This is the 500th post on Running for Autism! To celebrate this momentous occasion, I have made you a special collage.
5 Things This Autism Parent Wants You To Know
April 2, 2013 By
1. When we tell you that our child has autism, don’t say you’re sorry. We know you mean well, but why should you be sorry? We’re not. Autism parenting can be as tough as hell, but we adore our kids, and like any parent, we do everything we can for them.
2. Autism is a neuro-processing disability. It is not an intellectual disability, although the symptoms may or may not include cognitive impairments. Don’t assume that a child with autism struggles intellectually, but at the same time, don’t assume that everyone with autism is like Rain Man.
3. If my child is in the room, any questions you have about him should be addressed to him, not to me. Don’t ask me how old he is or what grade he is in at school. Ask him. Afford him the same respect you would give to any child. He may not be able to answer all of your questions, but he has to have the opportunity to try. If he needs prompting, I will help him. But always operate under the assumption that he can, not that he can’t.
4. I don’t expect society to bend over backwards for my child. He is a child with autism living in a neurotypical world, and we are doing our best to give him the skills he will need in order to survive. He is always going to be different, though. He will never fit any mould of what people may think someone “should” be like. What I ask is that you embrace and accept those differences.
5. It is a very sad fact that the autism community is fragmented by different beliefs, and sometimes those fragments attack each other. Moms who choose to vaccinate their kids are accused of being bad parents. People actively campaign against autism organizations that do not promote a certain agenda. Insulting terms like “sheeple” are flung around. All of this really bothers me, because we should have a common goal – that goal being a better life for our kids. That should be what we are aiming for, over and above everything else.
Health Activist Writers Month Challenge
April 1, 2013 By
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?
12 Reasons You Know You’re An Autism Parent
March 29, 2013 By
1. Your son will defend to the very last his right to wear his hat at all times. Even while he’s sleeping.
2. When you’re cutting your child’s nails the neighbours come over to ask whose kidney is being forcibly removed.
3. If the coffee machine is moved one gazillionth of an inch to the left, World War III becomes a real possibility.
4. Your nine-year-old can fix any computer problem you throw at him in about three seconds.
5. You want to ask the Mythbusters team to investigate whether “full night’s sleep” really exists.
6. Your child has 237 Mr. Potato Heads and they are lined up according to the colour of their hats.
7. The transition from winter clothes to summer clothes and vice versa has to be planned like a military strike.
8. Your son doesn’t have a teacher, he has a team.
9. You bond with your kid by stimming with him.
10. You throw a party to celebrate when you catch your child telling a lie.
11. You throw a party to celebrate when your child drops an F-bomb in the right context.
12. If your kid has to give a urine sample, he then thinks he has to pee in a jar every time.
Race Report: St. Patrick’s Day 5K
March 21, 2013 By
Three weeks ago, my sports medicine guy told me that I was not to run the half-marathon that I was registered for the following weekend. Through my own stupidity, I had aggravated my old ankle injury, and the doctor practically guaranteed that if I ran that that half-marathon, I would be out for the rest of the season.
If I behaved myself (in other words, if I followed doctor’s orders), I would be allowed to run the St. Patrick’s Day 5K. So I scaled back my training and paced myself more appropriately. When the doctor told me to run on the treadmill, I ran on the treadmill. I only ventured out onto the road when he said I could. I behaved impeccably, and sure enough, I was cleared for takeoff. When I asked the doctor if he wanted me to exercise any caution during the race or if I could just go hell for leather, he said, “Run like you stole something.”
All right, then.
If I was going to run like I stole something, I might as well have fun with it. I decided to dress up a little, in keeping with the spirit of St. Paddy’s Day. And so on the morning of the race, I got onto the subway with temporary Irish-themed tattoos all over my face, ridiculous green-and-white striped socks going all the way up to my knees, and green and orange hair extensions attached to my hat. I didn’t even stand out. Torontonians – even those not of Irish descent – take St. Paddy’s Day very seriously, so I blended right in. It was the people dressed normally who stuck out like sore thumbs
I got to the start line with about half an hour to spare. Usually I like to arrive at races at least an hour ahead of time, but it was icy cold, so I was glad to have less time for standing around. I checked my bag and did some half-hearted warm-ups. After my injury, I wasn’t really expecting to be a speed demon at this race. My goal was to beat 32 minutes.
Ten minutes before the start, I stood at the start line among about a thousand other runners, almost all of whom were dressed for the occasion. It was fun to see all the leprechaun hats and bright green wigs. The starting siren went, and we were off.
My strategy was simply to go as fast as I could, but I got boxed in by the crowds at first. I was only really able to take off after 500 metres or so. The course was pleasant: downtown Toronto is kind of flat, so I was able to go at a fairly consistent pace. The mood was festive throughout. Runners were laughing and joking, admiring each other’s outfits, and cheering each other on. Some had liquid in their water bottles that looked suspiciously like beer.
The best part of the race was the inspiration I drew from the runners around me. The Saint Patrick’s Day run is organized in support of Achilles Canada, an amazing organization that enables people with disabilities to be athletes. There were a lot of runners on the course with a variety of challenges. There were blind athletes running with guides, people in wheelchairs, double amputees with prosthetics.
It was humbling to witness the enthusiasm and dedication of these athletes. I felt truly honoured to be among them.
I was absolutely spent at the end, and struggled to get through the last kilometre. But when the finish line came into view, I felt that magical surge of energy, and I was able to kick it up a notch, finishing in a time of 30:32.
Not bad for a post-injury first race of the season. I feel like this run has given me the kick-start I have been needing to start my season of training in earnest.
One final thought: the free post-race beer went down very well!
(Photo credit: Kirsten Doyle)
When Moms Take Flight
March 15, 2013 By
When I became first became a mother, I had the same experience that almost all first-time moms go through: all sense of self went completely out of the window. I was no longer a person in my own right, I was Somebody’s Mom, and I had to devote every waking hour – and pretty much all of my sleeping hours – to the care and well-being of that Somebody.
Two years later, I was Mom to not just one, but two Somebodies. A year after that, my firstborn was diagnosed with autism, and I joined the exclusive club of special needs parents.
As I became more and more immersed in my role as a parent, my world started to get smaller and smaller. I can honestly say that if it hadn’t been for my job and the friends I made on the Internet, I would have gone completely around the bend.
My world started to expand a little when I started running. That at least gave me some time to myself, even though a nagging sense of guilt always went running with me. For a short period of time, I even got some running friends, but that didn’t work out. It wasn’t because of them – they were absolutely lovely people – but I was never able to go running at the same time as them. So that was that.
A couple of years ago, someone – possibly a co-worker – asked me what my idea of ultimate luxury was. With no hesitation, I replied, “24 hours by myself in a hotel room with wine, a good book, a hot tub and a TV.” I had this dream of watching whatever shows I wanted, spending time in the hot tub with wine and a book, and then drifting into a deep contented sleep. I fantasized about sleeping through the night and staying in bed for as long as I wanted to in the morning.
I felt terrible about actually wanting this. I mean, my wildest dreams involved being away from my family. What kind of mother was I? Of course, the idea of going away without my kids was out of the question. I did go on two solo trips to South Africa, but since they were both for deaths in the family, they didn’t really count as “me time”.
About five months ago, something really strange happened. I left my husband and kids at home and went away for a weekend. There was no emergency. No-one had died. I didn’t have to work. I went away for the bizarre reason that I wanted to.
For the whole weekend, I waited for the guilt to kick in. I expected a sudden onslaught of angst. I resigned myself to the fact that sooner or later, I was going to feel like the worst mother in the world for abandoning my family.
Except that this didn’t happen.
To put it bluntly, my weekend was bloody fabulous. It involved nice dinners, parties, and wine-tasting in Niagara. I didn’t catch up on my sleep deficit, because I was too busy meeting new friends and partying harder than I have in at least 20 years. I checked in with the home base a couple of times, and knowing that everyone was still alive and the house was still standing, I didn’t worry about a thing.
I am not too sure exactly why I felt such freedom to just enjoy myself, but I suspect that I had reached a point of severe burnout. At the risk of sounding melodramatic, taking some time out for myself became a matter of survival. For several years, I had been burning the candle at both ends, working long hours at work, taking care of the family, helping my husband with his business, making sure the bills were paid. I was getting up at five in the morning because that was the only time I could go running. Frequently, I had to choose between sleep and exercise.
And I got to a point of critical mass, where I just couldn’t take any more without a break.
Here’s the incredible thing: the world kept on turning. When I got home at the end of the weekend, the kids were fed and happy and reasonably clean. The house was only marginally untidier than usual. Most importantly, everybody was happy. In retrospect, there is every possibility that my family had needed a break from me as much as I had needed a break from them. After all, when life starts to overwhelm me, I can get a little intense and difficult to live with.
Being away for that weekend gave me some much-needed perspective. I realized that yes, my husband and kids do need me and love me, but they can also survive without me from time to time. I came back with renewed energy, and frankly, my husband and kids benefited from having time together without me. This experience was good for all of us.
My next break is coming up in about a month, when I head out of town to go on a retreat for special needs moms. I cannot wait to go. And I cannot wait to come back, better and stronger for my family.
(Photo credit: Kirsten Doyle)
Autism Awareness: When The Puzzle Pieces Don’t Fit
March 7, 2013 By
In many countries around the world, April is designated as Autism Awareness Month. In the lead-up to it, I am starting to see more postings on Facebook offering autism awareness merchandise, providing little factual snippets about autism, and inviting people to “Light it up Blue”.
I am also seeing ranty posts about how awareness is NOT ENOUGH, action is NEEDED, and the Light it up Blue campaign is nothing more than a ploy to line the pockets of people working for Autism Speaks, who let’s face it, do not provide financial assistance to affected families.
Sigh. Here we go again.
I don’t have feelings one way or the other about Light it up Blue or Autism Speaks. I don’t care that they don’t give money to families, because they are an organization that funds research. I have a feeling that some of the people so vehemently opposed to them care less about whose pockets are being lined and more about the fact that Autism Speaks is not a proponent of the controversial vaccines-cause-autism theory.
Which is fine. I don’t expect people to support organizations with philosophies that differ from their own. I believe that the prime driver of autism is genetics – I wouldn’t throw my voice behind an organization that actively tries to prove otherwise.
I also wouldn’t say derogatory things about people who don’t share my views. I wouldn’t put up postings implying that those who don’t agree with me are stupid or uninformed. I wouldn’t make use of insulting terms like “sheeple”.
I would live and let live.
People tend to have reasons for their beliefs. I know for a fact that vaccines had squat to do with my son’s autism, and both of my children are up to date on all of their shots. But I would not presume to tell people that just because my kid came out of the womb with autism, theirs must have as well, and if they don’t agree with me – then, you know, they are “sheeple”.
I tend to use the phrase “autism community” a lot, as if we were all just one big happy family that just wants the rest of the world to accept our kids. At times, though, I question whether there is an autism community. Sometimes – particularly during Autism Awareness Month – it feels as if there are many different sects that are all divided. Each sect has members who are more than happy to leave others to their different beliefs, and each sect has those who are almost militant in their attempts to get other people to think the same way they do.
I am of the opinion that Autism Awareness Month should not be used to push agendas about what may or may not cause autism. I think it should focus more on the fact that our kids have autism, whatever the cause was, and they are individuals who have a lot to offer society. It should be about trying to make the world a better place for our kids – a place where they can grow and flourish and reach their full potential, whatever that might be.
How can autism parents hope to make the world accept their kids when we cannot even get along among ourselves? What kind of example are we setting for the society that we’re hoping will treat our kids with the respect they deserve?
If you want to Light it up Blue or promote awareness in any other visible way, go ahead. Whether you support Autism Speaks or any other organization, give them whatever support you feel comfortable with. Tell people about your views if you like, but graciously accept that they might think differently.
Autism parents, we’re all in this together. All of our kids have autism. Let’s be nice to each other for their sake.
(Photo credit: Ashtyn Renee . This picture has a creative commons attribution license.)Team Sports and Autism: A Not-Impossible Dream?
March 1, 2013 By
One of the most poignant moments in George’s early childhood happened when he was four. It was a late summer’s day, about four months after he had been diagnosed with autism, and I was picking him up from daycare. On nice days the daycare staff took the children out to the playground at the end of the day, and parents would pick them up from there. This was one of those days.
I stood at the fence enclosing the playground, and for a few minutes I watched the kids at play. Five or six children, all around George’s age, lined up for an impromptu little race. Ready, set… GO! And off they went, for just a few yards. George stood by himself under a tree, watching these events shyly.
A sense of sadness tugged at my heartstrings. Although he was surrounded by children, he looked so utterly alone in that moment. The other kids weren’t excluding him, he just didn’t know how to join in.
Because this was so soon after George’s diagnosis, I was still mourning the loss of what I had thought family life would mean. That vision had included childhood birthday parties and Little League baseball teams. And seeing my kid standing there alone, not looking as if he would ever participate in anything – well, it hurt.
As George has navigated his way through nine years of life, I have been heartened to see how well other kids have responded to him. He has this aura about him – this sweet pureness – that seems to attract other children. While many nasty comments have been thrown his way by adults, I have never seen a child being mean to him.
Not once.
I am too realistic – or perhaps too jaded – to believe that this will continue. I have spoken to parents of teenagers with autism, and I have heard speeches given by adults with autism. And with very few exceptions, there is one common thread running through everything I have heard: high school is hell for people with autism. That is when the bullying starts, when kids with special needs get picked on and subjected to humiliation.
If that is the case, though, how do you explain this very cool thing that happened last summer when I was out for a leisurely walk with my family? The boys down the road – 15 or 16 years old – were shooting hoops in their driveway. As we walked by, the ball rolled into the street, and George picked it up. Like a true basketball player, he bounced the ball off his knee, and then threw it towards the hoop. He missed by a mile.
And with no hesitation whatsoever, these teenage kids – you know, the ones who are supposed to be mean to special needs kids – lowered the hoop so that George to join in.
Parents of kids with autism are very fond of talking about how society discriminates against their kids, and to an extent, this is warranted. George and I have both been on the receiving end of stares, rude comments, assumptions and accusations. But these have come from adults.
Maybe a segment of society is starting to get it right, though. There will always be high school bullies, but maybe the upcoming generation is growing up to be more intuitive to the needs of individuals with special needs.
Someone posted this delightful video on Facebook this week. Sit through the annoying ad at the beginning, and then grab a Kleenex and take a look. This is the kind of thing that gives me hope for my child’s future.
High school basketball player passes ball to mentally challenged player on the opposite team
(Photo credit: StuSeeger. This picture has a creative commons attribution license.)
Parenting and Mental Health: A Tough Balancing Act
February 21, 2013 By
When it comes to parenting my kids, I say all the same things that most mothers say. Everyone has Bad Mommy Days. I’m only human. I have to take care of myself in order to take care of my children. Even when things aren’t going so well, I need to remember that I’m a good mother.
But who am I kidding, really? Like most mothers, I expect myself to be perfect at all times, and I take the concept of guilt to a whole new level. Even more so than the Catholics do.
I pile one thing after another onto my plate, and somehow I manage to keep all the balls in the air most of the time. In the event of me dropping a ball, it’s always one that pertains to my own physical or mental health. In other words, I make it a priority to take care of everyone else, but I just kind of accept that it’s OK for me to neglect myself in the process.
This does not make me special by any means. Most mothers do this, and we all know that we’re not supposed to. We all know that the world won’t end if we take a bit of time to ourselves instead of putting on that load of laundry so that Little Johnny can wear his favourite shirt to school tomorrow. But we head right on down to the washing machine anyway.
Let’s face it, this whole equation is grossly unbalanced. I mean, here I am, a mom of a kid with autism and a kid who’s just a little – you know, spirited. I work full-time, freelance on the side, help the husband with his business and take care of household finances. That’s before I even get to the laundry.
It gets really tricky when it comes to my mental health. This is a subject that I am generally not comfortable talking about, but I feel that it’s important. Many, many mothers – myself included – have to deal with the reality of coping with mental illness while being the best parents they can possibly be. And it’s hard, because as scared and vulnerable and anxious as we may feel, it is our instinct to be strong for our kids.
This week is particularly tough, and here’s why. At this week’s therapy session, me and my therapist started the process of delving into a part of my life that was, to say the least, traumatic. I was describing a specific event – not glossing over the story, but describing everything in detail, and reliving the whole mess all over again.
A process like this comes with a certain amount of psychological fallout. My nerves have been in tatters and my emotions are raw. I am not sleeping, because all of a sudden my mind is being forced to try and process stuff that I’ve been keeping buried for the last twenty years.
And I am a mom. I have kids to take care of, autism meltdowns to deal with, boo-boos to kiss better, hugs and affection to bestow.
Being a mom and dealing with mental illness are not really activities that complement one another. And when I have to choose between taking care of my kids and dealing with my issues, guess who wins every single time?
While I’m putting on a brave face for my kids, though, my feelings are still there. I am still feeling the stress, the trauma, the anxiety, and depending on the day, the depression. I am still staying awake until late at night because I’m afraid to go to sleep and face the nightmares.
But I do what I have to do for my kids, because no matter what weirdness is going on inside my own head, parenting will always be the most important thing I ever do.
I know that I am not alone. I know that there are other moms out there who live with mental illness. I would love to hear from those moms, to find out if – and how – they keep things balanced.
(Photo credit: darcyadelaide. This picture has a creative commons attribution license.)
Book Review: I Run, Therefore I Am STILL Nuts!
February 16, 2013 By
My sports medicine doctor once told me that runners are his least favourite patients.
“It’s nothing personal,” he was quick to add. “It’s just that rehabbing you people after an injury is impossible. You never listen to instructions, you just go out and run long before you’re ready to, and then you’re back here ten days later wondering why your injury has flared up.”
I have to admit that my doctor has a point. We have a very special kind of dedication to our sport, runners do. If our training program calls for a 20km run, then we will do a 20km run, even if the Weather Network is warning motorists not to go out because of a blizzard. We take pride in the incredulous looks we get from people when we go out in mad conditions, we wear our black toenails like badges of honour, and we are slaves to our Garmin watches.
If you can relate to this, you will love Bob Schwartz’s hilarious book, I Run, Therefore I Am STILL Nuts! The author writes about his experiences as a runner, from injuries to races, from trying to force encourage his kids to run with him to giving in and getting a dog instead. All through this book, I was nodding along knowingly and gaining little insights into the slight insanity that the partners of runners have to live with. I’m sure my husband appreciates the new-found awe with which I regard him.
You don’t even have to be a runner to appreciate this book. If you live with a runner, know a runner, or simply get frustrated with races messing up the traffic where you live, you are sure to get a kick out of reading this. The easy reading and laugh-out-loud humour are supplemented with delightfully funny artwork by B.K. Taylor.
Runners and supporters alike will get more than a good laugh out of reading this. Interspersed among the humour are little snippets of wisdom. Thanks to the book, I now know how I might be able to achieve the all-important Runner’s High if an injury prevents me from running. I have a new appreciation for the sheer simplicity of running, and for the first time I realize that runners are more than a little obsessed with the concept of time.
I also take pride in the fact that I am part of a tribe that can claim to be truly nuts.
(Review copy and image of cover kindly provided by Human Kinetics).
