Archives for July 2011

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Teeth Behaving Badly

As I sit here early on a Sunday morning, my jaw is hurting, I have just taken more pain medication, and I feel as as I am getting a cold.

That’s probably no big surprise. My immune system has taken quite a hit over the last couple of days. Extra vitamins, Vitamin C, echinacea, and plenty of fluids and rest should do the trick.

Rest? Ha! Like that’ll happen!

The culprit of all of this grief is the dental surgery I had on Friday. It had been a long time coming. Due to my absolute phobia of dentists, plus the fact that the last dentist I went to made a complete botch-job in my mouth, I had put off seeing a dentist for almost seven years. When my husband finally dragged me in kicking and screaming 18 months ago, they did all kinds of X-rays and examinations, and then produced a list of the dental work that I needed.

The list went on for two pages.

Don’t worry, they said. We’ll sedate you and you won’t remember a thing.

The idea of being given lots of drugs to knock me into sweet oblivion was very appealing, but still. I got the heebie-jeebies every time I thought of spending an entire day at the mercy of a man who had chosen a career of digging in other peoples’ mouths.

So once again, I played the waiting game.

About two months ago, I got a nasty throat infection that put me out of action for a week. It was accompanied by a fever of over 102 degrees, and it made my entire body hurt. When I went to see the doctor, I was told that this infection more than likely originated from an infection in my gums.

And that was it. The game was up. I had no choice but to go to the dreaded dentist. Except when I went back this time, new problems had arisen. The two-page list was now two and a half pages.

An appointment was made to get the work done. I picked up pre-meds a few days ahead of time, and then waited in dreaded anticipation. On Thursday night, I took three heavy-duty sleeping pills as instructed. They knocked me out, and until four in the morning, I slept not like a baby, but like a person who doesn’t have a baby. At that point, I had to wake up to have coffee and toast, and then I went to sleep again for a couple of hours.

An hour before the appointment, I took another pill, and by the time I showed up there I was well and truly zonked out. I was actually seeing double.

I lay down in the dentist’s chair. A blood pressure cuff was placed around my arm. A heart rate monitor was attached to my finger, and an oxygen mask was put over my face. I was given more drugs to take, and then I was covered with a glorious soft blue blanket.

That’s the last thing I remember with any clarity. Technically, I was conscious throughout the day. I had to be, so I could obey instructions like “open wide” and “bite down”. But I was definitely somewhere off in La La Land.

After six hours or so, I was allowed to leave. I have a vague recollection of my husband being brought into the room to receive instructions, and then I taken out to the car. Apparently a wheelchair was involved. When I arrived home, my husband gently guided me to the couch in the living room, where I lay down and pretty much crashed. I was roused now and then to eat soup or drink Gatorade.

We will not discuss the dribbling that happened as I drank.

Now, it is two days post-dentist, and I’m doing kind of OK. The effects of the sedation took until sometime yesterday afternoon to wear off, but I still have some pain, particularly at the spot where they had to extract a tooth. Quite apart from the pain, I find it very disconcerting to have a gap where the tooth used to be, and I am really looking forward to being fitted with my temporary flipper. My teeth feel very weird from all the cleaning and scaling and whatever else they did.

And just think… a month from now I get to do it all again.

Oh, boy.

(Photo credit: http://www.flickr.com/photos/rightee/215391576/)

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Life And Death: No Laughing Matter

People are already making jokes about it.

The first news stories about the untimely death of 27-year-old musician Amy Winehouse started circulating less than an hour before I started writing this post. Within about ten minutes of me first hearing the news, fan pages started to pop up on Facebook.

Amy Winehouse is dead, at least theres enough drugs about for everyone now (with a smiley face emoticon at the end)

Police say that winehouse’s death was unexplained LOL, at that point they were probably stoned on the drugs in her <profanity>

Screw Amy Winehouse, she was a druggy and had death lined up for her

Amy Winehouse is dead…..HAHAHAHAHAHAHAHAHAH

Now, I don’t know much about Amy Winehouse. I don’t exactly fall into the demographic that stays up-to-date on popular music. However, I do know that she was insanely talented, even though her music wasn’t really to my taste. I know that she was plagued by substance abuse problems. I know that she was young and had a lot of life ahead of her, and that she had tons of potential within her.

I know that her death is unspeakably sad.

These jokes that are circulating, these fan pages that are being set up, and the derision with which some people are treating this story, is a sad statement about how people have become so desensitized to tragedy that they can have a good laugh about it before the deceased has even started to cool down.

Or maybe it’s nothing new. This is not the first time I’ve heard jokes about a tragedy soon after its occurrence: the space shuttle Challenger disaster, and the death of Mozambican president Samora Machel in a plane crash, both of which happened in 1986, are cases in point.

I wonder why this is, why there are people can make light of events like this. One theory is that they just don’t know how else to deal with news of tragedy. There is some credence to this idea, and I saw it in action on the day my father-in-law died. There was a mix-up that resulted in the wrong funeral home attempting to collect his body from the hospital, and when my mother-in-law heard about this, she made a joke about the funeral homes fighting over her husband’s dead body, and she laughed heartily. I believe that allowing a chink of humour into the day was a way for her to cope with the initial shock of being widowed after almost fifty years of marriage.

In the case of more widespread disasters, I believe that sometimes people make jokes simply because they don’t know how else to process the information.9/11. Hurricane Katrina. The tsunamis in Thailand and Japan. The Haiti earthquake.

Sometimes, though, people are just plain insensitive. They don’t feel any empathy either for the deceased or for the newly bereaved loved ones. Or  – and Amy Winehouse’s death is an example of this – they somehow rationalize that because the person lived in a certain way that they do not agree with, it is OK that he or she died.

Here’s my thought on all of this: Yes, Amy Winehouse was a celebrity – a colourful one with a controversial life, at that – and therefore her life was, to an extent, public property. And yes, she seems to have died in an Elvis-like manner that is bound to attract a lot of attention and speculation.

But above all, she was a human being with hopes and dreams and feelings and loved ones. The fact that she had substance abuse problems does not mean she deserved to die. It does not mean it is OK that she died. Her life – and her death – deserve the same respect as anyone else’s. Her family and friends should be able to grieve for their lost loved one without the world making public fun of it all.

I hope against hope that we as a society can somehow regain some of the humanity and compassion that seems to have eroded.

(Photo credit: http://www.flickr.com/photos/ups/2066092204/)

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Getting Into Hot Water

Just over two weeks ago, our water heater broke.

For reasons that I will not bore you with because it’s a long story, we are still living without hot water. A family of four plus a mother-in-law. The family of four includes two children who have a close one-on-one relationship with mud.

Bath time takes twice as long as it used to. Instead of simply running the bath for the kids, we have to dump buckets of cold water into the tub, and boil huge pots of water on the stovetop that then get added to the cold water so that the kids won’t go into shock when they get in.

What’s that you’re asking? Oh, why don’t we just run cold water from the tap? Because for whatever reason, the lack of water in the hot water tank has completely messed up the water pressure on the tap in the bathroom.

On the one hand, I am glad this did not happen in the middle of winter. Because then, heating the bath water to a bearable level would take three times as long. On the other hand, though, in winter you can get away with taking fewer baths. During the dog days of summer, however, when the temperatures are well over a hundred degrees, regular baths are kind of important.

The baths just take care of the kids. Gerard has a shower in his shop, and I have to traipse off the gym in order to avoid being one of The Unwashed. My mother-in-law goes to her sister’s house.

Once everyone is clean, we then have to deal with the dishes. Running the dishwasher is out of the question because it wouldn’t do the job very well, and because it’s not even connected to the cold water anyway. So dishes have to be washed by hand, and kettles full of boiling water keep having to be added to the water in the kitchen sink. Instead of taking ten minutes to clear the dishwasher and reload it, I am now having to spend up to an hour on this nonsense.

How on earth did people five hundred years ago get anything done?

Well. While the men were out conquering whatever they were conquering, the women were staying home and taking care of it all. It’s not like they had to spend two hours a day on the subway getting to and from a full-time job at the office. And besides, avoiding body odour wasn’t such an issue with them. They had annual baths every July, and the entire village shared a single tub of water for the occasion.

Apparently – apparently – our hot water will be reinstated within two or three days. I’ll believe it when I see it.

In the meantime, I just have to make the most of what I have. And drink wine to stop myself from going completely round the bend.

(Photo credit: http://www.flickr.com/photos/dustpuppy/5371295/)

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Why Autism?

“Why do you think he has autism?”

This question is posed to me quite a lot by friends and strangers alike, people who for the most part intend no malice, but are genuinely curious about the origins of George’s autism.

That they are asking the question at all is something that I see as a positive sign. It tells me that increasingly, people are wanting to be educated about autism instead of blindly believing every tidbit of information – right or wrong – that is thrown their way.

Over the years, I have done research on a variety of theories.

Was it vaccines? No, I don’t believe it was. Deep down, I knew from the time George was a tiny baby that he was not on the trajectory of “typical” development. I don’t buy into the dietary theory either, for the same reason. George was exclusively breast-fed for four months, and by then I was seeing some little signs that something was not quite right.

No, whatever happened within George’s brain to result in his autism, it was a done deal by the time he came out of the womb.

Even with that knowledge, the title of Primary Cause is wide open. I have read a couple of recent studies suggesting that environmental factors in utero could have more of an effect than previously believed. As if moms of children with autism didn’t have enough guilt on their shoulders already. But that is neither here nor there.

When I was expecting George, I did everything that was considered by pregnancy gurus to be “right”. I ate lots of leafy greens and took my prenatal vitamins every day. I ate lean protein and avoided foods with a high fat content. Accustomed to eggs “over easy”, I ensured that my eggs were fully cooked, and I did not touch deli meat or anything else that could be a potential listeria risk. I did not touch a drop of alcohol, I stayed away from places where I might be exposed to second-hand smoke, and my body pretty much bullied me (through the magic of the laughably known “morning sickness”) into kicking caffeine to the kerb. I went to all of my OB/GYN appointments and followed the advice of my doctor. I did not take so much as a headache pill through my entire pregnancy. The only tablets going into my mouth were vitamins and Tums.

I don’t think I could have created a better environment for my baby if you had paid me a million bucks. Of course, there is the possibility that fifty years from now, someone will prove that some obscure enzyme in, say, oranges, has been linked to autism. But I think it is safe to say that the prenatal environment is an unlikely candidate for the cause of George’s autism.

Leaving aside other environmental factors like air pollution, there are two other possibilities: genetics, or the circumstances surrounding the birth itself. Or maybe a combination of the two.

When I was a child, I was developmentally delayed. I didn’t talk until I was five, and I had some motor skill delays. My body was physically capable of doing anything my peers could do, but the communication between my brain and my muscles was out of synch. It was clear – especially in the early years – that I had some kind of learning disability, although I was never formally diagnosed with anything. As I navigated my way through childhood and adolescence, I was able to compensate for my learning difficulties by simply thinking in a different way and leveraging areas that I was strong in. But as my academic performance got better and better, my social awkwardness and anxiety among people became more and more apparent.

To this day, I suffer from social anxiety, although in general, I have found ways to adapt and mask it so that people don’t really notice. I’m not so much a stickler for routine, but once plans are made I get very uncomfortable – almost panicky and kind of, well, spectrummy – if they are changed. Although I am now fully verbal – sometimes, downright talkative – there are times, usually when I’m stressed – when I lose the ability to communicate through speech. It’s as if the words get lost somewhere between my brain and my mouth.

Am I on the autism spectrum? I don’t know. I have never been for screening, and frankly, I don’t really see the point. But if I were to learn that I have Aspergers, I would not a bit surprised. When I look at the way George has evolved through his early childhood, and the way he is at this point in his life, I do see a lot of parallels with my own early years. So, genetics? It’s a strong possibility.

The other possibility is that something happened to George’s brain while he was being born. For the most part, my labour was pretty standard. Everything happened more or less when the Medicals said it would. When I was in the thick of contractions, I heard someone use the word “textbook”. When the time came to push, though, the going suddenly got a lot tougher. Even though the baby was perfectly positioned for birth, no matter how hard I pushed, nothing budged. The Medicals kept telling me to push harder, push harder, but I just couldn’t do it. After what felt like an eternity but was probably only a couple of minutes, the Medicals gave me an episiotomy (if you don’t know what that is, look it up, because I ain’t describing it here). Once that was done, I gave one more almighty push, and an eternal second later, I was rewarded by the sound of a baby crying.

Here’s the thing, though. While I was pushing to no avail, the baby’s heartbeat – usually in a range of 130-150 beats per minute – dipped to below 40 beats per minute. Only for a couple of seconds, mind. Like a momentary blip in the radar. But could those couple of seconds have been enough to alter the wiring in my baby’s brain?

In the end, I suppose it doesn’t really matter. George has autism, and knowing the cause with crystal clarity would not change that.

No matter what the cause, George has autism, and I love every inch of him for who he is.

(Photo credit: http://www.flickr.com/photos/macbeck/4146730230/)

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Sleep Interrupted

Sleep – or lack thereof – has been a big issue in my life lately. I’ve never really been one to sleep for long stretches, and particularly since entering the world of motherhood, I consider six hours to be a good night’s sleep. But these days, even getting that amount of shut-eye is a challenge. There are a number of reasons for the recent sleep deficit, ranging from a run of kids’  tummy bugs to the fact that I’m an occasional insomniac.

Saturday night was particularly brutal. I went to bed early enough, because I was planning a long run early on Sunday morning. The kids were asleep, and James, who had been afflicted with a tummy bug, seemed to be on the mend.

At about midnight, when I had barely been asleep for half an hour, I woke to the sound of James crying his little heart out. My husband and I went to investigate, only to discover that the poor child had had a tummy-bug related accident. I whisked James off to the bathroom to clean him up and comfort him; my husband took care of changing the sheets and throwing soiled sheets and pajamas into the washing machine. James, bless his precious little soul, kept apologizing, even though I assured him that it was OK.

We got James settled and went back to bed. By the time I got back to sleep it was well after 1:00 a.m. A couple of hours later, I was roused to consciousness by a light tugging at my arm. I squinted in the darkness and saw James standing beside my bed. He took my hand, wordlessly led me to his bed, and plaintively asked me to stay with him. How could I refuse, right? So I climbed in and got settled, and James promptly threw up all over me.

As quietly as I could, I got James and myself cleaned up, threw yet another load of sheets and PJ’s into the washing machine, and having run of clean sheets, settled the two of us on the futon in our living room.

We went to sleep, and until about 4:00 a.m., I slept the sleep of the just.

At that point, George started to feel lonely, so he abandoned his bed and went in search of me. His first stop was my own bed, where he apparently found his Dad alone, and woke him up just to say, in a tone riddled with indignation, “You’re not Mommy.” Then he found me on the futon and squeezed in beside me.

There is not enough room on the futon for me and two long, lanky kids, both of whom sleep splayed out like starfish. But my discomfort was outweighed by the fact that I had my boys, one on either side of me. And so I (sleeplessly) passed the rest of the witching hours squished between my two gently snoring kids, with elbows and knees poking into my back, and my head bent at an uncomfortable angle.

Eventually, I gave up on the idea of sleep. I made coffee and drank some, and then, with my body screaming in protest, I went out for a 12km run.

It was not a good run, except in the sense that I actually finished it. By seven in the morning it was already scorching hot, I was not properly hydrated and above all, my body was utterly exhausted.

And because I love being there for my kids whenever they need me, at any time of the day or night, I wouldn’t have had it any other way.

(Photo credit: http://www.flickr.com/photos/doortoriver/2903845014/)

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The Cow Whisperer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Treadmill Running: Better Than Nothing

Today, for the first time in many months, I came face to face with the treadmill at the gym.

Anyone who’s read my previous posts about treadmills will know exactly how I feel about them. For those who haven’t, I will merely say that I’m not a fan of the lab-rat machines, but regard them as a necessary evil. There are times when road running is just not possible, and running on the treadmill is better than not running at all.

Over the last few months, when I have had to run on the treadmill, I have used the one at home. It sat gathering dust for a few years after my younger son, then aged two,  put his hand onto the treadmill while it was moving, and took off the top few layers of skin. He is now old enough to respect the treadmill, and he knows to stay well away from it.

Treadmill running at home is marginally better than treadmill running at the gym. For a start, my home treadmill has a natural incline to it, so even on its “flat” setting I can simulate outdoor running reasonably well. And in addition, I can watch what I want on the TV without having to plug headphones into a weird little box that may or may not work. So the home treadmill has been a reasonable enough stand-in for “real” running on occasions when I’ve had no-one to watch the kids.

I was supposed to do a tempo run yesterday morning, which under normal circumstances wouldn’t have been a problem. The only thing is that when I do morning runs during the workweek, I have to get out early. I have to be awake by 5:00, outside waiting for my GPS watch to get a signal by 5:10, and running by 5:15. I have discovered that running on less than six hours of sleep makes me feel sick (unless I am racing: I can race on virtually no sleep at all, but racing has its own special set of rules), so I have to be asleep by 11:00 the night before an early morning run.

The night before last, we were having a whole lot of things happening at home. No hot water. Kids refusing to settle. A visit from my accountant. A dryer that wasn’t drying properly, resulting in me having to put each load through the cycle twice.

I did not get to bed until shortly after midnight, and by then my husband and I were so wound up that neither of us could sleep, so we talked until the wee hours of the morning. I did not get to sleep until well after 1:00 in the morning.

There was no way I could run when I woke up. I felt nauseous when my alarm clock went off, and that was before I’d gotten out of bed, never mind attempted to actually run anywhere.

But runners can be flexible, so I decided that it was no problem. I would just move yesterday’s run to this morning, and tomorrow’s run to Friday.

Last night – or should I say this morning – I got to sleep at about 2:30. Fannnnnnn-tastic.

When my alarm went off this morning, I got up, thinking that maybe I should just bite the bullet and run. But as I got up, I felt light-headed. I actually swooned, like they did in eighteenth century novels.

I was left with no choice. Either skip the run entirely (Scandal! How could I even think that!), or I could put in time on the treadmill at the gym at lunchtime. Like I said before, treadmill running is better than not running at all, so the gym it was. I stuck my headphones in my ears and turned on the music, set my training watch, and programmed the treadmill for a 45 minute hill workout.

It was good. I mean, as good as a treadmill run can be. My legs felt strong, my heart rate – inexplicably – stayed in the 150-155 range despite the fact that I was running quite intensely, and I actually kind of enjoyed it. I’m not suggesting that I am going to make treadmill running a regular part of my program, I’m just saying that it’s not always so bad.

So my scheduled run was finally done – albeit a day and a half late – and I have taken another baby step towards my goal of shattering last year’s time for the Autism Run.

And I feel a sense of accomplishment that has me grinning like a village idiot.

(Photo credit: http://www.flickr.com/photos/mahidoodi/199747855/)

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95 Days And 6 Hours

95 days and 6 hours to go…

In 95 days and 6 hours, my heart will be racing and my adrenaline will be pumping.  I will be filled with nervous energy, and all of my senses will be on high alert, even though I probably will not have slept for a week.

In 95 days and 6 hours, I will be one of 20,000 runners waiting for the starters gun to go off, signalling the beginning of the Scotiabank Toronto Waterfront Marathon and Half-Marathon.

In 95 days and 6 hours, I will start my Run for Autism – the race that I do for my son George, who is my inspiration and my reason for running. My son, who has taught me so much about myself, about life, about the things that really matter. My son, who I love so much that I sometimes think my heart will explode.

Up until now, I have had a poor season of training. A variety of illnesses, extreme weather conditions and family emergencies has conspired against me. Not to mention the not-so-small matter of getting married. I did succeed in running an 8km race in the Spring, but I have had to blow off not one but two half-marathons since then, because I have just not been ready for them. I have tried to follow some kind of regular training regimen, and I have been running just enough to keep up some kind of conditioning, but my training has been very much a stop-start kind of thing.

Until now.

Over the weekend, I gathered together pen and paper, the list of races I am registered for between now and my Autism Run, and my calendar. Thus armed, I plotted out a training program, a path to get me from here to there. It is a program that will work. By the time I’m done, I will be able to run the distance and run it well, as long as I stick with it.

My impediment is not lack of discipline. If I have a run scheduled, there are very few things that will deter me. From time to time I may have to shift a run to another time, or even to the following day, but if my schedule tells me to run, then I will run.

The only thing stopping me – barring unforeseen emergencies – is my health. It hasn’t been so great lately. I have been tired, run down, and prone to getting sick. Conventional running wisdom dictates that it is safe to run with a cold as long as all symptoms are above the neck, but practical experience has taught me that it is not a good idea. It might be perfectly safe, but it knocks my immune system down a few notches so that it takes me longer to recover.

So the way I see it, the one thing standing between me and my ability to totally rock this year’s race is my health. If my health is good, my training will take care of itself.

With that in mind, I have a plan. This is all stuff that I really should be doing anyway, but if planning it is what it will take, then so be it.

Here are some promises that I am making to myself (and we all know that it’s wrong to break a promise, regardless of who it’s made to):

I promise that I will hydrate myself properly, and not only during my training runs. And not only with coffee.

I promise that I will take my vitamins every day, because I definitely feel healthier when I do.

I promise that I will see a nutritionist, because my diet is one area where my self-control goes to the birds.

I promise that I will try harder (and “try” is the best I can do at this point) to get more sleep so that I am not literally running on the smell of an oil rag.

Four promises. Anyone can keep four promises, right? And they’re not even hard promises, with the possible exception of the last one.

I can do this. I can totally do this.

In 95 days and 6 hours, I will be ready.

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Lucky Number Six

Being a parent is hard. You have to deal with conflicts, challenges, lack of sleep, lack of privacy, loss of self-identity, turmoil, guilt, worry, heartache, tears, and the reality of never being able to eat a full meal without interruption. And that’s just with a regular kid.

When you add autism into the mix, you also add the sensory challenges, meltdowns, communication issues, various other autism-related challenges, guilt piled on you by the media and other parents because you chose to vaccinate your child, and uncomfortable stares and rude comments from strangers in grocery stores.

All parents need a break sometimes. Especially parents of children with autism or other special needs. We love our kids, and recognize that in order to be better for them, we need to take care of ourselves.

This is why God created respite workers, and for some lucky parents, the funding to pay for them.

Our respite worker adventures are in their fourth year. In that time, we have gone through five workers, and we have just started on our sixth.

Our first worker was fantastic. We found her at the daycare George went to. She was his favourite teacher there. And so, when she left the daycare and asked us if we would like her to do respite work with George, we jumped at it. Both of the kids loved her, and George eagerly anticipated his times with her. After two years with us, she called me with the news that she had suffered a relapse of breast cancer and needed to take time out to focus on her health. We were sad to see her go, but we completely understood.

After a search of about three months, we found a new respite worker. George took to her right away. She was organized but creative, firm but kindly. She engaged George in a very positive way. She was a lovely, lovely person, and we could tell that she had a gift for working with special needs children. Unfortunately for us, one of the therapy centres recognized the same gift in her, and hired her full-time as an instructor/therapist. She gave us plenty of notice, so that we could find a replacement before she left.

Respite worker #3 was easy enough to find. On paper she looked great. Lots of experience with special needs kids, working towards an early childhood education qualification, and sister to someone with autism. We thought this woman had it all, right down to the personal experience with her own brother.

She turned out to be spiteful and vindictive. She lasted for precisely two sessions, one of which had been a handover session with Respite worker #2.

On to Respite worker #4. We found her through an ad we placed in a local newspaper. She came for an interview, and seemed to interact well with George. We liked her, we hired her, and she agreed to start the following week. Unbeknownst to us, though, she had been actively seeking full-time employment and got offered a job a couple of days before she was due to start with us.

At this point, I was ready to throw up my hands in despair. Good respite workers – the ones who are good at what they do, are nice people, and stick around for longer than it takes to make a cup of coffee – are like gold dust.

I placed another ad, and got a number of responses. We settled on a very nice, down-to-earth lady. When she came for the interview, she produced a binder containing her resume, police clearance, references, and various CPR and First Aid certificates. The details that impressed me on her resume were that she had been with one of her respite families for about ten years, and the other one for even longer. This woman had a history of staying with her families, and she even spoke about the benefits of building a long-term relationship with the child. We liked her, we hired her. She started the following week.

And then, as fate would have it, a close family member of hers was seriously injured in an accident, and another close family member had a heart attack and needed bypass surgery. Our new respite worker had to temporarily suspend work so she could take care of her family. After a break of a month or so, she came back, but that only lasted for two weeks. One of her family members relapsed, and she had to take time off again. She stopped replying to my texts and returning calls, and as nice and all as she was, I had to make the decision to cut her loose.

And now, as of yesterday, we have started with Respite worker #6. I am hesitant to make any sweeping statements at this point, but she seems to have been dropped into our laps by the smiling gods of fate. She has been a student volunteer in George’s classroom for the last two years. She knows him, and she seems to like him. He seems to like her.

I am really hoping she will be our Lucky Number Six.

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Not Autistic Enough?

Apparently, my son is not autistic enough to qualify for television documentary stardom.

Several months ago, we were approached by the producers of a television documentary series. They were planning a program about whether or not there was some kind of environmental link to autism, and they wanted to get footage of families living with autism. I exchanged a few emails with the producers, and eventually they came to our home to meet us and see George.

We were perfectly happy to be a part of this. We are strong on autism advocacy and awareness, and we take any opportunity we can to help spread the word about the realities of autism – both the challenges faced and the potential for achievement.

When the producers came to see us, something about their approach to the conversation raised a red flag to us. We got the sense that they were trying to push one side of a particular autism debate without giving any airtime to the other side. What the debate is and what side of the fence we fell on is not relevant. Our issue was with the integrity of the whole thing. It just seemed to us that the agenda behind this documentary was to sensationalize an aspect of autism.

But we kept an open mind. Maybe we were reading this wrong, and just needed more context. After the meeting, we sent the producers on their way and waited for them to get in touch with us.

About three weeks passed with no contact apart from a couple of basic “we’ll be in touch soon” emails. Eventually, I got a message from one of the producers, telling us that George was “not autistic enough” to be included in the program. Apparently, they were looking for a child with very severe autism – one who is completely non-verbal and very low-functioning – so that they could better “demonstrate the challenges of a typical autism family.”

Herein lies my issue: there is no such thing as a “typical autism family”. Autism manifests in so many different ways. There are kids who are fully verbal but go into meltdown when someone tries to touch them. Then there are kids – like my George – who hardly talk at all, but who love to be hugged and cuddled. Some kids are academically sound and socially weak, others have some social skills but do not perform academically. There are kids who excel in math, music, art, or any number of other things, and there are some who don’t. There are the kids with sensory processing issues and the kids without. There are so many elements of autism, and they can be combined in an infinite number of ways, with varying degrees of intensity.

With all of this variation, how can a couple of producers, neither of whom has had any prior personal experience with autism, talk about a “typical autism family”? Every family with a child autism has its own very unique, individual challenges to deal with, and I worry about the media showing only one side of it and calling it “typical”. That, to me, is disrespectful and unfair to the vast majority who are not represented.

The way I see it, our initial reservations had merit: the producers want to sensationalize autism. They want to show only the negative, challenging, heartbreaking aspects of it, and give no airtime to the possibilities, the potential, and the idea that people with autism can and do make valuable contributions to society. They want to profile a theory – a theory, mind you – about what might cause autism in some kids – and present it as something that is relevant to all kids.

I don’t think this kind of reporting does any favours to anyone. Not the families who have to live with autism. Not the public, who are not being informed about autism in a fair, unbiased way. And certainly not the kids themselves, who are being portrayed in a way that is only accurate for a few of them.

I am quite happy for my family to not be the vehicle for that kind of media sensationalism.

(Photo credit: http://www.flickr.com/photos/16961193@N06/2887772100/)