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Autism: Running To A Better Future

September 4, 2011 By

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)

Filed Under: Asking for Money, autism, fundraising, running, Running for Autism, Scotiabank Toronto Waterfront Races, Sponsorship Tagged With: , , , , , , , , ,
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Autism Meltdown: Surviving The Storm

August 24, 2011 By

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.)

Filed Under: anxiety, autism, Meltdown, parenting, Special Needs Tagged With: , , , , , , ,
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Endings And Beginnings

August 4, 2011 By

It was bittersweet, that freezing cold day in February, 2003.

I was at a conference with a number of my co-workers, which really meant that I was subjected to a day of boring talks that I had to pretend to be utterly fascinated by. The trade-off was the free lunch, and I have to give the conference venue credit: it was outstanding grub.

After lunch, we had a bit of free time before the session reconvened. I decided to check the messages on my cell phone, so I turned it on and started fiddling with the buttons to get to the voicemail. When it vibrated in my hand, I almost jumped out of my skin. The incoming call was coming from a number I did not recognize.

Gerard, calling from a payphone. At the hospital, of all places.

He was calling to deliver bad news: his dad had been diagnosed with colon cancer. There was a possibility that it had spread to the liver. Tests were underway to find out.

I whispered a few words of explanation into the ear of one of my colleagues and ran to my car. An hour later, I was giving my father-in-law a hug at the hospital. He was looking remarkably cheerful for someone who had just received dire news. Either he was using humour as a coping mechanism, or the doctors had done a really good job of giving him hope.

Much later that night, Gerard and I left the hospital and went home. While he was Googling something-or-other, I locked myself into the bathroom and surreptitiously peed on a stick.

Three minutes later, the stick told me that while one life was fading away, another one was just beginning.

At our first ultrasound a couple of weeks later, we held hands as the technician showed us our baby on the monitor. His heart was beating solidly; and even though he was about the size of a grape, we could clearly see his little legs waving around.

Everything looks great, the technician told us. This is a good-looking baby.

Gerard and I finally allowed ourselves to feel a lick of hope for the first time since we found out we were having a baby. We had suffered a miscarriage several months previously; we had not really trusted that we would actually get to the point of seeing a healthy baby. We had several weeks to go before we would pass the point at which our previous pregnancy had failed, and we would hold our breaths until then. But seeing a strong, healthy baby was something that we had not experienced.

After the ultrasound, we drove straight to Gerard’s parents’ home to see them. Now that we had gone through the ultrasound, we felt OK about telling them. We showed my father-in-law the ultrasound picture, and said to him, “If the baby is a boy we’re going to call him George, after you.”

With his eyes flashing with humour, my father-in-law said, in his characteristic Irish brogue, “Aaaah, don’t do that to the poor child!”

Less than a month later, I stood in the cemetery with snow swirling around me as my father-in-law was laid to rest. As I said goodbye to one George, my hands protectively cradled the belly in which another was growing .

As one life ends, another begins. And the spirit of the old lovingly watches over the soul of the new.

(Photo credit to the author.)

Filed Under: Baby, Cancer, Death, life, Pregnancy, Pregnancy Loss, Ultrasound Tagged With: , , , , , , , , , ,
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Why Autism?

July 19, 2011 By

“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/)

Filed Under: Aspergers Syndrome, autism, Autism Spectrum, Causes of Autism, Childhood, Developmental Delay, Environment, Genetics, Learning Disability, Social Anxiety, Speech Delay, Vaccines Tagged With: , , , , , , , , , , , , , ,
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Sleep Interrupted

July 18, 2011 By

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/)

Filed Under: Children, Illness, life, parenting, running, sleep Tagged With: , , , , , , , , , , , ,
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The Cow Whisperer

July 15, 2011 By

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)

Filed Under: Animals, autism, Communication, Special Moment Tagged With: , , , , , , , , ,
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95 Days And 6 Hours

July 13, 2011 By

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.

Filed Under: autism, Countdown, health, life, running, Running for Autism, Training Tagged With: , , , , , , , , , , , , , , , ,
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Lucky Number Six

July 12, 2011 By

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.

Filed Under: autism, parenting, Uncategorized Tagged With: , , , , , , , ,
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Not Autistic Enough?

July 11, 2011 By

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/)

Filed Under: Accurate Portrayal of Autism, autism, Documentary, Sensationalism, Television Tagged With: , , , , , , , , , ,
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Out Of The Darkness: Overcoming Post-Partum Depression

July 4, 2011 By

This post was a hard one to write, even though the events described happened several years ago. It took me a number of days to get this all down, and it has taken another few days to actually decide whether or not to publish it. My hope in publishing this is that it will make a difference to somebody. Maybe you’re a new mom who is going through post-partum depression. Or perhaps you know a new mom who seems to be retreating into herself. If your life is touched in any way by post-partum depression, know that there are things that can be done. Talk to your friends and family, seek help from medical professionals. And whatever you do, don’t lose hope.

My younger son James was born at a tumultuous time in my life. I had lost my dad to cancer a year previously, and me and my husband were going through some challenging times in our life together. At around that time, we were also starting to realize that there was something wrong with George and we had started to experience the frustration of wrangling a referral out of our family doctor.

I sometimes wonder, when I look back, whether all of these factors led to the post-partum depression I went through. Or perhaps it would have happened anyway. This is an illness that can strike the most unlikely of victims.

I knew within a couple of days after giving birth that the utter bleakness I was feeling was more than a case of “baby blues”. What I had experienced with George two years previously – the mild sadness, the anxiety, the tendency to be emotionally weird – that was baby blues. What I was going through now was completely different.

On New Years Eve that year, when James was six days old, I was sitting in front of the TV nursing my newborn while I watched CNN coverage of festivities around the world. At about five to midnight, Gerard brought me a cup of tea, and as he set it down beside me, he asked in surprise, “Why are you crying?”

I was just as surprised as he was. I had not even noticed the floods of tears rolling silently down my cheeks.

Even though I was filled with this feeling of terrifying – emptiness – I did not initially label what I was experiencing with any name. The first time I thought of the term post-partum depression in relation to myself, James was about two months old. A replay of an old Oprah episode was on – the episode where Tom Cruise spouted forth about how there was no such thing as post-partum depression, and how all new moms could solve all of their problems by eating right and exercising.

What an idiot, I remember thinking. This thought was followed by the sudden light-bulb moment in which I realized that I was suffering from post-partum depression.

There was a good news and a bad news aspect to this discovery.

The good news was that I now had a name for what I was going through. I had something to Google, and sure enough, on every checklist I found, I was able to put checkmarks beside all but one or two of the signs and symptoms. I had a basis for research, and I felt some validation that I wasn’t simply going mad.

The bad news was that I too far down the path of post-partum depression to be able to actually do anything about it. Talking to someone – my doctor, my friends, or even my husband – would have taken energy. And that was something that I had in very short supply. Just getting through the day was an accomplishment. Once I had attended to the basic needs of my kids – feeding, diapering, bathing, dressing – there was nothing left over. No reserves of energy whatsoever.

And because I didn’t do anything about it, my illness got steadily worse and worse. I didn’t talk to anyone about it, and no-one recognized the signs. My friends and family saw me retreating further and further into myself, but they did not know why. They saw that the kids were obviously being taken care of, so they didn’t realize that there was anything to be concerned about.

Even when my depression was at its very worst, I was not suicidal in the sense of wanting to actively go out and kill myself (again, that would have taken energy that I just didn’t have), and I was never in danger of harming the kids. Their health, safety and happiness were my top priorities – my only priorities.

I did start to think about dying, though. I fantasized about what it would be like to die in a car accident, or to have a sudden heart attack, or to be shot during a bank robbery. I thought about being on a plane that had a bomb on it. What if I had some undiagnosed condition, and simply went to sleep one night and didn’t wake up?

My depression went untreated for over a year, and by then I honestly thought that I was lost forever. Right after George was diagosed with autism, I went to see my family doctor, who had received a copy of the diagnostic report. I was seeing the doctor about something unrelated – an old ankle injury was acting up – but he immediately picked up that there was something seriously wrong.

My doctor, who had been absolutely dismal at detecting signs of early developmental delay in George, was able to tell right away that I was going through a major depression. He put me on medication and insisted on seeing me once a week until I was out of the woods.

The pills were both good and bad for me. The bad part was that they made me feel angry. While I was taking them, I was mad at everyone and everything. Back then, I didn’t even have running as a stress coping mechanism, so the anger just sat there and frightened the living daylights out of me.

The good thing, though, was that the pills helped with the depression. I started feeling some energy again – even though the energy itself was negative, it was a start. Negative energy was better than the absolute empiness and desolation that I had been feeling for so long now.

And so gradually, I started finding my way back. With time, I rekindled my relationship with my husband, and I discovered the true joy of parenting. I went back to work and started to find my own identity again. I started running. Little buds of hope started to grow within me.

I found my way out of the darkness, and into love and light.

Filed Under: Help, Illness, Medical, parenting, Post-Partum Depression Tagged With: , , , , , , , , , , , , , , , , ,
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