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On Running

With Running Room founder John Stanton, right after one of my autism runs

With Running Room founder John Stanton, right after one of my autism runs

My friend Phaedra posted some running reflections on her blog today. She ended her post with the question: “What has running brought to your life?”

I started to draft a reply on her blog, but it started to get kind of wordy, so I decided to just make a blog post of my own on the topic.

The first time I start running seriously, I was a 26-year-old couch potato with a 30-a-day smoking habit. I didn’t really care for the idea of exercise very much, but I wanted to quit smoking, and instinct told me that in order to accomplish that, I would have to fix other aspects of my lifestyle.

So I cut back on the caffeine, traded junk food for healthy home-cooked meals, and started to run shuffle along at a snail’s pace. A few months later, I smoked my last cigarette and my shuffling started to look like actual running. To my surprise, I discovered that I actually liked it. My dad, a former elite athlete who had long suspected that there was a runner lurking somewhere within me, merely said, “Told you so.”

During that time in my life, running was much more than just a means to quit smoking. I badly needed some self-affirmation back then. I had no self-esteem to speak of. I felt completely worthless, and when I started running, I realized that I had found something I could actually do. I didn’t claim to be particularly good at it, but I wasn’t looking for something to be good at. I was merely looking for something that I could do without failing.

The combination of stopping smoking and starting running allowed me to start feeling as if there was some validity to my existence.

The second time I started to run, I was a 39-year-old mother of two and I hadn’t touched a pair of running shoes in over six years. Some aspects of my life were very similar to the way they had been the first time round. Although I was no longer a smoker, my lifestyle had become sedentary, and once again, I was grappling with severe depression.

This time round, it was the idea of running for a cause that gave me the kick in the pants that I needed. The Geneva Centre for Autism had decided to enter a team in the charity challenge of a major Toronto running event, and they were looking for parents to participate. And somewhere deep inside me, underneath all of the layers of depression that were crippling me, a flame was lit. I registered for the half-marathon there and then, without giving myself time to think about it.

Six months later, I stood at the half-marathon finish line with a finisher’s medal around my neck. I had gone the distance, all 21.1km of it, and every inch of it had been for my son. It was an intensely emotional experience and the tears flowed unchecked.

Since then, I have run six more half-marathons and a number of races of other distances. One half-marathon each year is dedicated to my son and other children with autism, as I fund-raise and strive to make my small contribution to the autism community.

Once again, running has been a salvation for me, a form of self-affirmation, and a way for me to feel truly alive. When my running is going well, I feel as if I have it in me to get through any challenge and achieve any goal I want.

And when it’s going badly, all I have to do is think of my son. If he can live his entire life, 24 hours a day, 7 days a week, with the challenges of autism, then I can run for a couple of hours to make the world a better place for him.

 

 

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Job Loss: Crisis Or Gift?

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Eight days.

It’s been eight days since I joined the ranks of the not-working, and a surprising amount of things have happened since then, like a weekend away, a half-marathon, and a plethora of admin relating to my new economic status.

Today, I made a concrete step towards my new future – whatever that might be – by meeting with the career coach arranged for me by my former employers. It was one of most exhausting meetings I have ever been in, because of the abundance of information I received, and possibly also because this whole process is so emotionally draining.

My first impression, having had this meeting, is that being unemployed is going to be very hard work. I have forms to fill in, assessments to complete, workshops to attend. The month will be an intense period of time as I prepare myself for the job market.

Maybe, in some weird way, this whole experience is a gift. I have a unique opportunity to change the direction of my career with the help of a professional. Although I will be busy, I will have more time to focus on my school work and my writing.

Best of all – the most precious gift of all – is that I have more time for my kids. I am loving the fact that I can be the one to get them ready for school in the mornings, that I can dedicate myself to helping them with homework in the evenings, and that, frankly, I can be a nicer person because I have the time to get more sleep than I was before.

Job loss sucks. It really does. It leads to feelings of inadequacy and insecurity, and it turns the future into a giant landscape of fuzzy uncertainty.

But it has its benefits, and I am trying to make the most of them.

(Photo credit: Sean MacEntee. This picture has a creative commons attribution license.)

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7 Hotel-Stay Survival Tips For Autism Families

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There used to be a time when the idea of a “relaxing weekend away” would give me the horrors. I tended to be vehemently opposed to going anywhere, because for me, these trips were anything but relaxing. Humans in general are creatures of habit. Humans with autism are gods of habit. I used to dread taking my son George out of his regular habitat. There were always so many logistics to worry about, like safety, making sure I brought enough stuff to maintain a semblance of familiarity, and dealing with the inevitable disruptions to routine. I was more exhausted after the “relaxing weekend away” than I had been to begin with.

Now I am immensely grateful for those stressful weekends and vacations of days gone by. I have, through the process of living and learning, reached a point where weekends away with the family can be truly enjoyable for everyone, even for the child with autism. Even for me.

Here are a few pearls of wisdom that I have picked up over the years:

1. Book your hotel as far ahead of time as you can, just so you will know where you are staying. Then print off pictures of the hotel and make a social story for your child. Most hotels have an abundance of pictures online, and many will gladly email you pictures if you tell then what you need them for.

2. Pack things that are familiar to your child. Toys and books that your child likes are essential, but consider other items as well. Maybe he likes to go to sleep with the same pillow every night, or perhaps he has a cup or a plate that he is attached to. If your child has DVD’s that he likes to watch, bring them along, but also bring a device that you can play them on.

3. When you get to the hotel, tell the manager about your child’s disability. If the hotel staff are aware, most of them will go out of their way to take extra special care of your family during your stay. During our recent stay in Niagara Falls, the hotel manager arranged to have a special lock installed high up on the door to ensure that our son would not wander out into the hallways.

4. Many kids with autism are computer geeks. Find out about Internet access in your hotel room. A surprising number of hotels charge extra per device per day, and the charges can rack up really quickly. If you ask, you might be able to get complimentary Internet access, and your child will be able to access the online videos and games that he is used to.

5. Allow your child to explore the hotel room. Yes, it can be annoying to have a kid walking around turning the lights on and off, fiddling with the curtains and running water into the bathtub. But your child is in a new environment, and he needs the exploration to create some familiarity.

6. Realistically, you will be doing many things differently to the way you do them at home, but maintain whatever semblance of routine that is possible. If you do at least some of the same things at the same times, your child will feel more secure.

7. Accept that some things may not go as planned. Even in familiar settings, life with a child with autism can be unpredictable. There could well be difficult moments during your vacation, no matter how much you prepare yourself and your child. Instead of planning out a detailed itinerary for your trip, try a day-to-day approach to give yourself the flexibility to change direction if you need to.

Do you have any tips for staying in hotels with special needs children? Please add them in the comments!

(Photo credit: LVLights. This picture has a creative commons attribution license.)

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Race Report: Niagara Falls Women’s Half-Marathon

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When I am planning my race calendar each year, I tend to stay close to home. This year, I decided to break from tradition and register for not one, but two out-of-town races.

I tend to be quite laid-back when it comes to packing for a weekend away. My attitude is that if I forget something, I can just buy it when I get there. Factoring a race into my packing was a new experience for me. I had to make a list, check it twice, and obsessively check my bag of running stuff a gazillion times before we hit the road.

I headed down to Niagara Falls with my family on Saturday morning, and we drove straight to the race kit pickup area. I was given my bib and a canvas bag, and then I had to move down a row of tables while volunteers put things into the bag. I got the usual tech T-shirt (which is a little ill-fitting, but I like it and will wear it because it bears the word “Empowered”) and the usual running magazines and flyers for races and foot doctors. I also got makeup, a variety of toiletries, a miniature first-aid kit, and best of all, a bottle of wine.

This was the best race swag I had ever received.

On Sunday morning, I was a little pressed for time getting to the start line. The hotel we stayed in was fantastic, but they managed to screw up the breakfast vouchers. After a small amount of stress, I was able to grab my peanut butter toast and coffee, and I got to the start line with about forty minutes to spare.

All forty minutes were spent in the porta-potty lineup. This surprised me, since the race website had made a big deal of promising an abundance of porta-potties. In reality, this was the slowest-moving porta-potty lineup I’d ever been in, which I guess makes sense because this was a women’s race and everyone knows that women take longer. When I was done, I ran to the start line and then just kept running because the start siren went off.

It was an overcast day and just a little bit cool, but I could tell that it was going to get warm and humid. I was glad that I had decided on shorts and a short-sleeved shirt with no jacket. Before the end of the first kilometre, I was warming up, and about two kilometres later, the sun was starting to peek through the clouds. The race took us past the Falls not just once but twice, and the mist given off by the thunderous fall of water provided a very refreshing cool-down.

For most of the race I ran at a consistent pace of around 6:30 minutes per kilometre. I felt good: I was reasonably confident that I would hit my target of 2:20:00. Somewhere around the halfway mark, I was feeling so good that I increased my pace quite substantially. I paid for it when I hit 15km or so. My legs suddenly turned to Jello and I started to struggle. I wouldn’t say I crashed and burned, but I definitely slowed down for the next 4km.

With 2km to go, I picked up the pace again, knowing that I only had about 13 minutes of running left. At the final aid station, volunteers were handing out mini-donuts and candies. I grabbed a little cup of jellybeans and munched them down. Not my usual race fare, but at that point I knew that I could really do with a sugar-rush.

Shortly before the 20km mark I slowed to a walk just for long enough to drink the last couple of mouthfuls of my Gatorade. I started to run again, and after what felt like an eternity but was only about six minutes, I crossed the finish line. I was absolutely spent but still had the energy to raise my arms in a victory salute.

My time was 2:17:52 – just 20 seconds off my personal best. It was a performance that gives me great hope for new personal records this season. I even had an extra little sparkle at the end of the race: for the first time ever, I heard my name announced over the loudspeaker as I crossed the finish line.

As always, I am immensely grateful to the race organizers and volunteers for putting this event together. Apart from the shortage of porta-potties, the race was very well organized. The aid stations were well-run and the route was fantastic. I am also grateful to the people who took time out of their day to stand on the sidelines and offer much-needed encouragement to the runners.

(Photo credit: Kirsten Doyle)

 

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Ready To Race

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Later on today, I will be lining up at the start line of the Niagara Falls Women’s Half-Marathon. Although my season started off with my ankle getting injured and my mojo getting lost, I managed to get back on track about seven weeks ago. Technically, I need a bit longer than that to train for a half-marathon, but I have made these last seven weeks count. My training during this time has been consistent, I have supplemented my runs with cross-training and strength-training, and I have drastically cleaned up my eating habits.

So I feel ready.

I even have a goal. Although a personal best time would be nice, I am not going to set my heart on it. I have changed some aspects of how I train and run, and I am using this race as a test. So instead of banking on a personal best time, I am aiming for 2:20:00. If I can beat that, I will be ecstatic.

Watch this space for a race report. But not before I’ve soaked my sure-to-be-aching legs in my hotel room jacuzzi while drinking my free bottle of wine.

 

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An Eventful Week

 

Times are tough but the future looks bright

Living it up at the CN Tower

This month I am participating in the 2013 Wordcount Blogathon. The idea is to post something every day for the next month. A week ago, I would have said that this was going to be a huge problem, what with everything I have on my plate. But things change, and time is not going to be as much of an issue as I thought it was.

The last week has been quite an eventful one in my family. On Monday, the Light of DAE Studios, founded by my husband to help keep kids out of gangs, received the Local Business Award from the mayor. This was absolutely huge, and I was so proud to see my husband going up to receive his award.

On a side note, the boys behaved perfectly. Even George, for whom events like this can be more than a little difficult.

The following day, I had a hellish commute to work, and as soon as I got there I was called into a little office and informed that I was being laid off.

Well, that was quite a phenomenal kick in the teeth. The good news, though, is that a good kick in the teeth leads to the need for dental work, and sometimes you end up looking better than you did before. The dental work itself is not pleasant, but the end result can make it well worthwhile.

After a few days of job-loss-related mood swings, I got to go out and have a good time yesterday. A friend came to town for a conference – a friend who, until now, I have only known online – and we met up. We went up the CN Tower to see its famous birds-eye view of Toronto, then we had dinner, wine and a great chat. I was able to forget all about my stress and enjoy spending time with a friend.

Tomorrow, I will be toeing the start line for my first half-marathon of the season: the Niagara Falls Women’s Half-Marathon. I am excited. I have trained hard, and although my nutrition plan has kind of fallen by the wayside this week, I have been eating a lot more healthily. I feel ready for a great race.

And next week, while I am hobbling around on aching legs, I will be ready to tackle the rest of my life.

 

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An Unexpected Treasure

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While I’m waiting impatiently for my coffee machine to work its magic, my son suddenly appears by my side.

“Little pig, little pig, let me in!” he says.

I know the drill. I’ve done this enough times. “Not by the hair of my chinny chin chin!” I reply.

“Then I’ll HUFF! And I’ll PUFF! And I’ll BLOW your house in!”

He draws in an enormous lungful of air and then blows mightily in my direction, while I pretend to fall backwards from the force of wind.

Like many kids with autism, my son George has never really been one for stories, but from time to time a story comes along that really captivates him. The Brown Bear, Brown Bear books fell into this category when he was younger, and he still occasionally returns to them. The current flavour of the month, though, is The Three Little Pigs. George takes great pleasure in watching YouTube videos of the story, and quite significantly for a child with autism, he likes to role play some of the scenes.

By coincidence, The Three Little Pigs was the central activity of a training course I attended last week. The course was about Agile project management, and the theory was covered on the first day. Day Two was given over to a practical application of the theory. We were divided into teams and given the task of using Agile project management practices to make a comic book depicting the story of The Three Little Pigs.

The process was fun and interesting, and definitely helped highlight the ideas behind Agile project management.

The end result was pretty much what you’d expect from a group of five IT types, none of whom can draw to save their lives. Let’s just say that none of us will be leaving our day jobs anytime soon.

Since I had played the role of “product owner” during the exercise, and since my team-mates know that I am the mother of young children, I was allowed to keep the comic book we made at the end of the training. When I got home, I put the book on my desk, and George immediately pounced on it.

“The Three Little Pigs!” he said excitedly. And he started paging through the book, reading all of the words out loud in his sweet lyrical voice. When he got to the end, he took the book to his computer, clicked onto a Three Little Pigs YouTube video, and read the book while the video was running. During dinnertime, the book was beside George’s plate on the table. At bedtime, it was taken to his bed and stashed under his pillow.

While George was sleeping, I managed to sneak the book out from under his pillow so that I could reinforce the makeshift binding that was beginning to come apart from overuse. I put the book back where I had found it, and it was there for George in the morning.

George doesn’t care that the pages aren’t all quite the same size, that the pigs look more like cats and that the wolf looks more like a horse. All he sees when he looks at the book is a treasure to be enjoyed over and over again.

The training course did a great deal for me and my professional growth.

It has done a lot more for the happiness of one child.

(Photo credit: fdecomite. This picture has a creative commons attribution license.)

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George And The Silent-E Machine

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It’s been more than a few days since I last posted here. I could give you all kinds of reasons for this, like lack of sleep, lack of energy and lack of time. Ultimately, the reason for my mini-hiatus can be traced back to one thing: the silent-E machine. Known to most people as the dishwasher.

My son George is the one who started referring to our dishwasher as the silent-E machine. He is a big fan of the Leapfrog movies. If you have young kids and you don’t know about Leapfrog, Google it. The movies are fun and educational, and entirely appropriate for youngsters learning how to read or count. Anyway, one of the movies features the Leapfrog characters in the Letter Factory learning about how silent E’s can change the way a word sounds. The silent E’s are manufactured by a machine called – you guessed it – a silent-E machine.

After George watched this movie several dozen times, he decided that he wanted a silent-E machine of his own. He grabbed one of his fridge magnet E’s and placed it on the dishwasher, and hey presto! We had a silent-E machine.

George is very particular about routine, and part of the essential routine is that the silent-E machine be turned on right around bedtime. Usually, he will quite happily go to bed and drift off to sleep with the silent-E machine running in the background. And this is fine. If he wanders out of bed from time to time to check on the progress of the cycle, I’m OK with that. He likes to make sure that all is well in the world as he knows it.

About a week ago, the silent-E machine started to act up. I started running it only at times when I could keep a constant watch on it. Which meant running it outside of George’s regular schedule. Most autism parents will bear witness to the fact that this is a recipe for disaster. The entire household applecart was severely disrupted, and all of us started getting a lot less sleep.

Then, on Mother’s Day, we reached a point of not being able to use the silent-E machine at all. We had to start lugging dishes up and down the stairs so we could borrow my mother-in-law’s dishwasher, and this meant that her dishwasher was being run at the wrong times.

Oy.

It got ugly. Now George was staying awake more or less through the night, crying about his beloved silent-E machine, and running up and down the stairs at odd times of the night to inspect my mother-in-law’s dishwasher.

I am hoping that it will all be fixed tomorrow. The problem seems to be nothing more serious than a clogged pipe, and I have acquired some chemicals to pour down it.

Wish me luck, friends. It’s been a rough ride.

What happens when normal routines are disrupted in your house? Is there chaos or does everyone go with the flow?

(Photo credit: kevin dooley. This picture has a creative commons attribution license.)

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More Than Just A Toy

It is snowing outside, but it is almost too warm in the speech therapist’s office. None of us really wants to be there. Not me, not George, not even, I suspect, the speech therapist. George – three years old and non-verbal yet defiant – has refused to remove his coat even though he must be getting toasted under all of those layers.

He sits down unwillingly, and I position myself between him and the door to prevent any escape attempts. I settle in to watch what will undoubtedly be yet another fruitless session. We’ve been coming here for almost a month now, and George has not responded to a single thing. His speech is no further along than it was to begin with, and although I like the therapist very much, a part of me is wondering what the point of all of this is.

As usual, George is making niggling whiny noises, not-quite-crying noises, little sniffles and moans that make it abundantly clear that he does not want to be here. He doesn’t care for any of the toys that the therapist is producing out of nowhere, like a magician. He doesn’t care for toys, period, but the therapist patiently insists that it’s just a question of trying until we find the one thing that will work.

As George starts to noisily rock his chair back and forth, I sigh inwardly, but following the therapist’s early instructions, I do not say anything. I am tired. I am sad. I am frustrated. I suddenly find myself having to blink back tears that threaten to spill down my cheeks.

And then… a miracle.

The speech therapist puts Mr. Potato Head down in front of George.

It is love at first sight. Instantly, the rocking stops and the whiny noises are replaced with a stunned silence. I can literally see my child’s eyes filling with wonder. It’s like witnessing a rain shower on a parched desert.

Instinctively, I hold my breath and stay completely still. I just know that something special is happening, and I don’t want to ruin the moment.

George reaches out shyly and touches Mr. Potato Head. Then his entire face – his entire soul – erupts in the biggest, most beautiful smile I’ve ever seen.

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From that moment, George started making progress at his speech therapy sessions. Thanks to Mr. Potato Head, his vocabulary started to explode. Not only that – he finally had a toy he was interested in playing with. Not staring at, not lining up according to colour, but actually playing with. When friends and family members asked what they should get him for birthdays, we had something we could tell them.

Six years have passed since that day in the speech therapist’s office, but George’s devotion to Mr. Potato Head has never wavered. He collection takes up two large Rubbermaid tubs – and those are just the Potato Heads that are not adorning his desk, his bed, and other flat surfaces at various points throughout the house. He has Mr. Potato Heads, Mrs. Potato Heads, Baby Potato Heads, Darth Tater, Indiana Jones Taters of the Lost Ark. There’s a hockey player Potato Head, a pirate Potato Head, a doctor, a fireman and a sheriff. George has an entire Potato Head community that keeps on growing.

Earlier this week, Mr. Potato Head celebrated his 61st birthday. This is one of the most iconic toys of the 20th Century, right up there with Barbie and Lego.

But to George – and to his grateful mama – Mr. Potato Head will always be more than just a toy.

(Photo credit: Kirsten Doyle)

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Guest Post: You Never Know What Their Quirks Will Become

Today’s post started life as an email that my friend Jacquie sent to the autism parenting group that we both belong to.

Jacquie is the mom of two boys, aged 8 and 16, who both have special needs.

Her older son, Eric, has autism. He has his challenges, but as you will see in this post, he is finding his way in the world. I will not say any more – I will let you read for yourself.

8-year-old Justin has RAD (reactive attachment disorder), autism and intellectual delay. He is one of those unreasonably good-looking kids who you just know will be making girls swoon as soon as he (and the girls) hit puberty.

And Jacquie? Well, she’s just a fabulous friend and a fantastic mom. I am immensely grateful to her for allowing me to share this story of Eric. To special needs parents like myself, this is really a story of hope.

Without further ado… over to Jacquie.

Eric

Eric

 

When Eric was a baby, the only way you could soothe him was singing.

When Eric was a toddler, he used to stand in the windowsill of his bedroom’s gigantic window and listen to a cassette of kid’s songs sung by kids over and over.  When the tape ended, he would scream until someone came and turned it over and pressed ‘play’ again.  Then he’d scream until we got the hell out of the room.

When Eric was a preschooler, he’d sit in front of Windows Media Player and watch the visualizations you could choose to go along with the music that was playing.  He’s spend hours just watching these graphics move and change with the music.  God forbid you try to distract him.

When Eric was in kindergarten, he developed a musical crush on Shania Twain.  I still shudder to think of that year.

When Eric was in grade school, he started to make music using free music programs like garage band.  It was awful.  I didn’t have the heart to tell him he sucked.

When Eric got to high school, he asked for a professional-grade music-editing software suite, so we gave him that for Christmas. Subsequently we began seeing him only for meals and The Big Bang Theory.

When Eric had a little experience with production, he asked for a Mac, which has superior music production capabilities.  He was taking guitar lessons, piano lessons, and music classes at school, so we thought it was probably worth it.  Subsequently we began seeing him only for meals.  There are days’ worth of The Big Bang Theory episodes on the PVR that have never been watched.

When Eric was a week younger than he is right now, a Danish music promoter contacted him and, based on the free content Eric has put out on music sites and on the the contests he has won with his compositions, offered him a 6 month contract.

When Eric was 12 hours younger than he is right now, we signed.  Eric is now represented by a dance music label in Denmark.

His songs will go up for sale on iTunes, Spotify, Juno, and Amazon.  This company will help him design his logo, refine his sound, and establish a presence in the market.

When Eric was a little boy, we mourned the way music took him away from the world.  Now he’s bringing his music to the world.

(Photo used with permission of Jacquie VonHunnius).