautiful summer’s day in 2007. George, who was three months shy of his 4th birthday, had recently been diagnosed with autism, and James was 18 months old. Our world, which had been so badly rocked by the reality of having a son with a lifelong disability, was starting to stabilize a little, but at that point, we really didn’t know how much hope we should have.

The diagnosing doctor had emphatically – kindly, but emphatically – told us not to expect too much, ever. He had not given us a good prognosis.

On this particular Saturday, we packed the kids into the car with a picnic, and we went for a drive. We went in the general direction of some lakes to the north of us, but we had no fixed destination. We picked our route at random, taking whatever country roads we liked the look of. The kids were happy enough: we are fortunate to have been blessed with two fantastic car travelers.

All of a sudden, we heard George’s voice piping up from the back seat: “Cow!”

The van shuddered a little as we screeched to a halt. Back then, hearing George say anything at all was a cause for celebration. We turned around and looked at him, sitting there in his booster seat.

“What did you say?” I asked, trying to sound nonchalant.

“Cow!” he said again, his eyes gleaming with excitement.

I turned to Gerard. “I guess George saw a cow,” I told him.

Without hesitation, Gerard did a three-point turn on the narrow country road, and we slowly headed back in the direction from whence we had come.

It took less than a minute for us to see them: a field full of cows, lazily flicking their tails as they chewed on the long grass.

“Cow! Cow!” yelled George. The kid was practically levitating, he was so excited.

We parked on the side of the road and got out of the car so George could see the cows. The kids ran ahead of us to the fence, James tottering slightly on his chubby little toddler legs. We all stood at the fence together, silently watching the cows, who looked back at us with apparent disinterest.

Thinking that this would make a nice picture of Gerard and the two boys, I dug in my bag for my camera. The confounded thing had fallen right to the bottom of my bag, so I had to put in about two minutes of dedicated scrabbling. When I looked up again, I was confronted with the most remarkable sight.

There was Gerard standing slightly in front of the fence holding James’ hand. There was George, a little way further down the fence. And there were the cows – all thirty or so of them – flocked right up close to the fence where George was. They were showing zero interest in the rest of us, but they were utterly enthralled with George. He was fearlessly sticking his hands through the fence, and they were gently nuzzling him and softly mooing at him. In turn, he was smiling tenderly at them, with a look of absolute wonder in his eyes.

It looked like my son had some kind of cult following of cows. Like he was their god or something.

I wasn’t merely witnessing a little boy stroking a bunch of cows. I was witnessing this incredible moment of communication between boy and beast, a moment that was so incredibly powerful and beautiful.

George, like most people with autism, has trouble interacting with the rest of the world. But at that moment, he was in perfect harmony with the world, in a way that I can only dream of.

(Photo credit: http://www.flickr.com/photos/roymontgomery/3993908201)

If He Can Do It, So Can I

15 Jun

Last night, my son George was upset. He was distressed for the entire evening, crying and looking at us sadly with tears escaping from his beautiful big blue eyes. I could tell that this wasn’t just a case of a kid being in a bad mood. Something specific was bugging him. I just didn’t know what it was.

It was heartbreaking. There was this child, my beautiful boy, clearly wanting or needing something, and he was not able to communicate what it was. It was not for lack of trying. He was making supreme efforts to find the words and get them out, but no matter how much I tried, I just couldn’t understand.

In the end, George was just looking at me with an expression that told me he didn’t blame me for not getting it, that although he was sad, he was used to not being able to express himself, used to not being understood.

It was that look, the expression of resignation, that broke my heart. The idea that my child is already, at the age of 7, getting used to a life of hardship, just kills me. I guess this kind of acceptance has to happen sometime, because George’s life is never going to be the same as most other people’s, but still. It’s a difficult pill for a parent to swallow.

Moments like this strengthen my resolve where my running is concerned. On Sunday evening, I ran 14km on the treadmill. That’s a long way to run on a lab-rat machine, but really, I didn’t have any choice. Circumstances were such that it was the treadmill or nothing. And because I have a half-marathon a month from, now, I had to put in the distance.

Just because I deemed it necessary to run for 90 minutes on the treadmill, that doesn’t mean I liked it. It was very hard. The running part was OK. It was the mental resolve part that got me. Treadmill running is mind-numbingly dull, no matter what you do to try and distract yourself, and it took all of my self-discipline to keep going for the full distance.

Many of my long runs – even the ones I do on the open road – are tests more of my mental fortitude than my physical abilities. I know that I can run the distance. I have the base of physical fitness, and I have developed a running form that works for me. The mechanics of my body work just fine. The trouble is that my mind keeps trying to tell me that I’ve been running for a long time, and really, I should be getting tired by now. I have developed techniques to keep myself mentally strong during my runs. Playing music, thinking of things that are not running related, focusing on my body and how it feels as I run. The most effective technique I have, though, is this: all I have to do to keep going is think of the reason I’m doing it.

Every step I take, every aching muscle I endure, every toenail that I lose – it’s all for George. All of this training takes me closer to my Run For Autism, the event I use to raise funds for autism services to benefit my son and other people like him. Running for my child – what better motivation could there possibly be?

People sometimes ask me how I do it, how I go for all of those long runs and then, at the end of it, go out and race for thirteen miles.

For me, it’s easy. All I do is think of my boy. If he can live every day of his life with the challenges he faces, surely I can manage a two-hour run.

If he can do it, so can I. And he is my inspiration.

For details about my Run For Autism and how to support the cause, please visit my race page.

The T-Word: A Scary Word For Autism Parents

13 Apr

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)