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Autism Awareness Without Aggravation

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Today is World Autism Awareness Day. All over the world, people, governments and companies are participating in the “Light It Up Blue” campaign, which involves burning blue light bulbs in solidarity with individuals and families affected by autism. What this means is that my social media feeds are being bombarded with posts and messages from autism parents explaining why World Autism Awareness Day should not be observed.

I am always baffled by how controversial autism awareness campaigns are. We don’t see this level of animosity and division with other causes. I have never seen or heard a cancer survivor say that they don’t want cancer awareness to be promoted. Epilepsy, mental illness and many other illnesses and disabilities have their awareness days, and those days are embraced by those suffering from the afflictions and the families who support them.

I mean, since when is autism awareness a bad thing? Yes, I know that awareness without acceptance and action means nothing. But acceptance and action cannot happen if the awareness does not come first. Awareness is not this empty concept that many people claim it is.

noun: awareness; plural noun: awarenesses
1. knowledge or perception of a situation or fact.
2. concern about and well-informed interest in a particular situation or development.

Awareness is when someone cares about a certain issue and wants to learn more about it. As far as I’m concerned, the more people who care about autism and want to learn more about it, the better. With awareness comes a greater level of acceptance and education, as a result of which my son and other kids like him have a happier life with more opportunities.

Am I supposed to blow that off just because the Light It Up Blue campaign supports Autism Speaks? Am I supposed to hate Autism Speaks because they don’t direct funds to the families of people who are affected by autism?

Well, for a start, Autism Speaks is an organization that exists for the purposes of supporting research, and they have never claimed otherwise. They have never pretended to be a charity that gives money to families.

More importantly, though, the Light It Up Blue campaign does a lot more than fill the bank accounts of the charity that some in the autism community love to hate. Because of the campaign, TV stations and newspapers run special features about autism. Some stores offer discounts on educational toys and books. Schools have dialogues about autism. They encourage students to ask questions, to have discussions, to learn ways to talk to and be with the kids in their schools who live on the spectrum.

All of this, to me, is a good thing.

I am not out to convince people to buy blue light bulbs, or to support Autism Speaks or anyone else. We all have our own views and we’re all entitled to them. All I really want is for World Autism Awareness Day to be just that: a day for individuals, organizations, governments and the media to actively promote awareness of autism.

It should not be a day for people within the autism community to fight with anyone who doesn’t share their views. It should not be a day for controversy and divisiveness. It should be a day for the autism community as a whole to band together in support of what we all really want: a better world for people with autism.

This is an original post by Kirsten Doyle. Photo credit: https://www.flickr.com/photos/coolgirlsar/. This picture has a creative commons attribution license.

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My Baby Forever

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Sometimes, I look at my older son George and lament the fact that he is growing up so quickly. He is ten now, and he has grown too big to sit on my lap. He is the same height as my mother-in-law and he has outgrown four pairs of shoes in the last year. The most scary thing of all is that he has started to show signs of early puberty. Before I know it, I will be dealing with the mysterious combination of autism and adolescence. He is going to keep getting taller and stronger, his voice will deepen, and he will get old enough to shave.

But then I have mornings like today. I always wake up earlier than anyone else, curl up on the couch with coffee and my phone, and have some quiet time to myself. I check my emails, see what’s happening on Facebook, maybe play games for a while. It’s my way of gently easing myself into the day before the the rest of the world wakes up.

This morning I was playing a few Words With Friends moves when George came padding into the room. He flopped down on the couch beside me and draped his lanky arms around my neck for hug as he rested his head on my shoulder. We sat like that for a few minutes, just the two of us in our own little universe, and then he lay down on one end of the couch, appropriating the blanket that I had been using.

I looked over at my boy, at his hair that was all mussed-up and his face that was puffy from sleep, and he gave me a gentle smile. In that moment, he looked young and vulnerable.

And I realised that no matter how old and big he gets,  he will always be my baby.

This is an original post by Kirsten Doyle. Photo credit to the author.

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Merry Christmas And Happy Birthday

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Once upon a time, on Christmas Day, a child was born.

No, this is not a story about Jesus. Apparently, historians haven’t been able to determine exactly when Jesus was born. We just celebrate his birth on Christmas Day because it was a popular day for pagan celebrations.

The baby in my story, who was actually born on Christmas Day, is none other than my younger son James. After keeping me waiting for more than a week past his due date, he came flying out like a cannonball eight Christmases ago, and he hasn’t stopped since. Maybe he can’t walk on water or turn water into wine, but he has definitely added a special kind of energy and excitement to my life.

He has also made birthday celebrations a little challenging, simply because of the day on which he chose to make his very loud arrival. On the one hand, we feel that we need to separate his birthday from Christmas, so that his birthday can get the attention it deserves. On the other hand, we want to celebrate his birthday on the actual day of his birthday.

Over the years, we’ve gotten better and better at this birthday-on-Christmas thing. We divide Christmas Day in half and do Christmas stuff in the morning. Then we have lunch, and from that point the rest of the day is devoted to James’s birthday. We give him birthday presents and have cake, just the four of us.

The full-on birthday parties that include James’s friends have, until now, happened in early December. This year, I decided to change the formula and have the party in January, after the actual birthday. And that is how, three days ago, I had a house full of energetic boys.

The party was a resounding success. For most things, I took the easy way out: pizza and chips for lunch, and disposable dishes so I wouldn’t have to spend all night washing up. I invited the kids’ respite worker – a 17-year-old boy who the kids absolutely adore – to come and run the activities. I got a pinata and some prizes, and goodie bags for all of the guests.

As I do every year, I worked very hard on the cake. For both of the boys, I do theme cakes based on whatever they are into. George has had Bob the Builder, Mr. Potato Head and Spongebob Squarepants. James has had Thomas the Train, Lightning McQueen and Ben Ten. This time round, it was a Beyblade cake. I was up until midnight the night before the party, mixing icing of different colours and meticulously drawing out the design on the cake. I looked like a mad scientist, with my hair all wild and bowls of red and blue and grey icing surrounding me.

The end result was pretty much what you would expect from someone who knows squat about decorating cakes, but I was pleased with it. More important, James’s face lit up in delight when he saw it, and his friends were saying Oooooooooh! and Cool! The cake was clearly and instantly recognisable as a Beyblade cake, and that was really all that mattered to me.

That and the fact that the kids had an amazing time. We had just the right number of kids, and the activities flowed at just the right pace. Even George, whose autism frequently makes him retreat from things like this, was happy to be among all of the kids, even if he didn’t actively participate in a lot of the proceedings.

The birthday boy was happy, and he felt that he got the birthday he deserved.

This is an original post by Kirsten Doyle. Photo credit to the author.

 

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2013: Memorable Moments

With just a few days left in 2013, this seems like a good time for me to take a look at some highlights of the last twelve months. The word “highlights” is a bit of a misnomer, though – a large portion of the year was filled with the most mind-bending stress. To be completely honest, I am ready for the year to be done. I am ready to wake up on January 1, 2014 looking forward to a year of new beginnings.

Not a lot happened in the first three months of the year. I was working overtime on a massive project, so for a while I didn’t really have a life. From time to time I went running, and that was going great until the day I gave myself an injury by doing a long run at race pace on icy sidewalks. As far as common sense goes, that was not one of my shining moments. I had to pull out of a half-marathon that I had registered for – not the greatest start to my season.

In April I ran a ten-mile race that can only be described as my worst race ever. It took place on a golf course, which was very scenic but had a scary number of hills. If the weather had been nice it might not have been so bad, but it was cold and windy, and it was raining. Instead of feeling down about my dismal finishing time, though, I was surprisingly upbeat. I had run this brutally hard race in terrible weather, and I had crossed the finish line. It was a testament to my determination. The hard-earned finisher’s medal I got that day is one of my favourites, just because of how hard I had to work to earn it.

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In May, my life kind of spiralled out of control a little. Things were going reasonably well at the time: my running was back on track and my big project was a whisker away from being closed after a successful implementation. A few days from the end of that month, I got the shock of my life when I was called into a little office in the HR department and informed that I no longer had a job. I had seen it coming – much change was afoot at my place of work and they had been downsizing people for a while.

Something else happened in May that shook my foundations quite badly. One of my best friends, who I had known for seventeen years, passed away after a lifelong battle with Cystic Fibrosis. Fran was just shy of her 41st birthday when she died, and years of knowing that I would in all likelihood lose her did not make it easier when it happened. I have so memories that include Fran, including her first race and my wedding. Seven months on, I’m still having trouble adapting to a world that she no longer inhabits.

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In June, my family and I went away to Niagara Falls for a few days. It was a break I desperately needed, and it included the Niagara Falls Women’s Half-Marathon. I had a fantastic race – although it was not my best-ever performance, my finishing time was respectable enough. The race was a perfect opportunity for me to run off a bit of stress.

July kind of passed without me noticing. I was worn out from stress and grief, and I was fighting what felt like a losing battle with depression. I applied for jobs without getting any responses, and my spirits sank lower and lower with each passing day. Ultimately, what got me through was running.

August started off on a note of terrible tragedy, when a friend’s seven-year-old son drowned in a river. He hung on in hospital for a couple of days, but in the end, his mother had to make the heartbreaking decision to let him go. I felt the kind of sadness that threatens to engulf you, like a heavy blanket that suffocates. I started worrying a lot – about my kids, about the twists and turns of fate that we have no control over, about friendship and whether I was doing enough for the people in my life, including the bereaved mother.

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In September, I was supposed to travel to Ottawa to take part in the Army Run, a majestic half-marathon in the nation’s capital city. Due to illness and circumstance, the trip had to be canceled at the last minute. The disappointment was excruciating. In the grand scheme of things, it wasn’t a big deal, especially when looked at beside all of the other stuff that had been going on, but at that point my coping skills had been eroded to the point of nothingness. I turned to my trusty method of stress relief and threw myself into my running.

A month later, my training paid off when I ran my main race of the season: the Scotiabank Toronto Waterfront half-marathon. For the fifth consecutive year, I ran the race to raise funds for the Geneva Centre for Autism. Inspired by my son George, I ran my way to a personal best time. It was a truly fantastic race, and that day marks the point at which I finally started to claw my way back from the terrible depression that I had been going through.

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In November I signed up for a novel-writing challenge called NaNoWriMo. I decided that what I really needed was a goal, and writing a book in thirty days seemed like a reasonable one. Every day when I woke up, I sat at my laptop and hammered out two thousand words, and by the time the end of November rolled around, I had a completed manuscript of almost 60,000 words. It was a first draft, meaning I would need to do a whole lot of work to make it fit for public consumption, but I had done it. That achievement did wonders for my confidence.

December has, for the most part, been kind to me. Yes, we had a pesky ice storm that cut out power for a few days and left a mess of fallen trees and broken branches all over the neighbourhood, but we got through it. Although there was the obligatory family drama, we enjoyed Christmas. We even got a picture of Santa that involved a lot of fun and no autism meltdowns.

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Over the next few days, I will be setting some goals for 2014. I have lofty plans that include running a 30K race and getting my book published. For now, though, I am enjoying time with my family, and in spite of the more stressful things that have happened this year, I am feeling grateful for what I have.

This is an original post by Kirsten Doyle. Photo credit for the Scotiabank Toronto Waterfront Half-marathon picture: www.marathon-photos.com. Photo credit for all other images: Kirsten Doyle.

 

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9 Things I’m Tired Of Seeing On Facebook

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The first thing I do every morning, while the rest of the family are still somewhere in Dreamland, is sit down with a cup of coffee and see what’s been going on in Facebookland while I’ve been sleeping. Within the first minute or so, as I’m scrolling down my newsfeed, I usually see about half a dozen things that annoy me. What’s worse is that I tend to get annoyed by the same things that annoyed me the previous day.

Maybe I’m getting old and jaded.

Or maybe people just keep posting the same annoying stuff, day in and day out.

Whatever the case may be, I want to vent about it a little bit. Here is my list of annoying things that I’m tired of hearing about.

1) The US Supreme Court has acknowledged that vaccines cause autism. The US Supreme Court has acknowledged no such thing. Here’s some intelligent, informed reading about that particular annoying topic. And just for the record, people who choose to vaccinate their children are not “sheeple”. The autism community, which already has enough problems, can do without that kind of name-calling.

2) Americans should be very afraid of the fact that the government can’t even put together a functional website, and yet they’re taking control of the health care system. Look, I’m not going to offer my opinions about Obamacare, simply because I don’t know enough about it. Maybe it’s the best thing since sliced bread. Maybe it will be an unmitigated disaster. I don’t know. What I do know is this: the fact that the website doesn’t work is not a predictor of the eventual success or failure of Obamacare. All it means is that the website sucks. This annoying thing is annoying because it’s yet another example of people linking two things that have little or nothing to do with each other.

3) Everything in your fridge is poisoning your family. Every day, I see endless posts claiming that this food is soaked in bleach or that food is really made of mushed-up alien brain. OK, not that last one, but you get the picture. There is so much food-related fear-mongering going on, and I’m just tired of hearing it. I always appreciate information that is valid, informed and balanced. I do not like quote-unquote “information” that serves no purpose but to scare people.

4. The only thing that will stop a bad guy with a gun is a good guy with a gun. I will never understand why we can’t just do what we can to stop the bad guy from getting the gun in the first place. Yes, I know that no system will ever be 100% guaranteed, but should that stop us from trying? Besides, you know what can stop a good guy, whether he has a gun or not? A bad guy with a gun.

5. When a celebrity dies it’s all over Facebook, but when a soldier dies no-one cares. First of all, there’s nothing wrong with people talking about celebrity deaths. Celebrities are a part of our culture. It’s OK for us to feel sad when they die. Secondly, I find that people are very respectful about the military, and fallen soldiers do get extensively recognised.

6. 97% of people won’t share this lame post that completely fails to raise awareness about cancer, child abuse or mental illness. I care about all of these things, but I don’t feel the need to prove it by annoying all of my Facebook friends. Anyway, where does that statistic even come from?

7. Asking your friends to change the settings on posts they see in their timeline will prevent Facebook from sharing your entire life with everyone in the world. As annoyances go, this is a pretty big one. The only person who can control who sees your posts is you. Not your friends. If you don’t want the public to see your posts, go and check your privacy settings. But if your friends make the change you’re asking them to make (which usually comes with a threat to unfriend anyone who doesn’t comply), all that will happen is that they will stop seeing your posts. Am I the only one who sees the irony in that?

8. Because cigarette packaging has gruesome images on it, fast food should come with pictures of obese children, and alcohol should have pictures from the scenes of drunk driving accidents. Here’s the thing. If you eat a burger, I’m not going to get fat. Your consumption of fast food has no impact on me. It is true that when people get drunk and then drive, other people can die. But drinking and driving is against the law. Cigarettes can kill people who are not smoking them when used exactly as intended, in accordance with the law.

9. It doesn’t matter that this heartwarming story is fake. It’s still inspiring. No, it’s NOT. It’s fake! Maybe – like I said earlier – I’m getting old and jaded, but I just don’t get how something that’s not true can be inspiring. If you want to inspire me, tell me a heartwarming story that actually happened. Like this one.

And yes, that story is true. I checked it myself on Google Maps, and on a site that everyone should bookmark for those occasions when they just have to share something they’ve seen on Facebook: Snopes.

What annoyances do you see in your social media feeds?

This is an original post by Kirsten Doyle. Photo credit: marksmotos. This picture has a creative commons attribution license.

 

 

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5 Diversions That Keep Me Sane

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Several years ago, shortly before George was diagnosed with autism, I realized that I needed a life. I can trace this realization to the exact moment it struck me. George, who was three, was at daycare, and one-year-old James was taking a nap. For all intents and purposes, I was alone. I was wandering from room to room picking up toys and gathering dirty laundry with only the background noise of the TV for company. The TV was tuned to TVO Kids because I had been too lazy to change the channel. An episode of Max & Ruby came on (for the uninitiated, Max & Ruby is an immensely annoying kids’ TV show featuring two child bunnies with unaccountably absent parents), and I actually sat down to watch because it was an episode that I hadn’t seen.

About three seconds later, I was struck by how ridiculous this was. Here I was, a grown woman with a university education, making a conscious choice to watch a TV show aimed at three-year-olds. What had happened to me? Clearly, I needed to take urgent action to prevent my brain from turning to mush. I decided to resurrect old interests that had gone by the wayside, and to start investing more time and effort into my friendships.

Since then, life has become more complicated for a variety of reasons, and so it has become even more important for me to have my me-time. Here are my five favourite things to do when I need to disconnect from the responsibilities of parenting.

1. Go for a run. I’m not sure whether it’s the fresh air or the motion, but there is something magical about the way running restores my mental equilibrium. This weekend, I was feeling an incredible amount of sadness. I went out for a long run, and when I got back I discovered that I had left the sadness out on the road somewhere.

2. Book, wine and bubble bath. This is my favourite way to unwind after a long day. When the kids are asleep, I run a bubble bath, and then I retreat from the world with a glass of wine and one of the Indigo Books new book releases.

3. Time with friends. The trouble with most of my friends is that they live in other countries. I don’t get out socially very much, but I still take whatever opportunities I can to grab lunch or coffee with friends. And for the friends who don’t live in the same city as me, there’s always Facebook. I have some amazing friends who I’ve never actually met in person, and those friendships are just as important to me as my “real-life” friends. While some people might criticize me for “wasting time on Facebook”, what I am actually doing is spending time with friends.

4. Learning new things. I am enrolled in a post-graduate writing certificate program, that I’m hoping will lead to a Masters degree program. Since enrolling in the program and successfully completing the first two classes, I have been reminded of how much I love to learn. Yes, it’s hard work, and I bitch and moan about deadlines and so on, but my complaints are really just hot air. I love being in school, and I love the feeling of accomplishment that I get from it.

5. Nocturnal TV time. I have bouts of insomnia from time to time, and there are few things worse than lying awake in the middle of the night worrying about stuff like whether your child with autism will be OK after you’ve shuffled off your mortal coil. When it feels as if the anxiety will overtake me, I get out of bed and curl up on the couch sipping wine and watching my Friends DVDs. Sometimes, all I need is a bit of solitude combined with feel-good comedy.

What are your go-to methods for escaping reality?

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy. Photo credit: jonathanhoeglund. This picture has a creative commons attribution license.

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Politics And Autism: Deciding Who To Trust

Today I discovered that I have my very own YouTube channel, and by coincidence, I had a cause to use it. There is a provincial by-election coming up in the electoral region that I live in, and there is really only one issue that I will be basing my vote on. Although the federal government has some loosy-goosy policy on funding for special needs kids, this is largely the domain of the provincial government. This evening, my husband went to a meet-and-greet hosted by the major candidates in this by-election. He asked all of them to state their stance on autism funding for the camera, and the results were quite surprising…

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This is an original post by Kirsten Doyle. The video is original, unedited footage shot by Gerard Doyle and Kirsten Doyle.

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133 Days To Go

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In 133 days, 10 hours and 20 minutes (give or take a few), I will be starting my fifth annual run for autism. I run several races each year, and all of them mean something to me. Each race has its own story of struggle and triumph. Every race – even the ones that I don’t do particularly well in – is a victory.

There is no race that brings a tear to my eye in the same way as the Scotiabank Toronto Waterfront Half-Marathon. This is the race that I dedicate to my son George, my amazing child who is so brave and determined in the face of his disability. As I cross the start line of this race, it is with the thought that while I will be done with the run in a little over two hours, George has to live with the challenges of autism every single day for the rest of his life. For him, there is no finish line. He does not get to stop and rest.

He has plenty of triumphs, though. Some of them would go unnoticed in “typical” households, but for us, they represent growth and a step towards independence. There is no such thing as a “small victory” in my family. That is one great thing about having a child with autism. You develop the ability to truly appreciate what others might regard as “the little things”.

I believe that the more help George gets now, the brighter his future will look. So my husband and I do everything we can to provide him with opportunities for living and learning. For me, that includes doing my part for the autism community, in an effort to make the world a better place not only for George, but for other people with autism.

And so I run, and I raise pledges. All funds that I raise go to the Geneva Centre for Autism, where they are used to provide much-needed services for children and youth with autism. Examples of things purchased with the money include musical instruments, art supplies, sports equipment, iPads, summer camps, job training and much more.

Today, I am excited to announce that pledges are open for my 2013 run for autism. At the moment, my fundraising goal is a cool thousand dollars, but I am really hoping that I can surpass that and up my target.

If you have any dollars to spare, please consider sponsoring me for this run.

Together, we can make a real difference to the lives of kids with autism.

To donate, please visit my fundraising page.

 

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Diagnosis Day: 8 Things I Wish Someone Had Told Me

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Do you ever look back on a particular day in your life and wish things had gone differently? If only you’d said this thing, or if only you’d done that thing. We all know, of course, that those “if only” scenarios don’t do us one whit of good in terms of the outcome, but that doesn’t mean we’re not allowed to think of them. Sometimes we can use those lessons in the future, and sometimes we can help other people going through similar things.

One of the most pivotal days in the life of an autism parent is the day of their child’s diagnosis. When I look back on that day, I remember shock, tears, and a sense that a giant constrictor had wrapped itself around me and was squeezing me so tightly around the chest that I could barely breathe.

Realistically, there’s no way to completely cushion a blow like this. But maybe – just maybe – there are some things that would make it easier to bear. Here are the things I wish I had known when I got the diagnosis.

1. The doctor does not have a crystal ball. Any dire predictions that he makes for your child’s future are not set in concrete.

2. If you Google too much too soon, you can drown under the weight of the information overload.

3. Your child is first and foremost a child. Don’t let your child become the diagnosis, the whole diagnosis and nothing but the diagnosis.

4. You may feel as if your reality has shattered, but all that’s happened is that your reality has changed. You have to give yourself the space and time to get used to your new view.

5. Now more than ever, you need to nurture your relationship with your partner.

6. Apply for all the funding and services you can, even if you think odds are stacked against you. There’s always the chance that something will stick.

7. Don’t be afraid to cry. Even if it’s in front of the kids. It’s OK for them to know that you’re human.

8. Know that you can do the whole special needs parenting thing. You may not feel that way in the beginning, but you will. You don’t have to know all the answers – because let’s face it, none of us ever does – just know that you will be the parent your child needs you to be.

 

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Health Activist Writers Month Challenge

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Happy April Fools Day! This day means two things. First, we all get to play pranks on our families and co-workers. And second, it is the first day of the Health Activist Writers Month Challenge. This is a fancy way of saying that for the month of April, you will be seeing one blog post from me every day, as I try to raise awareness for the causes that matter to me. I participated in this challenge last year – miraculously, without missing a single day, and I had such a lot of fun with it that signing up again this year was not even a question.

Why am I doing this? With everything that I already have on my plate – full-time job, commute from hell, finances for the husband’s business, school, running, parenting, and a million other things – how can I commit to writing a blog post every single day? I mean, that’s a lot of effort.

I do it because I love it, and because I am passionate about the causes I write about. I have a genuine desire to make a difference through the stories I tell. I want parents whose kids have just been diagnosed with autism to know that everything will be OK. Sure, the definition of “OK” might change, but there is always hope. I want people to know that the kid they saw having a meltdown in Wal-Mart wasn’t being a spoiled brat. He was simply having immense difficulty processing all of the sensory inputs that were going on. I want other moms in my position – moms who are juggling a lot of stuff including bouts of mental illness – that it can be done, and that they should take some time out to take care of themselves.

Sometimes I simply want people to celebrate my kids’ accomplishments with me, or I want them to share my outrage at something, well, outrageous, or I just want them to have a bit of a laugh.

Yes, it’s a time commitment, but it’s one that I am more than happy to make. Because sharing a little slice of my life through this blog is my passion.

I am excited to be taking part in this challenge, and I am excited to read the awesome posts that my fellow health activists will put up.

You too can sign up for this challenge. Just visit info.wegohealth.com/hawmc and fill in your information!

What are the health concerns you care about the most?