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Too Much Information?

November 4, 2012 By

Today’s prompt in the National Health Blog Post Month challenge invites participants to talk about disclosure. How do we decide what to share and what not to share in our posts?

This is a question I grapple with from time to time, as all bloggers should. As soon as you put any aspect of your life onto the Internet, you can say goodbye to privacy. Sometimes that really doesn’t matter. There’s no danger in me posting my race times and less-than-flattering photographs of myself in motion. Any Joe on the street can go online and look up my race times anyway. Since that information is publicly available, I may as well post it in my blog where I can brag about it a little.

I am equally open about my son’s autism and the challenges it presents to my family. This is where the question of disclosure becomes a little tricky, because I am being open about people other than myself. There are certain things that I will not discuss on the Internet, but in general I talk quite freely about the lives of my kids, and to a lesser extent, my husband. It is one thing for me to talk about myself, but my right to make that decision on behalf of my children is a bit of a gray area.

My blog serves multiple purposes. It’s a form of expression for my socially anxious, bad-at-verbal-conversation self. Writers as a breed tend to be a little neurotic and introverted, and I am no exception. This is how we communicate. Writing gives us a voice that we wouldn’t otherwise have.

Apart from fulfilling my own need for self-expression, my blog gives hope to other parents of special needs children who might be feeling a little lost and alone. From time to time, I get emails from readers telling me how my writing has made them feel less overwhelmed, and more able to cope. Those emails make everything truly worthwhile, because at the end of the day, what I want is to do my small part to make the world a better place for our kids, for the parents and siblings, for everybody.

At the same time, I hope to smash the stigmas surrounding autism, and the way I see it, the best way to do that is to be frank about it all. People are afraid of what they don’t understand, and in talking about autism, I hope to give it a human face, to give people the message that although there are little kids with autism, they are first and foremost little kids.

There are aspects of my kids’ lives that I will never talk about on my blog. My basic rule is this: if I cannot talk about it in public, I cannot talk about it on my blog. I agonize over many of my posts, weighing the benefits of sharing information against the risk of anyone getting hurt. I have written entire posts and then deleted them without publishing them.

It’s a delicate balancing act sometimes, and I find that as long as I listen to my gut instinct, it’s OK.

How do you decide what information to share on your blog? Have you ever shared something and later regretted it?

(Photo credit: John “Pathfinder” Lester. This picture has a creative commons attribution license.)

Filed Under: blogging, Disclosure, Internet, National Health Blog Post Month, Privacy, WEGO Health Tagged With: , , , , , , , ,
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Scotiabank Toronto Waterfront Half-Marathon: 2012 Run For Autism

October 17, 2012 By

It is raining and I am starting to get cold. I have already surrendered my jacket to the baggage check tent, so I am standing in this foul weather with shorts and a short-sleeved T-shirt. There is no shelter and the only thing keeping the rain off my face is the peak of my hat. This is good. I cannot abide water on my face. The line-up for the Porta-potties – a standard feature of the starting area of every race – inches forward too slowly.

Soon I will be toeing the start line of my fourth Run for Autism, and I feel more than a little emotional as I think about the reason I am running this race. Every mile is dedicated to a child with autism, but really, this run is for all kids with autism everywhere.

I wrap my arms around myself and shiver, both from cold and anticipation.

It is starting to rain harder.

The morning of the race was a little chaotic, made worse by the rain. We had circled around city blocks for about forty minutes in search of somewhere affordable to park. As a result, my designated warm-up time was taken up by the Porta-potty line, and when I had done what I needed to do there, I warmed up by jogging from the Porta-potties to my place in the start line. The massive scale of this event meant that this was a reasonable jog – enough for me to satisfy myself that my tight left leg and niggling back pain wouldn’t hinder me during the race. At some point right before the race started, I noticed that the rain had let up, and the conditions were now perfect for a run.

A fair distance ahead of me, I heard the starting siren go off, signalling the release of the runners in the first corral. My friend and coach Phaedra was somewhere in that group, and I silently sent good wishes to her through the ether. I knew that by the time I crossed the start line, Phaedra would have done at least two kilometres, possibly closer to three.

The siren went off again, and the second wave of runners was off. My corral was next, and I shuffled forward with the crowd. Just as the anticipation was building up to an unbearable level, the announcer counted down to the start, the siren went, and we were off.

The course was different this year. In prior years, half-marathoners ran down to the Lakeshore and stayed there for most of the out-and-back route. This time round, the route took us around more of the city streets before turning onto Lakeshore. I like some variety in my routes, and I really enjoyed the changes.

For the first few kilometres, I comfortably stayed ahead of my target pace. I restrained myself from going out too hard, and I felt good. I had initially pondered the idea of running with a pace bunny, but I quickly dismissed that idea. I always worry that if I run with a bunny I will be running their race, when I really should be running my race. This season in particular, I have become a lot better at running smarter as well as faster, so I really didn’t need to pace myself against another runner.

Which is why I am somewhat baffled that when I unexpectedly found myself alongside the 2:10 bunny just before the halfway mark, I decided to stay with him. I was so caught up in the excitement of the day, and at that point I was feeling strong, and those two factors together probably sent any sense of logic out the window. As good as I was feeling, I had never intended to run this race at a 2:10 pace.

It worked for about 3K, but then I started to fade. I drifted to the other side of the road and let the bunny go, and for the next 5K or so, I was able to maintain my original pace.

The bad news is that the damage had been done. My efforts to stay with the pace bunny had made my tight left leg flare up, and the nagging little pain in the small of my back started to extend down my left buttock, where it intersected with the pain in my leg.

The good news is that by this point I only had 2K to go. My body was screaming at me to stop. I felt as if my leg was on fire, but the thought of all of those kids with autism, including my own child, kept me going. I was going to stop at nothing to finish this race.

The final kilometre can only be described as agony. My left leg was actually twitching and I was running at a limp. The finish line kick that I usually pride myself on was replaced with a series of stops and starts, but I did still manage to run across the finish line.

If victories are made sweeter by how hard you work for them, then this one was the sweetest of them all. Of all the half-marathons I have done, this one was definitely the hardest.

In spite of how tough those last kilometres had been, I still ran a personal best, crossing the finish line in a time of 2:17:31. I actually cried as the finisher’s medal was placed around my neck.

Tears of pain. Tears of joy. And most of all, tears of love for my son who is my inspiration.

(Photo credit: Kirsten Doyle)

Filed Under: Half-Marathon, Injury, Race, running, Running for Autism, Scotiabank Toronto Waterfront Races Tagged With: , , , , , , ,
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What Autism Parents Have Patched Together, Let No Media Man Put Asunder

July 23, 2012 By

I am angry.

I’m not talking about mild aggravation here. I am scream-in-frustration spit-in-someone’s-eye angry. I would like to take the object of my anger, lock him into a room with me, and give him a stern what-the-bleep-are-you-thinking talking to.

Deep breath… soothing thoughts…

Allow me to explain.

As an autism parent, I spend the better part of my life fighting for stuff. Six years ago, I fought for the assessment that led to George’s diagnosis. Then I fought for services. Every year I fight for funding to pay for respite workers. I fight for educational accommodations and opportunities for my son.

I fight for awareness.

Most of all, because I want my son to have the opportunity to live a happy, healthy, productive life, I fight for acceptance. I try to encourage people to look past the more challenging aspects of autism to see my child for who he is: a beautiful human being, full of love and bursting with potential.

From time to time I see baby steps of progress. Someone might leave a comment on my blog saying that they have a greater understanding because of my writing. Or I might see comprehension dawn in someone’s eyes when I offer an explanation for a grocery store meltdown. Those moments of progress are so gratifying, because they give me hope for my son’s future.

And then, along comes MSNBC host Joe Scarborough, stating that the man responsible for the Colorado movie theatre shooting was “probably on the autism scale.”

Thanks, Joe. Way to promote acceptance for people with autism. Telling the world that a kid with autism could potentially grow up to be a mass murderer really helps our cause.

What astounds me is that Joe Scarborough is the father of a child with Aspergers. Having parented a child on the spectrum, hasn’t he had to have the same fights as other autism parents? Has he not had to beg for funding, or services, or the rewording of a point in an IEP? Has he not dealt with the stares of unsympathetic strangers or the ostracism of his child?

Has he not worried about whether his son will be accepted by the society in which he has to live?

Joe Scarborough’s statement about the Aurora shooter is not based on anything but dangerous speculation. It is my hope that most people will have the sense to dismiss what he said as groundless nonsense. It is my fear that he has planted new seeds of baseless stereotyping that will serve to further isolate the kids we are trying so hard to integrate.

People really need to think before they speak. Especially people with any kind of public voice.

(Photo credit: Fifth World Art. This picture has a creative commons attribution license.)

Filed Under: Acceptance, autism, Colorado shooter, stereotyping Tagged With: , , , , , ,
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Accidental F Bombs

July 14, 2012 By

The first time my younger son James, who had just turned four, dropped an F-bomb, he was out with my husband buying me a new laptop to replace the one that had gone kaput. According to eyewitness accounts (i.e. my husband), the conversation went something like this:

James (sitting in the back with my husband driving): Daddy, can I have a donut?
Husband: OK! Look out for a donut shop and tell me if you see one!
James (ten minutes later): Where’s the f*cking donut shop?

My husband tried to be stern about it, but he had a hard time keeping a straight face. It was one of times where you find something funny but you cannot let on that you find it funny.

Two a bit years later, the word has fallen out of favour with James. He doesn’t understand what it means (at least, I hope he doesn’t), but he does know that certain words are “bad words”. When he hears me slip up and utter a curse word, he tells on me, running to his dad and calling out, “Mommy said a bad word!”

A recent slip-up on my part has created F-bomb issues, not with James, but with my older son George.

Some time ago, George started messing around with the timer on the oven. This in itself is understandable for a boy with autism who likes to have everything just so. If you tell him that something will happen twenty minutes from now, he takes it very literally and makes sure he knows just when twenty minutes will be up. So he goes off and sets the timer on the oven.

This is a problem from a safety point of view. Not only does it mean that he is leaning over burners that may or may not be turned on, but the timer is controlled by the same buttons that are used to actually turn the oven on. There have been a couple of instances where George has accidentally set the oven temperature instead of the timer.

It is a fire hazard, and also a great inconvenience if I happen to have something in the oven and the temperature is suddenly not what  it should be.

We have been dealing with the timer-setting habit with as much sternness as you can employ with a kid with autism. Our “punishment” involves leading him to his room, and making him sit on his bed for a few minutes during which we completely ignore him. Negative reinforcement doesn’t really have an impact on him. It just makes him giggle. No reinforcement at all, however, makes him somewhat disconcerted and uncomfortable.

Anyway, a few weeks ago, my husband called out to me, “George set the timer!”

Without thinking, I replied, “Oh, f*ck.”

Yes, the children were within earshot. It was not my finest parenting moment.

We dealt with the situation as we usually do, and life went on.

Until this week, when George had one of his frequent bouts of echolalia.

For the uninitiated, echolalia is when a child with autism repeats something that he or she has heard, without regard for the context. It can be immediate, where the child repeats what has just been said moments ago, or delayed, where the words are repeated hours or days later.

This was a case of very delayed echolalia. About a month after my F-bomb, George suddenly said, “George set the timer! Oh, f*ck!”

And then giggled as if it was the funniest thing in the world.

And then said it again. And again, and again, and again.

As parents, of course, our instinct is to reprimand the child for saying such a word. And with typical kids, that’s fine. But for kids with autism, it’s a little more complicated. You can tell George until the cows come home, and he still won’t be able to distinguish the bad words from the normal words.

Since we make a big deal of any speech George comes up with in order to encourage him, our best defense is to simply ignore him when he says that word. But it’s so hard, and goes against the grain of what we believe to be “good” parenting.

In the meantime, we are getting George his very own timer – one that has proven very effective in the autism community. Hopefully, it will keep him away from the oven. It’s called a Time Timer, and it looks like this:

How do you deal with your kid coming out with swear words? Special needs parents: what are your strategies? I need them!

(Photo credit of “See, hear, speak no evil”: John Snape. This picture has a creative commons attribution license.)

(Photo credit of Time Timer: Spectrum Nasco)

 

Filed Under: autism, Children, Echolalia, F-Bombs, parenting, Profanity Tagged With: , , , , ,
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Band-Aids and Autism: How my Son Saved the Day

July 1, 2012 By

Several nights ago, right after lecturing my younger son James about keeping fingers away from sharp objects, I sliced my thumb open on the lid of a freshly opened can of tuna.

I made a run for the bathroom and held my profusely-bleeding hand over the sink while James trailed in saying, “Mommy, you really should learn to be more careful.”

I really should, indeed. I’m not at all sure how this even happened. What I do know is that the amount of blood was startling. It was a deep cut, right across the soft padded part of my thumb. I wasn’t really sure what to do about it. I had a full box of Band-Aids, but I didn’t think they would do a great job of stemming the flow. I was out of gauze pads, and George had surreptitiously used up all of my surgical tape to stick bits of paper to other bits of paper.

As I stood at the bathroom sink stupidly watching my blood go down the drain, George – eight years old and autistic – came in with the box of Band-Aids, that he had gotten out of the cupboard without anyone asking him to. He started unwrapping Band-Aids and wrapping them around my thumb. They were instantly getting soaked, but George kept at it, adding Band-Aids down the entire length of my thumb. Eventually, my thumb was trussed up in about twenty Band-Aids. It looked absolutely ridiculous, but the bleeding was contained.

George then added an extra-special touch: he took my hand, and lightly kissed my Band-Aided thumb.

It’s hard to say what aspect of this whole incident is most significant.

George, autism and all, responded immediately and appropriately to what he saw as an emergency. This child, who gets totally freaked out at the sight of blood, showed no more than a little bit of mild distress. He managed to stay completely calm as he bandaged me up. He quietly took charge of the situation in a way that astounded me. The kiss demonstrated tenderness and empathy – just the kind of bedside manner that someone with a fresh injury needs.

It makes me think that I should start teaching him First Aid. If this incident is anything to go by, George seems to have that instinct of calmly wanting to help when someone gets hurt. It could serve us well to empower him to help in situations like this, starting on a small scale, of course. I wouldn’t expect my eight-year-old to perform CPR, but if he had the tools to handle minor First Aid emergencies, that could be good not only for his potential patients, but for himself.

Do you think George’s response to this situation might be evidence of some instinct that he naturally has? What opportunities do you think might arise from this?

(Photo credit: http://www.flickr.com/photos/honan/3779689068/)

Filed Under: autism, Emergency, First Aid, Injury Tagged With: , , , , , , ,
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The Mathematics Of Brotherhood

June 28, 2012 By

2012-05-13_17.58.13

I am fortunate enough to have two children who travel well, at least by car. We have not yet experimented with air travel, but I have a feeling that once we got past the airport chaos and onto the plane, they would be fine. We are not quite ready for that, so for now we are sticking to the road trips.

Last weekend, we drove to Elkhart, Indiana. It’s a journey of about eight hours, which does not include time spent on the border crossing and any pit stops. We planned as well as we could, given that we only had a day in which to plan. I packed up stuff for an en route picnic, and made sure the boys had their favourite toys in the car with them. I even had my laptop handy in case I had to calm them down by playing DVD’s for them.

The drive down could not have gone better. The guy at the border cheerfully welcomed us into the United States, despite my six-year-old informing him that “Daddy always be’s crazy.” Shortly after crossing the border, we stopped for our picnic. Everyone had fun, and there were no complaints as we piled the kids back into the car for the remainder of the drive.

The drive home was a different story altogether. I wouldn’t say it was disastrous, exactly, but it was a little fraught with stress. It started with lost Lego. I wrote recently about George’s Lego, and how it can never, ever be lost.

Right before leaving the Elkhart city limits, we stopped for a leisurely dinner. We ate our food, paid and left. When we had been driving for about an hour, George suddenly started asking for his Lego. This surprised us, since we had assumed he had it with him. We pulled over and couldn’t find the Lego anywhere in the car. A phonecall to the restaurant confirmed that George had left it on the table.

There was no way we were going to force our child with autism to do without the object that is a big source of comfort to him – I mean, he sleeps with his Lego – so we drove back to Elkhart and got it. Disaster was averted and peace reigned once again.

But only for a little while.

By the time we embarked on our return journey, the kids were tired, cranky and overstimulated from a packed weekend. It is understandable that they didn’t feel like spending eight hours stuck in the car. I didn’t feel like spending eight hours stuck in the car.

With about five hours of the drive left to go, George started saying, “I want to go home. I want to be home in ten minutes.”

Well, in the absence of rocket launchers on the car, that wasn’t going to happen. We tried to talk George through his increasing anxiety. Even James, in his sweet way, was trying to comfort his brother.

“Don’t worry, George. We’ll be home tonight.”

Instead of calming down, George was getting more and more anxious, so we did what we always do when he needs to be distracted: we started throwing out math questions at him.

George loves numbers. He’s been able to count to 100 in a variety of increments since he was three, and he was doing multiplication in his head long before anyone taught it to him at school. When he’s asked a math question, he cannot resist answering it. It’s a marvellous way to reduce his stress.

James started playing along and pretty much took over. He was asking George one math question after another. What’s 8 plus 8? What’s 32 minus 7? What’s 5 times 5?

The math questions eventually morphed into nonsense questions. What’s cow plus water? What’s house plus airplane? What’s paper plus shoes?

Every time James asked one of these questions, he provided an equally nonsense answer. By the time this had been going on for a while, the kids were in fits of giggles. Come to think of it, me and my husband were too. It was hilarious.

Then James asked the following question: What’s James plus George?

We all looked at James, waiting for the answer. When it came, it brought tears to my eyes.

James plus George equals love.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Brothers, Elkhart, Indiana, Love, Math, Travel Tagged With: , , , , , ,
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Bedtime Toys: Finding The Lost Lego

June 21, 2012 By

Last night, my son George couldn’t find his Lego. This was a potentially disastrous situation: George has to  have certain things with him when he goes to bed, including a subset of his Mr. Potato Head collection and his stack of pink and yellow Legos. Gathering them up and putting into bed is part of the routine, and if anything goes missing, the entire routine – and subsequently everyone’s sleep – goes to hell in a handbasket.

So when the Lego went missing, the entire family embarked on a thorough, systematic search. Anyone looking at us would have thought we were trying to root out Saddam Hussein. The search included all rooms in the house, the backyard, the car, even the garage.

Eventually James found half of the Lego stack caught behind the treadmill. The other half had somehow ended up in the washing machine with some laundry. The crisis was averted, and before long, George was snuggled up in bed with his Lego and his Mr. Potato Heads.

It seems like a strange choice of sleeping companions. I’d always thought that kids liked teddy bears because they were soft and comfortable to hug, and for a long time, I assumed that George’s total lack of interest in plush toys was somehow related to his autism. Since then, I have realized that not all kids are into teddy bears, and that preference has nothing to do with autism or the lack thereof.

James went through a brief phase of having to sleep with every stuffed toy in the house. I would have to arrange them around him, and to an extent, on top of him, and I would always wonder if the furry friends would take up so much space that there would be no room left for the kid. It was an impractical arrangement because James is a restless sleeper, and one by one, the stuffed animals would be displaced. When I went to wake James up in the morning, his room would look like a plush toy factory had exploded in it.

It was at around this time that George started taking his Mr. Potato Heads to bed. He couldn’t possibly fit his whole collection in there, so he would pick out about ten of them, ensure that they had their arms and legs and other bits and pieces, and he would line them up neatly. There was a whole variety of them – plain old Mr. Potato Heads were mixed in with the likes of Darth Tater and Indiana Jones: Taters of the Lost Ark.

Taters of the Lost Ark was an interesting one: if you pushed down on his hat the Indiana Jones theme song would be played. This would happen when George rolled over onto this particular Potato Head in his sleep.

It’s a little disorienting to wake up at three in the morning to the sounds of the Indiana Jones theme song.

George’s choice of sleeping companions has not changed much since then, but James’ has. The stuffed toys have been relegated to a toy box, and James now sleeps with Finn McMissile (of Disney Cars fame), his Megatron (a member of his ever-expanding Transformers family) and a glow-in-the-dark skeleton.

From time to time, I will check on them after bedtime to find the pair of them in George’s bed with their respective toys. They’re hiding under the comforter with a flashlight on, playing companionably alongside each other. I pretend to reprimand them for not sleeping, and then I slip out of the room and let them play. Because really, who am I to interrupt their moments of brotherly togetherness?

Do your kids sleep with stuffed animals, or do they prefer other toys? How strict are you about separating play time from sleep time?

(Photo credit: http://www.flickr.com/photos/scazon/4207552952)

Filed Under: Bedtime, Children, sleep, Toys Tagged With: , , , , , , , , , , ,
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Autism Acceptance Does Not Mean Entitlement

June 14, 2012 By

 

Since my son George was diagnosed with autism five years ago, I have learned – to some extent, at least – how to field the rude comments of strangers and the blatant stares of their children. Through my writing and through daily interactions, I do what I can to educate and inform, to discourage people from discriminating against my child on the grounds that he is “different”. I strive for awareness and acceptance, and I work towards a world in which everyone accepts George for the wonderful, albeit a bit quirky, person that he is.

In this quest I am part of a not-so-secret society of autism parents who have a common goal. We post and share autism awareness messages on our Facebook walls. We circulate articles about what to say and what not to say to an autism parent, and we brainstorm ways to make things easier for our children. In all of this, our message to the world is this: Accept our children, include  them to the extent to which they are capable, and discover what wonderful people they are.

As passionate as I am about this cause, I do believe that if we’re not careful, we can take it too far. We can make the mistake of expecting the world to bend to our children no matter what, without making any effort to equip our children to live in the world.

During my afternoon commute from work, I regularly encounter a blind woman who has a service dog. When we get off the subway, we go to the same bus bay, although she doesn’t take the same bus as me. She waits patiently for her bus, politely asking people to let her know when her bus has arrived. She is so nice and charming, and people practically climb out of their own skins in their eagerness to assist her.

In contrast, there is a man during my morning commute on the subway who is confined to a wheelchair. He is rude and aggressive. He seems to be completely OK with literally pushing people out of the way in his efforts to be first onto the train when it arrives, and he acts as if he can behave as badly as he likes because he is disabled. People are not that inclined to help him and feed his sense of entitlement.

When George has meltdowns in public, there is often very little I can do about it, but that doesn’t stop me from trying. As I try to engage strategies to help him, I offer explanations of autism to anyone who might be nearby. Am I obligated to explain my son’s behaviour? Maybe not. But I do recognize that my son’s behaviour at those times can be disruptive and a little frightening to the people around us who cannot be expected to magically know that he has a invisible disability.

In the vast majority of cases, my explanations are met with smiles and nods of understanding. On the odd occasion, I have even received offers of help. Yes, there are always the people who tell me that I shouldn’t have my child out in public if he cannot control himself, or that my bad parenting is to blame, but there’s very little one can do about people with that kind of attitude.

The point is that the road to acceptance is a two-way street, with some effort required from both sides. It shouldn’t be all up to other people, who in many cases may not know how they’re supposed to act around someone with autism. The individual with autism (depending on the level of functioning) and his or her family should do their part to make things easier too.

When I was on the subway to work one morning, a girl of eleven or twelve boarded the train with her parents. With the sense that autism parents develop as an instinct, I knew that this girl had autism. She clearly had communication deficits, but she appeared to have a reasonable level of functioning in other ways. Since this was during the morning commute, there was standing room only on the train.

The girl lost it. Over and over, with increasing intensity, she screamed, “I want to sit down.”

Bear in mind that although I knew the girl had autism, in all likelihood the other passengers didn’t. Why would they? Autism is not a visible disability. To most of the people on the train, that girl was simply a brat acting out. Her parents did not offer any explanations, nor did they make any effort to stop the screaming or help their daughter.

As the screaming escalated to an ear-splitting “I! WANT! TO! SIT! DOWN!” a woman close to where I was standing gave up her seat to the girl, who instantly calmed down. No-one thanked the woman who had given up her seat: not the girl, and not her parents. The woman, quite justifiably, was annoyed. She said something to the girl’s mother about manners, and the girl’s mother made some obscure comeback about a commuter’s responsibility to give up their seat to people with disabilities. The woman shook her head in bafflement and moved towards the opposite end of the carriage.

I didn’t mind that the girl had started melting down over the lack of seats. People with autism do not have control over what triggers them.

However, I do mind that her parents expected everyone else to accommodate her without offering an explanation, and I mind even more that they allowed the situation to escalate without trying to help her. I believe that in their lack of action, they did a great disservice to the autism community.

The next time any of those commuters encounters a child having a meltdown in a public place, how understanding are they likely to be? Does this kind of thing not reinforce all of the negative stereotypes about autism that we are trying so hard to beat?

We (autism parents) spend a lot of time talking about how we wish people would accept our kids. But we cannot really expect someone to accept something when they don’t even realize there’s something to accept.

Is it acceptable for people to be rude and discriminatory towards individuals with autism? Absolutely not. That doesn’t mean, however, that everyone has an automatic obligation to cater to us and our children, no matter what, without a little bit of effort from our side.

We have to meet the world halfway on this one. Working with society, not against it, is ultimately what will build awareness, acceptance and inclusion.

(Photo credit: Kirsten Doyle)

Filed Under: Acceptance, autism, Discrimination, parenting, Society Tagged With: , , , , , , , , ,
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2012 Run For Autism: Starting The Journey

June 10, 2012 By

Many of you already know the story.

You already know how I was a runner way back when, and then stopped and completely neglected my physical health after the birth of my kids. You know how I always wanted to get back into running, but never found the discipline. You know how I became completely comfortable as a couch potato but never quite got rid of that residue of regret.

You also know how an email landed in my inbox one day that completely changed everything. The email was an invitation for me to join the team being put together by the Geneva Centre for Autism for the forthcoming Scotiabank Toronto Waterfront races. Participants could run the 5K, half-marathon or marathon, and in the process raise funds for services for children and youth with autism.

It turned out to be just the motivation I needed. Within 24 hours I had made the transition from couch potato to speed demon extremely slow runner. Six months later, I had dropped almost sixty pounds and I was standing exhausted but triumphant at a half-marathon finish line, clutching my finishers medal and sobbing with emotion.

Here I sit, three years later, getting ready to embark on training and fundraising for my fourth Run for Autism. Since that first half-marathon in 2009, most of the weight has stayed off, my half-marathon time has improved by almost ten minutes, and I have raised over $2000 for the Geneva Centre for Autism.

This year’s race is on October 14th. My fundraising goal is a cool thousand dollars. This means that for the next four months, I will be shamelessly asking people for money – friends and family, complete strangers, and everyone in between. The money will go towards supplies and services for children and youth with autism. These are services that can provide skills that will last a lifetime, enabling people like my son George to lead happy, productive lives as fully integrated members of their communities.

Some examples of what $1000 can do are as follows:

  • Art supplies for 40 children and young adults
  • Sports equipment for 20 children and young adults
  • Musical instruments for 15 children and young adults
  • Job training for 15 young adults
  • Field trips for 10 children and young adults
  • Summer camp for 4 children and young adults
  • 2 iPads loaded with apps for individuals with autism
  • 1 piece of state-of-the-art sensory equipment

This list goes to show that every single cent really does make a difference. If you have the ability to, please consider sponsoring my Run for Autism and contributing to this incredible cause for my child and for other people with autism.

To donate, please visit my fundraising page.

It takes a very special kind of village to raise a child with special needs. Today, I invite you to be a part of my village.

(Photo credit: Brightroom Professional Event Photographers)

Filed Under: autism, Autism Services, Finish Line, fundraising, Geneva Centre for Autism, Half-Marathon, running, Running for Autism, Scotiabank Toronto Waterfront Races Tagged With: , , , , , , , , , , , ,
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GUEST POST: It’s A Marathon, Not A Race

June 4, 2012 By

The first time I met Jennifer Krumins, she was having a fight with her laptop. She was slated to give a parent education presentation at George’s autism therapy centre, and she couldn’t get her technology to work. She endured some good-natured heckling from the front row (read: from my husband), got her PowerPoints to work, and went on to deliver a riveting presentation.

Jennifer is an autism parent, educator and author. She willingly shares her hard-earned wisdom for the benefit of parents who may be feeling a little overwhelmed by the whole special needs gig. Thanks to what I have learned from her, I have become somewhat good at advocating for my son in the school system without alienating anyone along the way. Whenever I start getting my annual IEP-related panic, I start posting stuff about it on Facebook in hopes that Jenn will respond with a gem of wisdom, and she always does.

Since the first time I met Jenn, I have attended more of her presentations and roped my mom into filling out a questionnaire for her book entitled Autism and the Grandparent Connection (which you really should read, even if you’re not a grandparent). We have become friends and we’re looking forward to having a drink together at this year’s autism symposium that Jenn will be presenting at.

Today, she tells us about her journey as an autism parent, and offers us some advice to help us along the way.

I don’t run marathons. I really admire people who do. I have some friends that train faithfully and test their endurance over the course of a few hours…by choice!

I am the parent of a sixteen year old boy with autism. Biggest marathon of my life. Yes, raising a child with autism is perhaps the supreme test of endurance. And yet, like many of my running friends, I would sign up to do it again because in my memory, the moments of success were far more remarkable than the moments of pain, exhaustion and heartbreak.

So what are the secrets of our successful marathon? Is it a medicated state of euphoria that I am experiencing….only to be rudely awakened by reality when the meds wear off?

No. I can honestly say that while the road has been long, harrowing at times and I have fallen on my butt on many an occasion…the journey has delivered far more emotional, intellectual, spiritual and social growth than our family could have dreamed.

The secrets have been revealed to me through fellow “autism marathoners,” trial and error, and most of all through the wisdom of children with autism (my own son and those students whom I have had the privilege to teach). I have learned some valuable tips to enrich the journey and increase endurance:

1. Instead of carb loading…try optimism loading. It’s very good for you and your child! Optimism is a way of looking at life and its inherent stresses. Being an optimistic person does not mean that one is always happy and peppy… it is that you choose to look for opportunity in the middle of adversity. Feed your brain with daily/hourly reminders that adversity is temporary, and that your child is making progress (even if it’s tiny steps). “Children learn what they live,” and as the adults in a child’s life it is our responsibility to model an attitude of positive persistence and hope. We can choose to believe that there is hope, meaning and joy within any given moment.

2. Take a long term approach to training. You would not be able to run your first marathon immediately after deciding to do so. You need to train. It’s the same thing with raising your child. Too often, we get stuck on a panic button in the early years. We may feel like we have to do it all right now in order to win the race against autism. It doesn’t work that way. Live in the present but plan for the future. Each day, each hour that you invest in being the kind of parent you want to be has a cumulative effect. In the long run, it is the lessons of perseverance, self- advocacy, and hope that will develop your child’s ability to be resilient and to ignite a sense of self- worth and self -confidence. Children learn by doing….by failing and trying again. They do not gain self- confidence when we tell them they can do it….and then we do it for them. The values you live by will be the greatest gift you give your child with autism….more than any treatment/intervention.

3. Visualize and rehearse the route. What are your long-term goals for your child? What do you envision for your child in the future? Design your plan so that you not at the mercy of someone’s map. Take the time to write down your thoughts on the following: What are my child’s strengths, skills, interests, challenges and limitations? What about my child gives me the most joy? What are my biggest fears or worries? What goals do I value for my child’s development? What specific behaviours, or other problems, have I observed? How did I react? What did I do in the situation? What could I do better next time, if anything? Have I recently noticed any changes in behaviour or ability? Be prepared to share what you know with those who are on the journey with you (even if you don’t like them). But remember, your plan must be in writing.

4. Talk with folks along the way, enjoy the course, smile often. The autism marathon is a social event. Too often we try to do it alone and we burn out. We need each other. We even need the people that drive us nuts because they keep us running; trying to learn more, be more and advocate more. Choose not to allow bitterness, resentment and hatred ruin the journey. We are the ones who suffer (as do our children) when we allow destructive feelings to shape us. Advocate one step at a time, one person at a time with patience and humility. The journey is much richer when we allow others to help. It is a sign of strength and selflessness to say, “Yes, I could use your help.”

5.  Set goals. Work to achieve them and stay focused on the things you want. Your life does not wait until you “fix” the autism. This is it. Treat your life as the gift it is. The time is now to take figure out what you will be living in the next five years (ten and twenty). Start with small steps towards those goals. Catch yourself if you are waiting to live your life. Perhaps, autism is in some way a vehicle for achieving those goals. Seize the time and model for your child what it looks like to live a goal directed life.

The marathon continues. There are more times of peace now…but never for too long. Struggle creates a rich environment for personal growth. Just set your eyes and heart on the target and keep putting one foot in front of the other.

To learn more about Jennifer and the books that she has written, check out Autism Aspirations.

(Photo credit: Jennifer Krumins)

Filed Under: autism, Coping Skills, Guest Posts, Jennifer Krumins, parenting, Special Needs Tagged With: , , , , , , , , , , ,
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