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For James On His Birthday

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To my darling son James,

Nine years ago today, you finally decided to leave the comfort of the womb and join us in the world. You were a week overdue: either you were very comfortable where you were, or you figured that we would need an extra week of quiet before the adventure began.

The day of your birth was incredible, filled with little moments that I will never forget – like the little kid in the hospital coffee shop who was convinced that I was Santa Claus. You can’t blame him: it was Christmas morning and I had a massive belly and a Santa hat. The best moment of all, though, was when you came flying into the world like a cannonball, screaming in outrage. There was never any doubt that you had a very healthy pair of lungs and an abundance of energy.

Since that day, you have filled our lives with a very special kind of magic. You are never afraid to explore and discover not only what is in the world, but what is within yourself. Your massive imagination takes all of us on weird and wonderful journeys, and the front of my fridge is covered with your fabulous artwork. Your creativity combined with your love of animals has given us a zoo of animals that have been lovingly crafted by you. As I write this, you are transforming ordinary cardboard into a set of Wild Kratts creature power disks.

You have the biggest heart of anyone I know. You are one of life’s true givers who experiences absolute joy through the act of making other people happy. Every single day, I am on the receiving end of your spontaneous hugs and little handmade gifts and notes. I see the kindnesses you extend to your friends without even having to think about it. Being a caring person is so much a part of who you are that your school gave you an award for empathy.

The love that you have for your brother is genuine and complete. You do not take anything for yourself without first making sure George has something too. If George’s autism is making things difficult for him, you calmly and patiently do whatever you can to soothe and comfort him. You play with him, you share with him, you protect him. You take care of him so beautifully, and yet you think of him as your hero.

I know that sometimes I cannot keep up with your boundless energy and your constant chatter. But I absolutely love that those things are a part of your character, and I would not change a single thing about you.

I love you, and it is a joy and an honour to be your mom.

Happy birthday.

Lots of love,
Mommy

 

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2012: Moments To Remember From Around The World

When I was a kid, New Years Eve was a family occasion. We would all gather – cousins, aunts, uncles and my grandmother – to ring in the New Year together. Everyone would get sparkling wine (even us kids were allowed a token amount) and beneath the stars in the warm South African summer, we would count down to The Big Moment. As the clock stuck midnight, we would toast each other with the sparkling wine, and then we would stand in a circle, link arms and sing Auld Lang Syne.

My mom always cried during these moments, and when I asked her about it once, she answered, “I don’t know why. I just hate New Years Eve.”

As I’ve grown older, I’ve noticed a curious pattern that I suspect my mom unwittingly followed. As December 31st approaches each year, we tend to be tearfully nostalgic for the good things we are leaving behind, but in fear of the bad things we think will be carried forward.

What if we approached it the other way round? What if we decided to leave the bad stuff behind and bring the good stuff into the new year with us?

In that spirit, I recently asked people to tell me about their best moments of 2012.

Alison from Malaysia had a pretty good year as she gave birth to her second child. It doesn’t get much better than new life, does it? She describes her pregnancy as a race, and she got the best possible prize at the end of it.

Like me, Cheryl is a special needs mom living in Ontario. We share many of the same frustrations when it comes to getting services or funding for our kids. Cheryl hit a sweet spot in 2012 when she took on an insurance company and WON! She got a medication covered for her daughter, who has cerebral palsy, and she helped pave the way for thousands of other parents in a similar situation.

I can also relate to Melanie from Japan, who’s daughter has difficulty making friends. My son, who has autism, does not have any friends apart from his brother, and I know how hard it is to watch your child sitting alone in the playground simply because he doesn’t know how to make friends. Melanie had a lovely moment last year when her daughter made a new friend.

As parents, we bask in the accomplishments of our children, and Purnima from India shares her young son’s success as he played a key role in his school’s Annual Day Program.

My cousin Gillian (a.k.a. “Mug”), who lives in the back of beyond Tasmania, was given that all-too-rare commodity in 2012: the gift of time. She has a job AND a farm, and judging from some of her adventures, farm animals can sometimes be more wayward than children. So when she was able to start working four days a week instead of five, it was a welcome break for her.

(On a side note, I have a confession. Before Mug moved to Tasmania, I didn’t realize it was an actual place. I thought it was a mythical place with a mythical devil.)

Tania from Puerto Rico did a fair amount of traveling last year. When her husband had to go to Paris on business, she went with him. On the day of their arrival, they went to a live performance by their favourite band, Coldplay. Coldplay has never performed in Puerto Rico, so this was icing on the cake for Tania.

For some people, the best moments of 2012 arose from something bad. Margie from Arkansas had a great year that culminated in her obtaining a hard-earned Bachelors degree. As impressive as that was, it paled in comparison to the time she found out that her fiancee was alive and more or less in one piece after being hit by a car.

Karyn from New Zealand had one of those moments as well, when her eldest son had a surfing accident. All three of her boys handled the crisis remarkably well and made Karyn realize that she can enjoy parenting more, knowing that the groundwork has been laid.

My own year was a perfect example of good moments arising from bad events. In February, a beloved aunt died in a freak accident, and I flew to South Africa to be with family. My time there was bittersweet. There was sadness and shock as we all started the process of calibrating ourselves to a life without someone who had been very much loved. But there were also moments of joy and laughter, of peace and togetherness.

One moment in particular stands out for me.

My brother and I went to see a movie together. This in itself was a momentous occasion, not only because my brother and I hardly ever spend time together on account of living on different continents, but because it had been years since I had seen a movie made by someone other than Disney Pixar.

After the movie, we went to the rooftop bar of a nearby hotel for a drink. As we sat there talking and enjoying the last of the day’s sunlight together, I realized that this was one of those perfect moments in life – one of those moments that you want to capture and carry around with you forever.

What was your best moment of 2012? What good stuff are you bringing with you into 2013?

(Photo credit: http://www.flickr.com/photos/kevgibbo/706220224. This picture has a creative commons attribution license.)

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The Birth Of Brotherhood

On the evening of Christmas Eve 2005, my husband and I lay on our bed with our son George between us. Then a little more than two years old, George was doing his usual pre-bedtime rolling around with Mommy and Daddy. It had been a nightly ritual from the day he was born. He would lie quietly with us while he drank his bedtime milk, and then he would spend ten minutes climbing onto my husband and then falling off in fits of giggles. It was a time that we treasured, but on this particular evening, I was feeling undertones of melancholy. My body was telling me that my second child would be born the following day. Which meant that this ritual was about to come to an end – or at least, dramatically change. In an odd way, I had already started feeling nostalgic for George’s only-child days.

It’s not to say that I wasn’t happy about the pending arrival. I couldn’t wait for this addition to my family. I was excited about bringing home a baby brother or sister for George, even though it would be a bit of a surprise for him to suddenly have an entire other human being in the house. Throughout my pregnancy, he hadn’t shown any signs of understanding what was going on, other than that he wasn’t allowed to jump on Mommy’s very large belly.

The baby did indeed arrive the following day, Christmas Day 2005. Having languished in his floaty home for a week past his due date, he was now very eager to get out and start living. I spent James’ first two days of life in a haze of exhaustion. When I had time to think, it was to wonder how George’s introduction to his new sibling would go.

As it happened, James started crying while we were driving him home for the first time. He wanted to be nursed, yet again. All about the boob, that one was. When we got him home, I settled down on the couch with him to nurse while my husband retrieved George from my mother-in-law. When George came bounding into the room to jump on the couch, I told my husband not to stop him. George stopped short at the sight of this tiny being attached to me, but although he was clearly surprised, he did not seem to mind the being’s presence. He didn’t say anything about it, but George was saying next to nothing at that time anyway.

For the first few weeks, George seemed a little bemused by James. I had the impression that he did not really see James as a person, but as an extra thing lying around the house. This was illustrated to me perfectly one day when James was lying on his back on the floor. We had one of those big foam alphabetic floor puzzles, and James was lying on that – in the exact spot where George wanted to play. George very matter-of-factly went up to James and took one tiny ankle in each hand. He then proceeded to drag James off the floor puzzle and onto the carpet. He was not rough or aggressive about it. He was merely moving something from Point A to Point B while I cracked up laughing. James didn’t seem to mind being displaced in this way. He just kind of looked at George with an air of resignation.

I will never forget the day I saw a shift happen in George – a shift from indifference to genuine brotherly affection. I had just changed James’ diaper and he was lying in the middle of my bed. George came in from wherever he had been and grabbed James’ leg as he was climbing onto the bed. James gurgled and waved an arm in response to being touched, and George stopped and stared at him, as if realizing for the first time that there was a person in there. His facial expression changed from one of curiosity to one of absolute tenderness. He reached forward, and with both arms, he reached out, lifted the baby and drew him close in a protective embrace.

It was the first time George spontaneously hugged James.

In that moment, I felt that my two sons truly became brothers.

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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/)