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Autism Meltdowns: Six Strategies For Helping Siblings

It is a scenario that parents of children with autism are confronted with countless times: the child melts down for no apparent reason while his or her brother or sister stands by helplessly, not understanding what is going on. Autism meltdowns can be particularly bewildering for younger siblings who may not fully understand what autism is or why the meltdown is happening.

The strategies that I am describing today are based purely on my own experiences. I did not read them on the Internet or get them from any parenting books. I learned these in the best way possible: from the School of Hard Knocks.

1. When a child with autism starts having a meltdown, the primary concern should be for everyone’s physical safety. The child is going to lash out wildly, hitting or kicking whatever or whoever he comes into contact with. He may run around with no real direction and bang his head on objects or people. Children going through an autism meltdown seem to have superhuman strength, and there could be a real threat to siblings who are standing too close. Therefore it is imperative to ensure the safety of the siblings as early as possible in the incident. This can be accomplished by taking them to a different room and making sure they have enough toys or books to see them through for what could be a couple of hours.

2. Siblings should never be punished while a meltdown is happening. This may seem intuitive, but it can be really easy to fall into the trap of yelling at siblings who happen to get too close while the parent is trying to deal with the autistic child. We are, after all, only human. If a child wanders up during a critical moment, we can have a knee-jerk reaction to yell, “Get away!” or “Go to your room!”  Doing this may make the sibling feel that he is somehow responsible, and that is not a burden any child should carry. A better strategy would be to ask the child to leave the room, promising that you will go to them as soon as their brother or sister is OK.

3. Recognize that the siblings are not only bewildered and confused by what is happening, they are also in all probability deeply concerned about their brother or sister. In the scenario described above, where the sibling is getting too close, it may be helpful to verbally acknowledge this. Tell the sibling that you know how scary this is for them, that you know they are worried. This simple strategy will validate their feelings and give them permission to feel the way they feel, and it can go a long way to helping them weather the storm.

4. When the meltdown is over, take the time to explain to the siblings what just happened. Talk to them about autism and how children affected by it sometimes have difficulty processing emotions or sensory overload. It is fairly common for siblings to start apologizing in the aftermath, worrying that something they did caused the explosion. They have to be reassured that this was not their fault.

5. More often than not, the sibling is going to need some post-meltdown reassurance that their brother or sister is OK. Bear in mind that they have just been witnesses to an extremely intense melting pot of emotion. They may want to see or talk to their brother or sister. Exercise caution, because meltdowns that have passed can flare up again, but is important for you allow (but not force) interaction between your children.

6. Reserve some time to spend exclusively with your autistic child’s sibling. It can be tough, being brother or sister to a child with autism. There are many times when the needs of the typically developing children are sidelined because of the special needs of their sibling. Meltdowns definitely fall into this category. Because of the nature of these explosions, parents have no choice but to mostly ignore one child so they can focus on the safety of another. When the meltdown is over – be it immediately or later in the day – that time should be given back to the sibling without autism. Read to your child, watch his favourite DVD with him, let him choose a game to play, or simply spend time snuggling with him.

Managing meltdowns involves so much more than taking care of the child with autism. We have to consider our typically developing children as well. Even though they don’t have autism, they are still children, and they look to us to protect and reassure them. Using these strategies consistently can help them develop their coping skills and enhance their relationship with their autistic brother or sister.

Do you have any tips to add to my list? Please leave them in the comments!

(Photo credit: http://www.flickr.com/photos/nicolesfromtheheart/4290444513. This picture has a creative commons attribution license.)

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The Angst Of Back-To-School Shopping

I’m a last-minute shopping kind of girl. Despite my annual promises to the contrary, I am still running around doing Christmas shopping at noon on Christmas Eve. While my husband greets family members as they arrive for our annual Christmas Eve dinner, I am upstairs frantically wrapping presents.

When it’s back-to-school time, I put myself through a variation of the same thing. It would make far too much sense to get the necessary shopping done early in the summer, when the stores are less crowded and the people are less manic. But instead, there I am, the day before Labour Day, scrambling to get shoes and backpacks for the kids. The only reason I don’t do my shopping on Labour Day itself is that nothing is open.

You’d think I’d know better. You’d think that I, special needs Mom, would take reasonable endeavours not to expose my autistic son to last-minute crowds of frenzied children and their equally frenzied parents.

But no. Try as I might, I just cannot seem to get myself into the stores until I absolutely have to. Either I have some kind of illness or I thrive on the pressure of last-minute shopping.

It therefore comes as no surprise that I found myself and my two boys in a shoe store on Sunday afternoon, along with every other family in the Greater Toronto Area. The kids’ feet were measured without incident, and then we started browsing the aisles for shoes that would fit them.

I started with George, just because the display of shoes his size happened to be right where we were standing. Initially, I had trouble distracting him from the girls’ display, where he had seen shoes with castles on them. Once I got him looking in the right direction, he picked out a pair of shoes that he wanted to try on. He put them on, and then, in a moment of verbal clarity that was utterly astonishing, he said, “The shoes are too small.”

While internally celebrating the fact that he had clearly verbalized a problem instead of simply melting down, I found the same shoes in the next size up. They fit, and George was happy.

While all of this was going on, James was walking down the aisle, removing shoes from their boxes and leaving them on the floor. My stern warning looks morphed into verbal reprimands that gradually increased in intensity and desperation. James’ innocent explanations that he was “just looking” did nothing to dissipate the cloud of dark thunder that was slowly but surely gathering above my head.

I succeeded in getting him to stop and put all of the shoes back in their boxes by threatening to take away his Bumblebee Car. He did, of course, cry and loudly declare me to be a Mean Mommy, but there you go. Sometimes a Mom’s gotta do what a Mom’s gotta do.

James ceased and desisted from crying when I told him it was his turn to pick out shoes. All of a sudden, I was the best mommy ever and he loved me “all the way up to space”. The Plight Of The Bumblebee was forgotten.

As we waded through masses of squiggly kids, I held firmly onto George’s hand. He was not having a meltdown, but he was visibly restless, and I could tell that he was itching to make a dash for it.

James picked out a pair of Lightning McQueen shoes and tried them on. I let go of George for a moment to help James with the Velcro strap, and just like that, George had taken off at the speed of light. Yelling at an assistant to keep an eye on James, I took off after my firstborn, dodging and leaping acrobatically over children. I flew after George into the stockroom as startled assistants looked up from their stockroom tasks. I finally caught up with him at the end of the stockroom. He only knocked down two large piles of shoeboxes. I crouched down and started picking up the shoes, but a kindly man with an Irish accent waved away my efforts and said he would take care of it. I apologized for the extra work we had caused, and he gently said, “Looks like you’re the one with the work, love”. He added that I should go and get myself a lovely cup of tea.

He was a nice, nice man.

Fortunately, James was sitting exactly where I had left him, and the Lightning McQueen shoes met with his approval. We paid for our purchases and left.

Calm gradually returned, and later that night, I took the advice of the kindly Irishman. Except instead of tea, I had wine.

Next year, I will do my back-to-school shopping at the beginning of summer.

(Photo credit: http://www.flickr.com/photos/8136496@N05/3900289380/. This picture has a creative commons attribution license.)

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Autism: Running To A Better Future

Running in the 2010 event - I want this one to be even better!

Six weeks to go…

As of today, I have precisely six weeks to do two things: first, to get myself into good enough physical shape to put in a half-decent showing at a half-marathon, and second, to raise a thousand bucks.

On October 16th, I will be participating in my third annual Run For Autism. I am joining the Charity Challenge at the Scotiabank Toronto Waterfront Marathon/Half-Marathon/5K. I will be running the half-marathon, any funds I can raise in sponsorships or donations will go directly to the Geneva Centre for Autism.

My stated goal on my fundraising page is $500, but I am really hoping to raise at least $1000.

There’s just one problem: I’m not really pushy enough to be a good fundraiser. I suffer from social anxiety, and I have a hard enough time talking to people about things in general. When I have the added pressure of asking for money, that makes things so much harder. So usually I send out fundraising emails to people who I think might be receptive to the idea of forking out a few dollars. While my fundraising efforts have, in the past, had reasonable enough results, I cannot help thinking that I would be better at this if I was just a different kind of person.

This year, I am trying to be more pushy assertive about making my sponsorship requests. I have sent out my fundraising email to people I actually know, and now I am appealing to you, the general Internet public, to consider sponsoring me for this run.

I would appreciate, and so would the children and youth with autism who would benefit from expanded services – services that can be a crucial part in helping people with autism become integral, economically active parts of their communities.

My son George, who is almost eight, would appreciate it. He has an entire future ahead of him, and the quality of that future could have a lot to do with the services he has access to now.

To sponsor me, please visit my fundraising page.

(That wasn’t too pushy, was it?)

(Photo credit to the author)

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Autism Meltdown: Surviving The Storm

It all started when I turned on the light in the kitchen. My almost-eight-year-old son George sidled up to me and, as usual, said, “Turn off the light soon.”

George hates the overhead light in the kitchen, and whenever it is turned on, he glues himself to my side and repeatedly tells me to turn it off, like a stuck record. I am so used to this that I barely notice it anymore. I just carry on with whatever I need to do, which last night included unpacking and reloading the dishwasher.

Uh oh. The dishwasher. This is another source of extreme discomfort for George. He gets very anxious when it is open, and like a record stuck on a different track, he tells me over and over again to “put it back soon”.

This – the combination of the light and the dishwasher – was a precursor to the explosion that would happen later in the evening.

I was probably not helping, at least, not at that point. I was in an agitated state of mind, having just come home from a stressful workday. I was multitasking too much, juggling about six tasks simultaneously, and getting stressed because neither of the kids would eat their dinner. I was frazzled and fraught. There is no other way to put it.

The explosion gradually built up throughout the evening, and finally erupted when George turned on the kitchen tap and found the water hotter than he expected. He screamed in outrage and started running around in a panic. I caught him, and using an expertise borne of experience, I used my body to restrain him from thrashing around and hurting himself.

I determined that he was not burned or injured, and sat there wrapped around him while he screamed. And screamed and screamed.

It has been a while since George had a meltdown this bad, but I knew that there was not a thing I could do to diffuse it. This was going to last for as long as it lasted, and we were just going to have to ride it out. Fortunately, my husband was home, so I had someone to tag-team with. One of us would stay with George, while the other would comfort our younger son James, for whom these meltdowns can be mysterious and frightening. Every thirty minutes or so, we would switch kids. Anything else that either of us had planned for the evening was abandoned.

After two hours or so, George finally started winding down. My husband and I cautiously allowed ourselves to breathe. He went back to the work he had been doing on his computer, and I went into the kitchen and made a cup of tea. I got the kids into their pajamas and gave them their bedtime milk. Because they were both still unsettled, I allowed them to chill out on the couch for a while before going to bed.

The period of relative calm turned out to be the eye of the storm.

The dishwasher had been running in the background without anyone paying attention to it. George, with his super-sensitive ears, heard the quiet click that heralds the end of the dishwasher’s cycle, and just like that, he was off again. For another hour, this poor child was experiencing an emotional storm that I felt ill-equipped to help him weather.

The worst part of all this was not the screaming. It was not the panicked running around and frantic scrabbling with the dishwasher. The worst thing by far was the look in George’s eyes. He kept looking directly at me, trying desperately to communicate – something. If the eyes are indeed the window to the soul, then my son’s soul was frustrated, unspeakably sad, desperate – almost tortured. It broke my heart to see him that way, to see him in such obvious pain and to be unable to help him.

Much later, when everything was finally quiet and when the entire household (sans me) was asleep, the question of why kept running through my mind. What happened to trigger the worst meltdown we’ve seen in about a year? Could the light and the dishwasher have suddenly morphed from a source of anxiety to a source of full-on panic? Was the hot water just too much for him to handle? If I had not been stressed and agitated, would the situation have escalated to such an extreme degree? In an interesting theory offered by my mother – one that resonates with me – could yesterday’s earthquake have unsettled George and made him more susceptible to stress?

As with most things autism-related, there are no definitive answers. Every question just spawns more questions. All I can really do is go with my instincts and strive to be the best mom I can be.

(Photo credit: http://www.flickr.com/photos/powazny/3782692376/. This picture has a creative commons attribution license.)

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Autism And Adolescence: Preparing For The Storm

I was educated in the 80’s at a girls-only Catholic school that was run by nuns. The school was high on academic excellence, and a high percentage of its graduates went on to achieve some pretty impressive things. At the same time, though, the school fell flat where it came to life skills training, and many of those people who wound up in noteworthy careers also struggled in various areas of their personal lives.

Throughout high school, I frequently found myself being summonsed to the principal’s office. The principal was a mean old nun named Sister Elizabeth, and she hated me simply because I was not a clone of my cousin, who she had taught at a different school several years previously. Every visit to her office was the same, regardless of what alleged infraction had sent me there. First, Sister Elizabeth would ask me why I couldn’t be like my cousin, and then she would put on a grave face and say, “Whether you throw a teaspoonful of mud or a bucketful of mud, you’re still throwing mud.”

What the hell was that supposed to mean?

I mean, I was the shy, socially awkward kid in my peer group. I wasn’t exactly a trouble-maker, and when I did hit a difficult patch in eleventh grade, my troubles were directed towards myself, and barely caused a ripple beyond my immediate group of peers. I was never caught smoking under the bleachers, I never swore at a teacher, and I never had a pack of condoms fall out of my pocket while running down the hall. Interestingly enough, the person who all of this did happen to was never, to my knowledge, sent to see the dreaded Sister Elizabeth.

What the school laughably called “sex education” happened in the form of a couple of talks given to us by outside counselors when I was somewhere around tenth grade. The talks had the following central theme: if you have sex before marriage, you will undoubtedly go through teen pregnancy and a life of poverty and deprivation, and your child will be a juvenile delinquent addicted to drugs, and when you die you will go to hell.

We were given some very basic information about the different forms of contraception, and then told not to use any of them on the grounds that they were a sin. The only acceptable forms of birth control, we were told, were abstinence and the Rhythm Method (which, of course, was reserved strictly for marriage, because of the whole going-to-hell thing associated with sex).

In retrospect, the timing and the subject matter of these sex education talks was kind of funny. By the time we had to listen to them, most of my peers had been sexually active for at least a year and probably knew more about contraception than the people delivering the talks. To my knowledge, there was only one teen pregnancy in my peer group, and it happened after we had all graduated high school.

Things today are very different. Kids are maturing physically at a younger age than my generation did, and for the most part, society seems to have let go of the notion that teens just shouldn’t have sex. There is an acceptance that they are going to do it anyway, so we may as well equip them with the tools and knowledge to do it safely. I am all for that, although I certainly wouldn’t want my boys to be experimenting with sex until they have reached  a certain level of emotional maturity.

The question that is plaguing me is this: how do I deal with this topic where my son with autism is concerned? He may only be turning eight in September, but time flies, and before we know it he will be entering the world of pre-adolescence. His physical maturation will far outpace his social development, and I worry about the time when he will have physical drives that he will not be emotionally equipped to deal with.

And so I have decided to start seeking out resources and advice on this topic now.

That way, when the storm of adolescence hits, I may have a fighting chance of helping my son navigate his way through it all.

(Photo credit: http://www.flickr.com/photos/alamosbasement/3661120171)

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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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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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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/)